Radiation and Necrosis

[Dealy]

Sue-So happy for you that your tuma is showing signs of dying. Good riddance-Right. I have chosen to have another MRI-9 months coming up on March 19th due to symptoms. So I am praying that I will continue to see mine bite the dust although it is taking more of my hearing. If this keeps up I will be totally deaf by one year time in July. That is the real downer-not being able to hear like before. Oh well-can't have your cake and eat it too-or can you? Thanks for your post-Ron

[ppearl214]

"Ivan" and "the Booger" and everyone's is dying!  Heck ya!  Nothing like a little "rim enhanced mass" to make your day!  Necrosis has to be one of the loveliest words around.... I'll take my martini straight up, shaken/not stirred with extra olives

You all are doing great and thrilled that we get to do this necrosis journey together!

xo
Phyl

[okiesandy]

Margarita here. Rocks, no salt. Rest in peace Ivan and the Booger and all the others.

It is a lovely 70 degree day here, sun shining, trees budding.Balance is perfect today. I am feeling good.

Sandy

[Craig]

I was diagnosed about 6 months ago with 1.5 AN. I was having some vertigo issues which was just fluid in the ear. We discovered the AN with the MRI. I am leaning towards the Gamma Knife. I still have 99% of my hearing so I don't want to give up and do surgery. Any suggestions that you can give me?

Seeking information

[Craig]

Bruce,

I live in Nashville, TN. I have been going to St. Thomas Hospital. I have been seeing Dr. Richard Prass who is the Neurotologist. My radiation oncologist is Dr. Paul Rosenblatt. If you or anyone have had any past experiences with these doctors let me know.

Thanks,

Craig

[okiesandy]

Have you been on the cyberknife patient support site? Dr. Medbery does GK and CK and believes that hearing is better preserved with CK. I didn't have hearing to perserve. I did have CK because I didn't want frame placemant with GK. Either is good. Just evidence points to better hearing preservation with CK. Dr. Medbery has nothing to lose because he does both and is really not losing anything by doing GK over CK.

Sandy

[ppearl214]

Have you been on the cyberknife patient support site? Dr. Medbery does GK and CK and believes that hearing is better preserved with CK. I didn't have hearing to perserve. I did have CK because I didn't want frame placemant with GK. Either is good. Just evidence points to better hearing preservation with CK. Dr. Medbery has nothing to lose because he does both and is really not losing anything by doing GK over CK.

Sandy

I have to agree with Sandy  as it is a terrific resourse for anyone researching or post- radiosurgery (of any protocol). Link to the website is:

http://www.cyberknifesupport.org/forum/

Drs Medbury and Spunberg volunteer their time to those forums there and are exceptionally knowledable in AN treatments of all forms (surgical and radio).  Another terrific resource.

Phyl

[okiesandy]

Leave it to Phy to have that link ready.  Dr M must be good because for the last few days I feel as well as I did before the AN. Clear brain, good balance and just feeling good.

Sandy

[pearchica]

Hey Sigmund: I was very pleased with my treatment at Stanford with Dr. Stephen Chang and Dr. Scott Soltys.  Now I am still only 1 month out, so I don't know if necrosis has set in yet but it's worth a phone call to them or other cyber knife treatment centers at it is even less invasive than gamma knife which does require a head frame (although from what little I understand you get great drugs prior to the head frame being fit on you).

And like the others say: welcome to our club (with full on eye roll that the little icon can't really imitate well).  Take care, Annie

And of course Phyl is the BOMB when it comes to links ect...
And Okiesandy: thanks for the terminology update, I need to know that for my 6 month review- Annie

[Jim Scott]

Just noticed this thread and thought I might be able to add something useful.

I was diagnosed with an AN tumor too large to radiate (see my signature) so, to avoid possible nerve damage, my neurosurgeon recommended that he 'de-bulk' the tumor (hollow it out, in layman terms) and that I then undergo FSR to kill the remaining portion.  I did just that.  The surgery was successful - the surgeon was able to remove over 50% of the tumor - and my recovery was uneventful with no post-op complications.  3 months later, I began 26 FSR treatments, which were a bit tedious but also relatively uneventful.  I finished those in mid-October of '06.  So far, so good.  No complications.  I just found out (last week, in a follow-up visit with my radiation oncologists successor) that a December '06 MRI indicated that the tumor showed signs of necrosis.  I was elated!  My radiology oncologist said that tumor shrinkage may take a few years but the highly focused, low-dosed radiation obviously worked well.  I have another MRI scheduled for April.  Naturally, I hope to see even more signs of necrosis. 

No matter how you approach it, I believe that radiation is a very viable form of treatment for AN tumors.  Had mine been small enough upon diagnosis, I would have went with radiation (in some form) to deal with it.  That wasn't an option but I did the next best thing and I have no regrets.