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
Wednesday, 27 April 2016
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
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