It's October 2017, its also the anniversary of 5 years since my symptoms started but I'm starting on a new positive because at the start of the week my boss and cousin made me change GP surgery. I haven't visited my GP in a long while due to the arrogance and lack of care towards my symptoms. I refuse to go somewhere that makes me feel stupid. I have lost trust in most doctors I've came across but I'm giving my new GP surgery a chance. I met the new doctor who was very pleasant and listened to me. I couldn't go into all details or I would of been there a week to explain everything. I do have a fear that once the new GP receives my notes that he believes what is written in them and not me. Consultants letters are lets face it, of more weight and valued more than a patient sitting telling a GP the situation. The new GP (lets give him a name, I shall call him Garfield) Garfield might think I am a hypochondriac and be more in favour of the fact that all neurologists state I have not had a dissection and if that is the case I won't be able to discuss anything to do with my symptoms that I believe have come from the dissection, I will only be able to discuss the symptoms relating to the colloid cyst.
Anyway I am waffling on, the reason I went to see Garfield was I recently was on a flight and became unwell afterwards spending three days flat on my back because my head had immense pressure pushing to the top of my skull, I was unsure if the flight had moved the cyst. I could hardly stand and had to lie down. I haven't had that for a while but in this instance it was a different head pressure and headache and the tinnitus was so loud, the pulsatile tinnitus was just its normal but the ringing tinnitus was louder than normal, it still is and the headache is lingering. I can differentiate between the headache near the base of my skull and the headache on top and I believe the one on top is from the cyst.
Garfield and I have spoken about the best plan of action regarding the cyst so I will get my PI Wanderer cap on and do some investigating on the best person to see for the cyst or little colloid cunt as I have been referring to it. Lets hope I don't slip up when chatting to Garfield!!!
All for now your Whooshing Whirring friend
Friday, 6 October 2017
Monday, 4 September 2017
Sometimes I have no words except sweary ones! September 2017 Update
Do you ever have a strange random thought that some bastard is out to get you? Anyway I never got the promised telephone call from London. Nor did the response only take a few weeks, to be exact I was told around 3-4 weeks.
I received a letter/report on the 17th June 2017 from Dr Matharu it states it was typed on the 31st March. I was a day patient from the 28th to 31st March so if it was indeed typed on the 31st my scans must of been reviewed the previous two days in which they could of told me what the findings were. It certainly was a long time to wait all of April, all of May and half of June to receive a letter, maybe it got lost on its long journey from England to Scotland.
The opinion on my scans MRI 2013 and CTA 2015: NO DISSECTION IDENTIFIED. He concurs with his friend Dr Tyagi that a dissection is not the cause of her headache. He also states "he would be happy to see her again on the understanding that she accepts our opinion regarding the dissection"
My Expert Opinion: It is very unfortunate and strange that doctors too in London have issues with their eyesight. Also I might add that there were 3 scans to be reviewed. My MRA 2014 was not reported on and there is no reason given as to why it was not reported on. I gave two copies of my MRA as they said there was an issue with it, the second copy was posted and there was no issue with it as I had it copied and tried in several computer systems and all images were viewable.
Interestingly Dr Matharu states I have a colloid cyst on the left of the foramen Monroe in the third ventricle of my brain that was not visible in 2013 and a microadenoma can not be ruled out. I have previously asked if there was anything showing on my pituitary gland due to some hormone problems and I was told no.
Coincidence that its on the left? The report does not state if some of my recent symptoms could be caused by a colloid cyst. Remember I told doctor's about the newer type of headache at the top of my head and I had a feeling something else was going on.
My care has been transferred back to my GP and Neurologist Dr Tyagi. Its now September and I have heard nothing. I have had to search the internet to find out what a colloid cyst is.
I phoned my GP surgery to see if they too had received the letter and the receptionist said they had, she confirmed I was referred to neurology.
So if you need a recap, I was sent to London for a second independent opinion in January (only it wasn't independent as it was my neurologists friend) In January I was told along with my husband what I had was a New Daily Headache and that I did not have a dissection previously to cause my symptoms. I was told 100% I did not have a vertebral artery dissection. I disagreed and told him so. I questioned this as my scans had not been reviewed. I was then invited back to London in March for a review of my scans, again I was told nothing would be found yet they still hadn't reviewed my scans. Scans eventaully reviewed and lettered mid June. I should not have been referred to a neurologist regarding my scans, I wanted an opinion on my scans to speak with a Neurointervention specialist not to be speaking with a Neurologist who assures me his radiology department could not see anything. Why can any other joe bloggs see my scans are not normal?
I'm still whooshing,whirring, headaching and vertigoing along with a little colloid cunt of a friend.
I received a letter/report on the 17th June 2017 from Dr Matharu it states it was typed on the 31st March. I was a day patient from the 28th to 31st March so if it was indeed typed on the 31st my scans must of been reviewed the previous two days in which they could of told me what the findings were. It certainly was a long time to wait all of April, all of May and half of June to receive a letter, maybe it got lost on its long journey from England to Scotland.
The opinion on my scans MRI 2013 and CTA 2015: NO DISSECTION IDENTIFIED. He concurs with his friend Dr Tyagi that a dissection is not the cause of her headache. He also states "he would be happy to see her again on the understanding that she accepts our opinion regarding the dissection"
My Expert Opinion: It is very unfortunate and strange that doctors too in London have issues with their eyesight. Also I might add that there were 3 scans to be reviewed. My MRA 2014 was not reported on and there is no reason given as to why it was not reported on. I gave two copies of my MRA as they said there was an issue with it, the second copy was posted and there was no issue with it as I had it copied and tried in several computer systems and all images were viewable.
Interestingly Dr Matharu states I have a colloid cyst on the left of the foramen Monroe in the third ventricle of my brain that was not visible in 2013 and a microadenoma can not be ruled out. I have previously asked if there was anything showing on my pituitary gland due to some hormone problems and I was told no.
Coincidence that its on the left? The report does not state if some of my recent symptoms could be caused by a colloid cyst. Remember I told doctor's about the newer type of headache at the top of my head and I had a feeling something else was going on.
My care has been transferred back to my GP and Neurologist Dr Tyagi. Its now September and I have heard nothing. I have had to search the internet to find out what a colloid cyst is.
I phoned my GP surgery to see if they too had received the letter and the receptionist said they had, she confirmed I was referred to neurology.
So if you need a recap, I was sent to London for a second independent opinion in January (only it wasn't independent as it was my neurologists friend) In January I was told along with my husband what I had was a New Daily Headache and that I did not have a dissection previously to cause my symptoms. I was told 100% I did not have a vertebral artery dissection. I disagreed and told him so. I questioned this as my scans had not been reviewed. I was then invited back to London in March for a review of my scans, again I was told nothing would be found yet they still hadn't reviewed my scans. Scans eventaully reviewed and lettered mid June. I should not have been referred to a neurologist regarding my scans, I wanted an opinion on my scans to speak with a Neurointervention specialist not to be speaking with a Neurologist who assures me his radiology department could not see anything. Why can any other joe bloggs see my scans are not normal?
I'm still whooshing,whirring, headaching and vertigoing along with a little colloid cunt of a friend.
Tuesday, 16 May 2017
Why clinical suspicion can save lives!
This link tells the story of a man suffering from unusual symptoms, he was particularly affected by pulsatile tinnitus, the story appeared in the NY times whereby readers are offered to try and diagnose the case https://well.blogs.nytimes.com/2016/01/07/diagnosis-lisa-sanders-pain-tinnitus-ringing-in-the-ears/
The following link gives the diagnosis and shows that if the right doctor is consulted a cause can be found of unusual symptoms, the person to finally diagnose the complicated case was in fact Dr Maxim Shapiro, the very Neurointervention specialist that I reached out to back in 2015 and gave his expert opinion on my scans. Enjoy reading his findings
https://well.blogs.nytimes.com/2016/01/08/diagnosis-lisa-sanders-pulsatile-tinnitus-fistula-chest-pain-hearing/?ref=health
The following link gives the diagnosis and shows that if the right doctor is consulted a cause can be found of unusual symptoms, the person to finally diagnose the complicated case was in fact Dr Maxim Shapiro, the very Neurointervention specialist that I reached out to back in 2015 and gave his expert opinion on my scans. Enjoy reading his findings
https://well.blogs.nytimes.com/2016/01/08/diagnosis-lisa-sanders-pulsatile-tinnitus-fistula-chest-pain-hearing/?ref=health
An emergency doctor explains his Vertebral Artery Dissection
An emergency physician's story on how his symptoms developed and how he was diagnosed with a left vertebral artery dissection http://blog.thesullivangroup.com/vertebral-artery-dissection
May 2017 Update
I received a letter back in March giving me two weeks notice for my return appointment in London. Fortunately Mr Wanderer and I managed to arrange time off work and travelled down. I attended the hospital between 27th-31st March. I'd class this visit as organised chaos. I logged each day in my diary. On the 27th I arrived and was booked in and taken for a blood test. I then met with a female registrar who takes some notes. I was told Dr Matharu had yet to receive information and scans from Scotland. This was my second time travelling to London and the doctors had still not reviewed my scans. After a wait I was invited back in to speak with Dr Matharu and the registrar, Dr Matharu said there would be no problem as they were doing a scan in my time there. I wasn't happy about this and I offered to loan them my copies which I had taken with me as I had a feeling my scans wouldn't have been received. My discs were taken away and copied, I was told here was an issue with one disc my Mra from 2014. I asked what the issue was but no one told me. I said I would post another copy down. (I posted another copy on the 7th April with details) I also included a letter of some of my concerns. On the Wednesday 29th I met with Dr Matharu and he said if anything at all was found on my scans he would let me know immediately when I got home by telephoning, he said it would take around 3 weeks.
During my time in London, I had two injections, a blood test, an ecg, a brain scan and a visit to a Neurotolgist who said I had a balance issue. I received a letter two weeks later from him which stated visual vertigo was his diagnosis.
I am still waiting on the opinion and results of my scans from Dr Matharu after reviewing and comparing my old and new scans.
Your still Whooshing & Whirring friend
During my time in London, I had two injections, a blood test, an ecg, a brain scan and a visit to a Neurotolgist who said I had a balance issue. I received a letter two weeks later from him which stated visual vertigo was his diagnosis.
I am still waiting on the opinion and results of my scans from Dr Matharu after reviewing and comparing my old and new scans.
Your still Whooshing & Whirring friend
Sunday, 12 February 2017
Words of wisdom
In all the reading I have done on my persistent symptoms in trying to gain a diagnosis and trying to help my doctors see that my symptoms are real, the following quote could not be more apt, to all the Doctors I have met and to all who have dismissed me "It is unwise to be too sure of one's own wisdom. It is healthy to be reminded that the strongest might weaken and the wisest might err." ~ Mahatma Gandhi
Sunday, 22 January 2017
January 2017 Update
Mr Wanderer and I travelled to London from Scotland for my appointment on Wednesday 18th January. We arrived at The National Hospital for Neurology and Neurosurgery at 10am we were met with a very dour woman/nursing assistant who took my blood pressure and my weight. A smile would of gone a long way, but I'm sure she was just having an off day or maybe recovering from a wine headache. Would you believe the scales were 1.5 stone out which meant I'd put on a stone and a half within a day travelling from Scotland to England, thankfully I lost the 1.5st by the time I'd got back to Scotland. We met first with a Dr Leckie/Lecky? he welcomed us into the room and explained he had a Scottish family connection and had done his training there. He showed me the referral letter from Dr Tyagi which I had a copy of in my bag, he said it was a basic referral and we would start at the beginning and that's when I relayed all my symptoms on when they started. He focused on the headache and seemed to disregard the pulsatile tinnitus explaining that it was tinnitus with a pulsatile nature, I went on to explain that in America it now had a diagnosis code of its own and was regarded as a separate symptom from the normal ringing buzzing tinnitus. I went through my symptoms in detail and gave enough information on how the noise in the left of my head started one evening followed by the headache the next morning. I went on to say about the other symptoms developing and how I'd gone to my GP several times, A&E, ENT, changed GP surgeries and arranged to have private scans carried out. I explained that I was convinced the symptoms started after painting my ceiling over two days and had relayed the same information to each Doctor I'd seen. Dr Leckie said "I see that's where the dissection story comes from" I mentioned I could hear the sound in my head with a stethoscope and although he listened later towards the end of the consultation he couldn't hear it, to be honest there was background noise and I couldn't pick it up myself, not that it matters I know the noise in my head is blood pumping through the section of my vertebral artery that has had a previous tear. Dr Leckie said he seen many patients with vertebral artery dissection and all had serious strokes. (For note not everyone who has a vertebral artery dissection has a stroke and some can present with just headache or just neck pain) I explained how I'd tracked down doctors on the other side of the world and sent my scans and symptoms and all had came back with the same diagnosis however no doctor in Scotland could see on the scans what the others were reporting, neither was there much investigating into my symptoms or trying to match them up to what was showing on my scans. I also mentioned that Dr Tyagi had on his paperwork it was a carotid artery dissection being questioned. I made it very clear that at no point was the carotid ever being questioned (this was a mistake that Dr Tyagi made) . I also explained that when I'd had a hospital stay for the drug infusion back in 2015 that two consultants spoke with me in regards to my scans and could see no evidence of a carotid dissection (again wrong information and wrong artery) I asked Dr Leckie if he had any of the reports or scans and he said no. I then gave him a copy of the report from Dr Shapiro in New York. Dr Leckie had asked how my health was overall and I said it was very good, I suffered from Hypermobility Syndrome sometimes known as EDS 3 but that I had managed it well over the years and kept my muscles toned with walking. Mr Wanderer and I were then asked to take a seat outside in the waiting area and then I would be seen by Dr Matharu.
We waited around 15 minutes outside the room and could hear conversations taking place with Dr Leckie relaying the information to Dr Matharu, we were then invited to speak with both doctors. Dr Matharu focused on diagnosing my EDS hypermobility and went through the Beighton score with me which I've already had done years previously by a Rheumatologist. I was a bit miffed on why he was focusing on it but then I realised he had already diagnosed me before I entered the room from the information I gave to Dr Leckie. Dr Matharu stated he seen many patients with EDS and what I had was a New Daily Persistent Headache Syndrome with no underlying cause but that it was linked to EDS. I asked why now would I suddenly have a new headache accompanied by many other severe symptoms when I'd never been bothered by headache before? Dr Matharu moved on to say that I had developed the condition. I'd actually read about this particular headache a few years previously and ruled it out as I was never sick or suffered nausea, the pattern didn't fit. I listened for a bit then interrupted to state I didn't agree and that I knew the cause of my headache was to do with the previous missed tear in my artery. Dr Matharu said it is what it is you have a daily persistent headache, he said he agreed with his colleagues findings and that there was no vertebral artery dissection and although new daily headache occasionally had an underlying cause, mine was a primary condition and he seen many patients with EDS who had that same new daily headache. I said I didn't agree and that Dr Tyagi had been reporting on the wrong artery, Dr Matharu then stated he had since received further communication from Dr Tyagi to say my scans had been re looked and there was no vertebral dissection. (I was obviously not copied in to that communication yet again) I went on to ask why I can see lines on my scan images and tried to show an image on my phone, Dr Matharu refused and said they had the best doctors and he was 100% sure that I had not suffered a dissection. Dr Leckie then asked even if we did find a dissection what do you think we can do, I explained about Dr Shapiro's report and how he could close off the false side of the artery to stop my symptoms, both doctors said they wouldn't do that and that I would be creating problems for myself. I felt myself becoming angry, they were both being arrogant in answering my questions. Did they honestly expect me to sit quiet after travelling down from Scotland for a second opinion when they had not read reports or my scans and tried overwhelmingly to convince me that my diagnosis was that of daily persistent headache caused by EDS? I continued to talk and state that something was causing my symptoms. Dr Matharu eventually offered to repeat scans and compare them and I'd be invited back to London, he continued "I can assure you we won't find anything" I don't doubt his intelligence but he was certainly doubting mine. I had seen the scans, he had not! I tried again to show an image on my phone but was brushed off, I then repeated again please look at this one image where you can see an intramural haematoma and at that I took my phone out my pocket and thrust it towards them, both doctors stated there wasn't anything and had a few whispers to each other, Dr Leckie said it was hard to tell from one image, I reminded him that there were several more images showing the same, Dr Matharu stating don't worry about it we will compare all your other scans to the new scans. I felt his manner was self assured that he was right and I was wrong, he repeated they had the best doctors, in my opinion I had yet to see the best of doctors. Not a single Doctor has taken Dr Shaprio's report seriously. I asked do you believe that image is normal as well as the others in Dr Shapiro's report showing a clear line through the artery and Dr Matharu said look I'm happy to be proved wrong but I don't see anything and I don't believe you had a dissection I'm 99% sure I don't think we will find anything. Dr Matharu offered to arrange scans and trial some medication over 5 days, the waiting time would be around 3 months. Dr Matharu's certainty dropped from 100% to 99%.
In my opinion I wasn't given a fair second opinion, I was diagnosed before I entered the room. For both doctor's to diagnose without looking at my symptoms in detail and not having looked at my scans is very poor practice. Having disregarded my other symptoms and Dr Shapiro's report I have no trust in these doctors.
Overall the appointment went how I'd imagined and it wasn't a surprise that my original symptoms were dismissed. No one can explain why I'm having numerous symptoms, no one can explain what's on my scan, no one is willing to link my symptoms to what is clear on the scans. Having studied various literature on dissections and looking at scans I know what is on my scans.
All for now your still whooshing whirring friend
We waited around 15 minutes outside the room and could hear conversations taking place with Dr Leckie relaying the information to Dr Matharu, we were then invited to speak with both doctors. Dr Matharu focused on diagnosing my EDS hypermobility and went through the Beighton score with me which I've already had done years previously by a Rheumatologist. I was a bit miffed on why he was focusing on it but then I realised he had already diagnosed me before I entered the room from the information I gave to Dr Leckie. Dr Matharu stated he seen many patients with EDS and what I had was a New Daily Persistent Headache Syndrome with no underlying cause but that it was linked to EDS. I asked why now would I suddenly have a new headache accompanied by many other severe symptoms when I'd never been bothered by headache before? Dr Matharu moved on to say that I had developed the condition. I'd actually read about this particular headache a few years previously and ruled it out as I was never sick or suffered nausea, the pattern didn't fit. I listened for a bit then interrupted to state I didn't agree and that I knew the cause of my headache was to do with the previous missed tear in my artery. Dr Matharu said it is what it is you have a daily persistent headache, he said he agreed with his colleagues findings and that there was no vertebral artery dissection and although new daily headache occasionally had an underlying cause, mine was a primary condition and he seen many patients with EDS who had that same new daily headache. I said I didn't agree and that Dr Tyagi had been reporting on the wrong artery, Dr Matharu then stated he had since received further communication from Dr Tyagi to say my scans had been re looked and there was no vertebral dissection. (I was obviously not copied in to that communication yet again) I went on to ask why I can see lines on my scan images and tried to show an image on my phone, Dr Matharu refused and said they had the best doctors and he was 100% sure that I had not suffered a dissection. Dr Leckie then asked even if we did find a dissection what do you think we can do, I explained about Dr Shapiro's report and how he could close off the false side of the artery to stop my symptoms, both doctors said they wouldn't do that and that I would be creating problems for myself. I felt myself becoming angry, they were both being arrogant in answering my questions. Did they honestly expect me to sit quiet after travelling down from Scotland for a second opinion when they had not read reports or my scans and tried overwhelmingly to convince me that my diagnosis was that of daily persistent headache caused by EDS? I continued to talk and state that something was causing my symptoms. Dr Matharu eventually offered to repeat scans and compare them and I'd be invited back to London, he continued "I can assure you we won't find anything" I don't doubt his intelligence but he was certainly doubting mine. I had seen the scans, he had not! I tried again to show an image on my phone but was brushed off, I then repeated again please look at this one image where you can see an intramural haematoma and at that I took my phone out my pocket and thrust it towards them, both doctors stated there wasn't anything and had a few whispers to each other, Dr Leckie said it was hard to tell from one image, I reminded him that there were several more images showing the same, Dr Matharu stating don't worry about it we will compare all your other scans to the new scans. I felt his manner was self assured that he was right and I was wrong, he repeated they had the best doctors, in my opinion I had yet to see the best of doctors. Not a single Doctor has taken Dr Shaprio's report seriously. I asked do you believe that image is normal as well as the others in Dr Shapiro's report showing a clear line through the artery and Dr Matharu said look I'm happy to be proved wrong but I don't see anything and I don't believe you had a dissection I'm 99% sure I don't think we will find anything. Dr Matharu offered to arrange scans and trial some medication over 5 days, the waiting time would be around 3 months. Dr Matharu's certainty dropped from 100% to 99%.
In my opinion I wasn't given a fair second opinion, I was diagnosed before I entered the room. For both doctor's to diagnose without looking at my symptoms in detail and not having looked at my scans is very poor practice. Having disregarded my other symptoms and Dr Shapiro's report I have no trust in these doctors.
Overall the appointment went how I'd imagined and it wasn't a surprise that my original symptoms were dismissed. No one can explain why I'm having numerous symptoms, no one can explain what's on my scan, no one is willing to link my symptoms to what is clear on the scans. Having studied various literature on dissections and looking at scans I know what is on my scans.
All for now your still whooshing whirring friend
Thursday, 1 September 2016
Summer 2016 Update
As it comes to the end of summer and nearing 4yrs from when my symptoms first started I am in a dark place. Dark because my headache has never subsided not even for an hour and the more I exert myself the more pressure and pain emits from the side of my neck/base of my skull including the short sharper pains. After not working for nearly two years I have taken up part time employment. Not being entitled to any benefits as I don't have a diagnosis has been a huge strain. Nearly having to put our home up for sale was the last thing I needed. I've had to take a job with lower hours and wages but its a start. I just need to accept that until a doctor has any sort of empathy and decides to carry out an angiogram in the hope of fixing my artery I'm going to be living in this state for the rest of my life and comes with that a lower grade job.
I finally received an appointment for The National Hospital for Neurology & Neurosurgery in London through the post on the 22nd May 2016 to see Dr Matharu or a member of his team on the 18th January 2017. As I've mentioned in earlier posts this concerns me as I have lost trust in Doctors and Dr Matharu is a friend of Dr Tyagi and has written headache reports with him. I personally would of liked an appointment with a Neurointervention specialist who can tell me exactly what is on my scans and can link my symptoms as Dr Maksim Shapiro has done from New York. I am considering being seen at Queens Square Imaging Centre who I have previously been in contact with but again I have reservations due to doctors knowing each other. I just want one doctor to say "I am sorry you have suffered an artery tear and it has not healed properly and you have been left with a false/double lumen, hence you have these awful symptoms, we will try and help fix this by speaking first with Dr Shapiro in New York then we can move forward" And then I fell out my dream from the big fluffy cloud and landed on my head and realised this is the Nhs with some doctors who choose to take no accountability with no transparency when things are missed or delayed with a diagnosis. Please note I state SOME doctors, I have actually met some fantastic doctors through out my years. I've just been unfortunate that the few doctors I have came across have no understanding of what Pulsatile Tinnitus is and have been unable to link all of my symptoms to one underlying thing causing my symptoms
I look forward to my appointment in London and spending all my recently earned wages to get there, one thing for sure is I am armed with information, so much information they won't be able to fill my head with jargon that I can't understand as previous doctors have done because I've learned the lingo. Yep the vertebral artery branches off from the subclavian artery, it weaves in between the cervical spine towards the brain, the vertebral has several smaller arteries branch off before reaching the basilar artery leading to the communicating arteries forming the circle of Willis. The circle of Willis is formed with several arteries meeting in an almost circle hence the name. Honestly the arteries and their jobs is pretty amazing and can keep me occupied for hours reading about them. I am readyfor London, I am Whooshing Whirring Wanderer ready to take on the world oh and any doctor who dismisses me.
All for now your friend Whirring Wanderer
ps look out for my facebook page in the next month about Pulsatile Tinnitus awareness
I finally received an appointment for The National Hospital for Neurology & Neurosurgery in London through the post on the 22nd May 2016 to see Dr Matharu or a member of his team on the 18th January 2017. As I've mentioned in earlier posts this concerns me as I have lost trust in Doctors and Dr Matharu is a friend of Dr Tyagi and has written headache reports with him. I personally would of liked an appointment with a Neurointervention specialist who can tell me exactly what is on my scans and can link my symptoms as Dr Maksim Shapiro has done from New York. I am considering being seen at Queens Square Imaging Centre who I have previously been in contact with but again I have reservations due to doctors knowing each other. I just want one doctor to say "I am sorry you have suffered an artery tear and it has not healed properly and you have been left with a false/double lumen, hence you have these awful symptoms, we will try and help fix this by speaking first with Dr Shapiro in New York then we can move forward" And then I fell out my dream from the big fluffy cloud and landed on my head and realised this is the Nhs with some doctors who choose to take no accountability with no transparency when things are missed or delayed with a diagnosis. Please note I state SOME doctors, I have actually met some fantastic doctors through out my years. I've just been unfortunate that the few doctors I have came across have no understanding of what Pulsatile Tinnitus is and have been unable to link all of my symptoms to one underlying thing causing my symptoms
I look forward to my appointment in London and spending all my recently earned wages to get there, one thing for sure is I am armed with information, so much information they won't be able to fill my head with jargon that I can't understand as previous doctors have done because I've learned the lingo. Yep the vertebral artery branches off from the subclavian artery, it weaves in between the cervical spine towards the brain, the vertebral has several smaller arteries branch off before reaching the basilar artery leading to the communicating arteries forming the circle of Willis. The circle of Willis is formed with several arteries meeting in an almost circle hence the name. Honestly the arteries and their jobs is pretty amazing and can keep me occupied for hours reading about them. I am readyfor London, I am Whooshing Whirring Wanderer ready to take on the world oh and any doctor who dismisses me.
All for now your friend Whirring Wanderer
ps look out for my facebook page in the next month about Pulsatile Tinnitus awareness
Wednesday, 27 April 2016
Spring 2016 update
Having had no response from my Neurologist since October 2015 I emailed Dr Tyagi on the 13th April for an update on the funding and referral to London. Dr Tyagi responded that he had written a letter requesting funding some time back in September 2015 and would chase that up and he apologised as he thought he'd already replied to me. I spoke with Patient Advice Service Scotland at Citizens Advice Bureau and they advised contacting the Complaints department. I contacted the Complaints department asking if they could find out what was happening with my referral.
On 25th April Dr Tyagi responded through email that he had looked into my "query" ie the complaints department had been in touch with him. He seemed to think we communicated through email in September last year which we did not (I have all emails between us) He also seemed to think I had told him I was going to New York to have my artery looked at which I did not. He was able to state that funding was approved back in September yet provides no explanation on why he did not communicate this to me. He is unsure why the referral was not done but said it was possible that he did not do the referral as an oversight or the referral was not typed up. He assures me that the referral has now been done.
I feel I have been let down again by a public service that is supposed to support its patients. Not to mention the other mistakes that's been made! I could scream, shout and swear or just go and buy a large bottle of Grey Goose Vodka the latter seems more appealing and less stressful.
Whirring Wanderer
On 25th April Dr Tyagi responded through email that he had looked into my "query" ie the complaints department had been in touch with him. He seemed to think we communicated through email in September last year which we did not (I have all emails between us) He also seemed to think I had told him I was going to New York to have my artery looked at which I did not. He was able to state that funding was approved back in September yet provides no explanation on why he did not communicate this to me. He is unsure why the referral was not done but said it was possible that he did not do the referral as an oversight or the referral was not typed up. He assures me that the referral has now been done.
I feel I have been let down again by a public service that is supposed to support its patients. Not to mention the other mistakes that's been made! I could scream, shout and swear or just go and buy a large bottle of Grey Goose Vodka the latter seems more appealing and less stressful.
Whirring Wanderer
Friday, 29 January 2016
PULSATILE TINNITUS A SYMPTOM OF ARTERY DISSECTIONS
A few medical reports of Vertebral Artery Dissections
http://onlinelibrary.wiley.com/doi/10.1111/ene.13031/abstract;jsessionid=C798A3ACC0B6E910D64CB8BF6A03B296.f04t04
http://www.ncbi.nlm.nih.gov/pubmed/15068515 Pulsatile Tinnitus as a symptom of artery dissection.
http://www.acep.org/Education/Continuing-Medical-Education-(CME)/Focus-On/Focus-On--Headache-and-Neck-Pain---When-to-Suspect-Cervical-Artery-Dissection/ When to focus on head and neck pain.
http://www.whooshers.com/2012.09.01_arch.html#1346508616550 A cured patient from the Whooshers community who had a vertebral artery dissection with fusiform aneurysm. Please look them up on Facebook "Pulsatile Tinnitus Whooshers Unite"
http://www.medscape.org/viewarticle/567644_5 Some clinical findings in Artery Dissections.
www.vertebralarterydissection.com/.../vad-stroke-personal-stories-12.htm Female age 31 suffered varying symptoms including ear pain and pulsatile tinnitus,VAD diagnosed after 8 weeks.
http://radiopaedia.org/cases/vertebral-artery-dissection-with-left-pica-infarct-1 A 30yr old male who's images are identical to mine with a double lumen being created. I contacted the doctor concerned who reported on the images and sent my scans to India, my diagnosis Vertebral Artery Dissection causing double lumen.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2588305/ More clinical symptoms.
http://onlinelibrary.wiley.com/doi/10.1111/ene.13031/abstract;jsessionid=C798A3ACC0B6E910D64CB8BF6A03B296.f04t04
http://www.ncbi.nlm.nih.gov/pubmed/15068515 Pulsatile Tinnitus as a symptom of artery dissection.
http://www.acep.org/Education/Continuing-Medical-Education-(CME)/Focus-On/Focus-On--Headache-and-Neck-Pain---When-to-Suspect-Cervical-Artery-Dissection/ When to focus on head and neck pain.
http://www.whooshers.com/2012.09.01_arch.html#1346508616550 A cured patient from the Whooshers community who had a vertebral artery dissection with fusiform aneurysm. Please look them up on Facebook "Pulsatile Tinnitus Whooshers Unite"
http://www.medscape.org/viewarticle/567644_5 Some clinical findings in Artery Dissections.
www.vertebralarterydissection.com/.../vad-stroke-personal-stories-12.htm Female age 31 suffered varying symptoms including ear pain and pulsatile tinnitus,VAD diagnosed after 8 weeks.
http://radiopaedia.org/cases/vertebral-artery-dissection-with-left-pica-infarct-1 A 30yr old male who's images are identical to mine with a double lumen being created. I contacted the doctor concerned who reported on the images and sent my scans to India, my diagnosis Vertebral Artery Dissection causing double lumen.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2588305/ More clinical symptoms.
Wednesday, 9 December 2015
December 2015
Today I received my original MRI scan that I had carried out at Ayr Hospital back in April 2013 around 6 months after my symptoms started. I also received consultants notes that I requested. Lets just say doctors are a bit economical with the truth. Its disgusting that doctor's write whatever they think and not what the patient is relaying to them. For Miss Shanks of Ayr ENT to write in her notes that I have anxiety is beyond belief, I only spent 20 minutes with her and because I asked several questions I was labelled, she doesn't know me, I was her patient for a short period of time. It seems not only are doctors able to diagnose you with anxiety within a short appointment but they can also write whatever untruths they want. Maybe Miss Shanks should undergo training to differentiate between tinnitus and pulsatile tinnitus because she clearly does not know the difference. My A&E notes could of been written about another patient, the doctor I seen did not record that I was hearing a noise in my head, I explained I was hearing a baby's ultrasound noise in my head on three occasions and it has not been written down once. My temperature is recorded, my pupil size and my heart rate yet unbelievably none of these assessments took place, it states my blood pressure reading was taken by the doctor, where in actual fact it was only taken once by the nurse before seeing the doctors but the doctor felt justified to record my blood pressure in his notes. The nurses notes are very poor too, she noted I had an ear infection and developed a pressure in my head after painting, she failed to note the headache I'd had for nearly 6 weeks, neck pain, ear pressure and baby ultrasound noise. I had explained I felt it was related to the fact I had done a lot of overhead painting. She either never listened to me properly or decided not to write what I was telling her. The Nurse also noted my pain scale was 2, I am annoyed at that statement in my notes because the Nurse did not even ask me about my pain or a pain scale, how bloody presumptuous . The A&E doctor said to me at the time he would check my eyes but he forgot and went away to get another doctor. He also wrote in my notes that I had an ear infection that was resolving but I clearly remember the appointment and have it noted in my diary and he said I had the cleanest ears he had ever seen and possibly an old healed perforation on the ear drum, the best of it was the other doctor agreed that I had no ear infection and that the diagnosis was I had pulled a neck muscle. At no point did I tell any staff member at Ayr Hospital on that visit to A&E that I had an ear infection, what I did say was that several GP's had treated me for suspected ear infection but no infection was present. These are the sort of things that happen within our NHS so what chance have I got in trying to obtain an honest and true diagnosis when doctors falsify documents. Below is two images from my MRI showing the dissection of the left vertebral. The images were taken 6 months after my symptoms developed and shows the wall thickening of the left vertebral. The image shows a large haematoma with no double lumen. The double lumen must of developed sometime after this scan. Had doctor's at A&E investigated my symptoms in more detail and sent me for a scan my artery tear would of been picked up at 6 weeks, instead they sent me home. A further 18 months passed before I could arrange and pay for an MRA scan privately, these too were marked normal. These were the scans I sent to New York and Dr Maksim Shapiro gave his opinion. I then obtained a further two opinions yet unbelievably my doctor's would not confirm diagnosis, instead they ordered a CTA which again they marked normal. On all three scans MRI 2013, MRA 2014 & CTA 2015 there is definite evidence I have suffered an artery tear which has left the artery with a double lumen causing me horrendous pain due to the nerve fibres that run close by, I believe the artery is damaged and now wider and pressing on adjacent nerves. Doctor's refuse to carry out the angiogram that Dr Shapiro suggested. I have been waiting since September for an NHS referral to attend hospital in London for an opinion. I personally have done some research and found that the doctor I am being referred to is a colleague of Dr Tyagi my Neurologist. Why has my Neurologist referred me to someone he has worked with writing medical papers on headaches? Is it so that he too can say "your scans are normal" "there is nothing wrong with you" He too is a Neurologist and certainly not independent by any means, why not send all my scans to London for a second opinion from a Neurointerventionist rather than send me to London to see another Neurologist. I need to see a specialist who has a vast knowledge of dealing with artery dissections and reading scans. You can read about vertebral artery dissections here http://radiopaedia.org/articles/vertebral-artery-dissection and also Dr Shapiro's wonderful site http://neuroangio.org/patient-information/patient-information-arterial-dissection-carotid-vertebral-basilar-arteries/
All for now
Whirring Wanderer
Whirring Wanderer
Friday, 20 November 2015
GP appointment November 2015
Hi lovely people. I haven't received an update on the progress of the funding request from my email to Dr Tyagi in October so I visited my GP Dr Stevenson yesterday but unfortunately he couldn't give an answer but suggested it would most likely be next year!!! He said he was unsure how the funding worked but assumed it would go to Ayrshire & Arran Healthboard and Dr Tyagi would be in touch. I asked him if he would chase it for me but said he wouldn't and would see little point as it would likely be a lengthy process. I asked some questions and every response I received was "I can't answer your questions its beyond my expertise" "your questions are valid" "I can't comment on that" the responses were due to the fact I mentioned Dr Tyagi's mistakes about reporting on my Carotid Artery instead of the Vertebral. I also reminded Dr Stevenson that he received a letter from Dr Tyagi stating my Carotid Artery was normal and I explained that the wrong artery had been investigated. Dr Stevenson's response "I can't comment on that". I told him had my original doctor's acted on my symptoms, had A&E not sent me home and had Dr Dosumu listened and not refused to refer me to neurology I might not be in the position I am in now with a chronic headache, pulsatile tinnitus and multiple other symptoms. He suggested A&E was probably not the best place to be diagnosed as they are there to save lives and triage patients who were most possibly not going to make it till 9am the next morning, I politely reminded him that I must be one of the lucky ones, had I not lay down to my symptoms I could of quite possibly have been one of those patients who had a stroke. His suggestion after me asking "if A&E is not the place to go and GP's don't listen and believe you then where would I go? His answer "a Neurologist" I had to contain myself and not lift my size 5 foot to his rear end, his partner Dr Dosumu was the one who said I did not have pulsatile tinnitus and would not refer me due to a previous normal scan, she read from her computer screen from my previous doctor's practice that I had neuralgia and normal tinnitus and asked me to come back with a named doctor to be referred to. Dr Stevenson asks what my response will be if the opinion from London is obtained and it shows no dissection has taken place. Yet as my doctor he does nothing to offer to investigate what else could be potentially causing my symptoms. This man is an arrogant twat in every word that comes out his mouth. It beggars belief that doctor's abroad can diagnose me from my symptoms and scans yet doctor's here can't or won't! There is one certainty that I can assure myself and that is I will get to the bottom of my symptoms and receive a diagnosis. (see I am being arrogant now, I learned that from the numerous GP's I have seen over the last 3 years)
My husband Mr Wanderer is a Gas Heating Engineer and if he is called out to a boiler that has problems and the householder is reporting its broken and making awful noises, it is his duty to find out what is wrong with that boiler and keep investigating until it is fixed, if he didn't and told the householder I am sorry there is nothing I can do, I am unsure what is wrong with your boiler and I might never be able to answer your questions and I can only treat the symptoms with medication(ie I will change every part of your boiler because I don't know) then he would loose his job because his employer would dismiss him for not carrying out his job properly. I know its a rubbish comparison but you get where I am coming from. I decided to give Dr Stevenson a copy of Ten Top Tips for Doctors on Pulsatile Tinnitus written by doctors for doctors, its taken from the Whooshers.com website.
I also asked for a copy of the recent discharge letter from my neurologist Dr Tyagi and there was also a letter from Dr Tracey Baird (the colleague of Dr Tyagi who visited me during my hospital stay) explaining there was no evidence of dissection and my question of dissection would never be answered. Again the communication has been very poor because I should of been sent a copy of this letter from Dr Baird. I should be kept informed about decisions about me yet this seems non existent. Why has my symptoms now been put into the bracket of has she or hasn't she? Why am I not being treated as an individual patient who has on going symptoms? Why has no doctor taken the stance to look more in depth at my symptoms to find a cause and treat me. Dr Baird didn't mention in her letter that she had reviewed my scan and that she had based her decision on looking at my Carotid Artery instead of my Vertebral Artery. It's slightly bewildering that doctors leave key facts out of their letters. I know myself what I am experiencing and that sound is coming from that artery and the pain is coming from that artery. (the arrogance is creeping in again) Dr Baird goes on in her letter to state that she is not aware of anyone in Scotland who carries out that sort of intervention on an artery. Dr Tracey Baird this link is for you http://www.whooshers.com/2012.09.01_arch.html
Doctor's may not carry out these procedures in Scotland but they are carried out worldwide, Scotland is most definitely not at the forefront of Neurointervention and by not offering me the test of a cerebral angiogram to confirm the suspicions of Dr Shapiro in NY is alarming considering the seriousness of the diagnosis and the fact that the only test available to confirm what is going on with my artery is the cerebral angiogram. Of course this is to stop me being given the diagnosis that they have missed.
Dr Shapiro explains in detail in his report on how to carry out the procedure and what to look for and how to fix the artery. After having suffered for 3 years I have very little trust in what any of the doctors tell me here in Scotland.
There are many doctors who honestly need to pay a visit to an optician or maybe go back to med school, all the doctor's who report my scan is normal really need to stop covering each others backsides, not one of them will take a stand of their own and say they see what Dr Shapiro see's. Would their family members be treated in the same manner I have been? I have no other option but to conclude the Neurologists of Glasgow have severe eyesight problems.
*A note to the Neurologists and Neuroradiologists of Southern General Hospital/Queen Elizabeth Hospital, Glasgow please have a look at my MRA & CTA again and have a look at the left vertebral artery at V3 level, you will notice at the back of the atlas loop there is a strange bulge in my artery, it is called a double barrel lumen or false lumen which is caused by an artery tear. I hear turbulent blood flow in my head, I have a constant headache, neck pain and ear pressure. When I stand up or bend down I get a massive head rush and hear a loud roaring sound, when I exert myself and try and do too much I become off balance and I am pulled to the left. I have pins and needles in the left of my head! So my question is what is causing my symptoms if all scans are normal?
Whirring Wanderer
My husband Mr Wanderer is a Gas Heating Engineer and if he is called out to a boiler that has problems and the householder is reporting its broken and making awful noises, it is his duty to find out what is wrong with that boiler and keep investigating until it is fixed, if he didn't and told the householder I am sorry there is nothing I can do, I am unsure what is wrong with your boiler and I might never be able to answer your questions and I can only treat the symptoms with medication(ie I will change every part of your boiler because I don't know) then he would loose his job because his employer would dismiss him for not carrying out his job properly. I know its a rubbish comparison but you get where I am coming from. I decided to give Dr Stevenson a copy of Ten Top Tips for Doctors on Pulsatile Tinnitus written by doctors for doctors, its taken from the Whooshers.com website.
I also asked for a copy of the recent discharge letter from my neurologist Dr Tyagi and there was also a letter from Dr Tracey Baird (the colleague of Dr Tyagi who visited me during my hospital stay) explaining there was no evidence of dissection and my question of dissection would never be answered. Again the communication has been very poor because I should of been sent a copy of this letter from Dr Baird. I should be kept informed about decisions about me yet this seems non existent. Why has my symptoms now been put into the bracket of has she or hasn't she? Why am I not being treated as an individual patient who has on going symptoms? Why has no doctor taken the stance to look more in depth at my symptoms to find a cause and treat me. Dr Baird didn't mention in her letter that she had reviewed my scan and that she had based her decision on looking at my Carotid Artery instead of my Vertebral Artery. It's slightly bewildering that doctors leave key facts out of their letters. I know myself what I am experiencing and that sound is coming from that artery and the pain is coming from that artery. (the arrogance is creeping in again) Dr Baird goes on in her letter to state that she is not aware of anyone in Scotland who carries out that sort of intervention on an artery. Dr Tracey Baird this link is for you http://www.whooshers.com/2012.09.01_arch.html
Doctor's may not carry out these procedures in Scotland but they are carried out worldwide, Scotland is most definitely not at the forefront of Neurointervention and by not offering me the test of a cerebral angiogram to confirm the suspicions of Dr Shapiro in NY is alarming considering the seriousness of the diagnosis and the fact that the only test available to confirm what is going on with my artery is the cerebral angiogram. Of course this is to stop me being given the diagnosis that they have missed.
Dr Shapiro explains in detail in his report on how to carry out the procedure and what to look for and how to fix the artery. After having suffered for 3 years I have very little trust in what any of the doctors tell me here in Scotland.
There are many doctors who honestly need to pay a visit to an optician or maybe go back to med school, all the doctor's who report my scan is normal really need to stop covering each others backsides, not one of them will take a stand of their own and say they see what Dr Shapiro see's. Would their family members be treated in the same manner I have been? I have no other option but to conclude the Neurologists of Glasgow have severe eyesight problems.
*A note to the Neurologists and Neuroradiologists of Southern General Hospital/Queen Elizabeth Hospital, Glasgow please have a look at my MRA & CTA again and have a look at the left vertebral artery at V3 level, you will notice at the back of the atlas loop there is a strange bulge in my artery, it is called a double barrel lumen or false lumen which is caused by an artery tear. I hear turbulent blood flow in my head, I have a constant headache, neck pain and ear pressure. When I stand up or bend down I get a massive head rush and hear a loud roaring sound, when I exert myself and try and do too much I become off balance and I am pulled to the left. I have pins and needles in the left of my head! So my question is what is causing my symptoms if all scans are normal?
Whirring Wanderer
Thursday, 29 October 2015
So what have I learned about the NHS over the last three years?
As the title suggests I will explain what I have endured from NHS Ayrshire & Arran and Greater Glasgow & Clyde. My three year anniversary or suffering is more applicable, has been and gone and I'm still in limbo. There has been no urgency to investigate and find a diagnosis.
The first thing that is apparent to me is cost cutting, it took 7 consultations with GP's before I was eventually offered and referred to an ENT consultant at the hospital, at this stage nearly 5 months had passed. I moved to a new GP practice because a doctor said they would no longer investigate my symptoms and to accept that I had some sort of soft tissue damage. At my new and still current GP Practice I was refused a referral to a Neurologist as the new doctor seen no need to refer me based on a previous normal scan. I was forced to go private therefore saving them their budget.
Secondly I have found that doctors including ENT Consultants do not have any knowledge of pulsatile tinnitus nor have they taken my combined symptoms including headache seriously. Many doctors tried to separate my symptoms even though I repeatedly told them everything happened around the same time. Not one doctor has connected my pulsatile tinnitus, headache, neck and ear pain.
Thirdly not one doctor has gone out their way to try and make investigations on what could be causing my symptoms. I have done all the investigating myself by arranging a private MRA scan and sending them to New York. When I provided doctors with a diagnosis none of them were quick to act, I had to constantly chase my neurologist up with constant emails and calling my GP practice. I gave doctor's print outs of my symptoms to make it easier for them so that they had a list in front of them. My neurologist made several mistakes and he is yet to admit them, not sending me letters of results, mixing me up with another patient, sending me for a scan questioning a carotid dissection instead of vertebral dissection.
I should also mention the lack of notes that GP's have recorded about my symptoms, it is very concerning that GP's do not note everything that you state to them and in my case many did not type or note anything until I was leaving the room. On another small issue, I have found Doctors very evasive when I have asked questions so much so I believe they must be sitting in the same classrooms as high class lawyers. Not one doctor will give me a clear answer on what is showing on my scans. It ranges from "nothing" "movement in the scanner" "no abnormality found" "the artery is normal and patent" "unsure of the abnormalities within your scan"
Going forward after presenting Dr Shapiro's report from New York, doctors never properly acted on it. Dr Shapiro's preferred method was an angiogram and also a balloon occlusion test which would confirm the diagnosis and also allow time to fix the artery at the same time. My neurologist decided on a CT Angiogram and not the conventional Cerebral Angiogram which is gold standard in cases such as mine. Of course doctors were then free to report my CT Angiogram as normal. They were never going to own up that my MRA and CTA had shown the double lumen all along and that they had missed it. Except it does show a clear double barrel lumen at the atlas loop of the vertebral (V3) When I questioned Dr Tyagi he said he had to go on what the neuroradiologist reported.
When my husband and I met with Dr T in May he said that normal variants were not openly reported on. I asked if a normal variant or fenestration could be causing my symptoms he said that there was nothing showing and my artery was completely normal.
After finally receiving my CTA in July and carefully viewing it I could see that the artery was not normal and within the report it stated a Carotid Dissection was being questioned. I sent two emails to Dr T asking why he had questioned the wrong artery but he has never responded to that question. I then obtained my GP notes and Dr T wrote to my GP stating my Carotid was fine with no evidence of dissection. Now what really alarms me on this is that my GP had the report from Dr Shapiro and it only ever mentions the Vertebral Artery throughout the report. Why did my GP not pick up on this?
Thanks for reading
Whirring Wanderer
The first thing that is apparent to me is cost cutting, it took 7 consultations with GP's before I was eventually offered and referred to an ENT consultant at the hospital, at this stage nearly 5 months had passed. I moved to a new GP practice because a doctor said they would no longer investigate my symptoms and to accept that I had some sort of soft tissue damage. At my new and still current GP Practice I was refused a referral to a Neurologist as the new doctor seen no need to refer me based on a previous normal scan. I was forced to go private therefore saving them their budget.
Secondly I have found that doctors including ENT Consultants do not have any knowledge of pulsatile tinnitus nor have they taken my combined symptoms including headache seriously. Many doctors tried to separate my symptoms even though I repeatedly told them everything happened around the same time. Not one doctor has connected my pulsatile tinnitus, headache, neck and ear pain.
Thirdly not one doctor has gone out their way to try and make investigations on what could be causing my symptoms. I have done all the investigating myself by arranging a private MRA scan and sending them to New York. When I provided doctors with a diagnosis none of them were quick to act, I had to constantly chase my neurologist up with constant emails and calling my GP practice. I gave doctor's print outs of my symptoms to make it easier for them so that they had a list in front of them. My neurologist made several mistakes and he is yet to admit them, not sending me letters of results, mixing me up with another patient, sending me for a scan questioning a carotid dissection instead of vertebral dissection.
I should also mention the lack of notes that GP's have recorded about my symptoms, it is very concerning that GP's do not note everything that you state to them and in my case many did not type or note anything until I was leaving the room. On another small issue, I have found Doctors very evasive when I have asked questions so much so I believe they must be sitting in the same classrooms as high class lawyers. Not one doctor will give me a clear answer on what is showing on my scans. It ranges from "nothing" "movement in the scanner" "no abnormality found" "the artery is normal and patent" "unsure of the abnormalities within your scan"
Going forward after presenting Dr Shapiro's report from New York, doctors never properly acted on it. Dr Shapiro's preferred method was an angiogram and also a balloon occlusion test which would confirm the diagnosis and also allow time to fix the artery at the same time. My neurologist decided on a CT Angiogram and not the conventional Cerebral Angiogram which is gold standard in cases such as mine. Of course doctors were then free to report my CT Angiogram as normal. They were never going to own up that my MRA and CTA had shown the double lumen all along and that they had missed it. Except it does show a clear double barrel lumen at the atlas loop of the vertebral (V3) When I questioned Dr Tyagi he said he had to go on what the neuroradiologist reported.
When my husband and I met with Dr T in May he said that normal variants were not openly reported on. I asked if a normal variant or fenestration could be causing my symptoms he said that there was nothing showing and my artery was completely normal.
After finally receiving my CTA in July and carefully viewing it I could see that the artery was not normal and within the report it stated a Carotid Dissection was being questioned. I sent two emails to Dr T asking why he had questioned the wrong artery but he has never responded to that question. I then obtained my GP notes and Dr T wrote to my GP stating my Carotid was fine with no evidence of dissection. Now what really alarms me on this is that my GP had the report from Dr Shapiro and it only ever mentions the Vertebral Artery throughout the report. Why did my GP not pick up on this?
Thanks for reading
Whirring Wanderer
Monday, 19 October 2015
NHS do not investigate symptoms! October 2015
On the 12th October I telephoned my GP surgery due to five weeks having passed since my hospital stay and scan. The receptionist stated there were no results from the scan but a letter had arrived on the 7th October for my GP and she wasn't at liberty to tell me what was written in the letter however I could speak with the doctor. I said I would contact Dr Tyagi myself.
I emailed Dr T later that day and asked if there were any results of my scan and could he update about my referral to London . I got a basic reply stating he had already written to my GP with a discharge summary and my scan was normal, he also said he would check the progress of the funding request. Yet again I never received a letter from Dr T informing me of my results, I had to call my GP surgery and then email him myself. How incompetent that a Neurologist will not communicate with a patient, all I'm looking for is to be copied in on the letters he is sending to my GP about my care. The basic lack of communication from him is awful not forgetting the mistakes he's made with mixing me up with another patient, sending me for a CT Angio to query a Carotid Artery Dissection instead of concentrating on the Vertebral Artery. He has been so evasive and not answered my question on two occasions on how he questioned the wrong artery.
I am becoming extremely bitter in the last few months with life in general. I honestly don't see a future for myself going forward with these debilitating symptoms. No one believes my symptoms, no one is interested in my symptoms and no one wants to investigate my symptoms. It is coming up to three years in the next few days since I decorated my living room, a living room I have not had the chance to relax and enjoy due to the on going headache and sound in my head. I am mentally exhausted trying to fight for a diagnosis and treatment. I need to be free from these symptoms. I feel so stupid I don't want to go back to my GP surgery. I am made to feel that I am wrong about what is going on within my own body. I do have something going on in my head, the headache,Pulsatile Tinnitus and neck pain are symptoms of an underlying cause. I do not have a mental health issue and I do not suffer from anxiety but I feel as if I am being judged that way.
Whirring Wanderer
I emailed Dr T later that day and asked if there were any results of my scan and could he update about my referral to London . I got a basic reply stating he had already written to my GP with a discharge summary and my scan was normal, he also said he would check the progress of the funding request. Yet again I never received a letter from Dr T informing me of my results, I had to call my GP surgery and then email him myself. How incompetent that a Neurologist will not communicate with a patient, all I'm looking for is to be copied in on the letters he is sending to my GP about my care. The basic lack of communication from him is awful not forgetting the mistakes he's made with mixing me up with another patient, sending me for a CT Angio to query a Carotid Artery Dissection instead of concentrating on the Vertebral Artery. He has been so evasive and not answered my question on two occasions on how he questioned the wrong artery.
I am becoming extremely bitter in the last few months with life in general. I honestly don't see a future for myself going forward with these debilitating symptoms. No one believes my symptoms, no one is interested in my symptoms and no one wants to investigate my symptoms. It is coming up to three years in the next few days since I decorated my living room, a living room I have not had the chance to relax and enjoy due to the on going headache and sound in my head. I am mentally exhausted trying to fight for a diagnosis and treatment. I need to be free from these symptoms. I feel so stupid I don't want to go back to my GP surgery. I am made to feel that I am wrong about what is going on within my own body. I do have something going on in my head, the headache,Pulsatile Tinnitus and neck pain are symptoms of an underlying cause. I do not have a mental health issue and I do not suffer from anxiety but I feel as if I am being judged that way.
Whirring Wanderer
Tuesday, 22 September 2015
September 2015 update
For those of you who are still following and have not keeled over yet....................................................
I still don't have any positive news. I went into hospital on the 31st August to the 4th September and had the Dihydroergotamine infusion over four days. I didn't tolerate the first two infusions very well and felt weak with no energy and the pressure in my head heightened as did the headache, I also developed a heavy feeling in the middle of my chest, overall I felt awful. I eventually told a nurse that I was having pins and needles over the left of my head which I have experienced on many occasions but this was far worse therefore it was decided that I have the infusion over three hours instead of the usual one hour. I explained to the nurse I was slightly concerned as I had obtained an opinion outwith the Nhs and a Vertebral Artery Dissection had been put forward as a possible cause of my on going symptoms and I felt that the drug infusion was constricting the artery hence more intense pins and needles. The nurse went away and came back stating it was in my notes that I definitely did not have a dissection at any point as Professor Keith Muir had a note in my file that he had read my MRA scan and there was no evidence of dissection. (I wonder what he thought the strange bulge in my vertebral artery is) My immediate thought is that he was asked to look for a carotid abnormality or dissection.
On day three I spoke with my neurologist Dr Tyagi who still hasn't answered my question on why he questioned the carotid artery being dissected instead of the vertebral. He suggested that he could apply for funding and send me to the National Hospital for Neurology & Neurosurgery in London to which I agreed. He also requested another ECG because of the heavy feeling in my chest.
On day four I had a visit from a Dr George Gorrie a neurologist who Dr Tyagi had asked to come and speak with me regarding my symptoms. He let me explain my symptoms and asked a few questions. He said he had seen my scans and that they were normal. He questioned the doctor I had sent my scans to and said he wasn't just aware at how widely available these internet doctors were, who take money from people, I stopped him at that point to tell him it was a reputable doctor I sent my scans to that I paid a minimal fee and the reasons I sought answers was because I had suffered for nearly three years and no one was interested in helping me find a cause for my symptoms, he went on to say that our Nhs is a reputable free service that don't take money from people. I explained that the two other doctors I had opinions from did not charge me any money yet came up with the same diagnosis as Dr Shapiro in NY, his response was to say "interesting" and placed his hands on top of his head looking slightly bewildered. He had no notes with him and didn't take any he also hadn't read Dr Shapiro's report. He asked a few questions about family history and I explained my maternal line only live to mid 60's and its arterial issues they died from including brain haemorrhage and heart attack. He said my maternal grandmother probably fried her food!!! He asked me to lie flat until he had finished his ward round. On his return he came back with Dr Tyagi and two nurses, one of which was taking notes. Dr Gorrie asked how did I feel and I explained the headache was the same but the pressure deep within my neck was worse because my neck was slightly extended being flat on the bed so he decided to sit me up. Dr Tyagi suggested having another Mri scan but this time with contrast as they wanted to check the lining of my brain to rule out a condition and to rule out small tumours like a paraganglioma. Dr Gorrie then decided what hit the nail on the head for him that I did not have a carotid artery dissection was because the area in question of where my headache was is not consistent with a carotid tear. I honestly could not believe I was hearing the Carotid word again!!! I gave a nervous laugh and firmly said that's because its a vertebral dissection. He stared and said "oh ok". I could see Dr Tyagi slightly shifting from side to side and nodding to what I said but gave no corrections to Dr Gorrie. Dr Tyagi said he would arrange the scan and they then left the room and chatted outside in the corridor.
Later in the afternoon around 4pm Dr Tracey Baird visited me, a very pleasant woman. I explained my symptoms on how and when they started and I also gave a bit more of the background on how I came to be given the diagnosis by Dr Shapiro as she was taking notes where as Dr Gorrie didn't. I told her all about the sound in my head and how I'd related it to Pulsatile Tinnitus by searching the internet, I gave her a website to look at. I explained how I was able to find out Dr Shapiro's details to send my scans to. Dr Baird's response was that "any doctor can have a glossy website and take all your money and we need to be aware of these sort of things that's why we have the Nhs" I explained Dr Shapiro didn't just have a glossy website but was also a very well known Neurointerventionalist in New York and was from the Langone medical centre http://www.med.nyu.edu/ Dr Baird went on to say that my question of whether I had suffered a dissection or not could never be answered. I explained that Dr Shapiro could tell by doing a cerebral angiogram and a balloon test occlusion on the artery, it would show the false side of the lumen and if the pulsing noise stopped with the balloon test then it would confirm the diagnosis and the artery could be fixed at the same time eliminating the pulsatile tinnitus hopefully reducing my headaches and other symptoms. Dr Baird however told me that under no circumstances would that be carried out here in Scotland and not to trust the other doctor as what he was proposing to do I was at high risk of death. I said it was highly unlikely considering Dr Shapiro carried out these operations every day and that as the Nhs were not helping me I might have no choice but to go America and have the treatment there as no one can read my scans properly. Dr Baird continued to say she too had read my scans and that all arteries were normal. I asked her which artery and she looked puzzled, I said I had a question were you asked to look at my scans in regards to a Carotid dissection and she said YES! OH MY FLUFFING GOODNESS SAKES I couldn't believe it, yet again the wrong artery! I asked that she correct what was written on my notes because I believed Dr Tyagi had made a mistake and had yet to correct it within my file and clearly he was asking his colleagues to look at the wrong artery. Dr Baird wrote down the information I was telling her and I asked had she read Dr Shapiro's report to which she looked through the file she had on her knee which contained a few sheets of A4 paper and then said no she hadn't read it or seen it!!! At this point I wanted to say fuck off get out my room I'm going home, I trust none of you fuckers! Of course I never and instead I got my phone out and showed Dr Baird images from my MRA & CTA and asked if she thought my images were normal but she wouldn't answer, only repeating that she would need to go back and re-look them and if anything it would be another artery or vein sitting on top of one another showing on my images. When I pointed out a marked image sent by Dr Shapiro and asked what she thought the double lumen was she said to her it looked as if another artery was in the way and was sitting on top or crossing over it, I said it was showing on numerous images and showing both on my MRA & CTA, two scans can not be wrong on what its showing, again she said she would re-look my scans but wouldn't admit my images were abnormal, she maintained they were normal. I asked a few further questions on why I wasn't able to exercise due to the headache and sound becoming louder in my head yet I never got a constructive answer, I put it to Dr Baird that if I had nothing wrong then I could go ahead and do overhead painting again and she said "well no I wouldn't do that when you have an on going condition" she went on to say its like when anyone has a health condition they need to adapt for example people diagnosed with diabetes have to take steps to adapt to their health. The issue I have with that statement is that I don't have a diagnosed condition, I have a huge list of symptoms that no one is interested in investigating and getting to the bottom of them. Pulsatile Tinnitus is not a condition it is an underlying symptom of a vascular condition and needs a full on medical work up to see what is causing it. Dr Baird left and I sat for an hour going through my scans on my phone, there was no other artery or vein crossing over my vertebral from any angle!
On Friday 4th September before I left the hospital I was taken for an MRI with contrast, as of today 22nd Sept I am still waiting on the results and/or a follow up appointment to discuss the next steps.
Thanks for reading
Whirring Wanderer
I still don't have any positive news. I went into hospital on the 31st August to the 4th September and had the Dihydroergotamine infusion over four days. I didn't tolerate the first two infusions very well and felt weak with no energy and the pressure in my head heightened as did the headache, I also developed a heavy feeling in the middle of my chest, overall I felt awful. I eventually told a nurse that I was having pins and needles over the left of my head which I have experienced on many occasions but this was far worse therefore it was decided that I have the infusion over three hours instead of the usual one hour. I explained to the nurse I was slightly concerned as I had obtained an opinion outwith the Nhs and a Vertebral Artery Dissection had been put forward as a possible cause of my on going symptoms and I felt that the drug infusion was constricting the artery hence more intense pins and needles. The nurse went away and came back stating it was in my notes that I definitely did not have a dissection at any point as Professor Keith Muir had a note in my file that he had read my MRA scan and there was no evidence of dissection. (I wonder what he thought the strange bulge in my vertebral artery is) My immediate thought is that he was asked to look for a carotid abnormality or dissection.
On day three I spoke with my neurologist Dr Tyagi who still hasn't answered my question on why he questioned the carotid artery being dissected instead of the vertebral. He suggested that he could apply for funding and send me to the National Hospital for Neurology & Neurosurgery in London to which I agreed. He also requested another ECG because of the heavy feeling in my chest.
On day four I had a visit from a Dr George Gorrie a neurologist who Dr Tyagi had asked to come and speak with me regarding my symptoms. He let me explain my symptoms and asked a few questions. He said he had seen my scans and that they were normal. He questioned the doctor I had sent my scans to and said he wasn't just aware at how widely available these internet doctors were, who take money from people, I stopped him at that point to tell him it was a reputable doctor I sent my scans to that I paid a minimal fee and the reasons I sought answers was because I had suffered for nearly three years and no one was interested in helping me find a cause for my symptoms, he went on to say that our Nhs is a reputable free service that don't take money from people. I explained that the two other doctors I had opinions from did not charge me any money yet came up with the same diagnosis as Dr Shapiro in NY, his response was to say "interesting" and placed his hands on top of his head looking slightly bewildered. He had no notes with him and didn't take any he also hadn't read Dr Shapiro's report. He asked a few questions about family history and I explained my maternal line only live to mid 60's and its arterial issues they died from including brain haemorrhage and heart attack. He said my maternal grandmother probably fried her food!!! He asked me to lie flat until he had finished his ward round. On his return he came back with Dr Tyagi and two nurses, one of which was taking notes. Dr Gorrie asked how did I feel and I explained the headache was the same but the pressure deep within my neck was worse because my neck was slightly extended being flat on the bed so he decided to sit me up. Dr Tyagi suggested having another Mri scan but this time with contrast as they wanted to check the lining of my brain to rule out a condition and to rule out small tumours like a paraganglioma. Dr Gorrie then decided what hit the nail on the head for him that I did not have a carotid artery dissection was because the area in question of where my headache was is not consistent with a carotid tear. I honestly could not believe I was hearing the Carotid word again!!! I gave a nervous laugh and firmly said that's because its a vertebral dissection. He stared and said "oh ok". I could see Dr Tyagi slightly shifting from side to side and nodding to what I said but gave no corrections to Dr Gorrie. Dr Tyagi said he would arrange the scan and they then left the room and chatted outside in the corridor.
Later in the afternoon around 4pm Dr Tracey Baird visited me, a very pleasant woman. I explained my symptoms on how and when they started and I also gave a bit more of the background on how I came to be given the diagnosis by Dr Shapiro as she was taking notes where as Dr Gorrie didn't. I told her all about the sound in my head and how I'd related it to Pulsatile Tinnitus by searching the internet, I gave her a website to look at. I explained how I was able to find out Dr Shapiro's details to send my scans to. Dr Baird's response was that "any doctor can have a glossy website and take all your money and we need to be aware of these sort of things that's why we have the Nhs" I explained Dr Shapiro didn't just have a glossy website but was also a very well known Neurointerventionalist in New York and was from the Langone medical centre http://www.med.nyu.edu/ Dr Baird went on to say that my question of whether I had suffered a dissection or not could never be answered. I explained that Dr Shapiro could tell by doing a cerebral angiogram and a balloon test occlusion on the artery, it would show the false side of the lumen and if the pulsing noise stopped with the balloon test then it would confirm the diagnosis and the artery could be fixed at the same time eliminating the pulsatile tinnitus hopefully reducing my headaches and other symptoms. Dr Baird however told me that under no circumstances would that be carried out here in Scotland and not to trust the other doctor as what he was proposing to do I was at high risk of death. I said it was highly unlikely considering Dr Shapiro carried out these operations every day and that as the Nhs were not helping me I might have no choice but to go America and have the treatment there as no one can read my scans properly. Dr Baird continued to say she too had read my scans and that all arteries were normal. I asked her which artery and she looked puzzled, I said I had a question were you asked to look at my scans in regards to a Carotid dissection and she said YES! OH MY FLUFFING GOODNESS SAKES I couldn't believe it, yet again the wrong artery! I asked that she correct what was written on my notes because I believed Dr Tyagi had made a mistake and had yet to correct it within my file and clearly he was asking his colleagues to look at the wrong artery. Dr Baird wrote down the information I was telling her and I asked had she read Dr Shapiro's report to which she looked through the file she had on her knee which contained a few sheets of A4 paper and then said no she hadn't read it or seen it!!! At this point I wanted to say fuck off get out my room I'm going home, I trust none of you fuckers! Of course I never and instead I got my phone out and showed Dr Baird images from my MRA & CTA and asked if she thought my images were normal but she wouldn't answer, only repeating that she would need to go back and re-look them and if anything it would be another artery or vein sitting on top of one another showing on my images. When I pointed out a marked image sent by Dr Shapiro and asked what she thought the double lumen was she said to her it looked as if another artery was in the way and was sitting on top or crossing over it, I said it was showing on numerous images and showing both on my MRA & CTA, two scans can not be wrong on what its showing, again she said she would re-look my scans but wouldn't admit my images were abnormal, she maintained they were normal. I asked a few further questions on why I wasn't able to exercise due to the headache and sound becoming louder in my head yet I never got a constructive answer, I put it to Dr Baird that if I had nothing wrong then I could go ahead and do overhead painting again and she said "well no I wouldn't do that when you have an on going condition" she went on to say its like when anyone has a health condition they need to adapt for example people diagnosed with diabetes have to take steps to adapt to their health. The issue I have with that statement is that I don't have a diagnosed condition, I have a huge list of symptoms that no one is interested in investigating and getting to the bottom of them. Pulsatile Tinnitus is not a condition it is an underlying symptom of a vascular condition and needs a full on medical work up to see what is causing it. Dr Baird left and I sat for an hour going through my scans on my phone, there was no other artery or vein crossing over my vertebral from any angle!
On Friday 4th September before I left the hospital I was taken for an MRI with contrast, as of today 22nd Sept I am still waiting on the results and/or a follow up appointment to discuss the next steps.
Thanks for reading
Whirring Wanderer
Saturday, 29 August 2015
August 2015
I decided to email my neurologist Dr Tyagi on 27th July explaining that my CTA is showing an abnormality within my vertebral and that the Neuroradiologist has not read it properly. I also questioned why the Carotid was mentioned in the report and not the Vertebral. I explained my main concern is that of the drug infusion to be carried out on 31st August because it constricts the blood vessels and I am unsure about it considering I can see a double lumen within the artery. Dr T ignored my questions regarding the scans showing an abnormality and never answered why he questioned a Carotid dissection. He responded on the 3rd August stating the drug infusion is for the headache only and he would seek a further opinion from a colleague of his who has an interest in stroke. My response wasn't too pleasant and I asked that he get back to me soon so that I could make an informed decision on whether to go ahead with the drug infusion. As of today just three days before my hospital stay he has failed to respond to my questions. I have decided to go ahead on Monday 31st August with my hospital stay and have the drug infusion.
Whirring Wanderer
Whirring Wanderer
Monday, 27 July 2015
CTA showing double lumen
This image taken from my CT Angiogram shows two channels of the left vertebral artery. In the medical world it is very rare for a doctor to come across this finding. The red arrow points to the left vertebral artery where two bump like images with a separation line between them is seen. It is known as a double barrel lumen, double lumen or false lumen. If you compare to the opposite side which is actually the right vertebral you can see this artery is patent and normal with no separation of the artery.
Whirring Wanderer
Friday, 24 July 2015
July 2015 Update
I am getting no where fast. I am entirely exhausted by the battle in trying to obtain a diagnosis, I want to be headache free, noise in my head free, have no pressure in my head and neck when I stand. Just today standing in the supermarket, my eyes filled up, I couldn't stop them and inside I was crying and thinking when is this ever going to end. Why was I standing in a supermarket queue feeling exhausted when all I had done was walk there to collect a few pieces for dinner? My body is struggling with the constant headache and noises in my head. I want to be able to carry out a full shop of being able to go round the supermarket with a trolley and get everything I need without my headache becoming intense and the pulsing noise becoming louder not forgetting the relentless pressure in my neck and ear.
Unfortunately I am still being messed around with their lame mistakes. I honestly don't think Dr Tyagi knows who I am or has read sufficient notes on my case. On the 25th June 2015 I received yet another letter regarding having an MRI scan this time the appointment had been arranged for four days from the date of the letter. I wondered if my CTA had been reviewed and they had seen the abnormality within my vertebral artery. I emailed Dr T explaining I was yet again confused as earlier in June I had received similar to arrange a new scan. Dr T responded by saying his recollection from our May appointment was that I had requested a further MRA scan to question dissection. I honestly could not believe what I was reading in his email and he obviously has no recollection of the previous emails between us earlier in June when I received the previous letter regarding a scan. I responded and told him the whole situation was becoming ridiculous and that I would be seeking advice to make a complaint.
I received a copy of the CTA scan that was carried out in March and I managed to view it on the 16th July. I can see the abnormality on the CTA of the vertebral artery at V3 level/atlas loop. I can see evidence of a dissection due to the double lumen showing, it does not look like a fenestration. Now what concerns me is that I asked Dr T at May's appointment if my vertebral artery showed the double lumen as it was showing on my Mra and he said no. I then asked him if it showed a natural fenestration of the artery and he said no it was patent and normal. I managed to read the report on the disc (bearing in mind I never received a letter or report about my CTA) The report reads:
>[Report Summary]
<BR>Clinical History :
<BR>? Left carotid dissection on MR angiography.
<BR>[CT Angio aortic arch and carotid Both]
<BR>CT Angio aortic arch and carotid Both :
<BR>CT angiography obtained from aortic arch to vertex
<BR>Normal appearances of the aortic arch and the origins of the
<BR>great vessels.
<BR>Normal appearances of the common carotid and both internal
<BR>carotid arteries from origin to termination.
<BR>Intracranial circulation appears unremarkable.
<BR>Vertebro-basilar system is patent. The basilar artery and
<BR>its branches are normal.
<BR>Imaged soft tissues and bones are within normal limits.
<BR>Imaged lung parenchyma appears unremarkable.
<BR>Conclusion: Normal appearances of the neck vessels.
If you managed to grasp any of it you will have noticed Dr Tyagi my Neurologist has questioned a CAROTID ARTERY DISSECTION and not the VERTEBRAL ARTERY DISSECTION. The Carotid has been looked at and reported on, nothing mentioned about the left vertebral. Not that it matters as the double lumen can still be seen on the scan, even for me who has no medical training its not hard to notice it. I am at a complete loss at the amount of times doctors have failed to listen to me. There is no excuse, I have given them the report from Dr Shapiro in New York and it states Vertebral, the emails that have gone backwards and forwards between Dr T and myself all state Vertebral. At my appointment in May all the talk was about how my Vertebral was normal.
I decided not to email Dr T but instead start the complaint process by visiting Citizens Advice on the 21st July. I can't keep giving these doctors any more chances, they are putting me at risk, I have two children to care for who need me. I could be at risk of having another dissection in any of my arteries because no one has investigated to say otherwise. What if I didn't know any better and done some overhead painting again, there is nothing to say it won't happen again and my research shows it does frequently happen specially if people have any sort of connective tissue disorders.
Today, 24th July I received a letter from hospital to state my drug infusion has been brought forward to the end of August which is better than November. I am very unsure about this drug considering it constricts the blood vessels and I am very apprehensive about going into hospital where it is clear that sub standard practices take place. None of the imbeciles I have dealt with can read a scan properly.
All for now
Your still Whooshing & Whirring Friend
Unfortunately I am still being messed around with their lame mistakes. I honestly don't think Dr Tyagi knows who I am or has read sufficient notes on my case. On the 25th June 2015 I received yet another letter regarding having an MRI scan this time the appointment had been arranged for four days from the date of the letter. I wondered if my CTA had been reviewed and they had seen the abnormality within my vertebral artery. I emailed Dr T explaining I was yet again confused as earlier in June I had received similar to arrange a new scan. Dr T responded by saying his recollection from our May appointment was that I had requested a further MRA scan to question dissection. I honestly could not believe what I was reading in his email and he obviously has no recollection of the previous emails between us earlier in June when I received the previous letter regarding a scan. I responded and told him the whole situation was becoming ridiculous and that I would be seeking advice to make a complaint.
I received a copy of the CTA scan that was carried out in March and I managed to view it on the 16th July. I can see the abnormality on the CTA of the vertebral artery at V3 level/atlas loop. I can see evidence of a dissection due to the double lumen showing, it does not look like a fenestration. Now what concerns me is that I asked Dr T at May's appointment if my vertebral artery showed the double lumen as it was showing on my Mra and he said no. I then asked him if it showed a natural fenestration of the artery and he said no it was patent and normal. I managed to read the report on the disc (bearing in mind I never received a letter or report about my CTA) The report reads:
>[Report Summary]
<BR>Clinical History :
<BR>? Left carotid dissection on MR angiography.
<BR>[CT Angio aortic arch and carotid Both]
<BR>CT Angio aortic arch and carotid Both :
<BR>CT angiography obtained from aortic arch to vertex
<BR>Normal appearances of the aortic arch and the origins of the
<BR>great vessels.
<BR>Normal appearances of the common carotid and both internal
<BR>carotid arteries from origin to termination.
<BR>Intracranial circulation appears unremarkable.
<BR>Vertebro-basilar system is patent. The basilar artery and
<BR>its branches are normal.
<BR>Imaged soft tissues and bones are within normal limits.
<BR>Imaged lung parenchyma appears unremarkable.
<BR>Conclusion: Normal appearances of the neck vessels.
If you managed to grasp any of it you will have noticed Dr Tyagi my Neurologist has questioned a CAROTID ARTERY DISSECTION and not the VERTEBRAL ARTERY DISSECTION. The Carotid has been looked at and reported on, nothing mentioned about the left vertebral. Not that it matters as the double lumen can still be seen on the scan, even for me who has no medical training its not hard to notice it. I am at a complete loss at the amount of times doctors have failed to listen to me. There is no excuse, I have given them the report from Dr Shapiro in New York and it states Vertebral, the emails that have gone backwards and forwards between Dr T and myself all state Vertebral. At my appointment in May all the talk was about how my Vertebral was normal.
I decided not to email Dr T but instead start the complaint process by visiting Citizens Advice on the 21st July. I can't keep giving these doctors any more chances, they are putting me at risk, I have two children to care for who need me. I could be at risk of having another dissection in any of my arteries because no one has investigated to say otherwise. What if I didn't know any better and done some overhead painting again, there is nothing to say it won't happen again and my research shows it does frequently happen specially if people have any sort of connective tissue disorders.
Today, 24th July I received a letter from hospital to state my drug infusion has been brought forward to the end of August which is better than November. I am very unsure about this drug considering it constricts the blood vessels and I am very apprehensive about going into hospital where it is clear that sub standard practices take place. None of the imbeciles I have dealt with can read a scan properly.
All for now
Your still Whooshing & Whirring Friend
Tuesday, 23 June 2015
June 2015 Update
I have nothing positive to update as yet. I received my appointment through for the drug infusion for November 2015, it also states MRI scan & Review. It looks like they are planning to do a scan whilst I am in hospital in November. I find it entirely unacceptable I have been begging for help since November 2012 and now I need to wait over three years for treatment.
On Wednesday 3rd June I received a letter from a hospital in Glasgow called New Victoria Hospital stating they could not contact me by telephone to arrange my MRA and could I telephone them within one week or my appointment for the scan would be cancelled. I thought it strange as Dr Tyagi did say at my previous appointment that one of the three options was that he could arrange for all my scans to be repeated but he would see no need, I had chosen option one which was the drug infusion. Now I was thinking Dr T was on my side and he had gone out his way to arrange another scan. I telephoned the New Victoria Hospital over the following days and never got a response it was a constant answer phone, I left two voice mails with my telephone number, CHI number & date of birth. To be honest I was totally confused as I did not have any missed calls on any of my telephones from the standard 0800 6783393 Nhs number. I have given my telephone numbers to numerous medical staff who have asked for it over the last 2 and a half years so this baffled me. On the third day after not receiving a response from New Victoria Hosp I emailed Dr Tyagi to let him know I had received such letter and that I was confused. I also reminded him I had requested a copy of my CTA on three previous occasions and had yet to receive it. His response was "I am confused as well because I received an email from the neuro-radiologists questioning why I was asking for an MRI scan when a CT angiogram had been normal (I have written to you in this regard). Let me make enquiries and I will revert to you"
It gets more confusing, later that day the post arrived and I did indeed have a letter from Dr T stating that my request for MRA had been refused due to having a normal CTA. I never requested an MRA in the first place and does Dr T actually know what he is doing, he is the only one who is able to request scans. I still had no answer to what had gone wrong with the letters and his promised "let me make enquiries and revert to you" has never happened. He never does what he states he will do. Yesterday on the 22nd June I sent another email stating I wish to make a subject access request and this was now my 5th time requesting a copy of my CTA scan that was carried out on the 19th March and had been requested on five occasions since 8th April. Dr T responded "I have requested for the CT angiogram images on a cd again this afternoon." Now this is the first time he has ever acknowledged that he has requested my scan, in previous emails he said he would do it for me and then nothing or he would disregard it in the other emails and only answer part of my queries. I also asked twice at my previous appointment with him on the 20th May if he could please get a copy of the CTA to me and he said he would.
I am getting closer to the end of a very long rope. What do I have to do to get doctor's to listen to me.
I HAVE A SOUND IN MY HEAD THAT SOUNDS LIKE A BABY'S ULTRASOUND, I HAVE A CONSTANT LEFT SIDED HEADACHE, I HAVE CONSTANT LEFT SIDE NECK AND EAR PRESSURE, I HAVE A BLUR IN MY LEFT EYE, I HAVE BALANCE ISSUES WHERE I GET PULLED TO THE LEFT SIDE, I AM EXHAUSTED BY LATE AFTERNOON, MY HEAD BECOMES EXTREMELY HEAVY, EVERYTHING I DO NEEDS TO BE DONE AT A SNAILS PACE.
Maybe I have severe psychological issues, maybe my mind is not as sound as I think it is, is my brain sending false signals, maybe I don't have a sound in my head, maybe I'm imagining it all? And maybe Elvis Presley is still alive and maybe all doctors who are covering each others backsides need to take responsibility for their failings in treating me fairly!
On Wednesday 3rd June I received a letter from a hospital in Glasgow called New Victoria Hospital stating they could not contact me by telephone to arrange my MRA and could I telephone them within one week or my appointment for the scan would be cancelled. I thought it strange as Dr Tyagi did say at my previous appointment that one of the three options was that he could arrange for all my scans to be repeated but he would see no need, I had chosen option one which was the drug infusion. Now I was thinking Dr T was on my side and he had gone out his way to arrange another scan. I telephoned the New Victoria Hospital over the following days and never got a response it was a constant answer phone, I left two voice mails with my telephone number, CHI number & date of birth. To be honest I was totally confused as I did not have any missed calls on any of my telephones from the standard 0800 6783393 Nhs number. I have given my telephone numbers to numerous medical staff who have asked for it over the last 2 and a half years so this baffled me. On the third day after not receiving a response from New Victoria Hosp I emailed Dr Tyagi to let him know I had received such letter and that I was confused. I also reminded him I had requested a copy of my CTA on three previous occasions and had yet to receive it. His response was "I am confused as well because I received an email from the neuro-radiologists questioning why I was asking for an MRI scan when a CT angiogram had been normal (I have written to you in this regard). Let me make enquiries and I will revert to you"
It gets more confusing, later that day the post arrived and I did indeed have a letter from Dr T stating that my request for MRA had been refused due to having a normal CTA. I never requested an MRA in the first place and does Dr T actually know what he is doing, he is the only one who is able to request scans. I still had no answer to what had gone wrong with the letters and his promised "let me make enquiries and revert to you" has never happened. He never does what he states he will do. Yesterday on the 22nd June I sent another email stating I wish to make a subject access request and this was now my 5th time requesting a copy of my CTA scan that was carried out on the 19th March and had been requested on five occasions since 8th April. Dr T responded "I have requested for the CT angiogram images on a cd again this afternoon." Now this is the first time he has ever acknowledged that he has requested my scan, in previous emails he said he would do it for me and then nothing or he would disregard it in the other emails and only answer part of my queries. I also asked twice at my previous appointment with him on the 20th May if he could please get a copy of the CTA to me and he said he would.
I am getting closer to the end of a very long rope. What do I have to do to get doctor's to listen to me.
I HAVE A SOUND IN MY HEAD THAT SOUNDS LIKE A BABY'S ULTRASOUND, I HAVE A CONSTANT LEFT SIDED HEADACHE, I HAVE CONSTANT LEFT SIDE NECK AND EAR PRESSURE, I HAVE A BLUR IN MY LEFT EYE, I HAVE BALANCE ISSUES WHERE I GET PULLED TO THE LEFT SIDE, I AM EXHAUSTED BY LATE AFTERNOON, MY HEAD BECOMES EXTREMELY HEAVY, EVERYTHING I DO NEEDS TO BE DONE AT A SNAILS PACE.
Maybe I have severe psychological issues, maybe my mind is not as sound as I think it is, is my brain sending false signals, maybe I don't have a sound in my head, maybe I'm imagining it all? And maybe Elvis Presley is still alive and maybe all doctors who are covering each others backsides need to take responsibility for their failings in treating me fairly!
Saturday, 23 May 2015
My scan Images
Above is a link to view a few of my scan images that I can see an abnormality on the vertebral around V3 level at the atlas loop. Two Interventional Radiologists from New York and India have reported on my scans. Another doctor from Florida suggested a healed vertebral artery dissection where a haematoma has penetrated the three layers of the artery and created a double lumen of the artery which basically means the artery has two channels at a small part of the artery at the back of the atlas loop where blood flow is being pushed through both channels. I now understand why I am hearing the turbulent rhythmic sound in my head, its due to the blood flow, I can imagine if a hose had water pumping through it and the hose split into two channels and then met up again then the sound would be turbulent.
I believe my symptoms are real and of someone who has experienced a VAD. I can see the images are showing evidence of a VAD. The NHS (National Health Service) do not agree and state my MRA scan is normal. My Neurologist Dr Tyagi stated to me and Mr Wanderer that the scan has picked up something that is not there and that the scan is normal. I have unfortunately lost trust in all of these doctor's who have constantly closed doors and not allowed proper investigations to take place when I first presented. My MRA was arranged by myself two years after my symptoms started as my GP would not refer me to Neurology.
While I have researched constantly on my symptoms I won't stop until I have definite answers. I speak with so many sufferers who are experiencing pulsatile tinnitus and many do indeed receive a diagnosis. It takes an astute doctor to question what their patient is presenting with, unfortunately for the rest of us our doctor's put us into the tinnitus bracket even though we explain a baby ultrasound rhythmic sound in time with the pulse. There are many doctors who will also agree that their patient is suffering from pulsatile tinnitus and believe it needs no medical work up as they assume it is normal tinnitus which simply pulses. This is a myth and after searching through hundreds of medical reports of which I would say 80% were all blood flow restrictions within the head and the other 20% were tumors. I came across an extensive list of possible causes of pulsatile tinnitus. A few of which were Carotid Dissection, Vertebral Dissection, Aneurysm in the arteries and veins, Dural Arteriovenous Fistula, Stenosis of the sigmoid and transverse sinuses (veins leading to the jugular) Ateriovenous Malformation, Temporal bone defects, Superior Canal Dehiscence & High riding jugular bulb. The most important thing to remember is most of these causes can be diagnosed and can be treated. Doctor's need to realise that any small stenosis either in the veins or arteries carries a risk of stroke. I would immediately think that doctor's would want to investigate pulsatile tinnitus symptoms when any of their patients present with it.
It leads me to question how much training are GP's in the UK given on tinnitus and pulsatile tinnitus? Surely with advancing medicine refresher courses and on going training would cover pulsatile tinnitus. And finally PULSATILE TINNITUS IS NOT TINNITUS My acronym suits this condition perfectly which is RATS. Rhythmic Arteriovenous Tinnitus Sounds! When a patient presents with RATS a GP should ask the patient to take their pulse with three fingers on their wrist and see if the sound in their head matches what they feel on their wrist, another option is to ask the patient to tap out the rhythm with a finger on the desk.
All for now Whirring Wanderer
Subscribe to:
Posts (Atom)