I haven't had surgery yet. It is scheduled for March 4th. I've been in pain this time around, since Sept of last year. At first I was afraid - I mean, it is brain surgery...but now I am kind of looking forward to it. I want my life back. I haven't worked since this round began and my funds are dwindling. I want to get a job and be able to do something besides sit here without even talking, since that and anything to do with my hair, seems to be the worse things at the moment.
Thank you for your positve note. I think this pain, is something that haunts us all, even when it's long gone. I'm not sure that I'll ever be able to wash my hair, without being paranoid.
Domelover, hang in there. I was terrified too before my surgery but I would have done anything to get relief. For some reason, the gamma knife scared me more though. But my surgery was such a huge success. I have been pain free since October 4th. The two month recovery was tough. Still had headaches, dizziness, etc but that was all due to the surgery and completely resolved. It is so nice to wake up without being afraid of that pain. I knew my surgery was successful as soon as I woke up as I could touch my face and my forehead without the pain being there. I was afraid to do anything with my hair too. It hurt to wash it, brush it and heaven help me, the blow dryer was sheer torture. But, I would cry my way through it and keep going. Now, it is fine. Good luck to you and please let us know how your surgery turns out. Will be sending positive thoughts your way.
domelover said:
I haven’t had surgery yet. It is scheduled for March 4th. I’ve been in pain this time around, since Sept of last year. At first I was afraid - I mean, it is brain surgery…but now I am kind of looking forward to it. I want my life back. I haven’t worked since this round began and my funds are dwindling. I want to get a job and be able to do something besides sit here without even talking, since that and anything to do with my hair, seems to be the worse things at the moment.
Thank you for your positve note. I think this pain, is something that haunts us all, even when it’s long gone. I’m not sure that I’ll ever be able to wash my hair, without being paranoid.
There are so many more discussions of those who have had surgery. Some do wonderful with no side effects, others with side effects worth it. Others get mixed results and unfortunately some get worse. The worst outcome is a pain syndrome called AD, anethesia dolorosa, which is resistant to treatment. If your pain has been resistant to medication or side effects just from these medications leave you unable to function then surgery is the next option.
I wish you the very best. I am atypical and a neurosurgeon will not touch me. Sharon
I see several replies regarding surgery. I am not clear on what type you are getting. I saw a neurosurgeon recommended from this site at a teaching hospital in Tampa. I am ATN. He only does MVD for true TN, that is the stabbing electric-shock like pain. He does not do gamma knife or any of the other procedures. I went to see him because my neuro was recommending RF, radio-frequency for my ATN. In my case he looked directly at me and said I don't want to make you worse. The alternative procedures to MVD do not give permanent pain relief and are destructive. If you are true TN I hope your neurosurgeon is offering MVD. Even with MVD there are risks of permanent nerve injury. Please be sure your surgeon has discussed this with you. If I were true TN I would get MVD. No hesitation at all. The desire to end the pain and regain your life back is something I do hope you will be blogging after your surgery. Sharon
Hi...This is Eva. I read every day, but new at posting. I can just tell u my experience and all the research backing it up in the last 9 years.. The Gamma Knife destroyed my life. Rather then detangle the artery from the 5 cranial nerve...oops! They cut it. Leaving me with Anesthesia Dolorosia. 5 years later I had the motor cortex stim implanted. Which sometimes with a regimen of meds and cloths (soft baby diaper) pressed on the right side on my face may give me some relief. Problem with the MCS is that after a year I started having grand mal seizures. Medications were not helping. It was when the stim was firing in a different pattern. So much more. But as a first timer we will share as we go along. Just please, take heed, get your info and know that it has destroyed a lot more lives then mine. Enjoy the good days. I do. They are few but I revert back to my old personality and give myself and family some joy. God bless. Thanks for the site
Joya's highly destructive outcome from Gamma Knife surgery is thankfully a rare one. But another thing that many practitioners don't tell their radio surgery patients is that half of all successful Gamma Knife and Cyber Knife patients relapse into pain again within the first three years. I've heard personally from some neurosurgeons that some patients also display complex adhesions (called Arachnoiditis) after Gamma Knife, which make MVD more difficult as a second procedure.
If a relative of mine was considering Gamma Knife, I would be forced by what I know to say "don't go there unless you're not a candidate for MVD because of past medical problems".
Red, I did some traveling out of town to see some top neurosurgeons, one from this site and your opinion is the same opinion of a neurosurgeon I saw at a teaching hospital in Tampa. He only does MVD for true TN. It is a clinical exam and the question you are asked is do you have stabbing electric shock like pain. If you can answer yes, you are a candidate for MVD. He does not do all the other procedures as the long term outcome is not favorable and damage can occur. I am not a candidate for MVD, my neuro thought I should get RF but he looked directly at me and said he did not want to make me worse. Yes, even damage can occur with MVD. From my experience with more than 13 plus surgeries on my spine only 4 or 5 were successful and I was left with nerve injury. If a nerve is being compressed in the spine the same answer like true TN is electric shock like pain is happening. Our nerves behave quite similar to being compressed in my experience. Sharon
I would differ from your medical professional at Tampa, in only one particular, Sharon. RF Rhizotomy has a record of positive outcomes and pain relief that is almost as good as MVD in patients whose symptoms are dominated by type 1 (typical) TN pain. Papers published by John Tew MD and Jamal Taha MD about 15 years ago report a 90% initial success rate, with persistence of relief beyond seven years for about half of all those who have initial success. There are risks with RF Rhizotomy, and it shouldn't be used casually with ATN patients. But it definitely has a contribution to make in some patients.
Red, it is so hard going out to get help from so many doctors. They all have their own opinion. Maybe he was just trying to tell me being ATN it was not something to try on me. I read so many stories of success and no success, even getting worse with all of these procedures. I think most of us who suffer do want to have a procedure that will help us and believe there is something that can be done. I however have backed away from wanting anything invasive. I have to get another back surgery and then I am going to search for a surgeon that does PNS. I think that is my only option that is reversible if it doesn't help.
I sometimes wonder if all of us that are ATN are feeling almost like someone who gets AD after a failed procedure. I think AD is most likely more debilitating than ATN from all the discussions I have read.
Thank you for correcting the opinion I got. I would not want one sufferer that might benefit from something to not go through with it. I don't believe I have read very many discussions of TN sufferers getting RF. I see a lot gamma knife. Sharon
Hi, Sharon. I intended no downer for you. I "get" your feeling about similarities in emotions between AD and ATN. Both can be debilitating in that both are absolute bears to treat.
If you would like to read more discussions of RF Rhizotomy then run the term "ablation" in our search window at the top right. You'll get 670 pages of hits. Another hundred or so on "Rhizotomy". My own guess is that RF is probably the most commonly used procedure in TN, followed by MVD. But I haven't seen detailed statistics to verify my surmise. I've just read a lot of mail in 18 years.
Thank you Red. I get lost on all these pages of discussions. I get so many emails of all the discussions I have gone into I find it impossible to see if I want to reply to all of them!
I do like your Go in Peace and Power...you are on a beautiful spiritual path I find comforting. Sharon
Hi Gizmo, those are great questions and I would like answers to those questions as well. I call up and they say the same thing, oh, yes, they see TN patients... Its usually some young person who is just the receptionist and they don't know much or seem to really care. I don't want to make my insurance company mad and just keep making appts with a whole bunch of neurologists until I get it right, lol, but heck, I will if I have to..
What is CK? Red Lawhern posted some good info on RF being one of the better invasive procedures to try before MVD. Not sure about after. I am not a candidate for any of these procedures as I am ATN. I wish there was a magic bullet. If you have failed MVD and the pain returns sometimes it can be this nerve damage condition called AD. Sharon
So0o0Confused said:
to Jimmy Works... why did you have a CK the 2nd time and just not have another GK? im curious to know why you opted to the differend procedure as i am now looking into a CK to have done.
Thank you Don. I know this one. We all use 2 letter abbreviations that only some of us understand. I have a 3 letter one that is PNS for peripheral nerve stimulation...this is the treatment after I have my back surgery I am going to be looking in to for my ATN and atypical GN because none of these other invasive procedures have been offered to me. Sharon
To amplify: Cyber Knife is also a radiation procedure, but without the rigid head frame used with Gamma Knife. It is commonly used against tumors and Arterio Venous Malformations at various places in the body. The focus of energy with CK is not as good as with GK, with about twice to three times the overlap into adjacent tissues. Some patients find it more comfortable during the procedure. But like GK, Cyber Knife has lousy pain recurrence statistics. 50% of all successful patients will relapse within three years.
My GP Dr. yesterday shared with me some interesting information regarding PNS.His brother works with a pain management group and they have been using a PNS devise that was developed for back pain.They've had great success,but are working a a model specifically designed for T.N. and related face pain and also migraines and cluster headaches.It will not have the big separate battery pack and cluster of wiring like they use now.And they are going to get it all approved so that insurance will cover it.He is suppose to get me more information and i told him i would share it on this forum and the facebook PNS page.It sounds pretty exciting even though i can't have it because i have to have bi yearly MRI's to observe a AVM i have.These guys are in Dallas.That's all i know at present.
Yes,i had CK for my AVM.They melt a fitted plastic mask onto your face and bolt you to the table rather than the halo drilled into your skull.Gamma is better i think,more accurate and concentrated.Both are unpleasent.Im pretty claustraphobic,but both are walk in and walk out procedures.No pain,other than a bit with the Gamma halo attachment.Even though the Gamma Knife may not,probably will not last forever,i'm glad i did it.I had the procedure in mid July '13 and am still pain free with no meds and a life again.Each of us has to decide their own best course.MVD is best,if you can do it and have a great surgeon from what i have learned here.Between the 2 stereotactics,Gamma Knife with the latest greatest equiptment and talented neuro and staff is preferred IMO.
Richard A. "Red" Lawhern said:
To amplify: Cyber Knife is also a radiation procedure, but without the rigid head frame used with Gamma Knife. It is commonly used against tumors and Arterio Venous Malformations at various places in the body. The focus of energy with CK is not as good as with GK, with about twice to three times the overlap into adjacent tissues. Some patients find it more comfortable during the procedure. But like GK, Cyber Knife has lousy pain recurrence statistics. 50% of all successful patients will relapse within three years.
SoOoO......I see your question. Frankly, I didn't know enough to choose the GK. My surgeon just immediately said the CK was now available and didn't need the head frame. My returned pain was soooooo horrific I didn't care. I was literally scared by this pain. And I mean SCARED. Frankly, I just went with whatever he said. I asked him about not doing the GK again and he said the new machine was out now. I didn't question it I just went with what he said. I did ask him about the MVD and he wasn't in favor of it but he did do some. He said "sometimes we go in and find the nerve compressed by a vessel"....and he just shook his head "and sometimes we don't find anything". So I guess that's why he opts for the GK...and now the CK. So, to answer your question, I trusted him because the first GK gave me 10 yrs of perfect relief. I think I was one of the lucky few to get that kind of relief for so long. So, I expected the same out of the CK and maybe even better. That didn't work out. The CK did in fact eliminate the sudden lightning like jolts across my face. I would not be able to live with that. I can tell you that. The CK did eliminate it. BUT, it did a lot of nerve damage, which is to a pretty good extent is helped out with meds. I just live with the discomfort daily and go on. I'm not incapacitated. I just put up with all the junk: tingling, bees-like stuff, the crawling,etc etc. In short I traded the GIGANTIC lightning strikes for the lower grade constant pain and discomfort. THE FOLLOWING I DID NOT KNOW.... Red just posted something about the CK was not as precisely targeted like the GK. I did NOT know that. Knowing that now, I wish I had had GK for the 2nd treatment because I did so well with the first GK - no numbness, nothing. Just cured (for 10 yrs, that is) But my case was far better than many GK patients.
onfused said:
to Jimmy Works... why did you have a CK the 2nd time and just not have another GK? im curious to know why you opted to the differend procedure as i am now looking into a CK to have done.
Red, I did NOT know CK focus was not as good as GK. I do remember them taking me to see the CK machine and show it off a few days beforehand. I remember seeing the hole in some metal discs to demonstrate the different sizes of the beam. I recall thinking they did not look as small as I thought the beam was on the GK and I wondered if that might do more destruction than did the GK. But, I just trusted them all to know what they were doing. I wish now I had insisted on the GK for my 2nd treatment. I didn't know anything at the time. I was just going with whatever they said. I was one of the lucky few that got 10 yrs relief with GK, and no side affects at all -- none. But, whats done is done.
Richard A. "Red" Lawhern said:
To amplify: Cyber Knife is also a radiation procedure, but without the rigid head frame used with Gamma Knife. It is commonly used against tumors and Arterio Venous Malformations at various places in the body. The focus of energy with CK is not as good as with GK, with about twice to three times the overlap into adjacent tissues. Some patients find it more comfortable during the procedure. But like GK, Cyber Knife has lousy pain recurrence statistics. 50% of all successful patients will relapse within three years.