My Acoustic Neuroma Experience - Part 3 - Vertigo and Balance
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- Опубліковано 15 вер 2024
- Prior to going into surgery for an acoustic neuroma, I attempted to find something on the Internet which explained the human side of recovery but found very little on the topic. What I did find was a bit disheartening, so I wanted to provide some feedback on my experiences both in the hospital and during my recovery at home.
This video explains my experience with vertigo and balance as a result of nerve damage and what someone might expect while recovering from an acoustic neuroma (aka Vestibular schwannoma) operation while at home.
How long after your surgery until you could drive? I am scheduled for translab in July, and have an hour commute to work. I am worried about how long it will be until I am able to get back to work. Thank you.
Most people recover quickly, within a few weeks up to a few months. I was a bit more unfortunate. It took about 4 years before I was cleared to drive again, which was this past September (2018). But it was better than me attempting to drive, which would've been a lot like drunk driving in my case.
Hi, thanks for your videos! Please tell me what size your tumor was when you found out you were having surgery!?
Has your balance returned to 100% perfectly normal?
Hello Ed - thank you for making this video series. I was diagnosed with an acoustic neuroma a year ago, and am hoping to have my surgery soon. Can you please share how long it took your balance to return to normal (if it has at this point)? In addition, I don't recall you mentioning it, but did you lose your hearing on your affected side, or were they able to preserve it? Thanks again - this has been very helpful to know what to expect.
Jeffrey Nelson My balance has yet to recover. I am still very unsteady on my feet and the world spins whenever I move my head up, down, left, right or side to side. However, I have been going through physical therapy to help me learn how to live a somewhat normal life in this condition. I'm getting better at it every day, but still have to walk with a cane. I have to catch myself whenever I'm walking, and I tend to keep a hand on steady/solid surfaces to keep me from falling as I walk.
Regarding the hearing, it's completely gone. There's nothing that can be done to help it. The nerve simply doesn't exist any longer. The tumor completely destroyed it ... flattened like a piece of paper is how the doctor put it. So, given that they cut it out there is nothing to recover from. Now, this is just my experience and there's nothing to say that you would have the same result at all. However, if you're already dealing with hearing loss, understand that what you've lost will not be recoverable until such time where doctors can better understand nerves and repair this kind of damage.
I hope this helps.
Ed Engelking II Thanks for the reply. I know that everyone will has a different result with this surgery, and until a person has his/her own, there's really no way to know what the final outcome will be. I am quite unsteady at times now, especially in the dark or in the shower (as you described), but my surgeon said the fact that I'm already dealing with it will hopefully lead to a quicker recovery. I also get very tired as you described.
As to hearing loss, my hearing seems to come and go somewhat in my affected ear - sounding very muffled at times, but then it will go back to somewhat normal. When they gave me an audio test, they said that I still have 100% of my hearing, although I told them beforehand that I'd only peg it at 50%. They give me a 40% chance of being able to retain my hearing after the surgery, but I'm prepared that it will almost certainly be gone.
Thanks again for the reply, and for creating these videos. They have been very helpful, and I appreciate that they are available.
Jeffrey Nelson Glad to be of assistance. I'm planning on doing a year update next month to give people an idea of how things have progressed thus far. If you have any other questions or just want someone to talk to about the surgery (it's pretty damn scary), please feel free to reach out to me anytime.
hi Ed, my name is Christine and I’m two years out from my surgery completely lost my hearing, I have still have dizziness and that bubblehead thing still happens. I have yet to find any way of a cure. There are meds out there but the side effects of terrible matter of fact I think it makes it worse. I’m just curious how are you doing today? Has it gotten better for you? Or did you find maybe medication that helped you with the dizziness and wackiness. it is very hard living like this and I believe it’s going to be like this forever. I was very active before my surgery even rode a Harley but I don’t think I’ll ever be able to safely ride again I barely can walk without bumping into a tree.lol
Have you tried stemetil?
@@AdriansUA-camChannel what is stemetil?
@@christinecasson361 I know exactly how you feel. I am 4 months out of my acoustic neuroma surgery. Translab, no hearing, and boy were I dizzy for ages, and I still lose my balance every time I move around. The neurosurgeon said I should get back to normal activity in time, but I strongly doubt it. I read your comment and it does not surprise me that you are still suffering the loss of balance and dizziness years after. I have had brain surgery 3 times now, but for the latest acoustic neuroma the doctors prescribed a drug commonly called Stemetil, the scientific name is Prochlorperazine. I take 3 a day with no side effects at all. I have been on the drug since surgery and I was not sure if it was working so I stopped it for 2 weeks to test if it works and I was 100% worse once the drugs were out of my system, then I started taking them again and after a few days they started working again. They do not cure anything, I still get dizzy all the time and always lose my balance whilst on the meds, but belive me they make things alot better because without them I can barely stand up without falling over. Give them a go!
Thank you so much for your input and your suggestion, I have recently been at the mayo clinic in Jacksonville and they are doing another MRI on me I will mention that drug to them as I’m willing to try just about anything to get my life back. Thank you so much
@@christinecasson361 You're welcome. I'm in Australia.