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Reached a "vertigo free" milestone!

#1

Dear All

Anyone who has read my posts will know I was misdiagnosed for 4 years with everything from TMJ, to Epilepsy, to MS before I found the amazing staff under Prof Saeed at UCLH London who correctly diagnosed 2 Perilymph Fistulas (plus another tear) in my right ear. After 3 operations to fix it, I have finally reached a milestone - 6 months past the last op and NO VERTIGO!!! woohoo!

However, if anyone here is under a Dr Sritharan, please note that he incorrectly diagnosed me with Migraine Vertigo even though I had had 2 operations by that time where the PLFs had been visualised TWICE. He was asked to assess me for a court case because my PLFs were caused by whiplash from a car accident and he (in his own words) “does not recognise PLFs” and said I had MAV even though I’ve never had a migraine in my life. If I’d not been under the amazing team at UCLH I would have believed his diagnosis and been trying to fix something that badly needed surgery, with medications like amitrip, so please be aware if you have been diagnosed with MAV, TMJ etc etc you could have an underlying PLF that even some ENTs have never heard of. If you are in the UK then get yourself referred to Prof Saeed and Mr Kahlil’s amazing teams there.

I still have things I am not allowed to do as it could cause the PLF repairs to fail BUT I HAVE A LIFE BACK, I am back out in the world again and as I said, first milestone reached, next one is to get to a year.

I hope all of you find your own Prof Saeed’s and find some end to the exhausting misery that is chronic vertigo but I wanted to share a story of hope that took me 4 very long, hard years to get to and a big thank you to James @turnitaround who kept me going when the light at the end of my tunnel had disappeared.
x

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#2

Congratulations Tina, so good to hear! Here’s to you reaching the next milestone vertigo free! So good you found the cause of your symptoms!! We can cover the controversy in another Topic.

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#3

Great to hear you’ve seemingly reached the end of the MAV Maze. It’s always worth further investigations and a definite diagnosis is a brilliant thing to have obtained. It puts you on the road to success. I’m sure there’s a few other people who got misdiagnosed. Bound to be. One clue I think is whether or not one finds the diagnosis meaningful. The test question being ‘Does this make sense to me’. If it doesn’t further investigations are warranted.

Out of interest how/what procedures, ie tests, MRI’s etc - were required to check your condition out if you’ve a moment to explain, and what main symptoms did you exhibit. Knowing that might help somebody else who’s been placed in the wrong pigeon hole on their way to resolution. Helen

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#4

Bang on there Helen!

I don’t want to make this Topic about me, but briefly when I received the ‘You’ve got Migraine’ diagnosis I was like: “?!?!?!?!?”:

Point shower in ear -> dizzy 15 minutes later and terribly imbalanced/dizzy/nauseous for 5 weeks after …

Didn’t sound like migraine to me!!!

That’s all from my angle.

I believe Tina had a couple of insults to her ear - @dizzylife can you remind us what happened initially?

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#5

I was given MRI’s & CT scans more than once by the ENT’s & Neurologists I bounced back and forth from and they didn’t show anything at all, other than I definitely didn’t have MS (big relief, spent a month worried about that). One ENT Professor before the amazing Prof Saeed told me it “categorically wasn’t an ENT issue”, such is the understanding of PLFs in it’s own field.

Unfortunately, there is not a definitive test for a PLF, however to exclude other things I had to undergo a barrage of really horrible tests when first got to UCLH London (if they’d not been in the doctors office, Amnesty International would have had a field day because they are torturous), even though the lovely Mr Kahlil (the first specialist I saw there) was certain I had a PLF.

The only way to diagnose a PLF is to go into the ear and look for it (or them in my case as there are 2 windows that can burst and you can burst either one or both). The operation is horrible (I’d had 10 ops before that over my lifetime, including a hysterectomy and I was up and walking the same day and over them very quickly) but if you thought vertigo was bad BEFORE the op, immediately afterwards for up to 24 hours it is truly unbearable. Recovery is arduous too but having had to do it 3 times over 2 years now I can say, it was worth it to be where I am now.

I have lost almost all hearing on the right side though, but that was a fair trade off for me to be vertigo free, after all I have another ear to hear through, although some hearing is returning slowly. I also can get hissing noise in the right ear that comes and goes and I have a grommet fitted so I can fly (yippee!) and am doing my first “test flight” next month.

Symptoms are wide ranging and include; vertigo when bending forwards, vertigo from the sound of ones voice or talking on the telephone, vertigo that wakes you up because lying almost flat allows CSF fluid to leak into the ear, vertigo when trying to lift something, the list goes on. Vertigo was so violent I would throw up and can last anything from 10 minutes to 12 hours, sometimes 4-5 times a day. General unsteadiness and a tendency to walk/lean as if on a swaying ship, eyes jumping, fast movements on a TV screen for example or an unsteady camera could also set off an attack. Banging and loud and violent popping in that ear. Quite wide ranging and they do overlap so many other things.

A PLF can be caused by Whiplash, Scuba Diving, Straining, Child Birth etc.

I hope this helps anyone who feels there might be more to their own diagnosis.

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#6

Great Thanks for details. Most helpful. So many symptoms overlap one can see how confusion can result but It goes to show taking detailed medical history should pay dividends. Helen

#7

Hi @dizzylife
What a journey you have had - great that you have finally got the right diagnosis and are on the path to recovery. Dr S diagnosed me with Migraine Variant Balance Disorder last June and his treatment plan has got rid of the dizziness (thank goodness) but my ears are not right yet and the information about PLF is interesting as I have a perforated ear drum. However I haven’t had any recent whiplash or head injuries although prior to my demise I did a rather violent Power Hoola-Hoop session which Dr S said was probably the final straw which set everything off! I think Dr S’s diagnosis for me is right, but I do wonder if there are other things going on which might need investigating. Thank you for posting the symptoms. Jan

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#8

Glad they finally found your real problem and hope it is a long lasting solution. I feel there is a good chance that my real issue is something like a fistula. When i have attacks i feel the ear pressure and then a release of pressure and immediately have unbearable vertico and spinning. And steroids help to improve so it makes sense something is healing. My day to day symptoms are much like yours were.

So much of the science and medical efforts in this area are not very advanced. The imaging technology is just not good enough to find the real problems so much of the treatments are based on trials of lots of medicines some of which have seemed to help in the past and often without IMHO any real reasoning. Of course some of these I’m sure do help but i often question when a drug needs to be taken for a very long time to see good effects whether you might have gotten somewhat better on your own over that time without that drug. And in either case i think most of the time there is no correction of the real problem but just a masking or reduction in the affects from the problem.
And yes i can see that some drugs can help you tremendously if the real problem is something the grug can truly make better.

Dave.

#9

I think the drugs used just mask or reduce symptoms all the time. They aren’t a ‘cure’. There isn’t a cure and unlikely to be one until somebody finds out what’s the root cause(s) is/are. It’s great there are drugs which we can take to improve our quality of life. I’m as grateful as everybody else who can tolerate them until such time as the condition gets properly diagnosed. Helen

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