I have had TN2 for about 8 yrs following a very bad car accident. I was hit head on and also sideways by the car behind me.
It had and has been difficult for me to even articulate to the Docs my pains as I also have a brain injury. So needless to say I too have seen many Docs and along the way have received many diagnoses. Mostly headaches and TMJ.
The TN2 was just diagnosed a month ago. I have met with the Neurosurgeon twice and the GAMMA Radiosurgeon once. I am considering the GAMMA and I have a lot of trust in them but still confused because I see so much on the internet that it wont be helpful and possibly worse.
What have my fellow TN2ers done for surgical interventions if any? Thank you!
Thank you redbird, the neurosurgeon and radiosurgeon both pervform alot and treat alot of TN patients.
Still so much hesitation. I am the same as many others in the fact that I have much respect for Docs but cant help but think that if this was so difficult to diagnose and can be missed, certainly it will be difficult to treat.
Try to talk to others here that have had it done. I have not heard all that much good about the procedure, but on forums like this, most of the ones that get better don't post any more, and the ones that have problems do. Its hard to get a good grasp of the true value of the treatment. I wish they would do some sort of poll or something.
I don’t want to be discouraging, but from what I’ve read, if your initial pain is due to nerve damage, then any nerve-damaging procedure has the potential to make it worse. on the other hand, I have seen that some on this forum have had some improvement with gamma knife. I suggest you do a search for gamma knife on this site, & maybe the TNA site? and perhaps call Johns Hopkins (you don t have to make an appt- they have a free consult line). they have done a lot of work & research on classic TN 1, so perhaps it would be worth getting their input to just discuss your case on TN2. just an idea… I don’t want to counter anything your docs are saying, as I don’t know your specific case, & they do. but there is a lot of misinformation out there, even among the medical community. I wish you the best.
Thank you, yes I have seen so much skepticism regarding any surgical treatments for TN2. Good point as well that the ones that get better, well they get better and move on sometimes.
Peace...
redbird2448 said:
Try to talk to others here that have had it done. I have not heard all that much good about the procedure, but on forums like this, most of the ones that get better don't post any more, and the ones that have problems do. Its hard to get a good grasp of the true value of the treatment. I wish they would do some sort of poll or something.
Yes, you are correct that it is due to nerve damage and my thoughts were the same that why damage that nerve(s) more? They seem to think with sub-millimeter precision that it works, 70% of the time without side effects. I think I am not liking the risk/reward ratio here.
At any rate, Johns Hopkins and TNA sound like good places to start. I live outside of Detroit so there are many choices here and Cleveland Clinic is not far also.
Peace!!!
mrl said:
I don't want to be discouraging, but from what I've read, if your initial pain is due to nerve damage, then any nerve-damaging procedure has the potential to make it worse. on the other hand, I have seen that some on this forum have had some improvement with gamma knife. I suggest you do a search for gamma knife on this site, & maybe the TNA site? and perhaps call Johns Hopkins (you don t have to make an appt- they have a free consult line). they have done a lot of work & research on classic TN 1, so perhaps it would be worth getting their input to just discuss your case on TN2. just an idea... I don't want to counter anything your docs are saying, as I don't know your specific case, & they do. but there is a lot of misinformation out there, even among the medical community. I wish you the best.
Yes, I have a compound cream that I am not sure exactly what the ingredients are, but I use it when times are really tough and it does keep it calm a bit.
Do you use a cream? Script, OTC?
Sleopard41 said:
Moxie,
Yes, mine too...ugh, have you tried anything topical?
Yes, I have a compound cream, too. It has helped tremendously…I was very skeptical about it, as it feels SO deep and my gums hurt, too,but, it seems to sink in and get to work. I could have another series of blocks, but I think the cream works better. Glad you have one, too!
I think the cream works better than the blocks as well. We know those don't give long lasting relief and the major pain in the neck (haha) it is isn't really worth it!
Sleopard41 said:
Yes, I have a compound cream, too. It has helped tremendously...I was very skeptical about it, as it feels SO deep and my gums hurt, too,,but, it seems to sink in and get to work. I could have another series of blocks, but I think the cream works better. Glad you have one, too!
Agreed! The cream really was a game changer, for me, and I probably won’t pursue anything else invasive since it works so well…huge relief, both physically and mentally!
You nailed it too when it comes to getting relief, stress goes down which makes the symptoms subside a bit.
I think anything invasive is on the back burner at this time for me also. I need to know every single option before I let anybody go searching around in my brain.
Thank you so much for the information you provided to me. I am so sorry to hear that you had a terrible fall resulting in TN!
I agree thst the Docs just want to be helpful. In our situation though that the TN (damage to trigeminal nerve in the first place) was likely caused by these accidents, it just doesn't make sense to damage it further via the GAMMA procedure. Another thing I can not reconcile within myself is that the Radiosudgeon said the chances of side effects is 30%. She also said that generally the older patients (btw, I am 40) tend to do better with the surgery. So, with this information I just feel that it would not be best for me. It also may only last 3 yrs tops if at all. I have been dealing with it 8 yrs without the proper treatment so what is 60 more! Yes, I plan to live to 100! :-)
One side effect they mention is permanent numbness. If the GAMMA does not work and the pain is still there, isn't this combination considered Anesthesia Dolarosa? One of the most feared/untreatable med conditions? Ugh, too much to even think about! My family and friends really don't want me to have it done either. I know I am the one who has to make the final choice though.
Thank you Summer so much for the information. I look forward to your reply if you see this.
Peace always.......
Summer099 said:
Hi Moxie,
I've had TN2, actually TNP, since '99 due to trauma from a serious fall that was likened to a car accident. At any rate, I tried a percutaneous nerve stimulator which did not work for me but the technology has improved and it might be worth investigating.
As I have read what others have said in response to you, I must recall what the neurosurgeon told me which is: whatever you do, don't do the gamma knife or even the MVD, but particularly no destructive actions to the nerve. He felt that it would only make things worse, much worse for me. I have appreciated knowing this. My guess is, it would be also so for you.
It is my thinking and feeling that doctors want to help, so they offer what they know or the technology that they have. Because of this, I have done a lot of research and am keeping myself "sane" with a combination of meds, exercise, rest, etc. All the while praying and hoping for a cure . . .
Recently, I did find a cream available on the 'net that takes the pain down a notch. You can find out about it at gallixa.com. I have no stake in it, just thought you might want to check it out.
I had the gamma knife radiosurgery twice. The first time I had some gradual success for three months then NOTHING and back to square one. The second gamma did nothing. The pain continued to worsen and still gets worse every day. The pain meds sometimes give me an "edge" which is all I can hope for these days. The pain starts when my feet hit the ground in the morning and doesn't stop until I go to sleep at night. I'm praying for a miracle remission or some new nerve medication. I had one brain surgeon suggest that he cut me open again and check to see what is going on. I got the TN from the surgical removal of a brain tumor. Sorry I don't have good news. I'm just searching like the rest of us. Good luck, prayers and affirmations help.
I would be hesitant on the Gamma Knife, from everything I learned about it and in talking to and having a glycerine rhizotomy at Johns Hopkins, they weren't very encouraging in using it to treat ATN or TN2. It can take up to 6 months to work or see results, which I didn't like and if you are a candidate for an MVD, then it reduces the chance pretty significantly of having good results. I will suggest that you go on the Johns Hopkins site and watch the video by Dr. Lim, its about an hour long but he goes really into depth about the proceedures.
I will also say that if you have ATN, Hopkins most likely will refer you to Dr. Jeff Brown as they did me. Hopkins tried the rhizotomy to see if I got results and it did get rid of the lightning strikes, but didnt do squat for the ATN, therefore Hopkins sent me to Dr. Brown in NY because he specializes in ATN. He did my MVD and it was successful, not to mention I think he is great to talk to , my first appointment and consult was close to two hours. He may be someone you could discuss all this with, he really tries to help everyone. Just my two cents. Either way, let us know how you make out