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
Showing posts with label whooshing. Show all posts
Showing posts with label whooshing. Show all posts
Tuesday, 22 September 2015
Saturday, 23 May 2015
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
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