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

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

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