Hi all. I had Gamma Knife about 6 months ago and it appears to not have worked. I have no numbness and my TN only seemed to have gotten worse after the Radiosurgery.
Anyone else have a similar story regarding Gamma Knife? Also, if Gamma Knife was successful for you, how long did it take before you noticed a difference?
I've talked to a number of people over the past few years who have reported similar outcomes to yours, Maria. For Type I TN, the initial success statistics reported in standards of the International Radio Surgery Association are about 70-80%. However, half of all patients having pain recurrence within five years after surgery. The positive effects of surgery when it works, may be delayed three to six months. If you'd like to read the standard, send me a note at ■■■■■■■■■■■■■■■■■■■
Do you know which nerve/ganglion was targeted for your Gamma Knife procedure? Just curious…
Here's something additional an authoritative from the Pub Med database of the US NIH, on long-term outcomes of GK in patients with Type I TN...
Long-term outcomes of Gamma Knife radiosurgery for classic trigeminal neuralgia: implications of treatment and critical review of the literature. Clinical article.
Department of Radiation Oncology, University of Maryland School of Medicine, 22 South Greene Street, Baltimore, Maryland 21201, USA. ■■■■■■■■■■■■■■■
Few long-term studies of Gamma Knife surgery (GKS) for trigeminal neuralgia (TN) exist. The authors report their long-term experience with the use of GKS in a previously reported cohort of patients with TN that has now been followed since 1996.
One hundred twelve patients with TN were treated with GKS at the University of Maryland between June 1996 and July 2001. Of these, 67% had no invasive operations for TN prior to GKS, 13% had 1, 4% had 2, and 16% had >or= 3. The right side was affected in 56% of cases, predominantly involving V2 (26%), V3 (24%), or a combination of both (18%) branches. The median age at diagnosis was 56 years, and median age at GKS was 64 years. The median prescription dose of 75 Gy (range 70-80 Gy) was delivered to the involved trigeminal nerve root entry zone. The authors assessed the degree of pain before and after GKS by using the Barrow Neurological Institute (BNI) pain scale.
In total, 102 patients took the survey at least once, for a response rate of 91%. Although not found to alter the conclusions of this study, 7 cases of atypical TN were found and these patients were removed, for a total of 95 cases herein analyzed. The median follow-up was 5.6 years (range 13-115 months). Before GKS, 88% of patients categorized their pain as BNI IV or V (inadequate control or severe pain on medication), whereas the remainder described their pain as BNI III (some pain, but controlled on medication). After GKS, 64% reported a BNI score of I (no pain, no medications), 5% had BNI II (no pain, still on medication), 12% had BNI III, and 19% reported a BNI score of IV or V. The median time to response was 2 weeks (range 0-12 weeks) and the median response duration was 32 months (range 0-112 months). Eighty-one percent reported initial pain relief, and actuarial rates of freedom from treatment failure at 1, 3, 5, and 7 years were 60, 41, 34, and 22%, respectively. Response duration was significantly better for those who had no prior invasive treatment versus those in whom a previous surgical intervention had failed (32 vs 21 months, p < 0.02). New bothersome facial numbness was reported in 6% of cases.
This study represents one of the longest reported median follow-up periods and actuarial results for a cohort of patients with classic TN treated with GKS. Although GKS achieves excellent rates of initial pain relief, these results suggest a steady rate of late failure, particularly among patients who had undergone prior invasive surgical treatment. Despite a higher than expected recurrence rate, GKS remains a viable treatment option, particularly for patients who have had no prior invasive procedures. Patients with recurrences can still be offered salvage therapy with either repeat GKS, microvascular decompression, or rhizotomy.
- [PubMed - indexed for MEDLINE]
no numbness makes me wonder if they missed the nerve entirely. get an MRI scan to confirm the nerve was radiated.
hi, same thing happened to my mother. WORSE PAIN !!! I am ready to kill this doctor already. am at my wits end
I had Gamma knife about 6 weeks ago.I noticed improvement right away,but every time i try to cut my meds down ,it comes rushing back.Not severe attacks but stings.I couldn't do the MVD because i have a AVM in that area.My first neurosurgeon thought that radiosurgery to the AVM would relieve pressure on the nerve.Well after a year there was still no change with the AVM so they thought Gamma would be the way to go.I'm hoping it will do more,but it has helped and i'll take any relief i can get!
Hi all, having a bad pain day today. I am scheduled to see a radiation oncologist for the gamma knife procedure. It scares me to death. I am extremely claustrophobic and not sure if I can deal with that frame and being in that machine. Afraid I will freak out. Sounds painful to have that frame screwed into your skull. The pain is so bad but I am terrified of the procedure itself.
Dont worry.Im extremely Claustrophobic and had NO PROBLEM.They give you good meds that work.If i had it to do over i would tell them to turn a radio on during the actual procedure,but other than that,it was a piece of cake.Good luck and DON't WORRY.The machine i used wasn't closed in.Just a ring around your head.Don
Thanks for the encouragement, Don. It helps a lot.
You're quite welcome.I know exactly how you feel.It's the worrying about it that is the hardest.For the head frame,they give you a local.It doesn't really hurt at all.It will be sore afterward,but nothing a couple of tylenol wont fix.Nothing compared to the TN pain,that's for sure.I pray and ask all that see this to pray that your results will be excellent!
In 2003, I walked out of the gamma knife clinic in Denver pain-free. Wish it had worked that way for you!
It did come back a year ago & this time insurance wouldn't pay for it. In desperation I tried an anti-inflammatory diet & I'm now pain-free for 2 months!
I agree with what others have said. Maybe they can tell in an MRI whether or not they were successful. I'm not so sure it's always the same cause & the same treatment always works.
I googled anti inflammatory diet and it looks complicated.What do you eat?Do you have a link that makes it seem a little simpler?
It's not a simple process--I was fortunate to get support on it from my wife, son, and a friend who shopped & cooked for almost a week to get it started.
We had this cookbook: http://www.abebooks.com/Anti-Inflammation-Diet-Recipe-Book-Protect-Family/6098293106/bd?cm_mmc=gmc-_-gmc-_-PLA-_-v01 It does a good job of explaining the diet & provides a lot of recipes.
I eat fish, chicken, beef (grass fed "organic") whenever possible, green leafy vegetables, eggs, green smoothies, some fruit, and some rice. Grains like quinoa, oats, buckwheat. My wife bakes bread & makes cookies without wheat or sugar. I drink rice milk & tea. Red wine. Nuts. Cook with olive oil. Gave up beer & coffee but trying it again. No wheat, sugar or sweetener, processed carbs, dairy. Once you get into it it's really not that bad. You can eat as much as you want & it's all good food. There are a lot of variations in anti-inflammatory diets, but all have a lot of similarities.
The idea is that you're consuming something that's causing inflammation of the nervous system. There's no way to know what it is, but if you eliminate everything that's known to cause inflammation in anyone and the condition goes away, you can gradually add things back. I've never had any allergies, but i've always had a "post nasal drip" and a lot of ear wax. That's gone away completely. So I know that besides TN there's been a real change.
My pain went way down in a week. I never would have believed it if it didn't happen to me. It's not expensive & most important it does no harm.
Thanks,I noticed that giving up coffee help me a lot.Someone said it was the acid rather than the caffeine which makes sense.I love my coffee but it's a small price to pay.