Gamma Knife Surgery

Has anyone here every had a GK surgery that actually worked, or does anyone here know of anyone that it's worked for? (I guess if it worked, one probably wouldn't be on this site anymore, LOL).

For what it's worth, my surgeon says Gamma does more harm than good and much harder to have successful MVD after Gamma Knife. I couldn't find enough success in my research to make me consider it. Just my opinion though.

From what I read here, many have tried it and it seems like it has been unsuccessful in many cases. I wouldn't want to ruin my chances of a successful MVD (if necessary/possible), but I also hate to go with the most invasive procedure first. I have also read about many here who have had the MVD and been unsuccessful.

Soooo frustrating! :)

I understand how you feel completely. When I found Dr. Fukushima, I was willing to go for it. I was still scared to death, but the procedure I had was really not bad and I woke up 100% free of nerve pain. Do you have T1 symptoms?

Well...When I was first diagnosed a little over a year ago it was T2 symptoms, then I went into remission for about a year and I thought I was in the clear, wrong. I had my teeth cleaned, and within a week it reappeared, but this time as T1. I resisted for a few months, tried everything homeopathic I could get my hands on, and then finally gave into taking Neurontin 100 mg three times a day. At first I only took it once a day and it worked well, then I had to increase to twice a day, and here I am two weeks later at three times a day, but now the pain seems more like a T2 since the neurontin. I get little tiny "fires" when I eat, but there is just this dull little pain there all the time, kind of like a TMJ pain under my ear. Also the pain moved from the second branch to the third. So long story short, I have no idea what I have anymore!

Is the keyhole procedure you had also refered to as an endoscopic procedure?

You sound similar to me. Mine was all 3rd branch, all under my teeth and at it's worst back into jaw. Mine started out of the blue about 4 years ago after I had a deep dental cleaning done. Have no idea why that flared it up, but that is the only thing I could put my finger on that was out of the ordinary right before this happened. First flare lasted about 6 weeks and then went totally away for about 9 months or so. Then I started having flares closer and closer together to the point that as of last November it was just a flare that would not go away. I tried Neurontin, then Tegregol and finally Trileptal. The Trileptal worked the best and had few side effects. Then pain started coming back and I was just ready to get off this merry go round and I had found Dr. Fukushima by that point. I think definetely for me the surgery was the was to go since I am relatively young (44) and healthy. I believe my surgery may be decribed as endoscopic. He has come up with his own procedure for treating this and has done it over 2000 times. My recovery has been very easy, minimal pain after the stiff neck of the first day cleared up. My anxiety and pain before surgery was much worse that anything I've experienced in the last 3 days.

Don't give up and don't listen to doctors who say the only way to treat is drugs or have no knowledge of other procedures. My neurologist would have been happy for me to skip around for drug to drug chasing what would work. I was more interested in a CURE if one was to be had. I was tired of not being able to communicate with my family or eat without stabbing nerve pain. That is no way to live for years on end! Best of luck to you.

From Dealing with Dr. Lim at hopkins, he rarely does a gamma. He stated that if you do the gamma then have MVD it reduces the chance of succesful MVD down to 60% or worse. I have type 2 , he is doing a glycerine rhizotomy on me on friday, if that works, then we move on to MVD. He said tn2 is harder to fix, so he wants to see if I get any relief from the glycerine and that will give him a better idea if an MVd is worth it. I researched gamma and I dont like the statistics there. There is an excellent video on the Hopkins website where Dr. Lim goes over all these proceedures, its worth a look. I know its just his opinion and statistics but it really helped me out.

Wendy

I had 1st surgery with dr fukusha in 2008 8 &!# 2nd surgery with dr fukushima in 2011. Had gamma knife a yr later (just a month ago) at MUSC in SC. My neuro surgeon has explained to me that gamma knife takes anywhere from 3 to 6 mos to see if it has worked. He also says that GK has a better success rate if it is the first line of treatment with certain forms of TN. In my case he said the success rate is greatly lowered for a number of reasons one being that I have 3 regions affected 2 that I. Have had 2 other procedures done previously. Since the procedure my left side (3 regions) have been affected. But I’m sure its unrelated. I did bring it up to my surgeon and he’s going to check into it when he does another mri in aug. I guess at that point well will discuss MVD or GK. Ill be posting

Opps sorry I wasn’t cussing I meant to say I had 2nd surgery. Lol

I had Gamma Knife 4 yrs. ago. Pain free and med free for 6 months. Then back with full force. I had MVD 2 yrs. ago this month. But now I have terrible side effects.

Ouchie boo boo, you had 2 MVD surgeries? and neither one worked? Bldr 1 had me convinced that Dr. Fukushima was a miracle worker, I was almost ready to book my flight! What went wrong that the surgeries were not effective?

soo sorry your still in pain. I hope the GK starts to work for you, there is still hope! Keep me posted!

Santafered, what kind of side effects have you had after the MVD? Who was your surgeon and where?

Yes, I had gamma Knife at the university of Kentucky about 4 yrs ago. totally pain and med free for 6 months. Then back full force. I waited 2 more yrs. then went to Dr. Raymond Sekula (then he was in Pitsburg, he is now with UMPC in Erie for a short term, then will be back in Pitsburg, I understand. Painn free for 2 months then side effects started showing up. I don't blame him, I liked him, and he still keeps in touch with me. I guess its just one of those things they don't tell you. And of coarse now that I have these side effects, he is basically done with me. We must remember they are only surgeons. When they are done, that's it. Just keep that in mind.

I'm always sorry to hear of failed MVD's. And of course, I'm still very paranoid since my surgery was only a few days ago. But I still am pain free...only surgical soreness I'm dealing with. I am trying to remain positive. I have also heard of many people who had successful MVD's. I tend to think they may not come back and post much if they are out of pain. My neighbor has been pain free for 15 years following MVD. So, Catherine, don't give up. I would still encourage you to research Dr. Fukushima if you are leaning toward surgery or even considering it. He is doing things that other surgeons don't always know to do. His partner said had someone else done my operation they probably would not have found the second compression and I would have still have had problems down the road. Not to say that I still can't. But I have a lot of confidence in him. The nurse I had last night said she had a patient here from Rome recently who traveled for surgery.

There are many good surgeons out there. And many trying to ease our pain. Through my research it seems like he is one of the best and is doing things maybe some others aren't trained in. Do your research and don't give up on a cure!