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Here I come - Surgery after Failed FSR

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zjane:
Hi,  I want to come here and share my story with everyone.

First please pardon any grammar errors below as English is a 2nd language.

Yesterday I got confirmation from my radiosurgeon that indeed my FSR (Nov 2005) had failed.  I've posted on the Radiaton board before about Swelling vs. Growth. Well in my case it was Growth indeed.   Even the Necrosis from the previous scan had grown back solid.  My AN is now 2.1 from the 1.4 pre FSR.  My symptom is facial spasms and I lost pretty much all usable hearing on the right side.  I had an idea that was going to happen as my symptom kept getting worse and I had already started talking to forum members and AN surgeons before hearing the news from him.

So -

I talked to Dr. Wiet (I'm 2 miles from the hospital) from ChicagoEar last week.  I liked him alot and actually tentatively scheduled the translab for 6/27. (Another member here, Ellen is scheduled to getting hers done the next day in the same hospital so we can actually meet up  :) )  I later found out he's actually the current co-chairman of the ANA medical board.  He's so interested in my case, he asked my permission to present it at the symposium in Spain next week and also in July (Philly?)  because he's going to speak at both. (-- so those of you going to Philly, you might get to see my scan! -- )  Dr. Wiet has done 900+ AN with 15 or so post radiation.

Mailed my CD to House and Dr. House called me the day before yesterday.  He said the same thing - Translab and BAHA if I want it right away.  I'm waiting for more information on the different surgical teams from House.  In Crystal's story her team @ House had done 450 AN and 15 post radiation at the time.

Next I also schedule an appointment to see Dr. Leonetti @ Loyola, he's done 1000+.  I want to hear what he has to say. 

Unless something changes drastically I think I'm going to get the AN out locally (Chicago Area) since both surgeons are very experienced and I have a 3 yr-old who's not fully potty trained so staying local logistically makes it easier for my family member as well.

Okay - Just wanted to come here and share my information with everyone.  I still don't regret getting the FSR it was the best approach at the time.  Too bad it didn't work out but now I have an oppurtunity to really get it out of my head and move on with my life (have another baby, maybe!) .  I love this forum!  I don't post much but thanks everyone for all the information and encouragement.  And especially I really appreciate the few of you I have contacted and since provided much valuable information to me!

I'll keep everyone updated.  Thanks!

p.s. Seems quite a few failed FSRs are associated with Hemifacial spasm symptoms.  Very curious.

Dealy:
These are one of the posts that you hate to read.I feel so much for and hope whatever surgeon you choose-it will turn out for the best.My prayers are with you. I have a stake in this too I guess because I had FSR-25 sessions in Summer of 2006. Coming up on one year MRI at end of June. I do not have facial spasms but I was put on Celebrex because I was having small nerve shooters in my face. I will complete a 60 day course in 10 days. Hearing has diminished to point that only way I can hear is with hearing aid. Last MRi at 9 months showed signs of swelling-this was verified by actually 4 doctors-where I had FSR and 3 doctors in Kansas City.Interested to see how things turn out for you. Hope I do not have to join your club. Thanks-Ron

zjane:
Thanks Bruce.  I spoke with Dr. Chang back in January and have also mailed him copies of my MRIs.  I havn't heard from him.  I'm going to email him next week if I don't hear by then.  Judging from what happend to Crystal and Byron I think he probably would also recommend surgery. 

Ron - Please keep in mind the fail rate is still very low, please don't be discouraged because of my story.  I'm so grateful that this forum exists and I can get all the information and encouragement from people who really know what the AN experience is.

Jim Scott:
zjane:

Hi.  Please allow me to extend my best wishes for your upcoming AN surgery. 

I'm sorry the FSR treatments didn't do the job but you seem to have recognized that approach did have some small risk of failure. 

I admire your positive attitude toward both the radiation failure and subsequent and necessary surgery.  This will make the surgery, hospitalization and recuperation go a bit easier, I'm sure.  At least, on an emotional level.  It worked for me. 

I went the opposite way: surgery (retrosigmoid) to reduce the tumor, then, 26 FSR treatments to kill it.  So far, so good.  All of my AN-related symptoms pretty much disappeared following the surgery.  The FSR treatments were unremarkable (no complications) and my last MRI - in late April - showed the beginnings of tumor necrosis.  My neurological evaluation also showed marked improvement from previous tests (I can now walk 'heel & toe') and the only question was over some slight swelling noted on the MRI.  I thought this was normal and was unconcerned.  My conservative neurosurgeon basically agrees but wants another MRI scan in June just to keep a close watch on the remaining tumor.  I can't argue with that and I remain optimistic.

Again, your clear-eyed recognition of the possibility for failure when receiving radiation treatment and, when that failure occurred in your case, your willingness to undergo the necessary surgery, with it's own risks, is admirable.  I truly wish you all the best.

Jim

zjane:
Thank you so much for the encouraging words, Jim. 

I talked to Dr. Schwartz @ House today.  He sounded very sharp, he's done 530 surgeries with 20 being post radiation. Now I can't decide where to go for the surgery.  I'm going to see my local Neurosurgeon Monday and I pray for God to guide me to a decision.

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