Hi - I am scheduled for Gamma Knife procedure in less than 36 hours. Has anyone had this done?
Not sure why I am freaking out as I was unphased as my last procedure (Glycerol Injection) came and went. Please resopnd
OHHHHHHHHHHHH let me know how this goes !!! im considering it too !!!
One thing I learned, Albee, is to take deep breaths and concentrate on "seeing" the air move in and out of my body. Deep breathe to get your abdomen to be fully extended and breath out every ounce you can. Also, give yourself 10x and see if your anxiety comes down to normal.
Totally know the feeling prior to Gamma Knife…but it was not as hard to go through. Afterwards though, when the radiation "kicks on" it can be painful until the nerve is damaged enough to stop firing. I had two GK and then MVD. Wish I'd gone the MVD route first. I ended up choosing Ben Carson, MD at Johns Hopkins in Maryland and he was the best! He completely got rid of the stabbing pain but the damage from the gamma knife is there still. Very painful at times. Apparently GK works great on older people because their nerve does not grow back. But I was 37 and 38 when I had GK and so young that my body grew the nerve back and now I am stuck. I use Botox in the scalp every 6 weeks and it is amazing for about 4-5 weeks then the nerve comes back. I was so afraid of MVD back then that the GK seemed the easiest road for me. I could not risk being disabled due to MVD with two babies and a 9 year old. I will be praying for your calm, cool, collected self to walk through these next few days :-) Take good care! LyndaS
LyndaS said:
One thing I learned, Albee, is to take deep breaths and concentrate on "seeing" the air move in and out of my body. Deep breathe to get your abdomen to be fully extended and breath out every ounce you can. Also, give yourself 10x and see if your anxiety comes down to normal.
Totally know the feeling prior to Gamma Knife…but it was not as hard to go through. Afterwards though, when the radiation "kicks on" it can be painful until the nerve is damaged enough to stop firing. I had two GK and then MVD. Wish I'd gone the MVD route first. I ended up choosing Ben Carson, MD at Johns Hopkins in Maryland and he was the best! He completely got rid of the stabbing pain but the damage from the gamma knife is there still. Very painful at times. Apparently GK works great on older people because their nerve does not grow back. But I was 37 and 38 when I had GK and so young that my body grew the nerve back and now I am stuck. I use Botox in the scalp every 6 weeks and it is amazing for about 4-5 weeks then the nerve comes back. I was so afraid of MVD back then that the GK seemed the easiest road for me. I could not risk being disabled due to MVD with two babies and a 9 year old. I will be praying for your calm, cool, collected self to walk through these next few days :-) Take good care! LyndaS
I forgot to say that Dr. Ben Carson is a pediatric neurosurgeon and makes exceptions for adults with TN because of the pain it causes. He has written a few books, Gifted Hands and I can't remember the others. But, I read his books before deciding on him to do the MVD. I also thought I'd google "Trigeminal Neuralgia Healed" to see what I could find (and hopefully balance all the bad news I had found prior on the net) and sure enough there was a gal who had just had and MVD by Dr. Carson. It might be worth calling to talk to Carol James, who is his assistant for many years now. I had talked and eMailed her for quite some time before going in for the consult and operation. Talking to her cost me nothing, but I gained so much learning from her. I can't say enough good things about Johns Hopkins…they were amazing! Blessings to you! LyndaS
Hi Albee, hope by now you're sleeping peacefully. Praying all goes well for you tomorrow! We will be thinking of you....
~ Vicki
- Albee, My prayers are with you. I pray it all goes well. It is natural to feel nervous and apprehensive, looking forward to hearing from you after it all over with.
Albee my heart goes out to you. My encouragement to you is to tell you sincerely that NO OPERATION OR PROCEDURE I have ever had has been as bad as I imagined prior to. If I could have all those worried hours back to use for reading I could read War & Peace x 10. It was all pointless and you know, you are very brave to do it, remember that. All the best! xx
Thanks Vicky! After the 3rd Clonazepam, I finally nodded off for a few hours. Doing better, thank you. Something about the complete dark, silent nights that get me razzled..
Vicki Dvorak said:
Hi Albee, hope by now you're sleeping peacefully. Praying all goes well for you tomorrow! We will be thinking of you....
~ Vicki
Thank you Jackie, much appreciated!!
We will be waiting to hear all about it and how your feeling, hope all goes well
Regarding Gamma Knife, I am candidly of two minds. It does help some people. But it also damages some people. And the practice standards of the International Association for Radio Surgery indicate that 50% of all Gamma Knife patients experience a recurrence of pain within three years after the procedure is performed. If you are a candidate for surgery at all, then MVD is head-and-shoulders a better approach. Please read and consider the attached article.
Regards,Red
Regarding Gamma Knife, I am candidly of two minds. It does help some people. But it also damages some people. And the practice standards of the International Association for Radio Surgery indicate that 50% of all Gamma Knife patients experience a recurrence of pain within three years after the procedure is performed. If you are a candidate for surgery at all, then MVD is head-and-shoulders a better approach. Please read and consider the attached article.
Regards,Red
Hope it went well. Please let us know how you're doing when you feel up to it. Fingers crossed!
Hey Red, appreciate the input. I am fully aware of the re-occurrence issue. At this point, Im just not ready to commit to something of the level of MVD. I am planning a long road forward and Id like to think there was a fast track to pain free, but in my mind this path is filled with additional procedures such as MVD a little further down the road.
Have not read this yet, but what I am seeking is actually probability info on the various procedures. My surgeon quotes a standard 75% for each, which is a bit too round for me to believe.
What’s up Albee, I have a appointment with a doctor who does gamma knife on the 2nd of feb, I feel it’s gonnna work for you, may the luck of the gods be with you man 
Albee, if your surgeon is claiming 75% success for Gamma Knife, that's probably about right, with half of all successes having pain recurrence within 3 years. For MVD against Type I TN, an experienced team is likely to have stats at 90% or above for a first procedure, with 70% of all successes remaining pain free after 12 years. MVD in fact has lower likelihood of needing to be used downstream, than does Gamma Knife.
In my view, the ONLY reason why Gamma Knife might be considered would be in a patient for whom the risks of surgery are higher than for most people, as for instance in patients with high blood pressure or a history of stroke or seizure.
Regards, Red
Albee these decision are so difficult to make, what ever you decide my thoughts and prayers are with you today.
I would like to know how the GK went. I had it done in 2000 and it worked great. It is painless. It was a non-event actually. Putting on the head frame was a real bummer big time. But after that, its a piece of cake. Took 8 mos. for it to finally do its thing. But I went pain free for 10 yrs. Then the TN came back and they gave me the new Cyberknife. That was much much more agressive. I'd choose the MVD instead of the CK if I had it to do over again. But they didnt recommend that for me. But anyway let me know how your GK went.
My experience with GKRS is that I had it performed on 2-29-08. It relieved the very intense burning stabbing pain for 3 years. Then in May of 2011 the bad intense pain and deep aching pain came back, but the burning pain is now managed with Effexor and Topomax. Best wishes to you Albee, I hope that you have longer results!! Peace, Min
Jimmy how did the GK work for the second time you had it done? How are you now?