Author Topic: So many difficult postings. Did anyone have a good translab experience?  (Read 10809 times)

CHD63

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Re: So many difficult postings. Did anyone have a good translab experience?
« Reply #15 on: November 02, 2011, 02:00:47 pm »
Did not respond before because a number of people already did, expressing their good experiences.  I, as well, had an excellent experience with translab in May, 2011 with Drs. Friedman and Schwartz at HEI.  Other than SSD (but now with the wonderful assist of an Oticon Medical Ponto Pro), I had no post-op issues.

Katie is absolutely right that this forum can be a scary place, when a new person starts reading about all of the problems people have had.  This is the big reason I have continued to stay on this forum (along with several others) ..... to let newly diagnosed patients know that the vast majority of AN patients do very well.

The best thing anyone can do is to find the best physician/surgeon possible.  This greatly lessens the chance for any post-treatment problems.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

schmidtkat

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Re: So many difficult postings. Did anyone have a good translab experience?
« Reply #16 on: November 03, 2011, 03:05:24 pm »
Echoing the same as many have already stated. It's scary. Everyone experiences a different healing journey.  I'm one of the blessed ANers who has a miraculous success story from the HEI. We're out here and cheering you on! Stay positive. Lean on family, friends, ANers and your faith. Thoughts and prayers to you! ~ Kathy

Silver Sonnet

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Re: So many difficult postings. Did anyone have a good translab experience?
« Reply #17 on: November 03, 2011, 09:07:37 pm »
Overwhelming is exactly right.  I was just like you, with almost total hearing loss in one ear.  I was so afraid of treatment--any surgical approach and any of the radiation treatments just sounded almost like death sentences--I just decided I'd keep the tumors.  Seemed logical at the time: my hearing was already gone in one ear, so what did I have to lose?  Well, about two months after the hearing loss, the nerve damage started.  Tingling on the right side of my face, numbness on the right half of my lip, etc.

So I finally made the call.

That wait wasn't the best thing for me, though. The tumor on my right side (I'm NF2, so I had a tumor on each side) was cystic and had gotten dangerously big.  It could no longer be removed by the "easier" (according to me doc--not sure if that meant for him or for me) trans-lab approach, so I had to have the ret-sig surgery.  This isn't meant to scare you, but I do want you to go ahead and make that call.  Waiting will accomplish nothing good, and once the stress of making the decision is over, life really does get back to something pretty close to normal.

We're here for you, if we can help, but you really do need to call.

Rivergirl

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Re: So many difficult postings. Did anyone have a good translab experience?
« Reply #18 on: November 04, 2011, 07:29:42 pm »
The surgery is no cake walk but managable and results are you should be tumor free and that is a very good feeling.  I would advise being in pretty good shape going in, I was overweight (still am) and I think that made it a lot harder.  I am 5 months post op and still working on that 100% but I do have to stop myself and realize, I really did feel worse before surgery.
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!