I am new here......😿: I am sitting in... - Acoustic Neuroma ...

Acoustic Neuroma Support
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I am new here......😿

Tjbird
Tjbird

I am sitting in my car right now on a logging road in the mountains contemplating my next move. To start on how I got to this place, I was diagnosed may 2017 with a moderate acoustic Neuroma Association on my right side. I had severe ringing in my ear and hearing loss that started at least 5 years ago and I went to several doctors until finally one doctor ordered a vertigo assement and then finally a mri which confirmed diagnosis. I had gamma knife surgery in November 2017. I think this was the worst decision I have made. I feel I would have been better off if I left it alone and let it kill me naturally. The ringing in my ear is louder than ever, it sounds like the cicadas in the trees in the plains states except louder. I am in constant motion and every step it feels like I just got off an elevator. I am getting tired of people whispering that I must be really drunk because I am staggering so bad. Just recently my right side of my face is starting to involuntarily twitch which is really embarrassing. I am also getting stabbing headaches. It is causing so many problems in my life at work and in my marriage, I try to explain to people and they just don’t understand or maybe they don’t want to understand so I just keep all this locked up until today. I feel this has all come to a head so I sit here with the horrible ringing and everything just thinking is this what I want to do for the rest of my life.

7 Replies
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The most important thing I can say to you is I understand what you're going through. I understand because my husband who had his AN removed about 5 years ago explained how his life actually is instead of what appears on the outside. If he had some condition such as Chemotherapy for cancer, ALS, Muscular dystrophy, etc. what I could physically see would of course make me understand what he's going through. But what I see is a strong, healthy man and until he finally explained, as you have, what's really going on did I finally understand. Having said that, we never regret that he had the tumor removed completely as we know the dangers of having it extend further into the brain stem. You should not regret having a procedure designed to reduce or eliminate a potentially dangerous tumor. While tinnitus is so hard to deal with, there are websites that can suggest relaxation measures and other techniques to lessen the effects. There are probably things you can do to alleviate the dizziness. Just know that people will understand what you're going through and hopefully you will have the support of family and friends once they are fully aware of what you're actually are dealing with that they cant see from the outside. I know it's hard and I'm really glad you reached out to a community who understands. Stay strong and focus on positive things in your life!

So sorry to hear you feel so miserable about your AN but margielyn is so right there are lots of things you can do to help improve your balance and tinnitus (mine tends to get loud if I am stressed) and general peace of mind. Keep strong and know that you have support via this site. Best of luck to you.

After 2 surgeries plus Gamma for my AN I felt bad, sick, dizzy, couldn't bear the tinnitus etc. etc. Yes, people thought I was drunk too. Best thing - get a sign printed in capital letters "I HAVE A BRAIN TUMOUR AFFECTING MY BALANCE, MY BRAIN, MY WALKING AND MY SENSE OF HUMOUR. DON'T ANNOY ME". Pin it to your back. People don't mean to be insensitive, some of them just don't have as much understanding or imagination as a slug. Pity them, and just continue getting better. Laugh at whatever you can, it really helps. It will improve.

Hope you're doing ok today. There are exercises that really do help with balance. Look up n internet as there are some sites on there. They are basically same type as they do with concussion patients. Or, you can have a physio therapist start them with you. They do help but it does take little bit of time.

As for the tinnitus, I get it. Check with a good hearing aid clinic. There are hearing aids that can help with this. Not guaranteed, but worth looking into. They can also advise you on a white noise unit that can help.

I have an AN that I have not had surgery for that has not grown in last 2 yrs since diagnosed but I still have lost 90% of hearing in left ear, have tinnitus and some balance issues. I bought a Cros hearing aid that basically has a receiver in AN ear that transfers noise to good ear. Helps tinnitus bit also. I have been doing some balance exercises which do help as long ad I regularly do them.

I am not having as many issues as you but there is hope for you. Please look into these options for you and try to enjoy the good things you do have. Things can improve. Also, please continue to look for support and information.

I also go on the ANA site. American Acoustic Neuroma site. Lots of good medical information and they also have a forum you can talk to other people with AN. There is a lot of great information on there including webinars you can listen to.

Good luck and stay positive, as hard ad that can be. Also, be open with your family and friends on what you're going through. Take care.

Tjbird:

Your problems were probably not caused by your gamma knife surgery, which was probably done too late. Your symptoms are very common with an AN, except the facial twitching, which can be facial nerve damage or just your response to stress (most likely).

Tinnitus can only be dealt with by ignoring it (and possibly getting a hearing aide that makes sounds louder than the tinnitus, which is a brain loop in the temporal lobe. My tinnitus is as loud as most people’s voices, even louder with alcohol or exercises.

If you are serious about reducing your pain and regaining your balance, go to the following link and do the suggested exercises daily for a month or so to reset your cerebellum, which is probably causing your pain.

thebioengineeringco.com/ind...

Dean

Tjbird: So sorry to hear about the bad time you're having! I'm having a terrible time too; my world is constantly in motion as well. I can totally relate to the feelings you're having. Let's get through it together! How are you feeling now, a few months since your post? Would be great to hear from you!

Acupuncture can help with, if not eradicate your physical symptoms (except maybe your tinnitus) as well as lift your spirits.

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