Today's consultant visit.....Arrrggghh!

Just got back from an appointment with my ENT consultant, following last week’s caloric tests. He explained that I have 30% loss in balance function on my right side and basically if my brain hasn’t compensated by now for it then it never will. Just live with it he said. As for his MAV diagnosis last time, he said that if Pizotifen has lessened my headaches but not my dizziness, then it means I don’t have MAV. Be positive, adapt your life and accept you have a chronic disability and just get on with it.

That was it!!! No, I didn’t bother screaming at him or slapping him. I just said ‘whatever’ and walked out.

Where do I go from here apart from head first over the motorway bridge!!!

what a Muppet!!

sorry to hear that

i wouldn’t trust anything the ENT said i would see DR S he has a VRT physio who he works with. So if you have got damage i am sure she will help

Don’t give up! Find another doctor. Have you tried any other meds? If you have only been on 1 medication it is not fair to say that something else won’t help. Move on and find someone that truly cares. When all this happened to me, my doctor eventually said that maybe I would have to give up my job if I wasn’t getting better. I would NOT accept that (and I know he didn’t like saying that to me…but he still did anyway…). So far he was wrong and my drug combo has been working. Although not everyday is “ideal” I continue to work full-time, and do just about anything I want to. Hang in there…and definitely don’t give up.

No I won’t give up just yet. I would like to see a neurologist who specialises in MAV for their opinion, as I fit into MAV diagnosis much more than anywhere else. Definitely going to give up on ENT now, after 15 years its time for me to move on :expressionless: Pizotifen is the only medication I have tried so far. Been on 1.5 mg for about 4 weeks now, total of about 8 weeks overall and I agree jenh that its not long enough to give it a fair trial. I asked doctor about other medication and he said ‘no point if pizotifen hasn’t worked - definitely means not MAV’, which I agree its a stupid statement but then he isn’t a neurologist I suppose. Going to make an appointment with my GP for referral to neurologist. Oh I am so fed up of the medical profession!!!

Angela, really sorry to hear this but all the ENTS I saw were hopeless. Can your GP refer you to Dr Surenthiran on the NHS? x

Hi Jem, I am sure my GP would refer me however, I couldn’t travel all the way to Kent unfortunately. Car journeys, especially as a passenger, are a nightmare. You know the other day I went on the menieres forum and a lot of people there were saying they saw Dr. Surenthurian too. So does this make him an ENT consultant as well as Neurologist?

A medical friend of my sisters has given me the name of a neurologist who works out of Salford Royal Hospital who not only specialises in Migraine but is obsessed with it. Now that would be good someone passionate about something :smiley: His name is Adam Zemansky. I may run this by my GP and see what he says.

So sorry to hear this! Doctors really need to be trained in this awful illness. I went through this too, with a neuro-otologist who prescribed propranolol and told me I couldn’t have MAV as the propranolol had no effect whatsoever on me. Useless waste of my time. I’ve seen way too many ‘specialist’s’ who have told me its either psychological and there is nothing they can do for me or that it is chronic and I have to learn to live with it. I refuse to accept that and am finally going to see Dr S on Friday. Tired of wasting my time and what little is left of my optimism on doctors who have no clue.

I don’t fault you on not being able to travel to Kent - I can’t do anything more than local journeys myself. The train to London is going to make me terribly ill, but I’m hoping it will be worth it! Best of luck to you - someone who is passionate about migraines sounds very positive to me!

Hi angdunc

Dr Sureinthiran is a Neuro-Otologist. He is the best in country with dealing with MAV etc

is there no way you can get to Kent?

Hi Ang, as Hillsta says Dr S is a Neuro-otologist so that means he is a cross between a Neurologist and an ENT. He is the best in the UK I think but I understand about not being able to make the journey to Kent. If you have had a recommendation for a migraine specialist locally then that is a very good place to start so yes why not ask your GP to refer you and hopefully the neurologist will give you a list of different meds to try x

i would say the second best is Nick Silver. This is only may opinion. Obviously i don’t know about anyone else.

Can you get to to Nick silver?

Angdunc,

I like the idea of seeing this Adam Zemansky, who is passionate about migraines.

Finding a doctor that is passionate about helping you will make all the difference in the world. Did for me :slight_smile:

Maybe you can spark this guy into becoming the newest MAV specialist in the UK. Bring the info posted on this forum. You never know.

Good luck,

Kathleen

Thanks everyone for your encouraging words. Travelling to Kent would be just awful - too awful. I could try Dr Silver - based in Warrington you say Jem?

What I want to know is do people with Mav have equal balance function between left and right or do we all have a difference? May put a post up asking for people’s caloric test results. This ENT man has put me in no man’s land. No diagnosis at all but still symptomatic. Spent the evening being so angry so put on a sloppy film to make myself cry :frowning: Result = puffyeyes!!! still angry and still my dizzy self.

Yes Dr Silver can be seen at Warrington Hospital. He will probably give you a list of 5 migraine meds to try so would definitely be worth a shot. I had a normal caloric test. I believe people with MAV can have normal tests or they can have vestibular loss. Neither result proves or disproves MAV. I would definitely have thought that if you just had 30% loss in one ear then you would have compensated for that easily within the 15 yrs you have been suffering. I think there must be something more going on to cause this to keep going so long and also you said it has worsened in the last year. That is why it sounds like MAV and if the ENT can’t find anything else wrong with your ears then it is even more likely to be MAV. Have you had blood tests or a test for Lyme disease Angela? x

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Just got back from an appointment with my ENT consultant, following last week’s caloric tests. He explained that I have 30% loss in balance function on my right side and basically if my brain hasn’t compensated by now for it then it never will. Just live with it he said. As for his MAV diagnosis last time, he said that if Pizotifen has lessened my headaches but not my dizziness, then it means I don’t have MAV. Be positive, adapt your life and accept you have a chronic disability and just get on with it.

— End quote

Hi Angdunc,

This is just 100% pure bullshit. Don’t listen to the idiot.

  1. A caloric of 30% or less is to be disregarded. A “normal” person can score this result. The caloric test is very crude at best – these words from an interview with Prof Baloh at UCLA, arguably the world leader in migraine research and it’s genetics. It’s also been written up in the literature by Prof Halmagyi how very crude it is. It has its use as an indicator for some but that’s it.

  2. Your brain cannot compensate while the migraine process is active. That’s not how this works. You’ll need to control migraine and then, if needed, your brain will compensate. It cannot compensate however, if the brain continuously gets mixed signals from a hosed migraine brain.

  3. A failure on pizotifen means nothing in terms of dx. Many here have had pizotifen work for them and fail for them (it did nothing for me!). You simply have to think about that migraine treatment algorithm in the National US Guidelines and follow that as a guide under the supervision of a physician who knows what they’re doing.

  4. He is correct that this is a chronic problem – in that there is currently no cure for migraine; however, with excellent management, symptoms can be reduced to zero or near zero.

Maintain the rage and move on! You’ll be OK. Knowledge is key.

S 8)

Yes Scott the treatment of me all these years proves the caloric tests mean nothing. My balance loss is in right ear yet they gave me operations etc in my left just because I said I had fullness in it. Total crap then, why bother doing them?

Yes I am going to get an appointment with a reputable neurologist and go down the MAV route because I fit in this category more than anywhere else. ENT doctors over the years have never taken my symptoms seriously ie., the visual vertigo, off balance, light sensitivity etc. The only thing they have ever been interested in is whether I have hearing loss or not.

So again thanks for all your encouragement. I am stronger again this morning (mentall) but not physically - feel very ‘off’ for me and I can only put this down to the bloody massive pizza I had last night. I had to have it for medicinal purposes :slight_smile: but boy am I suffering today.

My god, that’s indeed bull**** :evil:
I’ve seen quite a few ENT’s, they sometimes do not know what they are talking about.
Seeing another neuro-otologist in two weeks.

Hope the neurologist you will see can help you. Hope you don’t have to wait too long.

Hi Ang,

I’m sorry your consultant is a complete dickhead.

Dr S does consults in London as well at Blackheath.

I know you say you couldn’t hack a journey like that but I would strongly consider you to do so. You could do it in 2 parts- take a train to London the night before for instance and stay in a hotel.

I know it is a massive hurdle but it would be the first step towards you getting much better.

ENT docs in my experience and opinion, will NEVER take MAV seriously because they straight forward aren’t trained to deal with it- it’s not in their remit- they don’t cover disorders of the brain, so you need to see a neuro or a neurotologist. I’m just fearful that even if you do see a regular neuro, you’re not going to feel satisfied enough so Dr S is a better idea.

i agree with missmoss. Can you try and find a way to see him. Try and break the journey up. I just have a feeling you might be having he same conversation in a years time if you don’t see him!! i think you will find its worth it

I am so sorry you are going through all of this.

I can tell you, I am trailling pitz (think we started about the same time) and it hasn’t fixed me! What it has done though is increase my appetite severly and make me feel like a zombie on 2mg. My neuro didn’t seem concerned at all that it didn’t work, he still thinks it’s MAV and I am now trialling Topamax next week. I was much more concerned that the specialist!

Don’t take any of that rubbish on board. You need to see someone who actually gets it!

I travelled 14 hours to see the guy I saw and I don’t regret it for a second. I find flying difficult, so we had to drive. Some specialists will agree for you to send all your tests and have a phone consult if you can’t travel. Perhaps try that? Anything is worth preventing yourself from having to listen to any more crap from untrained doctors.

Thinking of you!