stereotactic radiosurgery....

[karenl]

Hi All

Just looking for some first-hand experience with regard to stereotactic radiosurgery (Gamma Knife). For those of you who have undergone this procedure, how did you find it in terms of side-effects? And was the head-frame very troublesome?

Many thanks for any information.....

Karen

[missyk]

Karen...

Mom's not up to answering right at the moment, but i did want to let you know that she has told me (and everyone who would listen! lol) that there were NO side effects to having the stereotactic. She did lose a small amount of hair in the area where it was done, but not all of it. She also told me that there was no pain, just "a weird feeling, hard to describe" in the area where the tumor was located. Not sure if that was a side effect or her imagination.

Mom did not have the halo head frame, she instead had the mesh mask and bite plate to keep her immobile.

She is also severly claustrophobic, so we were wondering how she would handle the "mask" and being screwed to a board. She said it was easier than she expected and got through it without any antianxiety medication, though those were an option, of course.

She's been extremely pleased with how her stereotactic went...but of course, she's not had scans yet since she had it done. Expecting all is fine, though.

Hope this little bit of information is helpful, i'm sure someone will come along with something more insightful...until then, many prayers for great outcome!!

[stand4hope]

Hi Karen,

Yes, we have SRS experience. Don originally had 8 mets. Two tiny ones disappeared with WBR. In Nov. 2003, he had 6 mets zapped by SRS (Novalis). It was pretty successful. Two mets disappeared and the other 4 shrank about 30% and have remained stable until the past few months. That's well over a year.

He had no side effects at all. Just a little bit of a headache where they attached the helmet.

It was a very, very long laborious day (6 a.m. to 6:30 p.m.). There were many delays, both waiting for them to set up the machine between each picture, waiting for the onc to come back and check the setup, and one time the machine broke down for about an hour. It took about 2 hours for the onc, a neurosurgeon and ??? (I forget the third kind of doctor) to set up the computers for each individual met.

I had to leave the room when they attached the helmet. Well, actually they told me to leave, and that's a good thing because I couldn't have stayed anyway. He said it really didn't hurt but just a little when they attached it, and then the rest of the day it was just awkward and uncomfortable. The mask, I understand, is a little easier.

That's about all I remember, but we're getting to do it all again in a couple of weeks, so, unfortunately, I'll get a refresher.

It's a good procedure, Karen, and very, very effective.

Love,

Peggy

[KerryToo]

I was with her when she had her tx at the City of Hope. They attach what they call screws into the skull the day before - she said it didn't hurt, but sounded odd to hear a Dentist's drill going on the top of her head. She met with her Neuro Surgeon, the Radiologist, and someone else who "did the math" (calculations). She had an MRI later in the day for some kind of mapping.

The next day was pretty quick - considering. She went in and since all was set, they just did the radiation part for about 45 minutes all together (set up and zap time). We joked how this seemed so "Star Trek" like and amazing!

Next day they removed the screws, she lost a little hair in that area, and I helped her keep the area clean for the next few days.

The surgery was a great success - her symptoms of being confused, off balance, etc. went away immediately. It's been 6 months and the Dr's reports initially showed great shrinkage. They say that the tumor shows "enhancement" but this could be from the inflammation or result of being zapped.

I hope this helps. It's really not as terrible as you might think. I remember posting right after about the details. Take care and God Bless!

[karen335]

Hi Karen,

I too had the stereotactic. I had surgery First to remove 3cm tumor in the cerrebellum(sp?) area. It is the area that controls balance. Then I had stereotactic to get rid of any residual of cancer that may have escaped during surgery. Like Missy's mom, I had the mesh mask. As far as side effects, I was extremely tired and always sleepy. No naseua or dizziness. I too had the unexplainable feeling that her mom had. It only lasted the day of treatment and included a slight headache...

Hope this helps,

Karen

[mamasbabygirl]

The third Dr. is a physicist. My mom was very agitated by the "halo". She was not able to rest her head, even though we were there for 10 hours. Afterward, the spots where the halo was were very sore for about 2 weeks. Other than that, all was OK. We watched her during the process on a TV in our waiting room. We are still awaiting the results, which are about a month out. Best of luck.

Lori

[trishnmiller]

My husband is under the care of Dr. Aziak Wolf at Doctors Hospital in Miami, Fl. He has had Gamma Knife three times since January to remove a total of 13 brain tumors. If it hadn't been for Dr. Wolf and his willingness to use Gamma Knife on this large number of tumors (most doctors won't use it on patients who have more than 4 tumors) my husband would surely be dead. Three other oncologists and the radiologists they referred us to would only consider pallative whole brain radiation (which I refused because of the extreme side effects) and told us that he would slowly lose all function and probably die within 3 months. Well, today (six months later) he is totally lucid and still gainfully employed! He did have the halo and aside from having numbness on his scalp, no side effects at all except feeling well again! Trish

[stand4hope]

That's it. Physicist! Thank you, Lori. That was driving me crazy that I couldn't think of the third doctor. Is a physicist a doctor? Shows how much I know about physics.

Love,

Peggy