No real Symptoms, dont know what to expect

[mmer302]

I am 59 with 2.5cm AN in right side. I dont have any real symptoms except minor hearing loss on right. The tumor was an incidental finding from an MRI. The Dr. I am talking to is said to be "world known" and has performed over 1400 of these. I was going to go with the Trans Lab because I did not want to risk my facial nerve, but the Dr. said I should do Retro-Sig because he can save my hearing (65% chance).  I am in sales and much of my job is working from my home office on the phone or computer. They are telling me that I should be well enough to do that within 2-3 weeks. I dont have any real balance issues now either.  What can you tell me about your experiences...and thank you in advance

[suboo73]

Hi and welcome to the Forum!

My older sister was diagnosed within 6 months of having hearing loss, while I investigated my similar situation for over 12+ years!
But, we are both in W & W (Watch & Wait) and this is a very individual choice.

You need to take your time and gather all the facts to make an informed decision.
While you are on this journey, we are here for you!
The folks here are FANTASTIC and others will chime in with their experiences.

My thoughts and prayers are with you and your family during this time.

Sincerely,
Sue

[mmer302]

My tumor has grown steadily since discovering it in March of 2007. It was very small at the time and I had 3 cyber knife treatments, and it is still growing.  I feel I am past the W&W period, as I dont want it to get much bigger and make surgery more difficult.  I am still researching, but pretty much resigned that I have to get it out...shooting for mid March time frame

[suboo73]

mmer302, 

My apologies, i had no idea you already had some CK treatment and your AN is still growing.
I see on your other post that you found Dr. Fukisama (SP?) in NC.

I believe one of the other forum members, Clarice, had surgery with him and she speaks very highly of him.
I am sure she will chime in with more information.

Continuing prayers for you. 

Sincerely,
Sue

[mmer302]

I hope that I hear from others that have used Dr. Fukushima, and hoping Clairice will comment as well

[Mark241]

Sorry to hear that your AN is stubborn. I didn't have Dr. Fukisama perform my retrosigmoid, but I went through the procedure. ANs', the consistency that the tumor is comprised of, and of because were all just a bit different, outcomes vary. Mine was a 3.5cm that was "Harder than a rock" according to my surgen. I had temporary facial paralyisis, preserved 70% hearing, balance is still an issue, but its very slight, and mostly feel its' effects in pitch dark.  I sent my films to Stanford, House, and elected to have the operation performed at Barrows in Phoenix. Good Luck my friend. 

[suboo73]

mmer302,  Hi again!

I saw your reply and wanted to add this - have you 'searched' Dr. Fukushima by typing his name in the box in the upper left-hand corner search box?
There you will read some previous posts about this particular doctor from forum members, including Clarice.

Although i have not considered surgery to date, Dr. Fukushima sounds like a very well respected AN doctor.
Headcase2 mentions some others in your same area as well.
------------------------
Please keep us posted along the way.
We are here for you.

Sincerely,
Sue

[CHD63]

Hi mmer302 .....

Sorry I did not see this sooner ..... our grandchildren are all here and I have not been checking the forum regularly.  (Thanks, Sue, for letting me know!)

Dr. Fukushima removed my 2.6cm AN via retrosigmoid, almost three years ago.  I had an excellent outcome and would highly recommend him.  I had 80% hearing prior to surgery and I have 20% post surgery with 100% speech discrimination.  I wear a Widex digital hearing aid, which boosts it to a very acceptable level.

Duke Raleigh Hospital was wonderful.  I had virtually no nausea post-op, no facial issues at any time, and no headaches.  I did have double vision for several days and significant balance issues (but this was my second retrosigmoid surgery ..... first one on the other side for trigeminal neuralgia and I have no remaining vestibular function) but considering everything I could not have had a better outcome.

PM me with your phone number and I would be happy to talk with you more about my experience.

Clarice

[james e]

I was 60 years old when I had a translab. I had long term wonkyness for about 3 years, and it finally developed into constant vomiting. My hearing was failing, but I just blamed it on my age. I had no facial issues. My doctor said my hearing was bad enough not to save, in exchange for preserving my face. I spent 3 days in the hospital and recovered nicely at home. It is 9 months since my surgery. I am SSD but have a BAHA and it is probably as close to normal hearing as I can get...it is probably better that what I had before my surgery. At least I can hear on my deaf side, but I just hear it in the opposite ear. It is not a problem. I still am wonky headed. I had a stroke in April 2009 and heart surgery in May 2009 to close a hole in my heart. I know I sound sick as a dog, but I lift weights every day, and my body is muscular...still look good in a swim suit. The problem is I have short term memory loss, and that piggybacked on my wonkyness keeps me from working. I applied for social security disability and it was approved. I kept working after I had my stroke, but it very hard for me to do accurate work. After the AN surgery, I could no longer work.


The stroke alone was enough to "retire" me, but I wanted to work. If I only had the AN, I would still be working, but the stroke and the AN "retired" me. Most everyone on this forum seems to have had a good outcome. Most everyone here has some type of disability from the AN regardless of the type of treatment they get. Some are very minor and some, but not many, are very serious. Just expect you will probably have some problem, but it just comes with tumor.

[leapyrtwins]

My only symptoms were hearing loss, fullness in my ear, and balance issues that I didn't know I had until my neurotologist tested me.

I chose my surgical approach - my doc does both translab and retrosigmoid.

I picked retrosigmoid because of the chance to save my hearing, which was diminished but with good word recognition.  The odds of saving my hearing weren't good, but I felt I had to at least let my neurotologist and neurosurgeon try.  I wasn't comfortable with translab because I knew I'd always wonder if retrosigmoid would have saved my hearing.  I figured I'd take a gamble and although I lost (my tumor was wrapped around my hearing nerve, which had to be "sacrificed" to get the entire tumor) I don't regret my decision.

My neurotologist felt horrible that they couldn't save my hearing, but my attitude has always been "you tried, you did your best, and that's all I wanted".  Also, selfishly I was glad my hearing nerve was damaged and not my facial nerve. 

Four months after my AN surgery I tried a BAHA demo and was thrilled and amazed by it.  I subsequently had the implant surgery and the rest is history.  I love my BAHA and being SSD is pretty much a non-issue for me.

You need to make the decision that is right to you.  Follow your gut and your heart, but keep in mind that the chances of saving your hearing with retrosigmoid are pretty slim.  If you're comfortable with the odds and are willing to take a chance, then go for it.

Jan