Question about my accoustic neuroma

[izzy123]

I have had my acoustic neuroma for about 10 yrs now. I'm just this year going to get my surgery. Because of finances I wasn't able to get it sooner. I am very scared tho because I read horror stories about the after life, after surgery. Mine is pressing on my brain now and I get headaches every day. I fall down a lot breaking my bones and bloodying myself up quite a bit. My balance is terrible these days! I am 52 yrs old and worried that because I've gone this long that I've caused some irreversible damage. The tumor took my hearing on my right side so that is irreversible. I guess I would like to know if there is anyone who has gone so long with the tumor that its caused some kind of damage and what happened? I am very scared because I feel like I'm going to need months of rehab to get my life back once I have my surgery. My hearing is gone and I also have really bad buzzing on that side. It makes it hard to hear out of my good ear. It causes me to be dizzy and also causes pain in my eyes.

[LakeErie]

While no two situations are identical, doctors estimated my AN had been growing for 15  to 20 years by the time I had symptoms sufficiently bad to warrant a diagnosing MRI.
The mass effect on both my cerebellum and brain stem were significant and my fourth ventricle had shifted from the brain compression. I was given 5 to 6 weeks to have it removed.
I had surgery Oct, 2011 and 95 - 97% of the tumor was removed. One year later the follow up MRI showed stable size for the tumor and no remaining mass effect on either of the parts of my brain that were previously compressed by the tumor.
I had problems with my balance and orientation for 7 months following surgery and now experience only occasional, momentary periods of feeling "off." I now consider my balance better than before surgery. That said, I was walking outside a few days after discharge. I was OK'd to start jogging at 3 months, but it still took 7 months to improve completely.
Because I had a large tumor, my lower cranial nerves were involved and dissection of the tumor from them resulted in vocal cord and swallowing problems that began to improve in about 8 months. Today I am about 90% normal in both areas.
My hearing is gone completely. Being SSD - Single Sided Deaf - has not been a major problem for me and I have adjusted to it.
All in all, after 18 months following surgery, I consider myself close to normal, or close to how I was prior to surgery. Good luck.

[Tod]

Izzy123, yeah, following 32 hours of surgery, life is horrible for me. I go to work, I come home. I do pretty much what I want including hiking/backpacking the Appalachian Trail, kayak fishing, and spending time with my wife, son, and grandkids. 

Surgery is not necessarily horrible. Lots of positive outcomes. I've had some struggles, but I have had even more successes. My tomor was larger than a golf ball...there is no telling how long I had it, but of course I did not notice it until it did irreversible damage to my hearing.

Think about it this way - the way things sound, they can only get worse without surgery. Your balance problems and your headaches have a possibility of getting better with surgery.

Good luck to you,

Tod

[Kathleen_Mc]

izzy123:
It is very hard to really describe how your life might change with having surgery, everyone is different and you may or may not end up with the "permanent effects" others do.
I myself had a rather large tumor that was displacing a posterior lobe and within mm of the brain stem, I came out of it with total hearing loss on that side, facial issue's, balance issue's, that "wonki head" feeling (that is very hard to describe), headache issue's (different then I had pre-op), swallowing and speech issue's, and "post traumatic stress disorder".............that doesn't mean all these things will happen to you nor does it mean something different won't happen. Going into surgery the doctor didn't think I would be able to walk (as well as a bunch of other things) and would have to spend time in a rehab hospital but I walked out on my own a week and a half post-op
My point is be aware of the "what ifs" but really you will have to wait and see how you come out of the other side, be prepared of what could happen but remember that doesn't mean it will happen to you.
In general life is good and for me without the surgery it would have been very quickly over!
Kathleen

[nftwoed]

Hi izzy;
   I've read many a pt. story for years.  Please, if you can, expect to be well.  It's highly likely you will be well.  You may have some work ahead of you and it will require patience and trust in your chosen physicians.  One never knows as each outcome is highly individualized
   Re; off balance and dizzy, many with very small ANs suffer that also.
   Of course I'm not a Dr, but those head aches sound like stress/tension HAs to me when you say "eyes".