Radio is not for young people???

[Tisha]

Hello,

I would also like to add that in many cases, CK can be performed again if the tumor would start growing down the road.

Tisha

[Vivian B.]

Hi Tisha,

Do you know if GK be performed again if the AN regrew?

Vivian

[goinbatty]

Hi there,
Sorry to hear about your AN.  There are several of us on here who were treated at Georgetown.  If you do a search for Georgetown, hits will come up.  My only advice would be to consult with mulitple physicians and read, read, read before deciding.  I was treated with CK a year following diagnosis when the repeat MRI showed that the tumor had grown faster than the norm.  Just remember that the specialist you see tends to recommend treatment in their field.  When I went to Georgetown for consults, I was required to see a neurosurgeon even though I had already made up my mind for CK.  And as expected, he recommended surgery.  I then saw the radiation oncologist.  I'm from SC so several months later I returned for treatment.  I'm very pleased so far.  Very few side effects which were mild.  My AN hearing decreased slightly but still remained within the low end of normal.  I do think it's decreased some since my last exam in 1/09.  Will probably have follow-up exams in January. 
Sandra

[Tisha]

Hi Vivian,

I really don't know the answer to your question about GK.  I would think the only reason it would not be able to be performed is because of the "one hit" strong use of radiation vs. the "painted" fractioned CK....but I don't know, sorry.

Tisha

[sgerrard]

Do you know if GK can be performed again if the AN regrew?

Dr. Kondziolka (the GK guru from U. of Pittsburgh) was at the symposium, and he said yes. They have only done 5 or 6 cases, with good results so far. It is done on a case by case basis, and you would probably have more chance of weirdness and hearing loss. Happily it doesn't come up too often, but that also means this is one area of radiation treatment where there really isn't a lot of data.

Steve

[ppearl214]

Steve, correct me if I am wrong.... he also noted that typically, this is very rare as the success rates for many radio treatments is so high that re-do of radio treatment is usually not necessary......  did I mis-hear him?  Or was that Dr. Blevins that said that?


Phyl

[novagirl]

Sandra - thank you so much for your post. Dr. Gagnon (who treated you) and Dr. Jean were the ones I met with. They were at the meeting at the same time. I am glad to hear your CK treatment at GT went well. I was really impressed with Dr. Gagnon myself. He definitely didn't try to steer me towards any decision and provided very good explanations in "farmers' language." I felt very comfortable talking to him. I am very close to Georgetown (I live only about 10 miles outside of DC) so am very happy they have CK there! Glad to hear from someone who was treated there! And I hope your AN dies in peace and gives you no more trouble .

[sgerrard]

Steve, correct me if I am wrong.... he also noted that typically, this is very rare

Dr. Kondziolka is more of a numbers guy than an adverb guy.

He put the number at 98% control of growth, so 2 out of 100 radiation patients would have to grapple with the question of a what to do for a second treatment.

Steve

[Tumbleweed]

If I remember correctly, Dr. Chang told me the same success rate (98%) applies to AN tumor control for CK performed at Stanford.

Best wishes,
TW

[RamAir]

Novagirl...take a deep breath.  You're going to be fine

An AN diagnosis is not the end...but the beginning. Rather than go into long detail...check out my posting about my radiosurgery experience 10 years ago.

http://anausa.org/forum/index.php?topic=186.0


If you'd like to talk...I'm listening.

[novagirl]

RamAir - thank you! Your experience is truly inspirational!

[smallbutmighty]

Hey Nova Girl!
Sorry to hear you have one of these things too! I am 34 and have a small 1c AN...got GK a month and a half ago! I have video of the whole thing and post op too to share with anyone who'd like to see. My fiance is a camera man and he used iphone sneakily...but wanted to comment..DONT listen to what one specialist has to say about what another does. Instead go directly to that specialist and ask him/her! I got the same speach about age/kids etc from a surgeon. I point blankly asked him statistically about down sides of radiation verses surgery and he said that I am more likely die in a car accident than have side effects from radiation and that I would have side effects like facial paralysis etc from surgery. Not to mention recouperation time. Had GK and am so happy! Would do it again and again over surgery!

[davjack]

Hello and welcome Novagirl!  Thanks for joining us (although I wish you didn't have a reason to do so - an acoustic neuroma diagnosis).  

I'm pleased to learn that this website/forums have been helpful to you.  Unfortunately, many neurosurgeons and ENT's still cling to the concept that irradiation treatment for for an acoustic neuroma is not recommended if you're much under 50 - or 60 or even 70, depending on the doctor.  Although this may have made sense at some point, it has been shown to be inaccurate.  I'll let others offer the details as to why.  So, your doctors reaction to radiation was drearily predictable.  However, as you've already seen, not every neurosurgeon or ENT holds this outmoded view.  Definitely check out CyberKnife treatment.  

Jim

You just made my day I'm pretty sure I'm coming to my decision.
DJ

[Nickittynic]

Hello from you neighbor in Baltimore! I don't have much useful to say except Hello and Welcome! If you ever want to hear about my experience at Johns Hopkins (I had surgery there but my grandfather had GK for meningioma there, though it was YEARS ago..), feel free to PM me.
For me, I was told radiotherapy was not an option.. or not a good one, I guess.. because of a combination of my age (23 at the time) and size of my tumor (almost/about 5cm). They said it would require so much radiation that it could fry other good parts of my brain I didn't ask anymore questions about it but perhaps I should have.

[sgerrard]

I was told radiotherapy was not an option.. or not a good one, I guess.. because of a combination of my age (23 at the time) and size of my tumor (almost/about 5cm).

Age should not really be a factor, but tumor size certainly should, and a 5 cm AN is indeed too big for radiation. It is too close to the brainstem at that point.

Steve