Whirring Wanderer
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
May 2015 Update
Wednesday 6th May I called my GP surgery to see if they had heard from my Neurologist as I had yet to receive a letter about my results of the CT Angiogram that I was promised. The receptionist confirmed that they had indeed received a report from Dr Tyagi on the 16th April and that it was noted I had been sent a copy of the report. I explained that I had received nothing. The receptionist suggested that I call the hospital. I decided to email Dr T again to remind him I had still not received the promised report/letter or a hard copy of the CTA that had been promised nor a follow up appointment. I explained how I was still suffering and no one was helping me and I reminded him that I'd been doing all the chasing and investigating my symptoms from January to May. He responded by asking that I go to the hospital the next day on the 7th May. I called my husband Mr Wanderer but he was unable to get time off work at such short notice. Dr T responded and asked that I visit the hospital on the 20th May at 1.30pm and copied his secretary into the email. I spoke to Mr Wanderer again and he said he could take a holiday from work that day.
On the day I felt a bit apprehensive, I had this strange feeling that something wasn't right and wouldn't go to plan but I kept telling myself I was being silly.
We arrived five minutes early to find the reception, when I spoke to check in the reception chap said I was already checked in. The receptionist was slightly puzzled and repeated my name back to me and an address in Hawick. I immediately said that was not my address and asked was there a possibly of two people with the same name. The receptionist still puzzled, asked me to confirm my date of birth and address to which he replied the other lady was almost twenty years older. I asked had we both been booked in for 1.30pm to which there was a hesitation and then a yes, we were both there for one appointment. I showed the email from Dr Tyagi and his receptionist confirming my appointment. We had a seat in the main reception, then the receptionist appeared and said there was a lady sitting in the waiting room for an appointment that was not needed. We were then taken to a waiting room. I looked around to see if I could see the "other me twenty years older" As the time was going on I realised that the other lady was obviously in seeing Dr T. Eventually she emerged and I heard reception chatting to her and apologising.
When I was called for by the nurse for my appointment it had gone 2pm. Dr Tyagi started off by explaining the error and that he was partly to blame and so was his secretary and that the other lady had been sent a letter for todays appointment. Dr T then carried on with the appointment and asked me to explain my symptoms, he went into my file on the computer then quickly closed it again saying "I will get that sorted" Mr Wanderer and I seen the other ladies letter in my file which was obviously the letter that was meant for me. I was slightly annoyed that I had to explain my symptoms again as I had given them on every occasion I'd seen him and I had also typed them up and given a paper copy to him, anyway at least he would maybe remember this time. I still had an underlying feeling he doesn't really remember me or my case. I decided not to be a difficult patient and proceeded to list all my symptoms again which he typed into his computer. Dr T then began to explain had I hypothetically had a dissection what the treatment would have been and that it would of entailed six months of anticoagulants or aspirin. I questioned everything he stated and said that hypothetically had I of had a dissection that healed without causing a false lumen then that might of been the case yet here I was clearly suffering on going symptoms of dissection because of the false lumen pressing on adjacent structures causing nerve damage. I continued and questioned the scans because I had reports from other doctors around the world that said my Mra was abnormal and how did that compare to my CTA. Dr T confirmed that my MRA & CTA were normal and were marked normal. I was getting annoyed and upset at this point because as I explained to him I could see that the artery is not normal and I have over 200 scan images showing same. Dr T decided that an Mra can pick things up and highlight them when there is actually nothing there, he mentioned fat saturation on the scan but I had to remind him that that technique was not actually used on my scans. Therefor what he was stating didn't apply. I mentioned about the MRA being marked normal and how was it possible that I had reports from other doctor's on my Mra that state they can see evidence of a vertebral artery dissection. I asked did the CTA show a false lumen or a double channel in my artery and he replied the lumen was normal and patent. I asked how this was possible and he replied that "an Mra can have movement and show a high signal" but then he back tracked and said "not that there was any movement in your scan". I reminded him that I still had no letter of my result and that I had emailed him on more than one occasion asking for it as well as a copy on disc of the CTA, he said he would get a copy of the CTA for me. He absolutely refuted that I had a dissection and had it been one they would not operate to get rid of the false lumen as I had mentioned that the doctor in New York had suggested how to fix the artery in his report. I asked again that I wanted a copy of my CTA scan and report to get an opinion on it, again he said it was not a problem, that I was entitled to do so. When I got upset Mr Wanderer spoke and gave his opinion it was only then that Dr T offered three options after saying what did I want them to do. I was blunt and said I wanted a diagnosis and wanted to be treated to stop the symptoms, I said surely after suffering over two and a half years I was entitled to find out what was causing all these problems, he sat nodding saying "sure, sure" He then offered a drug infusion to try and take the headache away, which I agreed immediately to. I am now awaiting that appointment to go into hospital and have it done, the other option was to repeat the scans yet he said there was little point in doing so. The last option was an Occipital nerve block injection which I reminded him that he had already sent me for last November that didn't work. I feel he only offered up the options because he felt he needed to be seen as doing something because I was upset. Why could the drug infusion not have been offered last year?
Thanks for reading the never ending VertebralGate
Whirring Wanderer
On the day I felt a bit apprehensive, I had this strange feeling that something wasn't right and wouldn't go to plan but I kept telling myself I was being silly.
We arrived five minutes early to find the reception, when I spoke to check in the reception chap said I was already checked in. The receptionist was slightly puzzled and repeated my name back to me and an address in Hawick. I immediately said that was not my address and asked was there a possibly of two people with the same name. The receptionist still puzzled, asked me to confirm my date of birth and address to which he replied the other lady was almost twenty years older. I asked had we both been booked in for 1.30pm to which there was a hesitation and then a yes, we were both there for one appointment. I showed the email from Dr Tyagi and his receptionist confirming my appointment. We had a seat in the main reception, then the receptionist appeared and said there was a lady sitting in the waiting room for an appointment that was not needed. We were then taken to a waiting room. I looked around to see if I could see the "other me twenty years older" As the time was going on I realised that the other lady was obviously in seeing Dr T. Eventually she emerged and I heard reception chatting to her and apologising.
When I was called for by the nurse for my appointment it had gone 2pm. Dr Tyagi started off by explaining the error and that he was partly to blame and so was his secretary and that the other lady had been sent a letter for todays appointment. Dr T then carried on with the appointment and asked me to explain my symptoms, he went into my file on the computer then quickly closed it again saying "I will get that sorted" Mr Wanderer and I seen the other ladies letter in my file which was obviously the letter that was meant for me. I was slightly annoyed that I had to explain my symptoms again as I had given them on every occasion I'd seen him and I had also typed them up and given a paper copy to him, anyway at least he would maybe remember this time. I still had an underlying feeling he doesn't really remember me or my case. I decided not to be a difficult patient and proceeded to list all my symptoms again which he typed into his computer. Dr T then began to explain had I hypothetically had a dissection what the treatment would have been and that it would of entailed six months of anticoagulants or aspirin. I questioned everything he stated and said that hypothetically had I of had a dissection that healed without causing a false lumen then that might of been the case yet here I was clearly suffering on going symptoms of dissection because of the false lumen pressing on adjacent structures causing nerve damage. I continued and questioned the scans because I had reports from other doctors around the world that said my Mra was abnormal and how did that compare to my CTA. Dr T confirmed that my MRA & CTA were normal and were marked normal. I was getting annoyed and upset at this point because as I explained to him I could see that the artery is not normal and I have over 200 scan images showing same. Dr T decided that an Mra can pick things up and highlight them when there is actually nothing there, he mentioned fat saturation on the scan but I had to remind him that that technique was not actually used on my scans. Therefor what he was stating didn't apply. I mentioned about the MRA being marked normal and how was it possible that I had reports from other doctor's on my Mra that state they can see evidence of a vertebral artery dissection. I asked did the CTA show a false lumen or a double channel in my artery and he replied the lumen was normal and patent. I asked how this was possible and he replied that "an Mra can have movement and show a high signal" but then he back tracked and said "not that there was any movement in your scan". I reminded him that I still had no letter of my result and that I had emailed him on more than one occasion asking for it as well as a copy on disc of the CTA, he said he would get a copy of the CTA for me. He absolutely refuted that I had a dissection and had it been one they would not operate to get rid of the false lumen as I had mentioned that the doctor in New York had suggested how to fix the artery in his report. I asked again that I wanted a copy of my CTA scan and report to get an opinion on it, again he said it was not a problem, that I was entitled to do so. When I got upset Mr Wanderer spoke and gave his opinion it was only then that Dr T offered three options after saying what did I want them to do. I was blunt and said I wanted a diagnosis and wanted to be treated to stop the symptoms, I said surely after suffering over two and a half years I was entitled to find out what was causing all these problems, he sat nodding saying "sure, sure" He then offered a drug infusion to try and take the headache away, which I agreed immediately to. I am now awaiting that appointment to go into hospital and have it done, the other option was to repeat the scans yet he said there was little point in doing so. The last option was an Occipital nerve block injection which I reminded him that he had already sent me for last November that didn't work. I feel he only offered up the options because he felt he needed to be seen as doing something because I was upset. Why could the drug infusion not have been offered last year?
Thanks for reading the never ending VertebralGate
Whirring Wanderer
Monday 27 April 2015
April 2015 Update
Unfortunately I am no further forward. I called my doctor's surgery on the 26th Feb and explained no one has been in touch. The practice manager called me back that afternoon and said they had chased the Neurologist. Dr Tyagi eventually called me on the 27th February to say the Neuroradiologist Dr Rod Gibson from the private hospital reviewed my scan and read Dr Shapiro's report and stated he understood the points raised but there was no definite evidence of vascular dissection and his view is unchanged and the MRA is normal. I was really upset by Dr Gibson's statement. I can see the MRA is not normal, you can clearly see the split through the artery it has created a double barrel lumen. Two weeks later I received the above statement in writing, strangely Dr Gibson seems to contradict himself by stating the vertebral artery is VERY tortuous at the point where Dr Shapiro discusses the possibility of the abnormality being a dissection or natural fenestration, however why does Dr Gibson not state this in his original report that the artery is very tortuous instead he stated the scan was normal and could find no findings to account for the pulsating sound in my head and my headaches.
Dr Tyagi agreed to a CTA which was carried out on Thurs 19th March. After 3 weeks I hadn't received my results and emailed him on the 8th April, I got a reply stating simply "I can confirm your CTA was normal, I will arrange a follow up appointment" It seems the report from Dr Shapiro did not exist and was being dismissed. Dr Tyagi also mentioned in his email I would get a copy of the report soon that was being sent by post. I sent a response back asking why I was so symptomatic if everything was normal, I also asked that while sending the report if he could include a copy on disc of the CTA. He responded back to me on the 14th April and said he would have it arranged to have a copy on disc and that he was sorry I was still having symptoms and would arrange a clinical review.
I have since found another assistant professor who is a Neurointerventialist in India and who has written a medical report on a patient with the same type of dissection as Dr Shapiro reported on mine. I tracked the doctor down to a hospital and emailed my symptoms and a few scan pictures not thinking I would get a response. The doctor responded with marking my images where the dissection was and stated my symptoms are due to the nerve damage of surrounding tissues structures being compressed due to the artery being larger caused by the false lumen and that some of my symptoms for example my balance being off is due to reduced blood flow because of the two channels being created by the dissection. This doctor has dealt with patients who have experienced symptoms the same as mine. Eventually I was getting some sort of acknowledgement for my suffering be it from the other side of the world in India. The doctor asked that I send all my images which I have done and I now await a further reply. Hopefully once I have this doctor's report doctors here in Scotland will believe me and offer to help me of these debilitating symptoms.
Thank you for reading my pathetic but desperate posts.
Whirring Wanderer
Dr Tyagi agreed to a CTA which was carried out on Thurs 19th March. After 3 weeks I hadn't received my results and emailed him on the 8th April, I got a reply stating simply "I can confirm your CTA was normal, I will arrange a follow up appointment" It seems the report from Dr Shapiro did not exist and was being dismissed. Dr Tyagi also mentioned in his email I would get a copy of the report soon that was being sent by post. I sent a response back asking why I was so symptomatic if everything was normal, I also asked that while sending the report if he could include a copy on disc of the CTA. He responded back to me on the 14th April and said he would have it arranged to have a copy on disc and that he was sorry I was still having symptoms and would arrange a clinical review.
I have since found another assistant professor who is a Neurointerventialist in India and who has written a medical report on a patient with the same type of dissection as Dr Shapiro reported on mine. I tracked the doctor down to a hospital and emailed my symptoms and a few scan pictures not thinking I would get a response. The doctor responded with marking my images where the dissection was and stated my symptoms are due to the nerve damage of surrounding tissues structures being compressed due to the artery being larger caused by the false lumen and that some of my symptoms for example my balance being off is due to reduced blood flow because of the two channels being created by the dissection. This doctor has dealt with patients who have experienced symptoms the same as mine. Eventually I was getting some sort of acknowledgement for my suffering be it from the other side of the world in India. The doctor asked that I send all my images which I have done and I now await a further reply. Hopefully once I have this doctor's report doctors here in Scotland will believe me and offer to help me of these debilitating symptoms.
Thank you for reading my pathetic but desperate posts.
Whirring Wanderer
Wednesday 18 February 2015
Febuary 2015
THURSDAY 5TH FEBRUARY
I contacted my GP surgery to see if Neurology had been in touch and I was asked to call the local hospital appointment department where I was told to give it until Monday and call back. I said it was an urgent referral and it was explained that the referral had not yet been vetted. It had been referred back to Dr Tyagi the neurologist who I had seen recently in December I then called the GP surgery back and explained what I had been told by the hospital, Dr Stevenson was in a meeting so I asked the reception to note that I was frustrated with the lack of speed that it was being dealt with considering it was an urgent referral. I emailed Dr Tyagi myself with a copy of the report from New York.
MONDAY 9TH FEBRUARY
Dr Tyagi emailed to say he had a copy of my scan and with the report I sent from Dr Shapiro in New York he was planning on speaking to the neuroradiologist from the private hospital at Ross Hall that week and then he would be in touch for further management.
WEDNESDAY 18TH FEBRUARY
I have not had a response from any medical profession and still await what the further management is. I wonder what the protocol would be if I had presented with a VAD that had actually been recognised and diagnosed straight away, would I be given medication and sent immediately for an angiogram and given something to take away the extreme headache?
Whirring Wanderer
I contacted my GP surgery to see if Neurology had been in touch and I was asked to call the local hospital appointment department where I was told to give it until Monday and call back. I said it was an urgent referral and it was explained that the referral had not yet been vetted. It had been referred back to Dr Tyagi the neurologist who I had seen recently in December I then called the GP surgery back and explained what I had been told by the hospital, Dr Stevenson was in a meeting so I asked the reception to note that I was frustrated with the lack of speed that it was being dealt with considering it was an urgent referral. I emailed Dr Tyagi myself with a copy of the report from New York.
MONDAY 9TH FEBRUARY
Dr Tyagi emailed to say he had a copy of my scan and with the report I sent from Dr Shapiro in New York he was planning on speaking to the neuroradiologist from the private hospital at Ross Hall that week and then he would be in touch for further management.
WEDNESDAY 18TH FEBRUARY
I have not had a response from any medical profession and still await what the further management is. I wonder what the protocol would be if I had presented with a VAD that had actually been recognised and diagnosed straight away, would I be given medication and sent immediately for an angiogram and given something to take away the extreme headache?
Whirring Wanderer
Thursday 29 January 2015
January 2015 It is not all in my head!!!
Still suffering and still searching for answers. I found a Neurointerventialist in New York by googling and reading reviews. The Whooshers.com website that I have visited often also had good things to say about him and many patients in New York and beyond have reached out to him and been treated successfully. Whooshers website is an interesting read, I found the web site by typing in wooshing and headache. I made contact with Dr Shapiro of Langone Medical Centre in December and sent my Mra/Mrv on disc by post on the 2nd January.
7th January I was expected to be at a Pain Clinic appointment for another Occipital Nerve injection but I forgot about it and I'm ashamed to say I forgot to cancel it. Dr Meiklejohn will think I am extremely rude. The truth is I am extremely exhausted and can't function properly and do not want to keep going to numerous appointments when doctors have no interest in helping me. I have lost all trust in them, I feel like I'm a burden to them and a hypochondriac.
On the 19th January my doctor surgery called to state a prescription had been written for me by the doctor and is waiting to be collected. I have yet to collect it as I am unsure about taking it when I still don't know what is wrong with me. I have waited since the 12th December for the new prescription and I'm sure I can wait a bit longer until the Neurointerventionalist has had a look at my scans, then if nothing is found I will take the new prescription.
TUESDAY 27TH JAN 2015 DIAGNOSIS
I emailed the Neurointerventionalist Dr Shapiro in New York for a timescale of when he is able to view my scans. In the evening he called, I wasn't going to answer the phone as it was showing "outside area" and normally it's marketing calls. Dr Shapiro had emailed me a few images and asked that I switch on my computer to talk through the images. The phone call lasted 45 minutes. Diagnosis; A possible fenestration of the vertebral artery or a Vertebral Artery Dissection (VAD) that has healed separating the artery into two separate channels. The fenestration would cause no clinical symptoms however a vertebral artery dissection would cause all of my symptoms. This all makes sense when I read the symptoms of a VAD and then compare to my own suffering. I believe when my wooshing baby ultrasound noise changed to a whirr is when the artery was healing to form the two channels. I was actually hearing turbulent blood flow!!! I knew there was something wrong, there had to be, I am not imagining all these symptoms. Dr Shapiro suggests a cerebral angiogram to confirm his diagnosis and a balloon occlusion test which would close off the artery to see if it stopped the sound in my head and if so a stent could be placed to help with my symptoms.
WEDNESDAY 28TH JANUARY
I walked and partly staggered 2.2miles to my GP surgery to see Dr Stevenson. I explained I had sent my scans to New York and showed him the images I had been sent from the Neurointerventionalist. The doctor showed a little uneasiness in his seat and stated he wasn't an expert on these type of things and to move forward he would need a report so that it could be sent back to the radiographer at the private hospital where I had the scan carried out. I explained I would not be paying for any treatment or appointments under private care but the doctor explained it had to be referred back there for another opinion. It was very much a pass the buck attitude. Dr St. gave me the GP surgeries email address to forward the report. I emailed the Neurointerventionalist and asked if he would kindly write a report of his findings for my doctor so they could act on it. Thankfully just two hours later he did and I forwarded it my doctor and to the Neurologist Dr Tyagi.
THURSDAY 29TH JANUARY 3.40pm
My GP surgery called to say the doctor had read the report and that an urgent referral had been arranged to Neurology. I asked if I would be contacted by letter or telephone which was confirmed that I would receive an appointment by letter.
It looks like my journey on the NHS roller-coaster is not over just yet.
All for now
Whooshing Wanderer
7th January I was expected to be at a Pain Clinic appointment for another Occipital Nerve injection but I forgot about it and I'm ashamed to say I forgot to cancel it. Dr Meiklejohn will think I am extremely rude. The truth is I am extremely exhausted and can't function properly and do not want to keep going to numerous appointments when doctors have no interest in helping me. I have lost all trust in them, I feel like I'm a burden to them and a hypochondriac.
On the 19th January my doctor surgery called to state a prescription had been written for me by the doctor and is waiting to be collected. I have yet to collect it as I am unsure about taking it when I still don't know what is wrong with me. I have waited since the 12th December for the new prescription and I'm sure I can wait a bit longer until the Neurointerventionalist has had a look at my scans, then if nothing is found I will take the new prescription.
TUESDAY 27TH JAN 2015 DIAGNOSIS
I emailed the Neurointerventionalist Dr Shapiro in New York for a timescale of when he is able to view my scans. In the evening he called, I wasn't going to answer the phone as it was showing "outside area" and normally it's marketing calls. Dr Shapiro had emailed me a few images and asked that I switch on my computer to talk through the images. The phone call lasted 45 minutes. Diagnosis; A possible fenestration of the vertebral artery or a Vertebral Artery Dissection (VAD) that has healed separating the artery into two separate channels. The fenestration would cause no clinical symptoms however a vertebral artery dissection would cause all of my symptoms. This all makes sense when I read the symptoms of a VAD and then compare to my own suffering. I believe when my wooshing baby ultrasound noise changed to a whirr is when the artery was healing to form the two channels. I was actually hearing turbulent blood flow!!! I knew there was something wrong, there had to be, I am not imagining all these symptoms. Dr Shapiro suggests a cerebral angiogram to confirm his diagnosis and a balloon occlusion test which would close off the artery to see if it stopped the sound in my head and if so a stent could be placed to help with my symptoms.
WEDNESDAY 28TH JANUARY
I walked and partly staggered 2.2miles to my GP surgery to see Dr Stevenson. I explained I had sent my scans to New York and showed him the images I had been sent from the Neurointerventionalist. The doctor showed a little uneasiness in his seat and stated he wasn't an expert on these type of things and to move forward he would need a report so that it could be sent back to the radiographer at the private hospital where I had the scan carried out. I explained I would not be paying for any treatment or appointments under private care but the doctor explained it had to be referred back there for another opinion. It was very much a pass the buck attitude. Dr St. gave me the GP surgeries email address to forward the report. I emailed the Neurointerventionalist and asked if he would kindly write a report of his findings for my doctor so they could act on it. Thankfully just two hours later he did and I forwarded it my doctor and to the Neurologist Dr Tyagi.
THURSDAY 29TH JANUARY 3.40pm
My GP surgery called to say the doctor had read the report and that an urgent referral had been arranged to Neurology. I asked if I would be contacted by letter or telephone which was confirmed that I would receive an appointment by letter.
It looks like my journey on the NHS roller-coaster is not over just yet.
All for now
Whooshing Wanderer
December 2014 Update
I had an appointment with the Neurologist Dr Tyagi on the 12th December and he said he would like to try some other headache medications, this was my first time seeing him under Nhs as he had previously promised to keep me under clinical review. I had to remind him who I was as he seemed vague nor had he any recollection that I had paid private for him to arrange an Mra/Mrv. I explained I hadn't received a letter of the report yet but I had already assumed it was normal, he eventually remembered and said it was all normal and that I should have received a letter. He said he would write to my GP with a new prescription and my surgery would call to say when I could collect it.
I got home after my appointment and had time to think and decided to ask for a copy of my images on a disc, I have a feeling that there is something being missed on my scans, I can not be suffering these symptoms for no reason... I emailed Dr T and he agreed to send it. I received the disc recorded delivery a few days later. The images were amazing to see but I have a concern about one of the arteries, I'm sure its an artery on the left and looks as if it has a line through it. It has made me more determined to have my scan looked at outwith the Nhs. I eventually received the letter to state my scan was normal ten days later. I am still waiting on my surgery calling with the new prescription.
Whirring Wanderer
I got home after my appointment and had time to think and decided to ask for a copy of my images on a disc, I have a feeling that there is something being missed on my scans, I can not be suffering these symptoms for no reason... I emailed Dr T and he agreed to send it. I received the disc recorded delivery a few days later. The images were amazing to see but I have a concern about one of the arteries, I'm sure its an artery on the left and looks as if it has a line through it. It has made me more determined to have my scan looked at outwith the Nhs. I eventually received the letter to state my scan was normal ten days later. I am still waiting on my surgery calling with the new prescription.
Whirring Wanderer
November 2014 Update
I had my MRA/MRV on the 28th November. I am still suffering. Previous to that on the 13th November I had an Occipital nerve block injection carried out by Dr Meiklejohn that had no affect at my local hospital pain clinic. It wasn't a pleasant experience to have the injection and I will not have another, it felt like my head had gone to the dentist for half a day and then it was all back to normal. I have an Nhs Neurology appointment in December.
Whirring Wanderer
Whirring Wanderer
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