Author Topic: Are ANs forever?  (Read 4236 times)

route66

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Re: Are ANs forever?
« Reply #15 on: May 12, 2008, 03:27:20 pm »
After having translab surgery in June, 2002 and having a 5 year MRI in June, 2007, my surgeon at the House Ear Clinic told me that I was considered 'cured' and that there was no need for additional follow-up MRIs.  He also indicated that had I had a re-growth, I would have been the first patient at House with a tumor under 3 cm undergoing translab surgery to have a re-growth.

leapyrtwins

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Re: Are ANs forever?
« Reply #16 on: May 12, 2008, 04:34:01 pm »
Route 66 -

Very interesting.

I'm definitely no doctor, but I've always heard that you should have annual MRIs for the first 5 years and then "periodically" thereafter.  I don't know what "periodically" translates to when dealing with ANs; but I've never heard that you should just stop getting MRIs completely.  Maybe the doctors I've spoken to are just overly conservative?

As others have said, regrowth is not common but it does happen.  I'm with Lori - I'm not going to live in fear that my AN may regrow, but I think a periodic MRI would do me good  :)

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

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Re: Are ANs forever?
« Reply #17 on: May 13, 2008, 04:16:21 pm »
Following my surgery and radiation in 2006, my brilliant but cautious neurosurgeon has kept me on a schedule of semi-annual MRI scans.  After my next MRI (in June) I'll move to having an MRI on an annual basis for five years.  Then, I'll likely have an MRI every two years, possibly five.  I don't expect to ever just stop having MRI scans anytime in the near future.  They're painless, (I'm not claustrophobic) don't involve radiation and can spot a re-growth early, which is, unfortunately, a small but still-valid possibility AN patients have to live with if they're going to be realistic.  I'm another AN patient that doesn't lose any sleep worrying about a re-growth (especially since I've seen signs of AN necrosis on my MRI scans).  Still, I prefer to be realistic and that means having MRI scans on some sort of schedule, even if that becomes twice per decade.  It's worth it to me for 'peace of mind'. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Kathleen_Mc

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Re: Are ANs forever?
« Reply #18 on: May 16, 2008, 03:15:40 am »
Lori: No to can't develope NFII, you either have it or you don't but until you die without developing another tumor they never will completely rule it out. There is a blood test to determine if you have the gene but there has been false negatives with that. MOST people with NFII are able to find a family member who has it or developes skin changes indicating it etc. but there are some people who don't and it's just with the developement of another AN that the diagnoses is made.
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)