Recently diagnosed - Seeking advice

[JDJ925]

I am hoping to get advice from someone who has been in a similar situation. Last December, hearing in my right ear went from nearly normal to complete deafness in 4 days. I also had extreme tinitus, vertigo, and nausea. I got an MRI and was told on Jan. 13 that I had a 3.2 cm AN.

Since then I have seen 4 specialists and gotten 4 different opinions as to how I should proceed (Trans-lab surgery, R-S surgery, FSR/IMRT, and single-session Linac Scalpel). I have spent hours and hours on the internet researching the various options. Most websites state that the various radiation therapies are not effective for AN’s (or VS’s depending on the author) greater than 3.0 cm.

Right now I am leaning towards having the trans-lab surgery; mostly because the literature says that of the 3 surgical approaches, it offers the best chance to preserve facial function. Since I have already lost hearing, preservation of hearing is not an issue. Also, the neurosurgeon who would be performing the operation is one of the leading experts in the country on skull base surgery. He has done about 25 of these type surgeries a year for the past 17 years.

I am hoping to hear from some others who have had treatments on 3.0+cm AN’s. I would like to know if anyone has a success story using radio-therapy on a tumor of that size; and if so, how long ago was it treated?

Any advice is greatly appreciated. Just three weeks ago, I had never heard of an acoustic neuroma. So I’m still very new to the game.

JD

[Pembo]

Hello. I had a 4 cm AN removed in June 2004, retro-sigmoid. I'd be happy to talk more with you. Feel free to email me at pembos94@centurytel.net.

[Joef]

Yep, its funny how most of us have never heard of AN ... before "it" come along , now were experts !

I had trans-lab on my 4 cm AN and the BAHA hearing aid done .. about 7 months ago at "hosuse" in LA
(I think they do 2 to AN's a day!) ...

Facial issues are the worst! ... far worse than losing your hearing . (IMHO) as I still have lots of facial weakness,
but is getting better all the time

read all of messages here, its a great site.  I dont want to say what to do, but your on the right track!

[Larry]

My AN was smaller and I had middle fossa surgery. I don't think that is appropriate for you. Sounds like Trans lab is the way to go. The key question i would ask the doctors whichever surgery direction you head down, is - "will you take all the tumor out or will some remains be left in there"? and, irrespective of the answer, "will it grow back"?

good luck on your decision and when you have made it, don't look back, don't do any more research as to methodologies, and enjoy your life.

You are doing the right thing now in exploring options and getting different vies.

[JHager]

Howdy!

You and I have the same story - I was diagnosed last summer with a 3+cm right side AN.  Had lost almost of the hearing in that ear.  Went through the same research as you, saw the specialists, yada, yada, yada.
(Trust me - I'm not trying to minimize your efforts, but it just got to the point where I was tired of having yet another 'expert' opinion.)

I had translab surgery on November 7th in Las Vegas.  Like you, my surgeon trained in skull base surgery and had performed more than 200 translab surgeries.

The short version:  I've had a great result from my surgery.  I don't really notice the complete deafness, as compared to the nearly complete deafness.  My face is probably at 98% - you have to know me well to see that the right side of my mouth doesn't quite curl up into a complete smile.  I have minor dry eye, which is easily soothed by over-the-counter drops (Thera Tears, to be exact).  I use the drops once in the morning, once after dinner, and once before bed.  I did experience facial paralysis for about two weeks, but my docs were confident that I would recover completely - the tumor was pressing against the facial nerve, but not intertwined in it.  I've been back to work teaching full-time since January 3rd, am back to the gym and running, and I'm 'celebrating' my recovery with a half-marathon next month.

If you're comfortable with the idea of translab, I recommend it based on my own experience.  I'm feeling great, and I'm pleased to know there isn't a 'wait and see' period.

Hope this helps!

Josh

P.S. - Where are you from?  If you look around this site, you'll probably find some others who have had their surgery in the exact same place you will.  It helps to hear the voices of experience before you go in!

[Goh]

Hi JD,

        When I found out about my AN I went through the same process ie research! research! research!.  It was then down to 2 options, either translab surgery or gamma knife.  I decided on gamma knife as my tumour size was within the recommended treatment range (2cm).

          In view of your tumour size, I think the most viable option is the translab surgery.  At the end of the day with all the material and information you would have acquired by now, it is still a difficult decision to make.  As I have always believe, there is no right or wrong choice here.

          Make a decision and go with it all the way.  I wish you all the best and a speedy and successful recovery.


Chuan from Singapore

[Boppie]

My tumor was smaller than yours, but still a threat to me due to its relationship to the brain stem.  I knew my hearing was gone.  I could see the tumor touching my brain stem.  After seeing that on the MRI my decision to have surgery was made solid.  I wouldn't have wanted to watch and wait while tumor swelled further toward the brain in the event I opted for a radiation treatment. I have no regrets whatsoever about choosing surgery and the excellent surgeons who did the work.  Hopefully, the waiting time for your procedure, whatever you choose, will not be too long.   

[JDJ925]

My thanks to all who took the time to respond. All comments were very helpful. I was amazed at how quickly the responses came in.

In answer to one question: I live in central Florida. I am planning to have the surgery at Tampa General, the surgeon is Dr. Van Loveren of the University of South Florida. I am curious to know if any other members are his patients.

[wanderer]

I had a 2cm An removed january of last year.   I'm pretty much back to normal now.   I developed a few things that caused trouble,  mostly a stubborn staph infection.    All in all translab worked well.   I had some facial paralysis for awhile but it resided in about 6 weeks.   

Also my scar is so close to my ear that you cannot tell I had surgery.   Many people do not believe me      I am soon to go in for the baha implant and hopefully that will be my last surgery for a long time.

Good luck to you on your decision.   Just remember no matter what you choose it will be the right decision.    You can never second guess yourself once you commit to a path because you don't know what would happen down any of the paths you chose not to go down.

[cookiesecond]

Josh,
I am so glad to hear you are doing good. You have been in my thoughts and prayers.
Lynn

[okiesandy]

I just read in the Cyberknife patient support group site this morning, a post from one of the doctors talking about treating larger tumors with CK. There is going to be a study published very soon on the treatment of 3+ cm AN's with CK.

If something besides surgery would be of intrest to you just go to their msg. board and select brain and the response will be there or ask one of the doctors that answer questions. All have email addresses and all answer your questions promptly.

Sandy