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
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