gamma knife
 

hello... I'm seriously considering having gamma knike radiation treatment. Can anyone please tell me their experiences with this? thanks, karen

BTT....anyone?

I'm awaiting authorization from my insurance company,

Fowki,

So if they approve you, you're going through with it. Who is the doctor and where are you having it done?

Also, what does "BTT" mean?

BTT = Bump To Top

Yes, I am going to do it. The Doc is Kenneth Ott here in San Diego.

Mine will be slightly different as I will be done under general anesthesia due to my Parkinson's.

Fowki,
I hope you'll post about your experience. I've only found a couple of posts through searches where people have described their experience with this procedure. I also hope you'll get a favorable outcome and some relief from the pain.:hug:

Good luck Fowki !!!!

Keep us posted please !!! I have an aunt who is considering this procedure, so, I will be glad if you tell us about your experience.

:hug:

ABSOLUTELY!:grouphug:

I'm anxious to hear how it goes for you, too....which I hope is great. This seems to be the most "attractive" procedure to me out of all of them.

Okay, I'm approved! Friday I meet with the Radiation Oncologist, and then we schedule the procedure......

Oh my Gosh Fowki !!!! How exciting !!!!!!

Good luck !!! All the best !!!

Keep us posted please !!!

:hug:

Gamma Knife Report
 

I had the gamma knife done five years ago. I was totally pain free the same night and it stayed that way for six months. Then, I got numbness from the corner of my right eye to my chin. It has never gone away but it is NOT pain. It's numbness and pressure not unlike sinus pressure.
They tell me after 5 years the TN can come back but I'm hoping I'm an exception. The procedure itself only involves a small amount of pain when they attach the frame with screws, but after TN it's not much to take.
The percentage of patients who get the numbness is low so I still think it's the best way to go.
My Dr. says if the TN does return then my only option is an MVD because the nerve already has numbness. Well, I'll cross that bridge when I come to it.
By the way, you should be awake for the procedure. A friend had the GK when under sedation and she ended up with AD. Hope I've been some help.
Best Regards, metal1

Okay, had the MRI, but it was not good enough quality, so I have to go back to repeat it on April 01.....

Gamma Knife- Follow Up
 

Hi Karen. I have Atypical Unilateral TN on the left side (jaw area only Thank God). I've suffered with TN since approximately 2004. It seemed to be seasonal in the beginning and worsened over the years. I tried everything from dental bite guards, to chiropractics, to acupuncture, including the GK treatment this last September 26th. I was hoping to get somewhere between 3 and 10 years of relief. It's a fairly easy procedure with little side effects. I'm 42 years old and in relatively good health other that the TN. The GK treatment takes a few months to really kick in.

The GK treatment only gave me about 60 days of pain free living before the electric shocks started up again. I'm not 'back' on 1200mg of Tegretol per day in the fuzzy state of mind in order to somewhat control the pain.

I'll give this advice. Go to a notable Neuro Surgeon and have him or her do a MRI. They are the best MRI interpreters and will tell you how many vessels are compressing your trigeminal nerve. Don't mess around with any other methods of treatment other than the MVD (unless you physically can't undergo a surgery).

I'm finally scheduled for my MVD operation on 4/3 and can't wait. Sure I'm anxious about all the possible things you will read about MVD ops, but I would have done it years ago if I'd had an expert read my MRI. I would have save tens of thousands of dollars in other useless treatments (yes, herbal treatments too) and gone for the MVD. It's the only treatment considered permanent with a 98-99% likelihood of curing your ailment.

I hope this information save you time, money, and most importantly, undue suffering of your TN affliction.

God Bless!

Karen,

I replied to your post a few days ago, but it might have been too wordy for you to read through. That being said, I will keep this one brief regarding my GK experience.

It is a very quick and relatively painless procedure. They will knock you out for a few minutes while they attach a halo to your head as they screw down to the bone. Sounds bad, but you will come around after it's over. I came around as they were wheeling to the MRI machine for a last minute check. The MRI machine feeds it's data to the GK machine for a precise target area. You will still be pretty doped up, so you will most likely be in a somewhat sleepy twilight state during the GK treatment (about 45 minutes for me as I recall). Maybe it was shorter.

There was some slight bleeding from one screw area when they removed the halo, but that was it. My face swelled up for a few days afterwards (about 4 or 5 as I remember) and then goes away. The screw points were a little sensitive during the healing, but that was it.

Hope this info helps you. Please feel free to ask me more questions if you want. BTW, I only got about 60 days of pain relief from the procedure; very disappointed. I'm having my MVD done in 5 days (March 3, 2009). I've tried everything else. Again, hope this info helps.

Good luck and God bless!

Todd

I had the Gamma Knife treatment at the University of Alabama Medical School in Birmingham, Alabama about 3 years ago with NO success. I noticed no effect either good or bad after the procedure. I had opted for the Gamma Knife over cutting a hole in my head (MVD). I now take Lyrica, 75mg, 3 times a day and that controls my Trigeminal unless a flareup occurs then I up to four times a day. Have noticed no side effects from the Lyrica and have been on it about 18 months.

Okay, Campers...

My GK is FINALLY scheduled for Thursday, April 30th at 0600 a.m.

Nervous, but ready to get it on! Details as I experience them... :grouphug:

Aw Fowki !!!!

My thoughts and prayers are with you !!!

Good luck in the procedure !!!! :grouphug:

God Bless.

Let us know ! Thanks !

Gamma Knife for TN
 

My wife was hospitalized for pain management of TN last September. Gamma Knife was the least invasive surgical correction and since she has MS, we thought it would be a good start. Immediately following the procedure, she had a mild episode of pain then was pain free for the past six month. Just last week she started having "less severe" pain episodes, periodically throughout the day. Although the pain is described as less severe, she is under the constant threat of the condition worsening. We are now considering Micro Vascular Decompression.
MVD (compared to Gamma Knife) seems to have a higher success rate with TN. At least that's what the on-line information says.
Hope you feel well.
John

Had the GK 04/30. All went smoothly, and other than screw site tenderness and a vague headache off and on, so far so good!

Gamma Knife Treatment
 

I'm scheduled to have the Gamma Knife a second time this morning at 0630 in Columbia, SC. I had it the first time at the University of Alabama in Birmingham, AL about 3 years ago with no success. My current Dr. (Dr. Worthington) wants to try it again and hopefully it will help this time. If not, my next move will be to have the Percutaneous Balloon Compression Rhizotomy and if that doesn't work then the MVD. I have suffered TN about 5 years and am currently taking both Lyrica and Neurotin with only limited success. As I write this I am having terrible jolts about every 2 - 3 minutes that last about 30 seconds. It's now 1:45am and I'm only about 5 hours away from reporting to the Gamma Knife center. I'll let you know how it turns out.

Just wanted to stop in and let you know that so far all is well!