What next?.. Looking for hope

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I had a surgery (MVD) Micro Vascular Decompression for HFS

( hemifacial spasms)...19 months ago, surgery didn't go as planned. I'm the unlucky 1% statistic. 😩

I had perfect hearing and balance pre- surgery.

I woke up profoundly deaf, with LOUD/distressing tinnitus, head pressure and 100% vestibular function loss on surgery side. A feeling of being deep under water. I don't need to explain how devastating this is to a group dizzy people.

I am "out of my body" most of my waking hours and on a rocking boat 24/7

I have been living from day to day hoping to come back...

I know I'll never get my hearing back, and I'm stuck with Tinnitus but I was hoping to come back into my body, the head pressure to ease and stop rocking and bopping.

So far I have really pushed myself to keep moving doing VRT exercises and I have continued with my yoga practise. When I first went back to yoga I would go to the corner and sob though most of the class but over time I am able to do most things now. I go to water aerobics, if I flop and bop while exercising at least I'm in the water! - it's fun! I believe excerising is my out of this. I've tried many alternate therapies ..acupuncture, sacro cranial, naturopath, reflexology. I've played with eliminating different foods, coffee etc... 

2 x vestibular physios - I went to a chiropractor, calling himself a functional neurologist. I did a series of exercises and a great vestibular mediation with him. (If anybody wants it I can post it) plus an ENT professor at Westmead and 2 other ENT's

I saw a vestibular oto-neurologist in Sydney recently after a long wait. He told me my brain isn't getting messages. He re-did the Caloric test with the same result -100% loss. He also did a test with electrodes on my face/ neck then donged me on the head wth a hammer. The result was nothing was getting through. I guess dead is dead. He said I have vestibular migraine (although I have never had a headache to speak of) but do have all the MAV symptoms and Mal de debarquement.

He has put me on an antidepressant CIPRAMIL ( I'm not depressed ...although I should be ..lol)  I'd be interested if anybody has had experience with this drug. He suggested working up to 40 mg but I found 20mg more than I could handle as I've never taken anything before. So far 3 months - the rocking has improved but my head pressure between my deaf ear and good ear has really increased, something I didn't need as it was bad enough

I have been told to be patient and in time I will "adapt", but realistically I'm stating to think I'm stuck here ...in this shocking place.

I've really pushed myself to "come back"

I flew to London and travelled for 6 weeks last July. I was on a boat for 2 weeks. I was good on the boat as my brain had some relief knowing it was ok to rock....but when I got off I was a mess..I did the trip-but it was SO difficult with only moments of enjoyment.

I trialed a Cros hearing aid and a soft band BAHA ( bone anchored hearing aid) but they don't help hearing or the rocking, the out of body feeling or the loud tinnitus.

Things have improved as in the begining I didn't know how I was going to go on. I cried everyday for many months.

Has anybody found anything that has helped their recovery I haven't tried?🙏

I haven't meet anybody with this problem, and I don't try to explain it to my friends as it's too hard.

Congrats if you got to the end!👏

Lynne❤️

Eleftheio33095 Do you have any thoughts as to what I might try next. The vestibular specialist suggested next drug to try is Allegron then sandomigrane if no result  from first 2. I would rather NO DRUGS Is there an option at this stage of the game?

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  • Posted

    Jesus! I only have a high pitch noise and it drives me nuts, i thought i had it bad! Sorry to hear your dilema, God bless you and hopefully Eleftherio can help you!
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  • Posted

    Hi Lynne sorry to hear about your problem. I wonder if you can help me I've been having problems with my balance too the left and a Flickr in my left eye. I've got a weak balance system in my left ear when walking l feel like I'm walking on sponges swaying and rocking. Did chiropractor functional neurologist. I've never heard of one of those before did the exercises help you what was the exercises. I hope you get better soon
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    • Posted

      Hi Victoria ..

      Depending on how long you have had the flicker in your eye as to if it is a worry. I would say after 6 months if it is getting worse, and it really bothers you, next step would be to get a MRI . For your sake I hope it's not hfs as there's not much you can do- there are band-aids ( Botox etc) but the surgery I had is the only way to "fix it" as you can imagine I'm not keen on that idea now.

       I read about functional neurologists on the Veda site

      there is a locator on there. There aren't many listed in Australia but there  just happened to be one about 1 hour away from me. 

      He said if he could help me I'd get a result in about 1 month.

      i believe if I was at that stage able to be helped he was good but by that stage I'd already done so much VRT, I could walk and balance.

      He had me swinging in the park. Bouncing on a gym ball -a series of movements. Tapping on the beat to favourite music with hands and feet then crossing to opposite hand -foot, unusual head thursts etc. He did chiropractic work on me also. I've done so much to try to "come back" I'm not sure what's helped. Big picture I'm still not ok but I've come such a long way. ( I couldn't drive for first 6 months ) 

      I find for balance walking on soft sand doing VRT head movements helpful. ( I live on the beach)

      i did find a chiropractor calling himself a functional "neurologist" bothering as a neuro is a MD specialist., which he is not -he has done a 2 year course to be accredited. But in saying that I believe he did help overall.

      He was expensive and in Australia it's not covered by our health system.

      Good luck ..we just have to keep moving although it is the last thing I feel like doing most of the time.

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    • Posted

      Thank you for getting back in touch I've and the Flickr in my eye for a year I do not like going in supermarkets all big crowds l just feel weird. I have difficulty walking and trouble changing surface e.g tile to carpeting. I've had 3 MRI scan all came back ok. Can you tell me what is hfs. I give the exercises a go Thank so much x
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    • Posted

      Hi Victoria, Hfs is hemifacial spasms.

      They start with a twitch in your eye and over time moving down the face, nose then mouth (single - sided) it is caused by a blood vessel touching the 8th cranial nerve ( facial nerve)

      Facial twitches are unrelated to your vestibular system. People only seem to have balance issues after the surgery- MVD to seperate the nerve by inserting a Teflon pad.., as the auditory and vestibular nerves are only 1 mm

      away 

      guess it would be good to know if the flicker you have is this problem.

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    • Posted

      Hi Lynne l look it up on the internet nobody Now's what causing the problem EnT said it's not my ears what causing the problem I have my eyes tested they was ok Thank you I hope you get better soon x
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  • Posted

    Hi Lynne, ( I'm also a Lynne by the way!!!). Am so sorry to hear about the terrible time you're having. My "dizzy" problems started a few days after a short haul flight to Spain just over a year ago.I turned over in bed one morning and the room started to spin violently. If I bent down even slightly I would fall over. For the next week I could not even walk to the bathroom without assistance and the only way I could find any relief was by lying flat on my back without a pillow and not moving.Eventually,I tried to move around and it was like being on a boat. The vertigo was replaced with slight nausea and a constant swaying motion.Over the next few months I was barely able to function. I had neck pain, a feeling of pressure in my head and ears, occasional nausea and loud tinnitus in both ears. I was unable to walk far without feeling as if I would fall over. When sitting down, my body would give a single jerk followed by another every few minutes. At those times the dizziness would get worse.Bright lights made my symptoms worse and bizarrely, looking at a computer screen or mobile phone would make the tinnitus worse ( it still does).If I tried to do anything physical, it would bring on an "attack" and leave me feeling exhausted. I was taken to A and E on several occasions and was convinced I was dying but no one seemed to have an answer. Various suggestions were made such as Mav, Menieres,labrynthitis etc but I was told that my symptoms didn't fit any of the criteria exactly so they weren't really sure what it was. The worst and most frightening symptom was the "out of body" feeling you describe. I didn't tell anyone about that because I thought they'd think I was nuts!!!! I found it pretty terrifying to be honest as I thought I would have it permanently. How do you explain how awful it is? Fortunately I rarely experience that feeling but it still scares me when it does come back.

    I was put on betahistine which helped a bit and when I had a series of attacks one after the other,stemetil seemed to calm them down. After numerous tests ( Mri, heart monitor, blood tests, and vestibular testing) it was discovered that I had a 3o percent hearing loss in my left ear only. I was given a hearing aid and sent for Vestibular rehabilitation. I have to say that the exercises the physio gave me restored some level of normality. In October 2014, before this happened they discovered a small meningioma in the right parietal lobe which is about the size of an olive. The neurologist assured me it has nothing to do with the balance problems. Currently I have to have an annual Mri to ensure it's stable.I have a history of migraine usually without a headache but with flashing lights etc.I also had labrynthitis about 10 years ago which was pretty dramatic but only lasted about 3 weeks.These days (since doing the exercises) I have some semblance of normality. I always know when I'm about to have a bad day because the tinnitus gets louderwhereas normally I can barely hear it some days. If I do too much physically it brings the imbalance on and I still get very tired and often have to have an afternoon nap. I may be wrong but I think that your brain has to work harder when you have a vestibular disorder and this in itself is both physically and mentally draining. I'm sorry to be going on about myself but I wanted to let you know that you are not alone and I'm sure that like me,you will eventually see the light at the end of the tunnel.

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    • Posted

      Hi Lynne, phew ..you have been through a similar drama. It must be difficult not really knowing how the whole thing came about. Still with no answers as to what the problem is. I'm the same as you when I'm tied or stressed I get much worse. Thanks for sharing and your support.

      We just have to hang in there as we really have no choice! 

      Lynnex

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  • Posted

    Your severe situation can be compared to patients who suddenly have vestibular loss in both ears.  I notice that you have improved with vestibular rehabilitation, where the purpose is to use your vision and sense of touch more, in order to compensate for loss of vestibular function on one side. I am also impressed by your ability to travel despite this loss.

    A device similar to a cochlear implant, a vesibular implant, is in the experimental phase but very close to going on the market (Herman Kingma, The Netherlands).

    I agree with avoiding drugs as much as is possible.  Vestibular rehabilitation is the only option, to strengthen vision and touch function, until the vestibular implant is on the market.

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

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    • Posted

      Thanks for your reply, I have watched youtubes of vestibular and cochlear implants. The surgery looks similar to MVD 

      Since things went so terribly wrong with my surgery, I'm not keen to have another invasive procedure as long as I live! (Although I am considering a abutment for a BAHA  -Single-Sided Deafness is quite a challenge.)

      VRT has helped me to walk straight but hasn't helped how I feel.

      Thanks again

      lynne 💪

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  • Posted

    Just a thought- isn't it nice that a clinical neurophysiologist bothers to log in just to help other people.? Just wanted to mention it as there are a lot of professionals who don't show much concern for this kind of problem. !!

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