Hi,
I just joined today. I had the Gamma Knife procedure done earlier this week. Can anybody tell me when and if they got any sort of relief from it. Does it take a while? My doctors were so unspecific on the timeframe. I have already had MVD surgery and I am at the point where tegretal (my friend) is not working for me anymore.
Need Answers!! Thanks!
I had my bilateral GKR on 12/28/2010. I’ve had bilateral TN for well over 15 years now. I have Atypical (TN2) on the upper half of my head and Typical (TN1) on the bottom half of my face. I was told I had about a 90% chance of getting some relief for the Typical TN but no more than 30% for the Atypical TN. As of right now, my Neurosurgeon was pretty close. If I had to guess I would say I’ve gotten about 75=80% relief for TN1 on the lower half of my face but absolutely no relief for my TN2 on the upper half. He told me to still give it more time, hopefully I will see even more of a difference. My TN still comes and goes (stress, wind, some cold foods, loud noises, barometric pressure, storms, etc.) but it’s not nearly as severe as it was. Today, was the exception due to having two extractions today. A very dear friend of mine who also suffers from TN told me that my horrible attack today/tonight may have actually been due to the Ephedrine when they numbed me. I am not familiar with that being an issue. I would love to know more about it, if anyone else has information about that.
My Neurosurgeon told me that it would most likely take three to six months following GKR to get any relief. Although we get anxious and would like to see instant relief…just keep in mind that there is hope in sight.
I first tried Tegretol but I was unable to take it. It made me swell up. I looked like I was in a bar fight - and lost! Hahaha. I’m now on Trileptal instead, as far as seizure meds. It also has it’s pros and cons but overall is MUCH better for me than Tegretol. Hope you are able to get some relief soon. :o)
I have NOT had the Gamma Knife but I am considering it. I had an appt with neurosurgeon 3 days ago and he is to call back with surgery date. May I ask you, What happened? How is the surgery? What do they do? How do you feel? I have Atypical TN no compressed nerve. So my chances at pain releif are somewhere between 30-50% unlike with you my doc said it is 80% pain reduction with Classic TN.
Anything you want to share about the surgery I would be grateful.
God Bless
laurie
also Mindy I have heard that dental injections do cause a flare up of TN but I have always thought it was because of the needle going in and hitting a nerve, I havent heard anything about the actual medication being used to cause a flare up, but I havent researched it nor asked the dentist to go into detail either. I know not much help.... sorry
god bless
laurie
Hi Laurie! I can’t speak for everyone…I’m sure there are some that have been helped greatly by Gamma Knife Radiosurgery while having Atypical TN. I am very happy I had it done due to my Typical TN, but having gone through it…don’t think I would repeat it with the intent of relieving my Atypical TN again…at least not right now. I still have to wait it out some more to give it time…but as of right now it’s done nothing for my Atypical TN. I keep telling myself that beggars can’t be choosers though so I am thankful for any relief I’ve been given. I had bilateral GKR in the same day. I had radiation for 47 minutes on one side and 46 minutes on the other.
PERSONAL PROS & CONS -
Pros:
1) Significant relief from Typical TN. My “zaps” have diminished by about 75%-80%, if I had to guess.
2) Hospital stay was short - Outpatient surgery. I was able to be at home resting in my own bed.
3) No big scars, and what scars I do have are not visible.
4) Although I was scared about having the frame screwed into my skull, it wasn’t nearly as bad as I had thought it might be. It sure didn’t feel good - don’t get me wrong, but because of what they apply beforehand, each one hurt for a very very short time. I was more than happy with that! It didn’t even hurt 15 seconds after was finished. I just got up and walked back to my personal waiting area where my mom was waiting on me. I even sat there and ate a Wendy’s meal AROUND the frame while I waited. Hahaha
Cons:
1) The pressure from removing the frame was bad for 2-3 days.
2) The pin sites remained sore, especially in the back where there is more muscle to go through for a month or two…making it hard to brush my hair.
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I am not on this page a lot, but if you have a Facebook account, please look me up there. I am in a couple awesome Trigeminal Neuralgia support groups there. I would love to talk to you more there if you’re able! :o)
Hi TN2004,
We spoke back in May about the Gamma Knife you had just had it done. I went to my appt with the Neurosurgeon and I was approved for the surgery. I will have it done in July. I was hoping to pick your brain and see if what kid of results you have had. Its been over a month at least since we spoke and you were just recovering. So has it helped? Is your pain better? I hope so, I hope its GONE!!! Woulnt thyat be super.
Well I will let you go, I have found some support groups on FaceBook. They are pretty good also, so I was hanging out there but I thought I would come back here and see what is up. I hope you are doing better and you dont mind me asking you questions.
Thank you,
laurie
I had GKR done in May of 2010. It was great for 9 months. Totally pain free. The GKR itself was a bit scary in a sy-fi sort of way but not painful. The swelling for a few days was not too bad. I ended up having the MVD done a month ago. I almost wish I had done that first. They found 3 deep compressions on the Trigeminal nerve. A month out and I have no TN pain. I am healing fine and weaning off carbitrol.
I hope this helps any who are considering GKR or MVD.
Hello, I underwent Gamma Knife in July 2010 and found relief through April 2011. I had a second round of Gamma Knife done this morning with hopes the relief will be much, much longer. The “worst” part of the procedure, in my opinion, is the local anesthetic injections that are made where the screws for the frame are attached to the head. I spent 6 hours at the hospital beginning with registration, then prep (vitals, IV, meds, and such), followed attachment of the frame and an MRI, which was followed by a time period of the doctors work up a plan for treatment based upon the MRI findings. Finally, 67 minutes of a radiation treatment focused on the area of the nerve to be attacked. No driving the rest of the day. Make sure you have a driver with you. Hope this information helps and if you need any more don’t hesitate to ask.