I am struggling on which to have, MVD or gamma knife. Can you give me your thoughts on gamma?
Thank you ;)
Angie
Angela, Gamma Knife has a 50% pain recurrence rate after three years, with an initial success rate against typical TN of about 70-85% (depending on the sources you read). MVD is 90% effective as a first procedure against typical TN, and about 70% of all MVD patients have pain relief for at least 12 years. If you have a choice, I'd strongly recommend MVD over Gamma Knife.
Regards, Red
Angie
I struggled with the same thing, and I agree with Red about the statistics, but I don't know that I agree that everyone should jump right into MVD when there are other great options available. I think it depends on the level of pain that you are having and how old you are etc. and just what you are willing to go through at the point of life you are in. For me, my pain was bad but I was handling it - it was the drugs that I could not handle anymore. I was so tired of feeling crappy and like I was in a haze. But, I wasn't at the point of wanting to go through the MVD surgery - it is a big surgery. For me - the gamma knife was something that was much easier to go through and I didn't see what I had to lose - if it was successful than great, but I know that the MVD is probably somewhere in my future. I have had TN since I was in my 30's though, and I am expecting to live a long life and want to do that pain free. I researched it all and the only thing that concerned me is that if I did the gamma knife, was it going to make other options less effective in the future. And the answer is yes - that is possible, but the chance of the MVD being less effective in the future is very small. I am very happy with the results of the gamma knife - even if it gets me another year of feeling the way I feel now, I will be happy that I was able to prolong having that big surgery, which really scares me. I think that it is important to know too, that the success rates given for gamma knife being successful usually refer to being able to reduce your medication (not necessarily being completely drug free) I think it is important to find a good neurologist and talk to several. I had the luxury of being a RN and having a husband who is a physician, so I have access to a lot of inside knowledge of good doctors and facilities etc. It was amazing to me going through this process that every neurologist has their "favorite procedure" for TN - so many different opinions out there from different neurologists/surgeons on what is best. The best thing you can do is do your homework - get a few opinions from reputable sources and make an informed decision that is right for you.
Angie, you stated that "the chance of the MVD being less effective in the future is very small" after Gamma Knife. I've spoken with a number of neurosurgeons who would not share that observation, and to one or two who consider Gamma Knife "barbaric" as a procedure. Can you provide any published reference that addresses this question in depth? This question is worth exploring from authoritative sources, I think, to get beyond personal opinions and into a realm where objective evidence provides all of us some guidance.
Beyond that, I would agree that most surgeons tell patients that it is wisest and in the best interests of the patient that pain be controlled by medication "if possible or while possible". There is progression in this class of disorders, for a large proportion of the overall patient population. So finding that borderline at which surgery becomes a necessary alternative is likewise an issue.
I've spoken with patients who have managed TN pain for 20 years on a stable dose of one of the anti-convulsive meds. But I've also spoken with patients for whom none of the meds worked without disabling side effects. Those in the latter category are often strongly motivated toward surgery. In their cases, the challenge becomes one of deciding which of the surgical procedures offers that particular patient the most likely prospect of pain control for prolonged periods -- either as a single procedure or as one that is periodically repeated. I don't think medical science has reached a point yet at which it is possible to make that kind of prediction with much accuracy.
Regards and best -- and thanks for your participation.
Red
I do not have any "published reference" in my possession, I am going by what I was told by two separate neurosurgeons that I spoke with when I was trying to find an alternative to the drugs I was on. I was given a real statistic instead of "small" but I cannot remember what it was, but to me it was "small" I have been in medicine for 20 years and have dealt with a lot of different diseases and surgical issues and have never experienced such a wide variety of recommendations by different doctors practicing the same type of medicine. Each neurosurgeon I saw recommended MVD as their first choice option and then each had a completely different "favorite" second choice option as number 2 - and some never even told me of certain options - like they didn't even exist. It makes it difficult to figure out as the patient what would be best for you. I think you have to find a doctor that you trust and do your research - but it is good for everyone to know that they have options. I am sure that some people would consider MVD to be "barbaric" as a procedure as well. I do not find anything that saves lives barbaric - gamma knife saves lives every day - maybe not in TN but certainly in other disease processes. I did not find it barbaric - I found it quick, easy, nearly painless and very effective.
Richard A. "Red" Lawhern said:
Angie, you stated that "the chance of the MVD being less effective in the future is very small" after Gamma Knife. I've spoken with a number of neurosurgeons who would not share that observation, and to one or two who consider Gamma Knife "barbaric" as a procedure. Can you provide any published reference that addresses this question in depth? This question is worth exploring from authoritative sources, I think, to get beyond personal opinions and into a realm where objective evidence provides all of us some guidance.
Beyond that, I would agree that most surgeons tell patients that it is wisest and in the best interests of the patient that pain be controlled by medication "if possible or while possible". There is progression in this class of disorders, for a large proportion of the overall patient population. So finding that borderline at which surgery becomes a necessary alternative is likewise an issue.
I've spoken with patients who have managed TN pain for 20 years on a stable dose of one of the anti-convulsive meds. But I've also spoken with patients for whom none of the meds worked without disabling side effects. Those in the latter category are often strongly motivated toward surgery. In their cases, the challenge becomes one of deciding which of the surgical procedures offers that particular patient the most likely prospect of pain control for prolonged periods -- either as a single procedure or as one that is periodically repeated. I don't think medical science has reached a point yet at which it is possible to make that kind of prediction with much accuracy.
Regards and best -- and thanks for your participation.
Red
Angie, I didn't mean to pick on you. My apology if I came across that way.
I concur completely that there is tremendous variability in medical opinions about trigeminal neuropathic pain, between practitioners. The pain community among medical practitioners is seriously struggling with treatment standards in bodies such as the International Association for the Study of Pain (IASP). In many areas, there just hasn't been consistent medical evidence on which to found practice standards.
Gamma Knife does have a place to play in medicine, particularly for inoperable brain tumor, Schwanoma and AVM. But I've talked with a couple of neurosurgeons who have attempted MVD following Gamma Knife, and found that the earlier procedure appeared to have caused extensive adhesions and arachnoiditis. So again, experience appears to vary between practitioners. What is not in doubt, however, is that the practice standard published by the International Association of Radio Surgery states that about half of all Gamma Knife patients have recurring pain within three years. And there is a generally accepted limit to the amount of radiation exposure which physicians are willing to deliver to the brain by any combination of procedures (if I'm recalling correctly from memory, the life limit is two GK procedures). So each patient will have to draw their own conclusions about the role which GK might have.
Regards and best,
Red
I am one of those that the pain returned three years later. Surgery was done 2-29-08 and pain returned 5-11. I was never completely pain free. I was just free of the intense pain. I am content with the meds I am taking for pain control. I'm not comfortable with the amount of radiation exposure and the damage that can be done to surrounding tissue. So for me. .no more GKRS.
this is Jeanine - not angie - that's ok - I didn't feel you were picking on me. I agree with you about the pain recurring pain issue and I know that standard is 3 years like you said. It is a tough call to make because when you are in your 30's or early 40's and looking at a possible good 40 years of pain to come - you want to know what options you have and what is going to get you through life the longest being out of pain - it is a scary thing to think about. I am fairly sure that for MVD surgery, statistically the second time around is less effective as well - is that what you have found in your research??? And I do know as well that you can only do gamma knife twice, like you said. I don't know that I would do it a second time, because I want my next procedure to have the best chances of success, which I am sure will be MVD. I am sure when the time comes, I will have the MVD as well. I just wanted to postpone that as long as possible. It is tough when you have significant symptoms that require enough medication to make you feel like crap all the time. But, it was also a tough question - was it really that bad that I needed my skull cut into and my brain messed with - I didn't feel ready for that major surgery and major recovery, but I still want to function like a normal human.
Richard A. "Red" Lawhern said:
Angie, I didn't mean to pick on you. My apology if I came across that way.
I concur completely that there is tremendous variability in medical opinions about trigeminal neuropathic pain, between practitioners. The pain community among medical practitioners is seriously struggling with treatment standards in bodies such as the International Association for the Study of Pain (IASP). In many areas, there just hasn't been consistent medical evidence on which to found practice standards.
Gamma Knife does have a place to play in medicine, particularly for inoperable brain tumor, Schwanoma and AVM. But I've talked with a couple of neurosurgeons who have attempted MVD following Gamma Knife, and found that the earlier procedure appeared to have caused extensive adhesions and arachnoiditis. So again, experience appears to vary between practitioners. What is not in doubt, however, is that the practice standard published by the International Association of Radio Surgery states that about half of all Gamma Knife patients have recurring pain within three years. And there is a generally accepted limit to the amount of radiation exposure which physicians are willing to deliver to the brain by any combination of procedures (if I'm recalling correctly from memory, the life limit is two GK procedures). So each patient will have to draw their own conclusions about the role which GK might have.
Regards and best,
Red
I believe your impressions of success rates with MVD are correct. A second procedure has somewhat reduced chances of a positive outcome than the first. But "reduced" shouldn't be taken out of context. In the hands of an experienced neurosurgical team, MVD is successful against Type I TN over 90% of the time on the first time through (in some teams, 95% of the time). RF Rhizotomy also does pretty well -- better than Gamma Knife, as a matter of fact. And up to a point, Rhizotomy can be repeated multiple times.
One perhaps fine distinction that I still try to preserve: MVD doesn't actually touch your brain, though the incision goes through the mastoid bone to provide physical access to the brain stem below the skull bone, and the blood-brain barrier is penetrated in the process. It's not a trivial operation, but strictly speaking it isn't brain surgery and doesn't have NEARLY the post-op risk levels. Gamma Knife, on the other hand, passes controlled levels of radiation through large sectors of your brain. That's one reason why I have always had strong reservations about the mis-use of the term "non-invasive" with respect to the GK procedure.
I wish you well (and apologize for the name transposition).
Regards, Red
Considering the meninges are violated during MVD, most neurosurgeons would likely consider it "brain surgery" and the risks would include things like stroke, meningitis, csf leak, pseudomeningocoele. Even though the risks of those things are small - they exist and are scary. Most people these days are going to opt for the most minimally invasive procedure - just like someone would probably opt for a stent instead of having open heart surgery if it is available to them and can get the job done. From seeing many things happen when it comes to the brain during my nursing career - if I can prolong having my skull cut into with a little circular saw and reduce my pain at the same time - it sounds more appealing to me.
Richard A. "Red" Lawhern said:
I believe your impressions of success rates with MVD are correct. A second procedure has somewhat reduced chances of a positive outcome than the first. But "reduced" shouldn't be taken out of context. In the hands of an experienced neurosurgical team, MVD is successful against Type I TN over 90% of the time on the first time through (in some teams, 95% of the time). RF Rhizotomy also does pretty well -- better than Gamma Knife, as a matter of fact. And up to a point, Rhizotomy can be repeated multiple times.
One perhaps fine distinction that I still try to preserve: MVD doesn't actually touch your brain, though the incision goes through the mastoid bone to provide physical access to the brain stem below the skull bone, and the blood-brain barrier is penetrated in the process. It's not a trivial operation, but strictly speaking it isn't brain surgery and doesn't have NEARLY the post-op risk levels. Gamma Knife, on the other hand, passes controlled levels of radiation through large sectors of your brain. That's one reason why I have always had strong reservations about the mis-use of the term "non-invasive" with respect to the GK procedure.
I wish you well (and apologize for the name transposition).
Regards, Red
wow, I seemed to miss the updates here. I am 2.5 months in and starting to feel a burning sensation and am very, very tired all the time (this is recent), almost as if I am finally feeling the side affects of the neurotin
Hi I suffer with constant neuropathic pain on the left side of my face. I have had it for 7 years now. I think I have type 2 . I am considering Gamma Knife but I know the success rate is not as good for type 2 . Do you have type 2 or classic TN ? Any reply would be greatly appreciated.
Jeffrey
I don't think it was every determined 100% that I have either. I have classic symptoms, but I also have type 2 symptoms, so my doctor never said for sure that I have one or the other. I am sure this doesn't help you much. If you have any other questions about it - I would be happy to answer whatever I can for you.
JEFFREY AUDETTE said:
Hi I suffer with constant neuropathic pain on the left side of my face. I have had it for 7 years now. I think I have type 2 . I am considering Gamma Knife but I know the success rate is not as good for type 2 . Do you have type 2 or classic TN ? Any reply would be greatly appreciated.
Wow! What a vigorous discussion here. I am new to the site and had GK 10/19/2010. I had out-patient GK surgery at Hoag Hospital Presbyterian Neurosciences Pavilion in Newport Beach California. I also am very happy I did it.
They use GK there for brain tumors and other indications as well as Trigeminal Neuralgia. The procedure uses a great multidisciplinary team and I had a nurse assigned to me from start to finish. An anesthesiologist completely put me out momentarily as the neurosurgeon attached the frame to my skull in 4 places. I then had a CAT scan (rather than an MRI with a medium put in via a spinal tap b/4 the CAT. The CAT was sent via computer to the programming neurosurgeon, radiation physicist and radiation oncologist who planned my 40 minute program to take place within the Leksell GK "Perfexion" machine.
It was done efficiently and precicely. I was always awake and got to pick the music they played as the focused radiationtook away my terrible pain in V1 and V2. ( I have a stainless steel implant in one of my ears from a hearing problem in the 1980's and so I cannot have MRIs, thus the CAT scan. )
I would do this again in a heartbeat as it gave me back my life to live normally!! I take no pain killers. The procedure was done by one of the best Gamma Knife teams in the United States, as far as I am concerned. Trudy
Hi Trudy I am happy for your GK turned out so well. Did you have type 1 or constant pain in your face ?
I have very persistent pins needles sensations in my left cheek as well as my left temple. Some days the pain moves up and down the side of my head. However it is always there , aching or intense pins needles feeling. I have always hoped that someday it would go away. After 7 years though it is clear to me that it will never stop. I do have a few days or even a couple weeks of only mild discomfort, but the intense pain always returns.
I am now considering having invasive treatment , I am just not sure which one is best for me
TLorain said:
Wow! What a vigorous discussion here. I am new to the site and had GK 10/19/2010. I had out-patient GK surgery at Hoag Hospital Presbyterian Neurosciences Pavilion in Newport Beach California. I also am very happy I did it.
They use GK there for brain tumors and other indications as well as Trigeminal Neuralgia. The procedure uses a great multidisciplinary team and I had a nurse assigned to me from start to finish. An anesthesiologist completely put me out momentarily as the neurosurgeon attached the frame to my skull in 4 places. I then had a CAT scan (rather than an MRI with a medium put in via a spinal tap b/4 the CAT. The CAT was sent via computer to the programming neurosurgeon, radiation physicist and radiation oncologist who planned my 40 minute program to take place within the Leksell GK "Perfexion" machine.
It was done efficiently and precicely. I was always awake and got to pick the music they played as the focused radiationtook away my terrible pain in V1 and V2. ( I have a stainless steel implant in one of my ears from a hearing problem in the 1980's and so I cannot have MRIs, thus the CAT scan. )
I would do this again in a heartbeat as it gave me back my life to live normally!! I take no pain killers. The procedure was done by one of the best Gamma Knife teams in the United States, as far as I am concerned. Trudy
Thank you Jeanine for your reply, how are you feeling these days ?
jeanine said:
Jeffrey
I don't think it was every determined 100% that I have either. I have classic symptoms, but I also have type 2 symptoms, so my doctor never said for sure that I have one or the other. I am sure this doesn't help you much. If you have any other questions about it - I would be happy to answer whatever I can for you.
JEFFREY AUDETTE said:Hi I suffer with constant neuropathic pain on the left side of my face. I have had it for 7 years now. I think I have type 2 . I am considering Gamma Knife but I know the success rate is not as good for type 2 . Do you have type 2 or classic TN ? Any reply would be greatly appreciated.
Hi Jeffrey- You asked if I had Type 1 or Type 2 TN. It was classic Type 1 for which the Gamma was effective. My neurologist and neurosurgeon did not even discuss Type 2 with me. Maybe it was because the stop in your tracks hot poker jabbing pain was so typical of Type 1. I did have to fail 3 medications b/4 the neurologist would refer to the neurosurgeon. In the end, you have to be your own advocate and do what is best for you. Gamma done well, deadened my pain. Trudy
Jeffrey
I am much better than I was - before gamma knife I was on 800mg Tegretol that was controlling the pain, although I was still having occasional stabbing pains in the side of the face. Now, I am on 200mg and I cannot say that I am pain free, but the pain I have is very mild - I just know it is there from time to time, but nothing like I was having. I am afraid to go off completely, although I am thinking of trying it again. I just hated being on so much medication - it made me forgetful and stupid as I referred to it - but just not myself and very tired. So, I would say that I feel good and I am glad that I had it done. I was not ready to do the big MVD and wanted another alternative, so that is why I tried it. If I had to classify my type of pain, I would say that I had more type 2 symptoms that classic - dull toothache pain, face pain etc. I did not have stabbing pains all the time. I know success rates are less with type 2, and I don't think they could say for sure what type I have - but compared to the other options - this was best for me and very glad I did it. Any other questions - I am here.
Thank You Jeanine
jeanine said:
Jeffrey
I am much better than I was - before gamma knife I was on 800mg Tegretol that was controlling the pain, although I was still having occasional stabbing pains in the side of the face. Now, I am on 200mg and I cannot say that I am pain free, but the pain I have is very mild - I just know it is there from time to time, but nothing like I was having. I am afraid to go off completely, although I am thinking of trying it again. I just hated being on so much medication - it made me forgetful and stupid as I referred to it - but just not myself and very tired. So, I would say that I feel good and I am glad that I had it done. I was not ready to do the big MVD and wanted another alternative, so that is why I tried it. If I had to classify my type of pain, I would say that I had more type 2 symptoms that classic - dull toothache pain, face pain etc. I did not have stabbing pains all the time. I know success rates are less with type 2, and I don't think they could say for sure what type I have - but compared to the other options - this was best for me and very glad I did it. Any other questions - I am here.
I am interested to know how long it took for you to see results?
TLorain said:
Wow! What a vigorous discussion here. I am new to the site and had GK 10/19/2010. I had out-patient GK surgery at Hoag Hospital Presbyterian Neurosciences Pavilion in Newport Beach California. I also am very happy I did it.
They use GK there for brain tumors and other indications as well as Trigeminal Neuralgia. The procedure uses a great multidisciplinary team and I had a nurse assigned to me from start to finish. An anesthesiologist completely put me out momentarily as the neurosurgeon attached the frame to my skull in 4 places. I then had a CAT scan (rather than an MRI with a medium put in via a spinal tap b/4 the CAT. The CAT was sent via computer to the programming neurosurgeon, radiation physicist and radiation oncologist who planned my 40 minute program to take place within the Leksell GK "Perfexion" machine.
It was done efficiently and precicely. I was always awake and got to pick the music they played as the focused radiationtook away my terrible pain in V1 and V2. ( I have a stainless steel implant in one of my ears from a hearing problem in the 1980's and so I cannot have MRIs, thus the CAT scan. )
I would do this again in a heartbeat as it gave me back my life to live normally!! I take no pain killers. The procedure was done by one of the best Gamma Knife teams in the United States, as far as I am concerned. Trudy