Posted , 5 users are following.
Hi group members - I was diagnosed with TN in 2006 and had MVD surgery in 2009. The surgery was unsuccessful. I was wondering about gamma knife?Has ayone had this procedure/surgery? I am seeing my family physician in a couple of weeks and would like to discuss this with her. I am really interested in how you got along and was this successful for you. Thank you for reading.
1 like, 12 replies
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esther48415 marlene36342
Posted
look up this article; good luck
J Neurosurg. 2010 Dec;113 Suppl:172-7.Gamma Knife surgery for recurrent or residual trigeminal neuralgia after a failed initial procedure.Huang CF1, Chiou SY, Wu MF, Tu HT, Liu WS.Author information
Abstract
OBJECT:
The purpose of this study was to assess outcomes of Gamma Knife surgery (GKS) as a second treatment for recurrent or residual trigeminal neuralgia (TN) after failure of 3 initial procedures: microvascular decompression (MVD), GKS, and percutaneous radiofrequency rhizotomy (PRR).
marlene36342 esther48415
Posted
deb5678 marlene36342
Posted
It was excellent
I got immediate results
I now. Have headaches which I never knew what a headache was
But they are minimumal
Hope it helps for you!
marlene36342 deb5678
Posted
michael64483 marlene36342
Posted
Had successful MVD in 2002. Pain returned in 2009 & had Gamma Knife. Pain went away instantly. Returns in Dec 2013. Had 2nd Gamma Knife in Jan 2014 & again pain went away instantly. Pain returns Apr 2017 and had PSR, surgery failed but pain went away anyhow due to high doses of Tegretol (600 to 800 mg daily) and 72 hour Fentanyl Pain Patches, dosage 25cvg. Pain returns subtly July 15 this year and again Pain Patches are reducing.
marlene36342 michael64483
Posted
Hi Michael - first of all, thank you very much for your reply. The reason why I was trying to get "first-hand opinions" was to have a chat with my family physician about this. I will do further research on gamma knife and hope I can find a neurosurgeon if all goes my way. My pain levels have been increasing and I am now at the point that I will do anything to get some relief.
michael64483 marlene36342
Posted
On Apr 3, 2017 at my 7th visit to ERs in 7 days a Doctor at Bethesda North in Cincinnati Ohio shrugged his shoulders and said, "Let's try this pain patch." Within 4 hours I was talking, eating, drinking & swallowing with little to no pain. Prior to that patch I had to write things down & was fed intraenously as I could not swallow any pills for previous 13 days & was losing a pound per day. Docs act like Fentanyl Pain Patches won't work,
?but for me they worked miracles. Nobody else has tried them for TN as far as my research shows. Here is the pharmacology report on Fentanyl Pain Patches:" Fentanyl is an opioid analgesic. Fentanyl interacts predominantly with the opioid mu-receptor. These mu-binding sites are discreetly distributed in the human brain, spinal cord & other tissues.
?In clinical settings, fentanyl EXERTS ITS PRINCIPAL PHARMACOLOGIC
?EFFECTS ON THE CENTRAL NERVOUS SYSTEM." The Trigeminal Nerve is part of the NERVOUS SYSTEM and comes directly from the BRAIN. My ER Doctor tried it and my family doctor I had to beg on my hands and knees to prescribe it - and it worked again. I used patches for 18 days the 1st time (6 patches) and 9 days this time (3 patches). Try this routs in combo with 600 mg daily of Tegretol and 600 mg of Gabapentin, though I can't say the Gabapentin works for sure.
deb5678 michael64483
Posted
Michael
From my research it depends on the doctor whether it will last or even be successful
You should have the Nuerological of the Cleveland center to help you
I filmed myself with pain and my doctor saw it therefore his compassion to get it right was 100😍% right
You can repeat a treatment I have heard but again I believe it depends on the dr if it last
My 2 cents on this
gill32586 marlene36342
Posted
Hello Again Marlene, Sorry you're still having trouble. Can't help you with Gamma knife, I'm afraid.. My surgeon offered it about 5 years ago but I declined due to a problem I have with claustaphobia and the cage conraption that you're fitted with for a while. However, I'm considereing it now as I'm becoming increasingly more desparate with this darned thing we all have in common. I'd be inclined to give it a try if I was you. I understand it's completely a pain-free procedure and can have good results but they differ.. It also seems safe.
I'm sorry I can't be of more help but the very best of luck whatever you decide.
Love and Best Wishes, Gill
deb5678 gill32586
Posted
I wish this had a picture section I could show you because my friend took a pic of me
Look at Mayo Clinic site for their drawing
Deb
marlene36342 gill32586
Posted
Hi Gill - so nice to receive a message from you. You are so kind and very sweet. I'm just doing a bit or research before I have a chat with my family dr. This procedure is not done in the province I live in (Canada) but would have to travel about 2000 miles and go back to the hospital where I had MVD. I have been reading positive comments as well as some negative. One thought that has always been on my mind that I cannot rid is that there is something else definately wrong in my head. This thought will not go. I just feel there is something there that has not shown it's ugly head. I hope your days are peaceful and your pain levels are controllable. Much love, Marlene
gill32586 marlene36342
Posted
Hi Marlene, So sorry you're feeling poorly at the moment.. If you feel you need another MRI you must ask. T.M plays lots of tricks with us but if you've felt this way for a while ,surely you would have had other symptoms if something really wrong was happening. We have a lot of anxiety generally- not knowing when the T.N will strike again and it's difficult to get it off our minds. Depression also can play tricks with us and makes us always take the worse possible path, so do take all this into consideration.
I'm also sorry that you have such a long way to travel. I have just 5 miles to travel to my neurologist so perhaps you should relocate!!! I do hope you don't have to wait too long. Get eveything off your chest when you see the doc.Meanwhile I'll be thinking of you and let me know when you've seen him.
Lots of love Gill