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Dr Surenthiran


#1

Seeing Doctor S tomorrow any advice what to take with me notes etc?
Thanks


#2

Hi, if you have a diary of your sympthons, triggers along with any medical tests previously completed eg MRI scans, bloods absolutely bring them along. When I go to my neuro, I write down my top 2 or 3 questions or where I specifically need an answer to something, can be useful to keep you on point with getting your thoughts and worries out on the table. These visits go very fast! Best of luck tomorrow.


#3

Alex read as much of the Support Wiki as possible before you go and look at as many of the linked pages as possible. There’s loads of info to bring you up to speed.

Good luck!


#4

Yep, they do, so definitely good to be prepared and not leave everything to ‘memory’.


#5

Thank you guys ! Will make a start now, hoping for a new perspective on it all fingers crossed. :pray::pray::pray:


#6

I have started seeing Dr.S recently - I would take some notes/questions with you. I found the appointment quite draining and my brain was mashed by the end and I didn’t ask all the questions I should have (for my situation). Time was also an issue - the diagnosis basically took up the allotted 45 minutes and so we went into “overtime” for him to explain how he thinks the symptoms start in the brain (which I knew from reading about it but was part of his diagnosis and explanation process) and to prescribe meds. Dr.S was also running way over time as he had spent longer with previous patients for their allotted time too.

Dr. S is very nice and friendly and I finally feel I have someone who will stick with me through to a treatment that works. In the past as soon as I felt a bit better I would be discharged from NHS clinics (ENT/Migraine) with no long term plan for treatment - it was always about just getting me a bit more functional and “over a hump” and then set adrift as there were too many people on the waiting list needing help. Dr S does talk a lot as he wants to provide a lot of information - so I found some of it difficult to piece together afterwards.

Has your GP sent him a letter? I was self referred and was asked to send a brief history in by email beforehand. This was useful as I had motion sickness, and a head trauma when I was a child (which probably isn’t on my notes given my advanced age) and then migraines many years before the balance disorder started and he’d read it beforehand and I think it helped with the diagnosis as we talked about it.

The first half hour of the appointment consisted of a grilling about my symptoms on a bad day/phase and he was very thorough - I found it quite challenging as I was in a bad phase and felt dizzy, shaky and brain fogged - I was doing well just to attend the appointment. There were also several balance tests - marching on the spot with eyes closed, walking heel to toe with eyes closed, an ear examination, tracking his finger, tracking and touching a light and maybe a few others. I felt really dizzy after those when I sat back down. Dr.S then explained all about irritated brain stems, the link to the fight or flight mechanism (and anxiety/panic), the jug analogy and a lot more about why he was certain I had MVBD given my history. We were 20 minutes over time by that point - so he quickly prescribed some meds - but I didn’t ask enough about how to take the meds, the steps to go up in if I was struggling, what the long term plan was etc. as I was just physically and mentally exhausted A crib sheet of questions would have helped although a lot of them will be answered in the course of the appointment.

Even if you don’t use your crib sheet - it can’t hurt. It’ll help focus your mind in advance on what you need to know and get from the appointment.

Good luck. I hope it’s the start of getting some proper help and advice for your condition.


#7

Hi Alex
Sorry I am probably too late to be of use re your question. I saw Dr S for the first time in June and I had self referred so he didn’t have any of my previous history so we had to go through a bit of that to start with. I took my husband in with me as I was so anxious with all the symptoms I knew I wouldn’t remember everything. I hope it all went well for you - Dr S is one of the best so I am sure he will have been helpful. Let us know how you got on. Jan :blush:


#8

Thank you all for your advice and help :slight_smile: I’ve just got back I’m shattered. My dad drove us from Worcestershire to Blackheath hospital where he’s based it’s been a loooong day but worth it !
I had a referral from my GP but self funded. It went very much as you said, he was without the best I’ve ever seen and his analogy with jug spilling water etc really made sense.
So the life style changes will begin and the food diet (tried these before but didn’t quite understand what it was for). He’s decided to swap me from Ami to Nortryptaline which is a straight swap, a little anxious but I’m going all in with it. I know what you mean about the questions I did lots of notes but it was so overwhelming I forgot a lot. Not sure exactly how much to step up Nort med but I think he advised my GP maybe. All in all I’m feeling positive… I mean we have to be right…! Hope your all having a MAV free evening :slight_smile:


#9

Glad it was a positive experience for you. No wonder you are shattered - that is a long way to travel. Dr. S writes your GP a longer letter (than the clinical note and prescription he has given you for the first month or so’s treatment) - you can ask his secretary when you are paying your invoice to get a copy of the letter emailed to you when it is ready. I found that cleared up some of my questions about dosage and stepping up the treatment.


#10

Glad it went well for you. Well done to your Dad but what a journey. Ridiculous when you are so near Birmingham, our second biggest city, and it cannot fulfill your medical needs. A crazy situation fortunately in your case rectified by a devoted parent. Well done him! Rest up a bit. Travelling with MAV takes its toll. Helen