I just had my third opinion today from yet another neurologist and I am trying to decide what type of surgical intervention I want to go through so I can try to come off my Tegretol - which I hate. Has anyone had the gamma knife or balloon? Those are the two I am considering right now - even though MVD seems to be recommended by all three - I just do not think I am ready for that.
Please take time to read the Face Pain Info tab on the menu bar above. All of the surgical alternatives are described, including their likelihood of success and persistence. MVD is recommended for good reason: it is the "gold standard" for successful outcomes, against which all others are compared. Gamma Knife, on the other hand, doesn't have nearly the statistics of initial success and it leaves so much scar tissue that any re-operation is much less likely to succeed in correcting a return of the pain.
I had GKRS done in 2-08. What would you like to know? Min
Min - thanks for responding - was Gamma Knife successful for you and did they tell you that if you had that done and it did not work for you that doing another type of procedure later would be less successful?
Thank you for the information - I will read it thoroughly. I was told that if the gamma knife could be repeated one more time and that if that failed in the future, I could still do the MVD. I am only 40 and have been dealing with this for about 4 years already. I am afraid that I will exhaust all options early and then later in life be left with nothing to try. I do not seem to be in as much pain as a lot of people on this site and maybe I should just continue on the Tegretol as much as I hate it.
Richard A. “Red” Lawhern said:
Please take time to read the Face Pain Info tab on the menu bar above. All of the surgical alternatives are described, including their likelihood of success and persistence. MVD is recommended for good reason: it is the "gold standard" for successful outcomes, against which all others are compared. Gamma Knife, on the other hand, doesn't have nearly the statistics of initial success and it leaves so much scar tissue that any re-operation is much less likely to succeed in correcting a return of the pain.
Regards and best,
Red Lawhern, Ph.D.,
Resident Research Analyst, LwTN
In some ways yes it was a success. I had very very bad intense pain at the time I decided to have it done. I did not want to go on the Tegretol, so my neuro sent me to a neurosurgeon. He told me that I was not a candidate for MVD and that I had lost sensation in my 7th and 8th cranial nerves. He also told me that he was pretty sure that I have ATN. I asked him if there was anything he could do for me, and he explained the Gamma process and that he didn’t feel good about the outcome and that it can also cause numbness and tingling sensations and that can be very annoying and that it would be irreversible. I told him that even if he could cut the pain in half the procedure would be worth it. The average is 3 to 5 yrs. for people with TN. After I had the procedure done, I was able to ween off of the gabapentin within a week. I still had the jaw pain somewhat but tolerable for three years. The jaw pain acted up in March of this year and my GP gave me naproxen 500 and that worked. Then in May of this year the intense pain started to come back in my eye tooth. I went to the neuro and he put me on Tegretol, I am currently taking 800 mg and feel the pain is controlled. I do not have any regrets as my pain is still cut in half, as compared to when I had the procedure done. Peace, Min
jeanine said:
Min - thanks for responding - was Gamma Knife successful for you and did they tell you that if you had that done and it did not work for you that doing another type of procedure later would be less successful?
Jeannie, You have a tough decision to make I can relate since I just went ,thru the process and was operated on May 17th.
I was stunned when my Dr said he wanted to cut vs gamma knife. I was not ready to hear I needed brain surgery, I sought different opinions,but all said cut. . If -3- Ds are all saying cut, you might want to give that significant weight in your process. Pick your Dr and do your research and when you are ready you will make the right decision.
Good luck,
J Parker
Jerry
I know that they all say cut because that surgery has the best success rate, but I feel that I am at a point that I would rather try something else first. I am not in agonizing pain every day all day like a lot of people. I was in horrible pain like a year and a half ago and at that point I probably would have been willing to make it stop. The Tegretol is working but I am only on 400 mg right now because when I go above that I feel like I am on drugs - the 400 makes me tired and forgetful as it is. But on the 400mg I pretty much feel like I need to get to the dentist - today I feel like I have a bad cavity, but I function in life. I just want to go off the drugs but really don't want brain surgery and read so many people that have it and then it fails. I don't want to go through that for nothing - I feel I could go through gamma knife and have it fail and be ok with that. The only thing I am concerned about is the other procedures - the balloon or gamma knife ruining success of the surgery one day when I really might need it.
Jerry Parker said:
Jeannie, You have a tough decision to make I can relate since I just went ,thru the process and was operated on May 17th.
I was stunned when my Dr said he wanted to cut vs gamma knife. I was not ready to hear I needed brain surgery, I sought different opinions,but all said cut. . If -3- Ds are all saying cut, you might want to give that significant weight in your process. Pick your Dr and do your research and when you are ready you will make the right decision.
Good luck,
J Parker
Also - thank you so much for taking the time to respond to me - finding this site has been great!
jeanine said:
Jerry
I know that they all say cut because that surgery has the best success rate, but I feel that I am at a point that I would rather try something else first. I am not in agonizing pain every day all day like a lot of people. I was in horrible pain like a year and a half ago and at that point I probably would have been willing to make it stop. The Tegretol is working but I am only on 400 mg right now because when I go above that I feel like I am on drugs - the 400 makes me tired and forgetful as it is. But on the 400mg I pretty much feel like I need to get to the dentist - today I feel like I have a bad cavity, but I function in life. I just want to go off the drugs but really don't want brain surgery and read so many people that have it and then it fails. I don't want to go through that for nothing - I feel I could go through gamma knife and have it fail and be ok with that. The only thing I am concerned about is the other procedures - the balloon or gamma knife ruining success of the surgery one day when I really might need it.
Jerry Parker said:Jeannie, You have a tough decision to make I can relate since I just went ,thru the process and was operated on May 17th.
I was stunned when my Dr said he wanted to cut vs gamma knife. I was not ready to hear I needed brain surgery, I sought different opinions,but all said cut. . If -3- Ds are all saying cut, you might want to give that significant weight in your process. Pick your Dr and do your research and when you are ready you will make the right decision.
Good luck,
J Parker
Jeanne, Jerry's advice to do your research is very sound. If I may add a note to his: if you feel that you are able to function with the medication you're on at present, then one of your serious options is to continue on that medication or increase your dose if needed, within the limits of your tolerance for side effects.
Where it comes to "trying something [surgical in nature] first [before resorting to MVD", I must gently and respectfully caution you that the chances of getting a good outcome on a second or subsequent surgery is lower than on the first surgery, for just about ALL of the procedures now employed. This reality effectively places a premium on selecting the procedure which is most likely to be successful and lasting, as the first one to be used. Gamma Knife is advertised as "non-invasive." But this is true only in the sense that no incision is made for the procedure. In some ways it can be even MORE invasive in the distribution of scarring and lesions that GK creates around the target zone of the radiation beam. Cyber knife is even less precise. Neurosurgeons I've talked with have related that when they did an MVD following GK, they found "a mess" in the zone around the target of the previous GK procedure. Often that "mess" interfered with finding and correcting nerve compressions that the GK failed to neutralize on the first try.
There are no one-size-fits-all solutions for this disorder -- and none are without risks of some sort. Your research can give you perspective on what the risks are, and how to minimize them with appropriate selection of the surgical team based on their performance, training, and past results with other patients.
I wish you well in a decision that always involves uncertainty.
Red
Thank you so much for all your input - I do appreciate you taking the time! I called the neurosurgeon yesterday to ask a few more questions, he did tell me again that whatever I chose first, would be the most successful, not matter what I chose and also what you said that the second one's chance of success does go down.
He did not agree that a great deal of scar tissue builds up and has done many successful MVD after Gamma Knife. I am leaning towards trying it once, since I am not in tremendous pain. But, it is a lot to think about - I will continue to research and just increase my Tegretol for now. Thanks again!
Richard A. "Red" Lawhern said:
Jeanne, Jerry's advice to do your research is very sound. If I may add a note to his: if you feel that you are able to function with the medication you're on at present, then one of your serious options is to continue on that medication or increase your dose if needed, within the limits of your tolerance for side effects.
Where it comes to "trying something [surgical in nature] first [before resorting to MVD", I must gently and respectfully caution you that the chances of getting a good outcome on a second or subsequent surgery is lower than on the first surgery, for just about ALL of the procedures now employed. This reality effectively places a premium on selecting the procedure which is most likely to be successful and lasting, as the first one to be used. Gamma Knife is advertised as "non-invasive." But this is true only in the sense that no incision is made for the procedure. In some ways it can be even MORE invasive in the distribution of scarring and lesions that GK creates around the target zone of the radiation beam. Cyber knife is even less precise. Neurosurgeons I've talked with have related that when they did an MVD following GK, they found "a mess" in the zone around the target of the previous GK procedure. Often that "mess" interfered with finding and correcting nerve compressions that the GK failed to neutralize on the first try.
There are no one-size-fits-all solutions for this disorder -- and none are without risks of some sort. Your research can give you perspective on what the risks are, and how to minimize them with appropriate selection of the surgical team based on their performance, training, and past results with other patients.
I wish you well in a decision that always involves uncertainty.
Red
Hi Jeanine,
I am curious how your case turned out - I am in the same boat you were in when you posted this. I am 33 and have had TN for 7 years - the first 4 years I managed pain with acupuncture and chinese herbs, then it went into remission for 2+ years. It came back with a vengance in Feb 2011 and I finally went on Trileptal in Sept 2011. I am considering Gamma Knife or MVD now primarily because I want to have a child and I cannot risk pregnancy while on meds. I currently take 150 mg Trileptal per day, relatively small dose, but still can't accept that risk. How did Gamma Knife work for you? Curious about your experience.
jeanine said:
Thank you so much for all your input - I do appreciate you taking the time! I called the neurosurgeon yesterday to ask a few more questions, he did tell me again that whatever I chose first, would be the most successful, not matter what I chose and also what you said that the second one's chance of success does go down.
He did not agree that a great deal of scar tissue builds up and has done many successful MVD after Gamma Knife. I am leaning towards trying it once, since I am not in tremendous pain. But, it is a lot to think about - I will continue to research and just increase my Tegretol for now. Thanks again!
Richard A. "Red" Lawhern said:
Jeanne, Jerry's advice to do your research is very sound. If I may add a note to his: if you feel that you are able to function with the medication you're on at present, then one of your serious options is to continue on that medication or increase your dose if needed, within the limits of your tolerance for side effects.
Where it comes to "trying something [surgical in nature] first [before resorting to MVD", I must gently and respectfully caution you that the chances of getting a good outcome on a second or subsequent surgery is lower than on the first surgery, for just about ALL of the procedures now employed. This reality effectively places a premium on selecting the procedure which is most likely to be successful and lasting, as the first one to be used. Gamma Knife is advertised as "non-invasive." But this is true only in the sense that no incision is made for the procedure. In some ways it can be even MORE invasive in the distribution of scarring and lesions that GK creates around the target zone of the radiation beam. Cyber knife is even less precise. Neurosurgeons I've talked with have related that when they did an MVD following GK, they found "a mess" in the zone around the target of the previous GK procedure. Often that "mess" interfered with finding and correcting nerve compressions that the GK failed to neutralize on the first try.
There are no one-size-fits-all solutions for this disorder -- and none are without risks of some sort. Your research can give you perspective on what the risks are, and how to minimize them with appropriate selection of the surgical team based on their performance, training, and past results with other patients.
I wish you well in a decision that always involves uncertainty.
Red
There is a sort of metric which doctors use when they are rating other doctors, or surgical procedures. The Newsweek "Best Doctors in America" list uses this question or one like it: "If a close relative of yours was considering this procedure, whom would you recommend as the most qualified physician to deliver the procedure? Likewise, if a close relative needed to choose between alternative procedures, which one would you recommend?"
Jeanine, if you were a member of my family, I would say that if you are considered to be a candidate for MVD, then I would strongly recommend that you have one -- and that you do NOT have a Gamma Knife or Cyber Knife procedure. With either of the radiosurgical procedures, the odds are greater than 50/50 that you'll have the same or worse pain AGAIN within three years. MVD may have a longer recovery period, and it is not without risks, but when delivered by an experienced surgical team that does a lot of them, it has significantly better success rates and much longer periods pain free.
Just my two Red Cents, for whatever they're worth.
Regards and best,
Red
Danielle,
I don't know if I am replying to you because it looks like I already did, but I haven't yet. I am happy to share my experience with you regarding gamma knife etc. It sounds like you are like me - doing ok on medication (I am on Tegretol) but not wanting to be on medication - you for different reasons than me. I totally understand your concern of going off of the meds during your pregnancy. I don't know if I would have done the same procedure if I was going to get pregnant or not - I was already done having my kids when I started having symptoms. All I can tell you is that, for me, MVD was a huge surgery with risks and a decent amount of downtime. And, for the point I was at, I did not feel like I wanted to undergo that type of surgery. But, I was not in your shoes either. Gamma Knife was a good alternative, I thought, for me to try and see how long I could reduce the pain and reduce the medication without major surgery. It was not a difficult procedure - it wasn't fun, but wasn't difficult. I was back to work in 2 days and feeling ok. My pain did not decrease until 2-3 months after the procedure. I wasn't able to come off of the medication completely (although sometimes I feel like I can and will probably try again soon) but I reduced it from 800mg a day to 200mg a day which is awesome because I feel normal. So, I don't know how much time you have to play around with seeing if the procedure works for you because of wanting to get pregnant etc. It takes several months to know if it worked or not and then if it doesn't work for you, then I guess you would be a square one again. I think time is a big factor for you and I guess you just have to think about if you are willing to go and have the time to go through a procedure that has less chance of success than the MVD. For me, time wasn't a factor - if it was, I may have chosen the MVD instead. I don't know if I helped you in any way - if can answer any other questions about the Gamma Knife - let me know.
I think Red above meant to respond to you and not to me also.
Richard A. "Red" Lawhern said:
There is a sort of metric which doctors use when they are rating other doctors, or surgical procedures. The Newsweek "Best Doctors in America" list uses this question or one like it: "If a close relative of yours was considering this procedure, whom would you recommend as the most qualified physician to deliver the procedure? Likewise, if a close relative needed to choose between alternative procedures, which one would you recommend?"
Jeanine, if you were a member of my family, I would say that if you are considered to be a candidate for MVD, then I would strongly recommend that you have one -- and that you do NOT have a Gamma Knife or Cyber Knife procedure. With either of the radiosurgical procedures, the odds are greater than 50/50 that you'll have the same or worse pain AGAIN within three years. MVD may have a longer recovery period, and it is not without risks, but when delivered by an experienced surgical team that does a lot of them, it has significantly better success rates and much longer periods pain free.
Just my two Red Cents, for whatever they're worth.
Regards and best,
Red