ANA Discussion Forum

Treatment Options => Radiation / Radiosurgery => Topic started by: clr on December 17, 2009, 07:45:26 pm

Title: Too good to be true?
Post by: clr on December 17, 2009, 07:45:26 pm

Ok, so Betsy's cyberknife treatments were done at the end of October. She has felt absolutely no symptoms of any kind.

To all of you that have had cyberknife, is this too good to be true? Are there symptoms that can pop-up further down the road?  In other words, what can we expect?

I sure to wish I had found this site at the very beginning. I didn't find this place until 6 months too late!!

Thanks,
Cindy



 

Title: Re: Too good to be true?
Post by: leapyrtwins on December 17, 2009, 07:55:25 pm

Cindy -

I didn't have radiation, I chose surgery, but during my decision-making process I was told that side-effects of radiation sometimes take 12 to 18 months to appear.

Those who had radiation can tell you for sure, but she may encounter some symptoms down the road.

Jan

Title: Re: Too good to be true?
Post by: sgerrard on December 17, 2009, 09:09:32 pm

I would think that an acoustic neuroma that had been operated on multiple times would be less likely to give symptoms. It should be pretty tuckered out by now. Seriously, removing blood supply by surgery first should make swelling less likely.

I had a small AN, and my main bout of swelling pressure was about 3 months after treatment. Sometimes people experience it later, and with a larger AN it can last a while. I would not be surprised if Betsy doesn't experience much, given the previous surgery that has been done.

You never know, but I would not worry about it. If something happens at all, it will most likely be a mild effect.

Happy New Year to Betsy!

Steve

Title: Re: Too good to be true?
Post by: Mark on December 17, 2009, 09:29:17 pm

You may have no symptoms at all, but there can be post radiation treatment reactions of the tumor and nerves for up to 12-18 months. Generally the longer you go without something the more likely the reactions will be milder, but typically I think most folks have some thing occur within the first six months, usually some temporary balance / vertigo scenario related to swelling of the AN or irritation of the cranial nerves

Mark

Title: Re: Too good to be true?
Post by: stoneaxe on December 17, 2009, 09:55:31 pm

I had proton beam not cyberknife but I felt fine for a month and the worst symptoms didn't show for about 6 months. Then it went down the tubes. Hope Betsy has a better experience.

Title: Re: Too good to be true?
Post by: mk on December 18, 2009, 08:50:55 am

I had GK, but the potential symptoms can be the same. I have been very fortunate that I didn't experience any adverse reactions, so in my case it was truly "too good to be true".

I would tend to agree with Steve, that generally symptoms shouldn't be  intense when radiosurgery follows microsurgical removal.

For a very objective and detailed account of possible side effects and the entire progression after CK treatment I suggest that you visit Lorenzo's (fbarbera on the forum) website - you will find the link in his signature.

Marianna

Title: Re: Too good to be true?
Post by: leapyrtwins on December 18, 2009, 02:20:18 pm

Quote from: mk on December 18, 2009, 08:50:55 am

For a very objective and detailed account of possible side effects and the entire progression after CK treatment I suggest that you visit Lorenzo's (fbarbera on the forum) website - you will find the link in his signature.

Actually Lorenzo's user name is "Lorenzo".  I think Marianna means Francesco (fbarbera) who had CK  :)

Jan

Title: Re: Too good to be true?
Post by: mk on December 18, 2009, 02:35:04 pm

Oops sorry  :-[  . At least I did remember his user name.

Thanks for pointing this out Jan.

Marianna

Title: Re: Too good to be true?
Post by: Anomar11 on December 18, 2009, 08:52:56 pm

Hi

I had CK 11/08.  No significant symptoms until 4 months - vertigo, then persistent balance symptoms of varying degrees.  At 6 months started having facial spasms.  My 12 month MRI does show some swelling but with necrosis.  I'm actually starting to feel better now.  Less days of wonky head and facial spasms are markedly improved.  I almost wonder if it isn't actually coming down in size a bit as the MRI is a snapshot in time.  They usually say symptoms can appear 3-18 months out, but I've read of some folks having them earlier and later than that.  I didn't think I had balance symptoms prior to diagnosis, but in hindsight, there were several instances over about 3 years where I became very nauseous, thought it was hormones or low blood sugar.  In some instances, I'd throw up, think I had a "bug", lie down for a while, then be fine.  I'd think to myself, that it must have been a mild case as I never had any diarrhea as one usually has in combination with a g.i. bug.  In hindsight, I'm quite sure it was that brain booger.  When asked at diagnosis if I had any balance issues though I said no.  Hopefully I will continue to progressively get better in the wonky head area.  It's certainly possible that Betsy will have no symptoms, but it is a waiting game.   

Title: Re: Too good to be true?
Post by: clr on December 22, 2009, 12:19:12 pm

Thanks everyone for taking the time to respond!! Now, we do have an idea of what can be expected.

Thanks again,
Cindy