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

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