People w/ recurrant tumors using radiosurgery

[Patti UT]

Would love to hear from people who had or are considering radiosurgery on recurrance after micro surgery the frist time.  Interested in what helped you in your decision making.

thanks
patti UT

[Larry]

Patti,

You know my reasons for my choice for radiotherapy but for others, the main reasons were.

1. Middle Fossa surgery didn't get rid of the AN
2. I have had chronic headaches since (almost 7 years)
3. I lost all hearing in one ear.
4. It was purely an observation from posties to this forum but there did seem to be a high incidence of facial nerve damage with translab.
5. Given the above, surgery was a last resort for me. i didn't want to go through the 6 week rehab process, worse headaches (if thats possible) and the possibility of facial nerve damage.
6. FSR seemed to have good stats for success from posties here as well as from my doc.

Laz

[suboo73]

Hi Patti,

Sorry i can't help with this as i am in W & W mode.
But i will say a prayer that you get the answers you need.

All my best and i will be thinking of you.

Sincerely,
Sue

[Sheryl]

Patti - Although not an AN, my husband has another type of benign brain tumor called a meningioma.  He had surgery May, 2004 and when a regrowth appeared in 2006, he took his time deciding between another surgery or Cyberknife.  In October, 2007, he had Cyberknife but unfortunately another regrowth was found in June of this year.  He just underwent surgery as that was the treatment of choice at this time.  He is only a little under two weeks out from surgery and in an acute inpatient rehab facility and slowly making gains.  We have no idea what his outcome will be as "everyone is different and time will tell".  We go back to the neurosurgeon this week for stitch removal and pathology report which will tell us more.
Sheryl

[sher]

Patti,
I just replied to a post of yours about the Skull Institute,,, and then I found this one,
I had Cyberknife in Salt Lake the first of October. I just had my 9 month MRI and the thing is dying and shrinking. I would be more than happy to get you in touch with Dr. Reilly at SLCK. You can also go on the cyberknife forum and ask questions of Dr. Medbury and Dr. Radmus. I will even go to a consult with you if you want me to at Cyberknife. Don't rule it out,,, ask questions first. I was the first AN that that clinic had done and now they have done several. Dr. Reilly has been doing Cyberknife for a few years, so I felt comfortable and I have had a really good outcome. I can call there and talk to him about treating recurring an's if you would like me to. I will be glad to help in any way I can!!!!

Hang in,
Sherry

[ppearl214]

You can also go on the cyberknife forum and ask questions of Dr. Medbury and Dr. Radmus.

Hey Sher,

Just to clear up the docs on the CK boards (www.cyberknife.com).

"RadRUs" (like ToysRUs) is Dr. Clinton (Buddy) Medbery in OKC
"Dr. J" is Dr Jerome Spunberg in FL


Patti, have made your suggestion about a section here for "Recurrent AN's" to the powers that be.... definately under consideration

Hope that helps.
Phyl

[Patti UT]

Thanks Phyl,
     It would be interesting to see what treatment option recurrant patients chose.  I am going nuts with all the info on GK, CK, & Novalis FSR.  Very confusing which one is best.   One BIG concern I have I read about any radiation on an AN is that it will "fuse" the tumor to any nerves it is touching, especially the facial nerve. Therefore if the tumor continues to grow and eventually has to be syurgically removed  the facial nerve would need to be severed to get it out, with a 100% likelyhood of facial paralysis.   I will be interested to hear what the Radiosurgeon has to say.  I read your thread on the CK site about dealing with the mental stress of the waiting game after radiation.  Having this thing come back after surgery, I would say that the "waiting game" never goes away.  Theres always the wondering if it's coming back even after surgery.  At least with radiation though, you don't have thoes nasty after surgery things to deal with, but then there are the after radiation things to deal with..............no easy answer is there?

going crazy here......

patti ut

[ppearl214]

YooTee!  Gonna make a suggestion... but, it's up to you.

sher and I have lightly brought your situation up to the docs on the CK Patient Boards (www.cyberknife.com). Now, Dr Medbery is following along.  He's VERY versed in all forms of radio-treatments... the training for CK centers is done at his facility and has also been doing GK for a LONG time.

If you go to the forums, go to the "Acoustic Neuroma" sub-forum and look for the recent thread started by sher.  Dr. Medbery has been following the thread and dicussion and at last check, said you should be ok for radio. Now, as it pertains to specifics, I would quiz him.  Get his thoughts. Throw any and all questions at him.  Pick his brain about these questions. No harm, he doesn't bite, its free and heck, he likes to be harrassed.

Just my 2 cents.... ask him. No harm asking him as long as he is volunteering his time to help those like you and me and so many others.

Hang tough, m'dear!
xoxo
Phyl

[Cheryl R]

Patti,    I seem to be the only one on the forum who's dr knew we might be having a facial nerve involved and if was severed would do a nerve graft right away from a nerve by the ear.        I am not back to perfect and never will be but good enough for what was involved.         There are posts of the nerve severed and the dr seems to have no clue about it or that something can be done.              So if one does have surgery, it is something to ask the surgeon if he has done this before.
     I was sorry to hear of you having to go thru this and hope for the best for you.                       Cheryl R

[Patti UT]

Wholy Moly CHeryl R,  reading your signature, youv'e been through the wringer  ( and I don't mean ringer  as in tinnitus  )

so much info to sift through.  The regrowth is small yet, so it's very tempting to just wait a while.  we'll see.

Phyl,
  thanks for starting the ball rolling on the CK site.  I'll get over there on Thurs.  Taking my kids on another get away in the am, back Wed night.  Geeeeeeee,  two trips since I got the news,  think I'm running from somethin??  keeping busy
love ya Phyl
HUGS

patti ut

[sgerrard]

I am going nuts with all the info on GK, CK, & Novalis FSR.  Very confusing which one is best.   

Cyberknife. Because that's what Phyl and I had.

One BIG concern I have I read about any radiation on an AN is that it will "fuse" the tumor to any nerves it is touching, especially the facial nerve. Therefore if the tumor continues to grow and eventually has to be surgically removed  the facial nerve would need to be severed to get it out, with a 100% likelyhood of facial paralysis. 

Actual experience is definitely better than that. One study reported about 25%, or one in four, cases of surgery after radiation resulted in some facial paralysis, not the permanent kind from completely severing the facial nerve, but the gradually recovering kind from scraping it. Combine that with a 2% or less chance of another regrowth, and it is not much of a risk. On this forum, several people in the last year have had surgery after radiation, without getting major facial paralysis. One factor that helps is that the sticky part is also dead, and can safely be left behind.

Talk to Dr. Medbery. Maybe even get CK from him. He is a good person, as well as a fine physician.

Steve

[sher]

Patti,

Dr. Reilly, (the CK doc in Salt Lake) was trained by Dr. Medbery and is very good, so no worries there if you decide to go for CK.

Sher

[nftwoed]

Radrus -  buddy@swrads.org
Dr. Clinton Medberry MD @ St Anthony's Hospital, OKC, OK 38 years experience