What would you do???

[Melissa778]

As some of you know I had translab in May and I was told they had to leave some tumor behind on my facial nerve because alot of the tumor was imbedded there.  The plan of action was to trudge forward with GK to zap the remainder.  From day one my doc and I had also discussed BAHA.  Now that I'm 3 months post op and all is well the docs are ready to move forward with the next "procedure".  They have left the decision up to me which I want to do first......GK or BAHA.  We will wait one month in between each procedure.  But they have left the ultimate decision on which I want to do first up to me.......I suppose it really doesn't matter......but I wanted to gauge others opinions and pros and cons on both procedures......I'd like to be done with all of it in time for the holidays.....

So my question is....if it were your choice, what would you have done first?  Has anyone else had translab, GK, and BAHA?, if so what did you have done first gk? baha?

Wondering if there are any pros and cons to having one procedure done before the other?

Any input is appreciated.

Melissa

[ppearl214]

Hi Melissa,

I know of a few that had surgery, then had to have radio-treatment.... Jim Scott and jcinma come to mind first..... actually, from my understanding, debulking AN's then 'zapping' the remainder is almost becoming a "norm" in many AN treatment options for larger (over 3cm) growths.  There are many posts here about it so you can try to do a "Search" option as some of the discussions may be scattered on the forums.

To do the BAHA....and at what time to do it..... is solely up to you and your gut.  If your doc feels that either can be done first, then go with your gut.  BAHA should not affect GK and GK should not affect BAHA (unless someone knows differently)..... since you are taking a month to work this out.... to me, just like chosing AN treatment options... go with your gut.

Just my 2 cents.
Phyl

[Kaybo]

Melissa~
I am big on the "gut" thing so I definitely agree with Phyl.  For some reason, I think I would do the GK first - I guess because I would just want the tumor totally taken care of 1st.  I have had SSD the whole time but it doesn't bother me that much - obviously if you are getting a BAHA, that is very important to you so you might want to go ahead & take care of that.  If your doctors say that it doesn't matter which you do 1st, then I would say you would have to look, too, to the effects of the different procedures and how that plays into the timeline of your life!  Not much help - sorry - but we are here whatever you decide to do!!

K

[JerseyGirl2]

Hi, Melissa,

Were you SSD (or substantially so) prior to your surgery, or did you go from excellent hearing to SSD as a result? This is just an opinion, and others may certainly disagree with me, but I think that the sooner one gets the BAHA the better. The brain seems to adapt at least relatively well to SSD over time, and I know that some AN patients who were SSD prior to surgery may be less inclined to get a BAHA because they feel that they are managing just fine without the enhancement. My small AN had gradually zapped my hearing prior to surgery and my brain had made a good adjustment; that being said, I'm very happy with my BAHA, but I didn't experience that "wow" moment -- which I think a lot of newly SSD people do --  when I first started using it. My brain continues to adapt steadily to this "new way" of hearing and I'm delighted to have the opportunity.

I realize you would probably be delaying the BAHA implant by only a month or so if you were to do the GK treatment first, so it may be a fairly moot point, but I hope this will at least provide you with something else to consider when making your decision.

JerseyGirl2

[Melissa778]

Thanks for all of the input ladies.  I had 100% of my hearing prior to surgery, and I have adjusted very well so the SSD and have no problems with it, and don't mind it.  However, I am one of the lucky few that my insurance is going to cover my BAHA, so if I wait a year or more, they may not.  I'd personally rather not even get the BAHA, but if I change my mind 5 years down the road I may not be so luky with the insurance coverage, so I'm going to go ahead and get the BAHA while it's covered by my insurance.  I will most likely have the GK done first and get the remainder zapped before moving on to something else (BAHA).

Melissa

[Jim Scott]

Melissa:

You appear to have made a decision - GK then BAHA - but FWIW I agree with it and would follow the same course, in your position.  Finish off the AN, then take advantage of the insurance-covered BAHA while that option is still available.  Now, thats a plan. 

Jim

[leapyrtwins]

Melissa -

I'm with Jim, if it were me I'd do the GK followed by the BAHA.

You mention wanting to be all done by the holidays though.  Keep in mind that there is usually a 3 month wait between the BAHA implant surgery and the time you can attach your processor.  Pretty much the time it takes for the titanium fixture to calcify to the bone in your head.  So if you hope to be using the processor by the holidays, you might want to plan accordingly.

I personally don't think it matters how long post op you elect to have the BAHA surgery.  I had mine 9 months post op - would have liked it sooner but my insurance company was being uncooperative - and I still had the "WOW" moment when I got my processor.

Good luck,

Jan

[Debbi]

Hi Melissa-

Just a quick follow up JerseyGirl2's post.  My dad was recently talking to his audiologist who suggested that people who have sudden SSD are more likely to get a better benefit from BAHA or Transear if they get in within the first year of being deaf - he feels that the brain adjusts at a great level in the first year than later.  Have no idea if this is verifyable or not, but it sounded logical to me.

Debbi

[JerseyGirl2]

Re: Debbi's comment above -- my experience goes along with that audiologist's thinking. I certainly spent well over a year with extremely reduced, if not virtually total, hearing loss in my AN ear prior to diagnosis. Since I had absolutely no other symptoms I just wrote it off to aging and genetics and kept telling myself that, even though I was coping with minimal difficulty, I really needed to go see about getting a hearing aid. Needless to say, I was surprised when I went to my first otolaryngologist appointment expecting to be told I needed a hearing aid ... and left with an appointment for an MRI and the realization that my life was going to be changing soon!

This is in no way intended to discourage longer-term SSDers from investigating BAHA or any other device of their choosing! My BAHA helps a lot.

JerseyGirl2

[LADavid]

Melissa
If this is a vote.  Zap first.  BAHA second.
Good luck in your decision.
David

[28Lisa]

I too had the trans lab, my surgeon too left some behind.........radiation therapy is an option in which Im not going to take.  He says its not necessary....so Im going on that.

My last mri scan was 04/08 and they havent called me back, so I guess its nothing to worry about.

[calimama]

I don't have an opinion on which first, but kind of wonder what the rush is to have rads. Assuming that they left only a small bit behind, why not jump into the "wait and see" corner and see if it even grows... it may never be a problem for you, or if it is, it might not be something that you need to treat actively for another 10+ years. I know this position does not seem to be the norm on this site, but my doctor (i am in Canada) indicated that he would leave a bit of the tumor if he thought there was too much danger to the facial nerve (and he did leave a bit in the end). He indicated that radiation could be used subsequently to deal with any regrowth of the residual, but he added that i need not follow immediately with radiation, rather monitor, "wait and see". Radiation is not without risks, so why chase it?

Just a different perspective, although not really what you were asking.

Trish

[calimama]

Just to add to my early post, i was checking into some of the Q&As that were included via link in another recent post (i think Lisa27), and found the following...(i cut and paste the section below)


"In most instances the tumor can usually be dissected off the facial nerve. In these cases some facial weakness seen soon after surgery will usually return to normal with time. The degree of facial nerve dysfunction after surgery can not be reliably predicted. Generally the larger the tumor, the greater the chance of facial nerve dysfunction after surgery. On occasion, the tumor can be found to invade the facial nerve. If this is found, our preference has been to leave a small fragment of tumor on the facial nerve. We have not seen growth of these small fragments left on the nerve over time. Perhaps this is because most of the blood supply to the tumor has been lost. "


We all know that there is a chance of regrowth with ANs, regardless of whether the tumor was 'completely' removed or some was left. I would GUESS that the smaller the amount left, the less risk of regrowth, but i am sure there are many variables, and no gurantees.

All I am saying is that it does not seem certain that radiation of any residual is necessary. At least the decision and procedure may be deferred for some time until the need is known.

I do know of another postie here who had surgery, then rads like 3 months after as she was advised to do. I wonder what her take on this might be...

Ok, enough said. Good luck to one and all.

Trish

[hruss]

Trish,
i also know that they left some part of the bugger on your facial nerve when they want NOT to damage the nerve. however, even if they work somewhere closely to the nerve it could be damaged. I am telling that because i am like you - as far as i got from my docs my neuroma engulfed the facial nerve throughout the years of its growth. and i assume it is as big as yours now but the exact measure could be taken this coming week when i must have an MRI with contast.

will keep you informed!

Hrissy