Author Topic: A newbie  (Read 3057 times)

JNBET2005

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A newbie
« on: July 13, 2005, 01:31:31 am »
I don't personally have AN, but my Dad had one removed in 1980, which left him deaf in his left ear, and other side effects, that most of you have from what I've read, on his left side.   My Dad just recently got diagnosed with a Schwannoma (same as AN, right?) on his right side.  I don't think at this point in his life, that he would want to go through all that again, and have it removed, especially in fear of leaving him totally deaf, and have both sides of his face affected, etc.  He is now 63 years old.  He is a veteran, and he goes through the VA, which is no walk in the park.  They are so hard to deal with.  They didn't even tell him about the new tumor until last week, and they have been sending him for numerous MRI's for the last year, and not telling him what they have found.  They also have found some spots on his lungs, in which they are giving my Dad very little information on.   
So, my questions to you are:
1) Have any of you had a tumor diagnosed on the opposite as your first, and if so, what did you do for treatment? 
2) Is this kind of tumor hereditary (I thought it wasn't, but now I'm unsure since he has this new one)
3) What are you doing for pain management?  My dad has relied on Tylenol (he can't handle aspirin, and he's on BP medication) for years, but it isn't cutting it anymore.

Right now, I can't think of my other questions, but I really appreciate you taking the time to read this, and perhaps respond. 

Nicole



Kathleen_Mc

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Re: A newbie
« Reply #1 on: July 19, 2005, 07:10:45 am »
Nicole: the apparence of a tumor on the opposite side is indicative of (possibly) neurofibromytosis type II (N.F.II) which is a genetic type disorder, for the sake of yourself/any siblings/any children of yours or your siblings this needs to be addressed.with your  father's doctor....does he in fact have N.F. II and if so all genetic children and grandchildren of his should be assessed. Is he a candidate for Gamma knife?
I guess depending on what the lung trouble is might make a big difference in treatment of the a.n., what is the size of the a.n.? they do tend to be very slow growing tumors and if it is very small maybe it need not be treated. Yes a Schwannoma is the same thing...I think the difference has to do with how deep into the nerve it is (tech, Medical crap)     Kathleen
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)

russ

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Re: A newbie
« Reply #2 on: July 23, 2005, 02:34:08 pm »
Hi JNBET2005
  I have NF-2. My 1st AN was removed in 77' and am 100% deaf with no balance on the left. Now I have AN on the right which is slowly destroying my remaining hearing. It already has the vestibular nerve. I've several spinal schwannomas as well.
  Guess you need to know what those lung spots are as performing radiation on NF-2 pts. with cancer, is a real wild card! There is an outside/remote chance if the lungs show malignancy, the latest AN 'may' be malignant also.
  NF-2 is only inherited about 50% of the time. 50% are new mutations. This is a chromosome 22, gene marker 12.2 anomolly.
  Maybe check out http://www.nf.org/. Where is your Father's greatest pain, the lungs, or head?
  Well, 63 is not old and surgery should be well tolerated if absolutely necessary. I would not irradiate a schwannoma, however, knowing I have NF-2. They are treatment resistant. Best to watch and just monitor the AN at his age if you can and concentrate on the lungs first.
  Your Father is not receiving Medicare and cannot go outside the Vet Adm?
  Russ

JNBET2005

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Re: A newbie
« Reply #3 on: July 26, 2005, 02:26:58 pm »
Thank you for your replies.  My father's pain is mostly in his head and back as he has degenerative discs up and down his spine as well.  He also has ringing in both ears all the time, and headaches constantly.  He is not on Medicare as of yet, he plans to get on that next month.  He has absolutely no pain in his chest at all.  They X-rayed his chest when he thought he broke a rib last year, and that's when they found the spots on his lungs.  I will find out more hopefully tomorrow when I accompany him at his doctor's appointment. 
I don't know the size of the new tumor, I assume it isn't that large.  They don't seem too concerned about it, which tells me that it isn't growing very fast either. 
Thanks again for your input Kathleen and Russ, and for the information as well.  I will check out that website.

Nicole