Has anyone had to do secondary surgery for re growth,

[Sandrawoody]

Four years on, despite surgeons believing they had got it all,and MRI only indicating scar tissue, recent MRI shows obvious re growth.
Has anyone had this issue, and choose the surgery path Again !!!!!!
The BIG question , can it be successfully removed 2nd time round, and were the consequences of 2 time surgery worse in terms of outcomes ?
Meaning greater risk to the facial nerve ?

[elsie]

just got my call, really, really want to know as well...9 mm regrowth, too many years post op.

[Kathleen_Mc]

Hi, I do hope my 2nd surgery was successful and the sucker doesn't reappear down the road, I had the regrowth removed about 6 years ago.
In terms of consequences of a 2 time surgery I am not sure what you mean. If the regrowth is involving nerves you previously did not have damage to you may end up with new deficits, in my case I had already lost all there was to loose the first time around (hearing,balance, facial function)
Kathleen

[Sandrawoody]

Thanks for the feedback, and Elsie , has it been that long since you have had a regrowth. You truly would not expect that....Could this be a new AN forming ?
Have you thought about radiation to control growth ?

Kathleen, l had no ill effects from the first surgery,still have hearing and facial nerve, is it possible to tell purely from MRI imaging whether or not it involves the other nerves ? I had retrosigmoid first, looking at translab 2nd time, which would mean l would lose my hearing.
How difficult is it with deafness in the one ear ?

[elsie]

Sandra, 25 years is so long that dr. wiet at my appointment in november completely discounted it and put it to anxiety (which really wasn't a help, because i have been feeling completely loony with the symptoms, blaming myself for conjuring them up and the thought of me not being able to handle a stressful job was not at all acceptable to me).  dr. wiet called the growth a recurrence, but will know more when i meet with him.

NO to growth control...i want it out.  it should have killed me the first time according to dr. wiet, i want to kill it now.

[leapyrtwins]

Clarice (CHD63) had a secondary surgery for regrowth; about 2 years ago I think.

It might be helpful for you to read some of her posts.  You could also PM her - or contact her on Facebook; I believe she's part of the ANA group there.

Jan

[Kathleen_Mc]

Sandra: HOw difficult is SSD? That's hard to answer as I think it is different for everyone. I find social situations where there's music or a big crowd difficult, not just in that I can't hear to talk to people but that I find all the noise too much sometimes and it will actually increase the vertigo. I have been able to continue with my career without much difficulty (psych. nurse). At lot of people have had sucess with the various hearing aid options, I tried to use a cross hearing aid but not until I"d been a few years post-op, I found it difficult to adjust to and when I finally got adjusted to it it needed repair and was sent away, by the time it was fixed some time had passed and I found I wasn't able to adjust to it again,,,,it's a different way of hearing.....so it sits in my linen cupboard,. I think if I was going to try a hearing aid again I would find it difficult so I just haven't bothered

[Tumbleweed]

Elsie ...
Have you thought about radiation to control growth ?

...I had retrosigmoid first, looking at translab 2nd time, which would mean l would lose my hearing.
How difficult is it with deafness in the one ear ?

Sandra, I can't advise you about the efficacy of having surgery a second time, as I had CK (CyberKnife radiation) to treat my tumor. But it sounds like from your post that you are at least considering radiation. It's good -- make that critical -- to thoroughly explore all your options before deciding on a course of action. And while each type of treatment presents risks, you already know that 1. your first surgery failed, and 2. your second surgery, if you have it, will make you deaf in one ear.

Seeing as you still have hearing on your AN side, I would suggest you contact Dr. Steven Chang (world-renowned CK specialist and neurosurgeon at Stanford Univ Medical Center) at sdchang@stanford.edu. He will review your MRI and medical history/records for free and give you his expert opinion via telephone. The last time I checked, you could also get a free opinion about GammaKnife radiation treatment from a doctor at University of Pittsburgh Medical Center. Some of the questions to ask are: 1. What is the success rate at tumor control?, 2. What is the chance in percentage terms that I can save my hearing?, 3. What is the chance in percentage terms of damage to my facial nerve's function? (This should be less than a 1% risk with CK at Stanford.) I strongly suggest you ask the same questions to your surgeon.

Once you have received expert opinions on radiation treatment and a second surgery vis-a-vis percentage chances of tumor control and damage to nerve functions, you will be armed with all the information you need to make a decision. If you choose a second surgery, you will go into it fully knowing you researched all your options and have made the best choice for you.

Best wishes,
TW

[leapyrtwins]

Sandra: HOw difficult is SSD? That's hard to answer as I think it is different for everyone.

SSD is different for everyone, but personally I found it extremely difficult and frustrating.  In addition, it depressed me   

My solution was a BAHA - not for everyone, I know - but it's been a Godsend for me and I've never regretted getting the implant.

I couldn't live without my BAHA.

Jan