A New Member

[Bonnie]

Hello to all, what a wonderful support mechanism you provide.
I was diagnosed with an acoustic neuroma (4mm) 9 years ago and have been completely deaf in my left ear since then. My neuro-otologist advised that there was nothing to gain from surgery at the time becasue I was 100% deaf. Had there been a chance that he could have saved some hearing he would have suggested surgery right away. We have been monitoring the growth and it is now 15mm(1.5 cm) and surgery is now recommended. I am begining to experience subtle balance changes  and the size of the tumour is on the verge of leaving the "small" category.I will have a trans-labrynthie excision done in the early new year (tentative date is Feb 7). My circumstances give evidence to the slow growth rate of these tumours.  Am I nervous? You bet! Ignorance is bliss and I wish that was the case for me now. I am a registered nurse and I know the risks of surgery and the complexity of this procedure, however I also know the questions to ask, have  witnessed the great advances in surgery and I have confidence in my surgeon. I am furtunate to live in a large Canadian urban center with a university hospital that has a very good reputation for neurosurgery.
What the books and reading don't help with though is the personal experience and feelings of waiting and recuperating. There isn't anything better than the voice of expereince and the commradarie of those with a similar problem. I welcome anyone's words of wisdom and support....particularily about the immediate post-operative phase in terms of pain, balance and nausea.
Thanks in advance...Bonnie

[russ]

Hi Bonnie!
  Welcome.
  Everyone's experience is different. I had no residual headache and an uneventful recovery following translab.
  It might be good to know how much vestibular function you will be losing as you will have to compensate for this with the good ear. Oftentimes the more good function lost, the longer it takes to compensate for equilibrium.
  Mine was 1.5 cm. upon removal also and still had about 50% hearing. The balance function remaining according to ENG with calorics was about the same and I might say it took a good month to lose some of the motion difficulties. For 4 days post op I could not walk unaided.
  Since the op in 1977, I've gained ANs on the other side, spinal tumors and a small menigioma tumor. Dx = NF=2. It's a 1/100,000 chromosomal disorder.
  Best wishes in this. Dr's gave me Valium a couple months before surgery and continued it after for a time.
  Yes; The anxiety, no easy answers for that one. Try to trust your Drs.
  Russ

[Kathleen_Mc]

Bonnie: I am a Canadian nurse as well, where are you having surgery? I had my first resection at Toronto Western (1990) and my second  at Sunnybrook this past Sept. (regrowth of same tumor they presume).
Nausea, I vomitted for about 5-6 days after most intake post-op the first time and then nausea continued for a wee while but was not bothersome. The second time vomitted for 3 days post-op and nausea continued for about a week after that.
Extreme vertigo and unbalanced the first time but was steady enough to drive around the 8 week mark and returned to full duties around 3 1/2 months. Second time vertigo has been present (unknow why as V. nerve non-functioning from the first surgery) however slowly improving.
Pain is of cource a hard one to prepare for since everyone's tolerance is different and coping different. The first time I felt like my entire body hurt for some time and the head pain for a few weeks was terrible. The second time not near as bad.
 The first surgery I had my head was cracked open transl. and I had a "burr hole" as well, the second surgery was a mush smaller openiong behind my ear and they replaced the missing bone with facia from my leg which apparently decreases pain.
One thing I never was prepared for was depression. Apparently when humans have brain surgery the neurotranmitters etc. get all out of wack and a chemical depression can occur (along with situational), most doctor forget to warm people of this and being that you are a nurse and we have the occupational hazard of not admitting to experiencing such things I thought I'd forwarn you of this.
Best of luck with your surgery.
Kathleen

[Bonnie]

Thanks for the words of encouragement! I will be having surgery at University Hospital in London.
One very trivial thing that I am wondering about...were you able to sleep/lay on the operative side fairly soon after your surgery? The reason I ask is because I usually sleep on this side so that my hearing ear is "up". If I sleep with my hearing ear to the pillow I can't hear anything... this does have advantages sometimes when my husband is snoring at full tilt...however it also feels very isolating.

[Crazycat]

Hello Bonnie!

     Please excuse my belated reply, having just joined the forum.
Did you have your surgery yet? I had a 5cm x 5cm neuroma  removed on Sept. 21st at Mass. General in Boston, Ma. Lots to tell.....
But in regard to your question about sleeping on your operative side. yes indeed, I was effected. I especially noticed this problem while in the hospital - I was in for three weeks with one week in a rehab hospital. The problem with me was my left side trigeminal nerve had been effected, leaving the left side of my face and head feeling as if it were shot up with Novocaine
that never wore off. In fact it still is numb but not as bad as it seems to be wearing off. But yes, it has only been over the past few weeks that I feel comfortable laying on my operative side.

             Paul

[Joef]

I had Trans-Lab and BAHA at the same time, it was 2 months before I could sleep on that side .. but I like sleeping on my good ear!! my wife can watch TV and snore, and I never hear it! (but of course I never hear the alarm clock either....) its the one good thing about being SSD !!

 

[Windsong]

Hi Bonnie,

I think that's great that you had nine years of not having to do anything with your An.  Good for your doc!

Yes, I found, too, that reading about other's experiences was helpful.

I finished fsr (linac/ 25 treatments) for my An. I can't comment on the results as I am in the wait and see stage but all went well. However, what I find surprising (so far) is that I have gone in the opposite direction to the "depression" mode mentioned by others now and then after an op for An etc......  I am having good spirits. Of course I find that a nice bonus. Biggest thing seems to be the fatigue but then anyone has that after any op too....  but I am mindful of the docs who said to take things easy and not plan lots.....

Have you talked to anyone else about alternative types of treatment for your AN? I am thinking about such things as CK, GK , FSR etc......??  Sounds like you could explore all options.

All the best in your decision making.