Gamma Knife -Johns Hopkins or Mayo clinic?

[LizH]

Anyone had Gamma Knife treatment at Johns Hopkins or the Mayo clinic? I have already had FSR 5 years ago and the tumor is not growing but my Neurologist says I should consider GK because of the tumor size and the fact that it is pressing on my brain stem causing walking problems and balance problems. The tumor cells are not dead though.

[jamie]

The tumor cells are not dead though.

If it's not growing, why would they say the cells are not dead?

[LizH]

I heard from 2 different Neurologists who said that the cells are not growing after looking at MRI scans.
I have had another one tall me that the cells are not dead. The doctor who did my FSR treatment 5 years ago says the cells die only in 1/3 of the patients.

[john twoffer]

Effia,
we need to talk. I am in the same boat as you. I had FSR but the tumor is growing. I am looking into Gamma knife at places that have done Gamma Knife after FSR, but I haven't found any yet! I have found these places that have have repeated GK on the same patients, Dr. Steiner in Virginia, Dr. Gott at San Diego Gamma Knife Center, and one more place I can't think of right now! Let's talk.
John

[centimeter]

Hi effiya;

  I must be honest and give my personal feeling regarding your situation...
  Given the AN size and location and the fact irradiation failed to produce tumor necrosis 5 years post Tx, it seems prudent to consider surgery.
  Re the cells not being dead, that must mean the AN is stable in size.
  You may want to send a CD obtained at the hospital's medical records dept. to http;//www.hei.org/ ( Brackman ) They will review at no cost and give you another opinion via telephone. Re GK, MGH ( Dr Kondizolka -sp? ) is probably the premier facility in the USA although all protocols are very similar.
  Dr John Niparko at JHH would be another good Dr for a second opinion re surgery.
  Dr. Michael Link manages the GK center at Mayo Clinic, Rochester and is also a neurosurgeon.
 
  Good luck here. Not a good location for an acoustic neuroma at all. Post Tx risk for hearing loss and/or facial nerve paralysis is reasonably high given the location and the fact it has already been irradiated.

Anyone had Gamma Knife treatment at Johns Hopkins or the Mayo clinic? I have already had FSR 5 years ago and the tumor is not growing but my Neurologist says I should consider GK because of the tumor size and the fact that it is pressing on my brain stem causing walking problems and balance problems. The tumor cells are not dead though.

[ellenvig]

Georg Noren in Providence RI has done repeat GK.

[john twoffer]

Do you know how the repeat GK or GKs turned out? Do you know if the facial nerve was spared?

Georg Noren in Providence RI has done repeat GK.

[LizH]

Thanks for all your response.

Yes, John I would like to talk to you but I don't know how to get hold of you.

[Windsong]

Hi Effiya,

I am perplexed by your post. On the one hand you say you had fsr five years ago AND that your An is NOT growing.

On the other hand, you say you have a neuro now who says you should have GK now? (and that he says the cells are not dead?)

I find this quite confusing. I thought people who have had fsr and then go for some Gk do so only because growth has been demonstrated on an MRI?

I realize you say you have some problems with walking now .... but... has anyone checked out if something other than an An is causing that?

I'm sorry you are having these new problems but surely Gk on an An already treated and an on an An NOT showing any growth, this Gk talk may be premature treatment if something else is causing your walking problems??

Hoping you can clarify this for me,

All the best,
Windsong

Anyone had Gamma Knife treatment at Johns Hopkins or the Mayo clinic? I have already had FSR 5 years ago and the tumor is not growing but my Neurologist says I should consider GK because of the tumor size and the fact that it is pressing on my brain stem causing walking problems and balance problems. The tumor cells are not dead though.

[john twoffer]

effiya,
please check your private messages for one from me.
John

Thanks for all your response.

Yes, John I would like to talk to you but I don't know how to get hold of you.

[LizH]

Well, my primary care physician has just indicated that my walking problems may be due to rheumatoid arthritis. I go for physical therapy and have exercises that I do at home but I don't see my balance problem improving. Does anyone know of anywhere in the contry where I can go for help with that? I walk like someone whoi is drunk but I don't drink at all. I don't get dizzy either, I am just unstable. Thanks.

[LizH]

Yes, John I have seen the messages sent to me by email. Thanks.

[john twoffer]

Effiya,
Sorry for the late reply I have not been here in a while.
I hope you mean that you have seen my messages sent by private message to you via this bulletin board's private messaging system. I have not sent any email. I would like to talk by phone but am afraid to post my email or phone number on a board because of spam. My last email address was ruined by spammers.
Are you still thinking about repeat radiation? If I had to do it today I would go for repeat radiation with Gamma Knife, but it depends on my overall health, whether my health improves or not. I am very afraid of facial nerve damage.
I guess you are up in Canada and I am in central USA.
My best,
John Twoffer

Yes, John I have seen the messages sent to me by email. Thanks.

[LizH]

Hi John,

The personal messages that you sent me were forwarded to me by email by the administrator of this website. I am actually now in northern New Jersey, somewhere near Newark.
Yes, I am thinking of repeat radiation because I suffer from balance problems and surgery won't help me there as my balance nerve will be destroyed in the process of getting the tumor out.

Thanks,

Effiya.