GK/Middle Fossa NF-2

[russ]

 Hi
  I don't know where to put the emotions and words. It's late.
  When I was at home today I realized even more how rapidly my hearing is disappearing. I even had trouble understanding my Brothers low pitched, rather loud voice and had to ask him to repeat several times.
  I've been thinking intently of what to do as last year at Mayo, I was asked by the Neuro when I'm going to have the AN out or treated as my hearing is getting so bad and I'm quite young to be walking around for years with a brain tumor.
  He said GK was an option now. Seems he gave nearly = stat outcomes for either Tx type last December. NF-2 ANs have shown only in some cases to be more radiation resistant than single, spontaneous AN ( to my understanding ).
  *I'm really unsure of facial nerve outcomes of GK vs. Middle Fossa Surgery. I had thought them about =. I've forgotten many things and facility reports seem to lean in favor of their particular treatment. The Neuro at Mayo Clinic does surgery and is a licensed GK provider also. I do feel the drooling tendency is not a good sign.
  I do not trust HEI to give a good GK prognosis. Nor do I trust UPMC Radioncology or JHH Radioncology to give a fair surgical prognosis.
  Just don't wish to have another brain op.
  Ideas?
  Thanks, anyone.
  Russ

[tony]

HI-Russ - it has been a long time, sorry to hear of your troubles
With any NF2 treatment the absolute stats are so few we need care
- less we base outcomes/expectations on two or three examples
wonderful they maybe, but not statisitcally useful.
If you check out Sheffield Gamma knife (Royal Hallamshire Hosp-Uk)
They have 10 yrs long term stats on NF2/Gamma treatment, 100 patients approx.
It is published on the net - I think its the only long term/many numbers
survey on NF2 I have seen.
If you are struggling, I think I can find the link for you
Basically its not quite as good as conventional A.N.s
- but I would not really expect that - but not bad at all
the (USA) NF2 Crew simply did not believe them
Best regards
Tony

[Larry]

Russ,

Sorry to hear of your problems. I have posted my situation many times so I'll keep this brief. I had middle fossa 3-4 years ago. I lost functional hearing in my an ear. i can still hear some noise but its not "usable" in conversations. The surgeon lied to me about getting all the growth out because it has grown back. I am in watch and wait mode and will have GK when the time is right. I don;t have facial paralysis but have had chronic headaches since day 1 of surgery.

I am now pretty sure that the growth wasn't removed in its entirety to preserve the facial nerve. Ok thats great but, that also has the downside of facing a secondary procedure.

If you are ok with radiation treatment, my personal view is that this is the best way to go but you should consult a surgeon and radiologist about the potential side effects of both treatments. You may want to do a search on this site coz, the "standard type questions" have been posted in lots of places.

laz

[russ]

Hi Tony
  Hey friend! Welcome back. What an ordeal you've been through with your guardian angel! - smile - I hope you're still coming along.
  I'll look for the study you mentioned at let you know if I can't find it. Have it copied to my mouse now and just need to paste it into the search window.
  Good to see you back again!
  Russ

HI-Russ - it has been a long time, sorry to hear of your troubles
With any NF2 treatment the absolute stats are so few we need care
- less we base outcomes/expectations on two or three examples
wonderful they maybe, but not statisitcally useful.
If you check out Sheffield Gamma knife (Royal Hallamshire Hosp-Uk)
They have 10 yrs long term stats on NF2/Gamma treatment, 100 patients approx.
It is published on the net - I think its the only long term/many numbers
survey on NF2 I have seen.
If you are struggling, I think I can find the link for you
Basically its not quite as good as conventional A.N.s
- but I would not really expect that - but not bad at all
the (USA) NF2 Crew simply did not believe them
Best regards
Tony

[russ]

Hi Tony
  Seems to be many links. Is it the $25 paid abstract available for 48 hours? http://tinyurl.com/o4d5x
  Thanks
  Russ  russtoo@netscape.com

[tony]

I have sent you links/copies by a number or routes so it should be OK now.
Regrowth is an issue with NF2 - more so than conventional ANs  for sure
the record of "post treatment" regrowth stands a 9 yrs (Noren) or 11 yrs (I dont remember who said it). With NF2 it never really is trully over - as a fresh growth close
to the site is just as possible.
My experiance with Docs is not so much that they lie - they simply dont know
enough to give an informed opinion - its too rare a condition
One  was offering advice - I was the 1st/2nd NF2 they had met(??)
I was so mad I wrote a "Ten Commandments" of how to handle the med services
when you are NF2
best regards
tony
NF2 Gamma reports can be found below
ps http://jnnp.bmjjournals.com/cgi/content/abstract/74/9/1288

[FlyersFan68]

Russ, I am just curious why no mention of the P.A.B.I. done at House. Even though few actually have this device Ive read some promising documents. Even the regular A.B.I. sounds good enough. You still get the tumor out and maybe somewhat hear again. This newer penetrating implant has more channels than the original. Just curious as to why no mention or consideration?

[Jeff]

Russ, I am just curious why no mention of the P.A.B.I. done at House. Even though few actually have this device Ive read some promising documents. Even the regular A.B.I. sounds good enough. You still get the tumor out and maybe somewhat hear again. This newer penetrating implant has more channels than the original. Just curious as to why no mention or consideration?

Helllo,

I too have NF2; and am treated at HEC by Dr. Friedman. I got an ABI in 2003 that did not work for me. The electrodes migrated after surgery. So I have been in touch fairly frequently with the audiologist at HEC, Steve Otto, regarding the PABI because I would like to get one. Among the first 5 implanted, one patient had some pretty spectacular results, but the other 4 have been disappointing. The PABI team decided to try increasing the number of penetrating electrodes for the second 5 implants. Some of these have been implanted now, but they are having some problems. Unfortunately, something is causing patients to have facial pain when using the newest PABI. Consequently, the patients are unable to use the device. HEC has suspended implantation until they determine the cause and act to solve the problem.

There are other issues to consider too. Getting the PABI means agreeing to become part of the FDA Clinical Trial. This requires traveling to LA for one week every three months for testing. Also, the PABI is not currently covered by insurance, although at this time a grant is paying for the devices.

I am hopeful that the problems will be remedied and that I can get a PABI when I need surgery again. I hope that this helps.

Best wishes,

Jeff

[Cheryl R]

Very interesting to hear about the ABI results as my surgeon had mentioned that as an option for me in the future.     However I had a checkup last week from my surgery this spring and Dr Gantz has mentioned of the possibilty of trying a cochlear implant in the future.    I never got into too many details or even if he has done this on any of his other NF2 pts.              He is very emphatic that getting any type of radiation is a no-no as makes further surgery harder or impossible witht the damage to the nerves.                        I also did not think to ask what the CI would do to the balance nerves.    He mentioned mid fossa with the CI.               My tumor is still small but in the IAC.             
Russ, has Mayo ever mentioned to you how many NF2 pts they have?               
                                         Cheryl R.

[tony]

I think its fair to say we are right at the edge of medical understanding
/technology here - I am glad that they are trying it, but it really is
early days
Best regards
Tony