Mr Wanderer and I travelled to London from Scotland for my appointment on Wednesday 18th January. We arrived at The National Hospital for Neurology and Neurosurgery at 10am we were met with a very dour woman/nursing assistant who took my blood pressure and my weight. A smile would of gone a long way, but I'm sure she was just having an off day or maybe recovering from a wine headache. Would you believe the scales were 1.5 stone out which meant I'd put on a stone and a half within a day travelling from Scotland to England, thankfully I lost the 1.5st by the time I'd got back to Scotland. We met first with a Dr Leckie/Lecky? he welcomed us into the room and explained he had a Scottish family connection and had done his training there. He showed me the referral letter from Dr Tyagi which I had a copy of in my bag, he said it was a basic referral and we would start at the beginning and that's when I relayed all my symptoms on when they started. He focused on the headache and seemed to disregard the pulsatile tinnitus explaining that it was tinnitus with a pulsatile nature, I went on to explain that in America it now had a diagnosis code of its own and was regarded as a separate symptom from the normal ringing buzzing tinnitus. I went through my symptoms in detail and gave enough information on how the noise in the left of my head started one evening followed by the headache the next morning. I went on to say about the other symptoms developing and how I'd gone to my GP several times, A&E, ENT, changed GP surgeries and arranged to have private scans carried out. I explained that I was convinced the symptoms started after painting my ceiling over two days and had relayed the same information to each Doctor I'd seen. Dr Leckie said "I see that's where the dissection story comes from" I mentioned I could hear the sound in my head with a stethoscope and although he listened later towards the end of the consultation he couldn't hear it, to be honest there was background noise and I couldn't pick it up myself, not that it matters I know the noise in my head is blood pumping through the section of my vertebral artery that has had a previous tear. Dr Leckie said he seen many patients with vertebral artery dissection and all had serious strokes. (For note not everyone who has a vertebral artery dissection has a stroke and some can present with just headache or just neck pain) I explained how I'd tracked down doctors on the other side of the world and sent my scans and symptoms and all had came back with the same diagnosis however no doctor in Scotland could see on the scans what the others were reporting, neither was there much investigating into my symptoms or trying to match them up to what was showing on my scans. I also mentioned that Dr Tyagi had on his paperwork it was a carotid artery dissection being questioned. I made it very clear that at no point was the carotid ever being questioned (this was a mistake that Dr Tyagi made) . I also explained that when I'd had a hospital stay for the drug infusion back in 2015 that two consultants spoke with me in regards to my scans and could see no evidence of a carotid dissection (again wrong information and wrong artery) I asked Dr Leckie if he had any of the reports or scans and he said no. I then gave him a copy of the report from Dr Shapiro in New York. Dr Leckie had asked how my health was overall and I said it was very good, I suffered from Hypermobility Syndrome sometimes known as EDS 3 but that I had managed it well over the years and kept my muscles toned with walking. Mr Wanderer and I were then asked to take a seat outside in the waiting area and then I would be seen by Dr Matharu.
We waited around 15 minutes outside the room and could hear conversations taking place with Dr Leckie relaying the information to Dr Matharu, we were then invited to speak with both doctors. Dr Matharu focused on diagnosing my EDS hypermobility and went through the Beighton score with me which I've already had done years previously by a Rheumatologist. I was a bit miffed on why he was focusing on it but then I realised he had already diagnosed me before I entered the room from the information I gave to Dr Leckie. Dr Matharu stated he seen many patients with EDS and what I had was a New Daily Persistent Headache Syndrome with no underlying cause but that it was linked to EDS. I asked why now would I suddenly have a new headache accompanied by many other severe symptoms when I'd never been bothered by headache before? Dr Matharu moved on to say that I had developed the condition. I'd actually read about this particular headache a few years previously and ruled it out as I was never sick or suffered nausea, the pattern didn't fit. I listened for a bit then interrupted to state I didn't agree and that I knew the cause of my headache was to do with the previous missed tear in my artery. Dr Matharu said it is what it is you have a daily persistent headache, he said he agreed with his colleagues findings and that there was no vertebral artery dissection and although new daily headache occasionally had an underlying cause, mine was a primary condition and he seen many patients with EDS who had that same new daily headache. I said I didn't agree and that Dr Tyagi had been reporting on the wrong artery, Dr Matharu then stated he had since received further communication from Dr Tyagi to say my scans had been re looked and there was no vertebral dissection. (I was obviously not copied in to that communication yet again) I went on to ask why I can see lines on my scan images and tried to show an image on my phone, Dr Matharu refused and said they had the best doctors and he was 100% sure that I had not suffered a dissection. Dr Leckie then asked even if we did find a dissection what do you think we can do, I explained about Dr Shapiro's report and how he could close off the false side of the artery to stop my symptoms, both doctors said they wouldn't do that and that I would be creating problems for myself. I felt myself becoming angry, they were both being arrogant in answering my questions. Did they honestly expect me to sit quiet after travelling down from Scotland for a second opinion when they had not read reports or my scans and tried overwhelmingly to convince me that my diagnosis was that of daily persistent headache caused by EDS? I continued to talk and state that something was causing my symptoms. Dr Matharu eventually offered to repeat scans and compare them and I'd be invited back to London, he continued "I can assure you we won't find anything" I don't doubt his intelligence but he was certainly doubting mine. I had seen the scans, he had not! I tried again to show an image on my phone but was brushed off, I then repeated again please look at this one image where you can see an intramural haematoma and at that I took my phone out my pocket and thrust it towards them, both doctors stated there wasn't anything and had a few whispers to each other, Dr Leckie said it was hard to tell from one image, I reminded him that there were several more images showing the same, Dr Matharu stating don't worry about it we will compare all your other scans to the new scans. I felt his manner was self assured that he was right and I was wrong, he repeated they had the best doctors, in my opinion I had yet to see the best of doctors. Not a single Doctor has taken Dr Shaprio's report seriously. I asked do you believe that image is normal as well as the others in Dr Shapiro's report showing a clear line through the artery and Dr Matharu said look I'm happy to be proved wrong but I don't see anything and I don't believe you had a dissection I'm 99% sure I don't think we will find anything. Dr Matharu offered to arrange scans and trial some medication over 5 days, the waiting time would be around 3 months. Dr Matharu's certainty dropped from 100% to 99%.
In my opinion I wasn't given a fair second opinion, I was diagnosed before I entered the room. For both doctor's to diagnose without looking at my symptoms in detail and not having looked at my scans is very poor practice. Having disregarded my other symptoms and Dr Shapiro's report I have no trust in these doctors.
Overall the appointment went how I'd imagined and it wasn't a surprise that my original symptoms were dismissed. No one can explain why I'm having numerous symptoms, no one can explain what's on my scan, no one is willing to link my symptoms to what is clear on the scans. Having studied various literature on dissections and looking at scans I know what is on my scans.
All for now your still whooshing whirring friend
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