Laura... I think I am in over my head here. Having suffered with TN from the age of 9 to 16 before being diagnosed and then having had 3 different procedures which took away the pain for 53 of my next 54 years I have no knowledge of the drugs mentioned here. I continue to be at a loss as to why what worked for me doesn't work for everyone and feel badly that drugs seem to be a treatment of last resort for many. My first treatment at age 16 was an injection of 100% pure grain alcohol directly on to the trigeminal nerve and the procedure took about 20 minutes with more pain than anyone could imagine... but that worked for many years after... then a 2nd maybe 15 years later...which I am unsure of what they did...then a 3rd 20 years later which was basically an electrical frying of the nerves which was painless...took 15 minutes and has left me pain free since the early 90s... with no visible side effects and no noticeable sensation of nerve loss. I have to assume that my procedure is not for everyone but have to wonder why as all our bodies are the same and if you can fry my nerves why not every ones? In any case... for the little feedback I have rec'd since joining this site I think I am just pissing every one off and no one seems to either believe me or is interested in what worked for me. TN is a horrible affliction and I know what it does to people... I wish everyone the best of luck as they do what they can to deal with it and if anyone out there ever wants to know why I am pain free please contact me and I will track down the name of the procedure and pass it along. If not... then good luck to all ...
Eileen, ..... I wish I could be more specific but will tell you what I can and if there is any continued interest in my last procedure I will find out what it was called and specifically what it did and let you know.
The 1st one, which was an alcohol injection, only lasted 12 hours and I had to go through it again the next day ... take TN pain and double it so you may want to avoid that one.... the second one was back in 75 or 76 I think and I have no idea what they did...not even then... or if I did then I have forgotten. I may be able to track that down as well as that info must be in my medical history some where. The 3rd one...which is still working over 20 years later.... was very simple and very quick. I was admitted to Vancouver General at 4pm with the procedure scheduled for 10am the next day... rec'd a very light general anesthetic and remained conscious through the event. I can remember hearing a light buzzing sound and was told they were basically applying a laser type burn to my nerves and in a sense killing the ability of the nerves to transfer pain.. The result was that the left side my face felt frozen ( think dentist ) and still is today... but after only a month I had no sensation of it being frozen and suffer no side effects. I have had one or two weeks of light TN the past 20 years with maybe a 15 second burst at a time but other than that am 100% pain free. I am unsure if I have CTN or ATN as I am unaware of those terms from years past... My TN is and was always on the right side of my face... no headaches.. and my lower lip right side was a trigger point... does that help? Attacks would last 5 to 10 minutes and reoccur several times a day for maybe 2 or 3 months then the TN would go away for a few months before returning along the same old patterns. I did go on Tegratol and Dilentin before my 2nd procedure but they were useless and depressing...
How long have you had TN and how bad is it? .. Hope you are close to resolving the problem and let me know if you think you have any interest in my 3rd procedure... Surely every Neuro Dr out there must be aware of that choice ???
right side ...not left...must have been looking in a mirror...
Eileen said:
Uncle Al,what a super positive story! The three procedures you had worked,how good is that.......it quite lifts my heart!
Did you have the classic TN or atypical TN? I have atypical .....is it possible for you to be a bit more specific about the second and third procedures?
Pain management specialist have found that Injection of glycerol into the gasserian ganglion is a simple and effective treatment. Using a brief, intravenous anesthetic a needle is introduced into the nerve in the base of the skull and a small amount of glycerol injected. The treatment only takes a few minutes. 85% of patients achieve immediate pain relief and persisting numbness in the face is unusual and infection is rare. Recurrence rates are relatively high: about one-half will recur over 3 to 4 years. Reinjection may be performed, but glycerol injections become less effective after several are performed. There is of course a limit to how many times this procedure is effective so usually on finding success they move to Rhizotomny.
The advance procedure is called Rhizotomy. These days it is performed primarily by Pain management specialists (usually anesthesiologists with advanced training) Rather than grain alcohol they use other injectables including glycol and local anesthetics. They tend to try something temporary first to "test" the procedure. They also to RF ablation which is also temporary The ablated nerve grow back at about 1mm/year. Some centers are adding cones to the end of the ablated nerve The extreme version of the procedure is the Gamma Knife. It can be effective for type two as it only addresses pain, not the cause.
Well there you have it Uncle Al- thanks ModSupport for that detailed answer!
I am due to see the pain management team in February( NHS UK so quite long wait) and shall discuss the procedure with them.I have type 2 although I read somewhere here that type 2 could be a progression of Type 1 although I have never had the jolts of type 1 .Whatever type it is painful as we all know and an end to our pain is our goal…Cheers!
Well there you have it Uncle Al- thanks ModSupport for that detailed answer! I am due to see the pain management team in February( NHS UK so quite long wait) and shall discuss the procedure with them.I have type 2 although I read somewhere here that type 2 could be a progression of Type 1 although I have never had the jolts of type 1 .Whatever type it is painful as we all know and an end to our pain is our goal......Cheers!
Well there you have it Uncle Al- thanks ModSupport for that detailed answer! I am due to see the pain management team in February( NHS UK so quite long wait) and shall discuss the procedure with them.I have type 2 although I read somewhere here that type 2 could be a progression of Type 1 although I have never had the jolts of type 1 .Whatever type it is painful as we all know and an end to our pain is our goal......Cheers!
Eileen... time has a way of adjusting our memories so they fit what we think happened and not maybe what really happened so what Mod Support offered may well be what I had done but I can't stop thinking about the ' burning ' of the nerve so will see if I can find out for sure what my procedure was... all interesting for sure.... and my treatment has lasted over 20 years which this one doesn't ??.... Stay tuned...
Please do Uncle Al! I for one will be very interested .You have a very valid point in saying that your procedure lasted for twenty years…I won’t say no to that ( lol!)I will indeed stay tuned…
Quick mathematics lesson here so far as it relates to medical literature.
When they say it last for 5 years they mean that everyone with in "one standard deviation" lasts 5 years. That means only 68% lasts five years the others last either longer or shorter. Iiterally it means means one six will have the procedure last longer. and one in six last shorter. The only people who are considered are those for who the procedure "worked"
Its called the 68, 95, 99.7 rule. I can go into long explanation (its part of what I did for a living) but the fact is Al had a about 1 in 10 chance of it lasting as long as it did. (Depending on how you describe success)
The mathematics if you are interested:
If a data distribution is approximately normal then about 68 percent of the data values are within one standard deviation of the mean (mathematically, μ ± σ, where μ is the arithmetic mean), about 95 percent are within two standard deviations (μ ± 2σ), and about 99.7 percent lie within three standard deviations (μ ± 3σ ...
so humour this maths dunce, if MVD is stated at best say has an initial 90% success (depending on definition of success rate), put simply (if) how does standard deviation apply, or would it only apply to the recurrence rate?
I assume success in MVD rate means resolution of symptoms, not "we managed to remove a vessel"
ModSupport said:
Quick mathematics lesson here so far as it relates to medical literature.
When they say it last for 5 years they mean that everyone with in "one standard deviation" lasts 5 years. That means only 68% lasts five years the others last either longer or shorter. Iiterally it means means one six will have the procedure last longer. and one in six last shorter. The only people who are considered are those for who the procedure "worked"
Its called the 68, 95, 99.7 rule. I can go into long explanation (its part of what I did for a living) but the fact is Al had a about 1 in 10 chance of it lasting as long as it did. (Depending on how you describe success)
The mathematics if you are interested:
If a data distribution is approximately normal then about 68 percent of the data values are within one standard deviation of the mean (mathematically, μ ± σ, where μ is the arithmetic mean), about 95 percent are within two standard deviations (μ ± 2σ), and about 99.7 percent lie within three standard deviations (μ ± 3σ ...
It doesn't. Success for MVD (other than mortality and complications) is a subjective matter. MVD is an elective pain reduction surgery. Patients fill out a survey. If based on the survey they have a 50% (in the USA, it varies, in part of the EU its 70%) reduction in symptoms, its a "success" Of course there are multiple studies with various "definitions" Then every so often a study combines all the other studies and comes up with another number to really confuse things. keep in mind that one number is consistent and that is that there is a 30% - 40% (AND OFTEN HIGHER) placebo effect for most any pain reduction procedure.
aiculsamoth said:
so humour this maths dunce, if MVD is stated at best say has an initial 90% success (depending on definition of success rate), put simply (if) how does standard deviation apply, or would it only apply to the recurrence rate?
I assume success in MVD rate means resolution of symptoms, not "we managed to remove a vessel"
ModSupport said:
Quick mathematics lesson here so far as it relates to medical literature.
When they say it last for 5 years they mean that everyone with in "one standard deviation" lasts 5 years. That means only 68% lasts five years the others last either longer or shorter. Iiterally it means means one six will have the procedure last longer. and one in six last shorter. The only people who are considered are those for who the procedure "worked"
Its called the 68, 95, 99.7 rule. I can go into long explanation (its part of what I did for a living) but the fact is Al had a about 1 in 10 chance of it lasting as long as it did. (Depending on how you describe success)
The mathematics if you are interested:
If a data distribution is approximately normal then about 68 percent of the data values are within one standard deviation of the mean (mathematically, μ ± σ, where μ is the arithmetic mean), about 95 percent are within two standard deviations (μ ± 2σ), and about 99.7 percent lie within three standard deviations (μ ± 3σ ...
Thanks for the info, can't help but chuckle, than other than mortality.. it is subjective, insensitive. So higher than ten percent above placebo it is considered a success. Astonishing. Maybe a reason to stop drilling holes in peoples heads and pretend a sham treatment for the sake of placebo affect. Seriously though, I may be getting the wrong end of the stick but the US are conducting MVD's with a circa 10%+ better than placebo with a 1 in 300 death rate for something that rarely kills anyone?? Or is this too basic an analysis
ModSupport said:
It doesn't. Success for MVD (other than mortality and complications) is a subjective matter. MVD is an elective pain reduction surgery. Patients fill out a survey. If based on the survey they have a 50% (in the USA, it varies, in part of the EU its 70%) reduction in symptoms, its a "success" Of course there are multiple studies with various "definitions" Then every so often a study combines all the other studies and comes up with another number to really confuse things. keep in mind that one number is consistent and that is that there is a 30% - 40% (AND OFTEN HIGHER) placebo effect for most any pain reduction procedure.
aiculsamoth said:
so humour this maths dunce, if MVD is stated at best say has an initial 90% success (depending on definition of success rate), put simply (if) how does standard deviation apply, or would it only apply to the recurrence rate?
I assume success in MVD rate means resolution of symptoms, not "we managed to remove a vessel"
ModSupport said:
Quick mathematics lesson here so far as it relates to medical literature.
When they say it last for 5 years they mean that everyone with in "one standard deviation" lasts 5 years. That means only 68% lasts five years the others last either longer or shorter. Iiterally it means means one six will have the procedure last longer. and one in six last shorter. The only people who are considered are those for who the procedure "worked"
Its called the 68, 95, 99.7 rule. I can go into long explanation (its part of what I did for a living) but the fact is Al had a about 1 in 10 chance of it lasting as long as it did. (Depending on how you describe success)
The mathematics if you are interested:
If a data distribution is approximately normal then about 68 percent of the data values are within one standard deviation of the mean (mathematically, μ ± σ, where μ is the arithmetic mean), about 95 percent are within two standard deviations (μ ± 2σ), and about 99.7 percent lie within three standard deviations (μ ± 3σ ...
I obviously haven't waited for a reply to the last, but how can any patient make an informed choice about treatment if they are being quoted 90% success rates for MVD, which if I were a patient I would be assuming symptom free. Please tell me I have made some kind of mistake with the figures.
aiculsamoth said:
Thanks for the info, can't help but chuckle, than other than mortality.. it is subjective, insensitive. So higher than ten percent above placebo it is considered a success. Astonishing. Maybe a reason to stop drilling holes in peoples heads and pretend a sham treatment for the sake of placebo affect. Seriously though, I may be getting the wrong end of the stick but the US are conducting MVD's with a circa 10%+ better than placebo with a 1 in 300 death rate for something that rarely kills anyone?? Or is this too basic an analysis
ModSupport said:
It doesn't. Success for MVD (other than mortality and complications) is a subjective matter. MVD is an elective pain reduction surgery. Patients fill out a survey. If based on the survey they have a 50% (in the USA, it varies, in part of the EU its 70%) reduction in symptoms, its a "success" Of course there are multiple studies with various "definitions" Then every so often a study combines all the other studies and comes up with another number to really confuse things. keep in mind that one number is consistent and that is that there is a 30% - 40% (AND OFTEN HIGHER) placebo effect for most any pain reduction procedure.
aiculsamoth said:
so humour this maths dunce, if MVD is stated at best say has an initial 90% success (depending on definition of success rate), put simply (if) how does standard deviation apply, or would it only apply to the recurrence rate?
I assume success in MVD rate means resolution of symptoms, not "we managed to remove a vessel"
ModSupport said:
Quick mathematics lesson here so far as it relates to medical literature.
When they say it last for 5 years they mean that everyone with in "one standard deviation" lasts 5 years. That means only 68% lasts five years the others last either longer or shorter. Iiterally it means means one six will have the procedure last longer. and one in six last shorter. The only people who are considered are those for who the procedure "worked"
Its called the 68, 95, 99.7 rule. I can go into long explanation (its part of what I did for a living) but the fact is Al had a about 1 in 10 chance of it lasting as long as it did. (Depending on how you describe success)
The mathematics if you are interested:
If a data distribution is approximately normal then about 68 percent of the data values are within one standard deviation of the mean (mathematically, μ ± σ, where μ is the arithmetic mean), about 95 percent are within two standard deviations (μ ± 2σ), and about 99.7 percent lie within three standard deviations (μ ± 3σ ...
Thank you Lee. I just left my Neuro Doctor and he is having a pharmacist friend of his mix the concoction you recommend and prescribe it for me. Hope it works. I have a severe attack of jaw pain every 4 to 7 days. Nothing has helped so far. Hope your Gel mixture does.
LeeS773 said:
For yet unknown reasons, TN usually goes into remission and cycles with remissions becoming shorter and TN becoming worse.
After getting the TN under control for 6 weeks, it is recommended that you and your healthcare professional slowly titrate the dose down. If pain returns they will take you back to the last level.
How carbamazepine works on TN is not well understood. But the current thought is that it increases the amount of irritation it takes to evoke a response from the nerve cells. It also stabilizes the nerve cell making it take longer to recover before it can fire again.
My theory is that controlling TN for a time resets the cells or allows the cells to recover from an irritant. That's when we get remission. Take advantage of remission all you can and be ready to go back on medications.
I've been able to go completely off of Carbamazepine.
When my remission is over I will go back to Lidocaine 4% nasal spray, two sprays each nostril, lay back immediately for 1 minute, then turn head completely facing down to let it drain out. (otherwise it numbs your throat). You need to do this twice to get the recommended amount of Lidocaine to the nerve ganglion.
Transdermal gel applied at the jaw line just below your ear on the affected side.Mine is Ketamine 5% / Ketoprofen 10% / Gabapentin 6% / Clonidine 0.2% / Diphenhydramine 5%/ Lidocaine 5%. You have to have your doctor order this and then take the prescription to a compounding pharmacist. This puts these meds right at the problem. They are eventually taken away from the area as well and sent through the body, but the dose is so trivial by the time it gets diluted into the whole body that I have no side effects from it. Your doctor or pharmacist may question Clonidine because when you take a large dose it reduces blood pressure, but applied topically it opens up the skin to get the meds in deep where they need to be.
I have heard of this happening. Guess that is why I had my MVD 10 months after my first “jab”…It will be 3 years Dec. 12th…What an incredible blessing. The thing that bothers me the most is that my memory seems as though it will never get back the way it was. At times, I just can’t recall information…Praying for you. If you need a good doctor, Dr. Dong Kim in Houston is the best
My pain specialist performs this procedure on my neck and it is effective for about six months. I have had it done about six times now and am starting to notice a numbness, yet a soreness in a part of my neck and shoulder when it is touched. I asked him about the procedure for my TN2 and he told me that it is SO dangerous that he will not perform them at all. When I discussed it with him further, he jokingly told me that his wife enjoyed shopping far to much for him to ever take on the risk of doing such a dangerous procedure. He is the one that was finally able to give me a diagnosis after 30 years of not knowing what was wrong and quite frankly, I trust him with my life.
Just my two cents,
Cathy In MD
ModSupport said:
Pain management specialist have found that Injection of glycerol into the gasserian ganglion is a simple and effective treatment. Using a brief, intravenous anesthetic a needle is introduced into the nerve in the base of the skull and a small amount of glycerol injected. The treatment only takes a few minutes. 85% of patients achieve immediate pain relief and persisting numbness in the face is unusual and infection is rare. Recurrence rates are relatively high: about one-half will recur over 3 to 4 years. Reinjection may be performed, but glycerol injections become less effective after several are performed. There is of course a limit to how many times this procedure is effective so usually on finding success they move to Rhizotomny.
The advance procedure is called Rhizotomy. These days it is performed primarily by Pain management specialists (usually anesthesiologists with advanced training) Rather than grain alcohol they use other injectables including glycol and local anesthetics. They tend to try something temporary first to "test" the procedure. They also to RF ablation which is also temporary The ablated nerve grow back at about 1mm/year. Some centers are adding cones to the end of the ablated nerve The extreme version of the procedure is the Gamma Knife. It can be effective for type two as it only addresses pain, not the cause.
Cathy, Let me know what the doctor says at John Hopkins. I hesitate to do any surgery if the recurrence is high. I have had type 2 for 12 years with remissions on and off.... always retriggered by dental work. I have to believe the body has a way of resetting itself... maybe due to medication or just time. I also believe there is a relation to trigeminal neuralgia and circulation and autoimmunity in the body. If there was a blood vessel compressing the nerve, then the pain should always be there if. It wouldn't just come and go. As docs have mentioned before,they have seen cadavers with blood vessels compressing the trigeminal neuralgia and these people have experienced no pain. Doesn't make sense.
Cathy in MD said:
Laura, I saw your message late in the process and I've read through a lot of it but honestly, not all of it. It seems to have sprawled all over the place. I may be wrong but it appears that part of what you are asking is "Is there a surgical procedure available for those of us with TN2?" If so, has that been answered? If so, I am wondering the same thing. I am at the point of needing narcotics and would love some of way of living.
I know that some doctor's will perform surgery on TN2 patients and things will get worse. So, quite frankly, I am scared and my neurologist doesn't even know that there are different types. I am going to go to Hopkins but it is a long wait to get in.
Cathy, Which procedure was the one your pain specialist said was too dangerous??
Cathy in MD said:
ModSupport,
My pain specialist performs this procedure on my neck and it is effective for about six months. I have had it done about six times now and am starting to notice a numbness, yet a soreness in a part of my neck and shoulder when it is touched. I asked him about the procedure for my TN2 and he told me that it is SO dangerous that he will not perform them at all. When I discussed it with him further, he jokingly told me that his wife enjoyed shopping far to much for him to ever take on the risk of doing such a dangerous procedure. He is the one that was finally able to give me a diagnosis after 30 years of not knowing what was wrong and quite frankly, I trust him with my life.
Just my two cents,
Cathy In MD
ModSupport said:
Pain management specialist have found that Injection of glycerol into the gasserian ganglion is a simple and effective treatment. Using a brief, intravenous anesthetic a needle is introduced into the nerve in the base of the skull and a small amount of glycerol injected. The treatment only takes a few minutes. 85% of patients achieve immediate pain relief and persisting numbness in the face is unusual and infection is rare. Recurrence rates are relatively high: about one-half will recur over 3 to 4 years. Reinjection may be performed, but glycerol injections become less effective after several are performed. There is of course a limit to how many times this procedure is effective so usually on finding success they move to Rhizotomny.
The advance procedure is called Rhizotomy. These days it is performed primarily by Pain management specialists (usually anesthesiologists with advanced training) Rather than grain alcohol they use other injectables including glycol and local anesthetics. They tend to try something temporary first to "test" the procedure. They also to RF ablation which is also temporary The ablated nerve grow back at about 1mm/year. Some centers are adding cones to the end of the ablated nerve The extreme version of the procedure is the Gamma Knife. It can be effective for type two as it only addresses pain, not the cause.
