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
Tuesday, 16 May 2017
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
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