Anybody have two ANs removed

[Raven]

Has anybody had two ANs removed? I've been thinking about it off and on, just wondering what your experience was like and how you are doing now. My Dr. mentioned that it is not out of the question that something may have to be done with the other one at some point in time..................one operation and recovery is enough, but two.......whew

[Cheryl R]

Raven.    I sent you a personal message some time ago.    Did you receive it?        I am the lady with NF2 also and have had 3 surgeries on the one side.    The AN, then the facial neuroma and then the CSF leak.        I also in the position of of deciding what to do for the AN on my other side.
   I have a appt tomorrow with my surgeon in Iowa City for a checkup.    My AN is now 13mm which is up 2 mm from 6 months ago.                 His thoughts are waiting till I am deaf and then doing an ABI.     A Cochlear implant was also mentioned one time.            In the talk on NF2 at the AN symposium Dr Slattery from HEI said they are having some luck with doing surgery on the 2nd side and saving hearing if done while small.             I forgot to ask though how they end up balance wise.            I guess I am chicken enough to be nervous over having surgery and then if is not able to save the hearing,you have lost it prematurely.       
   I have done well past all my surgeries so far and was back to work in 2 mos.     
                                                 Cheryl R   

[Raven]

Cheryl, I did receive your PM and I responded back, maybe I hit the wrong key or something. My Dr. also mentioned a cochlear implant for the left side, right side is wait and watch.........for now. You mentioned balnce, that is interesting, I wonder how that would turn out, maybe everything would "balance" out if both ANs are removed. It really changes things when there are two of them to deal with.

[Jeff]

Hi,

I had my second tumor removed in April. I had a lot of trouble but I am getting better.

Communication takes a lot of work. I purposely tried to watch people's mouths when they spoke to me in preparation for total deafness. This has really paid off for me, as I am doing fairly well lipreading now.

Balance has been tough but is getting better through physical therapy.

Jeff

[marie]

I have had 3 ANs removed on the left and am in watch and wait mode for one on the right.  I had surgery on the right side to remove bone in the auditory canal.  I also had 7/12 anastomosis and a temporalis transplant.  No major problems (meaning no headaches, nor major balance problems)

[NF-2er]

Hi Raven;

   It may depend on the type of your first surgical procedure on whether or not you can wait the contralateral side out for a while.
   While a 2 cm. AN is about breakpoint for changing post op complications, waiting until 3.0 cm places your facial nerve in greater jeopardy and may increase chances for other surgical complications. There's about 3.0 cm. from IAC to brain stem
   Re, balance, I believe abberent and unpredictable balance input caused by an AN impacting the vestibular nerve will probably never allow for balance compensation.
   All things being equal or stable may allow for VRT, Vestibular Rehabilitation Therapy. Not stable and my feeling is VRT is a waste of time, BUT, of course I am not a medical professional.
   CI may or not be an option at the time of treatment. It is not a panacea for an NFer as nerve damage is often excessive.
   Currently, I qualify for a CI but am not yet ready to make the jump of having what's left of natural hearing destroyed upon insertion of CI electrode into the cochlea. I believe Cochlear Corp. and Dr Bruce Gantz of Iowa City are working on the latter issue.
   Best wishes here in deciding what to do and when. It's a tough decision hopefully not made for us.

   NF-2er

[Windsong]

Hi NF- 2er

When you speak about  a 2 cm or a 3 cm and post "op" complications are you speaking about bilateral ans or unilateral? Also, is 3 cm from IAC to brain stem a common measurement for anyone/everyone?

Also,  an awful lot of balance compensation does take place when one has an An ( in fact that may be why some are not found until they are bigger) so I am not really understanding why you are saying that VRT is a "waste of time".......  is this something you are saying for bilateral Ans ? Thanks for any clarification from your own experience about this......

I know you have two Ans and I know you are having a hard time and I do wish you better days as you deal with all this.

However, this post is in the general category and will be read by many with one An  and I know that vrt can help loads,  even with those with bilateral, so  that is why I am replying and asking these questions......

windsong

[Raven]

Thanks everybody for the replies

Jeff, you mentioned you had second one removed, I'm assuming you have had both of yours removed. What was your level of hearing like along the way, between operations and how is it now? I would hate to do the second AN (before it's necessary) with a chance of losing the hearing in that one as well, I guess wait and watch is all about timing.

No date set yet for the left side, don't go back to the Dr. until 9/7............I'm getting a little antsy, but I am getting alot of things done around the house in antiipation of some down time due to recovery. Dusted off the treadmill and got a new plasma TV (as part of recovery, right?)

[Jeff]

Well, my hearing was perfect when i was diagnosed. I lost all hearing on one side when I had tumor 1 removed. I got an ABI too but it didn't work for me. My hearing on the other side was great but the tumor was large, causing me many headaches. That's why I decided to have surgery in April. I am now completely deaf.  I had planned to get another ABI but that didn't work out due to surgical complications.

Jeff

[Raven]

Hi everyone,

Well, I got up yesterday morning and right away I knew something was going on with my right side, what is now the "good side", the left side is just about gone and that is what started all of this about six weeks ago. I've been on Prednisone the last three weeks (today is the last day for it) to help the right side along, as it had gone down just a little bit. It worked, my hearing came back up and was actually thinking that if I didn't get any worse SSD wouldn't be that bad, but I know there is one the right side as well that could rear it's ugly head.  About a week ago I started getting Tinnitus in my right side (left side has had it since this all started) and this morning the hearing in the right side is still down, like my ear is full. Don't know what the heck is going on but now I'm back to being depressed and like this is all just a bad dream and I will wake up and be able to hear again............I know that is not going to happen. I get a MRI of my spine tomorrow, boy can't wait to see what shows up there. Some of my friends keep telling me, don't worry, everything is going to be fine, yea I guess they have done more research on AN then I have, I know they are just trying to help. Anyway I'm just blowing off some steam, sorry for the rant, just feeling a little down.

John