Re: Children NF2

[Guest guest]

so Jodi, in your case, surgery bought you quite a lot of hearing time?(I ‘m sorry, I know more would be better) perhaps you have a milder familial nf2 happening?

“ new tumors-not regrowths (but how does one tell the difference)? “

where have these new tumors sprung up? nearby nerves, or on same residual nerve? R>

I had bilateral acoustic neuroma surgery (I guess that's what they 'used' to call it) in 1982 at HEI at the age of 12. I had my balance nerves removed (3/4 of the nerves - I think) during these procedures. My hearing was saved. I had no facial paraylsis (credit on the right side to an experimental tissue graft) and I bounced back quite well. The tumors that were removed were very tiny and were detected by a spinal tap (the CAT scan didn't show the tumors because they were too small) and these were pre-MRI use days. The reason I was checked for tumors was because of my mom and brothers having NF2.

21 years later I am now mostly deaf but due to new tumors-not regrowths (but how does one tell the difference)? I was able to talk on the phone this time last year so my hearing loss has come quickly.

Jodi B.

Re: Children NF2

on this I am a little confused....isn’t it common practice for them to always remove balance nerve now, has been for year or three? in which case has anybody with balance nerve removed had regrowths?

sorry do not want to sound negative, each case is highly individual, but just want to know if there optimism about no regrowths and removing balance nerve has been demonstrated?R>

I just wanted to mention something on this thread of removing tumors while they are small. When we decided to surgically remove our son's tumors while they were small , HEI felt very confident of the success in retaining hearing but not just that ; but also , by removing the balance nerve, (where these tumors actually grow) there would likely be no regrowths of tumors. I would have to say that , that fact alone played a huge part in our decision.

So far, so good. His hearing has remained the same and no regrowths. I mainly wanted to mention this for the benefit of new members. I joined the crew as we were trying to make decisions and the info I got here was invaluable.

Diane

[Guest guest]

Hello; Just wanted to mention my first AN was attached to the auditory nerve from the cochlea and pressing against the vestibular then wrapping around the facial and reattaching. They destroyed all except the facial during the translab. I think I read somewhere the whole 8th nerve is about 2cm long but can't rember if that is from the conjuncture of the auditory and vestibular into the 8th nerve, or, from the cochlea proper. I think both auditory and vestibular are destroyed with translab and the 8th cut at the brainstem.

Russ (no doc though)

Rosemary Lee wrote:

on this I am a little confused....isn’t it common practice for them to always remove balance nerve now, has been for year or three? in which case has anybody with balance nerve removed had regrowths? sorry do not want to sound negative, each case is highly individual, but just want to know if there optimism about no regrowths and removing balance nerve has been demonstrated?R> I just wanted to mention something on this thread of removing tumors while they are small. When we decided to surgically remove our son's tumors while they were small , HEI felt very confident of the success in retaining hearing but not just that ; but also , by removing the balance nerve, (where these tumors actually grow) there would likely be no regrowths of tumors. I would have to say that , that fact alone played a huge part in our decision. So far, so good. His hearing has remained the same and no regrowths. I mainly wanted to mention this for the benefit of new members. I joined the crew as we were trying to make decisions and the info I got here was invaluable. Diane

[Guest guest]

Hi! It doesn't seem regrowth could be distinguished from new tumor if the location were the same. Now, a different location would not be regrowth but new tumor and now I am talking in circles. Well, if one walks in circles and feels to be spinning in circles, it seems reasonable to talk in circles, yes, no, yes, no, yes & & & & & !

Russ

Rosemary Lee wrote:

so Jodi, in your case, surgery bought you quite a lot of hearing time?(I ‘m sorry, I know more would be better) perhaps you have a milder familial nf2 happening? “ new tumors-not regrowths (but how does one tell the difference)? “where have these new tumors sprung up? nearby nerves, or on same residual nerve? R> I had bilateral acoustic neuroma surgery (I guess that's what they 'used' to call it) in 1982 at HEI at the age of 12. I had my balance nerves removed (3/4 of the nerves - I think) during these procedures. My hearing was saved. I had no facial paraylsis (credit on the right side to an experimental tissue graft) and I bounced back quite well. The tumors that were removed were very tiny and were detected by a spinal tap (the CAT scan didn't show the tumors because they were too small) and these were pre-MRI use days. The reason I was checked for tumors was because of my mom and brothers having NF2.21 years later I am now mostly deaf but due to new tumors-not regrowths (but how does one tell the difference)? I was able to talk on the phone this time last year so my hearing loss has come quickly.Jodi B. Re: Children NF2

on this I am a little confused....isn’t it common practice for them to always remove balance nerve now, has been for year or three? in which case has anybody with balance nerve removed had regrowths? sorry do not want to sound negative, each case is highly individual, but just want to know if there optimism about no regrowths and removing balance nerve has been demonstrated?R> I just wanted to mention something on this thread of removing tumors while they are small. When we decided to surgically remove our son's tumors while they were small , HEI felt very confident of the success in retaining hearing but not just that ; but also , by removing the balance nerve, (where these tumors actually grow) there would likely be no regrowths of tumors. I would have to say that , that fact alone played a huge part in our decision. So far, so good. His hearing has remained the same and no regrowths. I mainly wanted to mention this for the benefit of new members. I joined the crew as we were trying to make decisions and the info I got here was invaluable. Diane

[Guest guest]

Hi Rosemary,

Yes, the early detection and removal of my tumors while they were small bought me 20 years of good hearing. However, my hearing has slowly been decreasing for the past two years. With my hearing decline it's seems as though the new tumors are probably on the hearing nerve. But as someone mentioned earlier, the docs don't really know for sure until they are inside. So, this leads me and the docs to think the tumors are not re-growths but new tumors due to my symptoms.

-Jodi

Re: Children NF2

so Jodi, in your case, surgery bought you quite a lot of hearing time?(I ‘m sorry, I know more would be better) perhaps you have a milder familial nf2 happening? “ new tumors-not regrowths (but how does one tell the difference)? “where have these new tumors sprung up? nearby nerves, or on same residual nerve? R>

[Guest guest]

To answer your question Marie, Robby

had surgery to remove the first AN in Nov.

of '99 and the second in August of 2000.

Diane M

[Guest guest]

I am sorry, I read so many e mails, I forget what I asked!! Did your son have radiosurgery, did I ask about that? marie

Re: Children NF2

To answer your question Marie, Robby had surgery to remove the first AN in Nov. of '99 and the second in August of 2000. Diane M

[Guest guest]

Diane,

I apologize, but I lost info for Robby; would you pls forward it to me again:

Name

When done

Where done'

Type of RS

Size of tumor

Short term effects

Long term effects/outcome.

Thanks, and again I apologize. marie

Re: Children NF2

To answer your question Marie, Robby had surgery to remove the first AN in Nov. of '99 and the second in August of 2000. Diane M