Posted , 7 users are following.
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!👏
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?
0 likes, 17 replies