Ive been told by several neuros and internists all different ways to cure this pain. Ive been told that the surgery would be a great idea and because of my age its better for me to fix the problem then to be medicated in pain management and taking other drugs for the rest of my life. Im on 27 years old and i cant ever see myself living on medications like that forever. I want this pain to go away forever, and if that means doing a more invasive procedure i don't have a problem with that. Ive been suffering for a year now, i cant take much more. Pain medication helps, but DO NOT FULLY RELIEVE THE PAIN! I also am in a bad place bc my body has horrible reactions to anti consultants and the anti depressants. So as of now im stuck on pain medication and thats it. I feel hopeless, confused, scared, and lost. If i cant have a surgery i will be on this medication forever. I never want to feel what i feel every day again and i will never give up until im out of pain. If im told by my neurosurgeon that MVD surgery is definitely out, i will have no other choice but to stay on pain management. Does anyone have any thoughts regarding both treatments, and if the surgery did work for you, or why you chose to stay on medication. Im trying to learn as much as i can about this to make the right choice to get my life back...please help me with any opinions or experiences you have or know people that have. More than anything i wished the gabapentin (neurontin) diddn't mess me up the way it did because it was the one time in combination with pain meds i had little to NO pain...SO now i need help figuring out what to do next...and who better to ask then people that are going through the same thing . Thank you for your help, this is all so new to me- Jen
p.s i was told by my endo that he would choose pain meds for the rest of his life if he had my diagnosis... and never the surgery...i dont get why some people want to stay on the meds? and is the surgery that risky or does it not always work?
Jen, TN is a new fact of your life, and a tough one for many people because you will deal with it in one form or another for the rest of your life. There are no "cures".
Even when surgery is successful -- and MVD very often is for Type 1 TN -- pain can recur over time. About 50% of successful MVD patients are still pain free after 12 to 15 years. Among those who experience pain recurrence, perhaps half to three-quarters are successful on a second procedure.
Neurosurgeons are increasingly coming to see the destructive procedures like Rhizotomy and Gamma Knife as inappropriate for people who have Type 2 symptoms or other evidence of trigeminal neuropathic pain (constant burning, aching, boring pain, different from the electric shock volleys of Type 1). For the folks ineligible or not helped by surgery for whatever reason, meds are the only means of pain management. There are trials underway to find a better targeted medication with fewer side effects. But we are still years away from widely available targeted meds.
Sorry if I've rained on your parade, Jen. But you're likely to do better by realizing that there is no magic that can give you your life back in exactly the form it was before TN came into it. Life can still be good, but it will almost certainly be different.
Red, Can you please explain why not going on medication can make TN progress faster? If the medication can't cure it I just don't understand why not taking it would be harmful.
Chronic intense pain creates chemical byproducts and is associated with a complex series of permanent or long-lasting gene-level changes in the nerve. The longer pain is allowed to persist, the more buildup there may be of these toxic byproducts, and the more difficult it can be to overcome their toxic effects and gain control of the pain.
Wow Red, maybe THAT'S why my pain has been so well controlled with the Tegretol. I was diagnosed about 2 weeks after the "shocks" came. I have had to increase it from 200 mg to 400 mg twice a day, but it seems to do the job. If it is really strong winds out, I don't usually feel any pain, but a small amount of burning/tingling type sensation. Other than that, I'm great! Thanks for explaining that. :-)
Red, i have no other option then to try a surgery or be in pain management forever ( im 27). I tried anti convulsants and had horrible reactions so im never allowed to be on them again, same with anti depressents. I cant live my life on pain meds i just cant. If i was able to take the other meds i def would and things would be fine, but i cant focus to the point of knowing what day it was. Now for type 2 MVD is not an option? I know i have type 2 but there also saying type one is there as well. im trying to accept and learn to live with what i have but i cant see my life being the way i planned or wanted having tn. I cant leave the house, eat, talk for to long, basically im afraid anything well cause an attack. Also when they talk about boring pain, what does that exactly mean? The pain is so intense i don't understand. Also, i was told when i was on neurontin that i would be on for 6 months and they would ween me off and then see if the pain went away, i was on it for that long and it diddnt go away...is that something you've heard of before? Ive never heard of taking a med and coming off it and then the pain would be gone forever. Do you know what makes a person a candidate for MVD surgery? Thanks for your help and input, Jenna :)
Richard A. "Red" Lawhern said:
Jen, TN is a new fact of your life, and a tough one for many people because you will deal with it in one form or another for the rest of your life. There are no "cures".
Even when surgery is successful -- and MVD very often is for Type 1 TN -- pain can recur over time. About 50% of successful MVD patients are still pain free after 12 to 15 years. Among those who experience pain recurrence, perhaps half to three-quarters are successful on a second procedure.
Neurosurgeons are increasingly coming to see the destructive procedures like Rhizotomy and Gamma Knife as inappropriate for people who have Type 2 symptoms or other evidence of trigeminal neuropathic pain (constant burning, aching, boring pain, different from the electric shock volleys of Type 1). For the folks ineligible or not helped by surgery for whatever reason, meds are the only means of pain management. There are trials underway to find a better targeted medication with fewer side effects. But we are still years away from widely available targeted meds.
Sorry if I've rained on your parade, Jen. But you're likely to do better by realizing that there is no magic that can give you your life back in exactly the form it was before TN came into it. Life can still be good, but it will almost certainly be different.
Jen, you might be considered by A FEW neurosurgeons for MVD, since you have a mix of Type 1 and Type 2 symptoms. But relatively few will do this procedure unless a high-resolution MRI/MRA confirms in advance that there is a vascular compression for the MVD to decompress. Type 2 TN pain is believed to have a more systemic character than Type 1, and is less often relieved by MVD. But the procedure may reduce your overall levels of pain and make it possible to control with lower doses of medication.
If Neurontin (or anything else) didn't actually reduce your pain to near-zero levels, then it wouldn't have been possible to taper you off the medication and expect you to go into long term remission. There is a lot of trial-and-error involved in finding medications and combinations that work for individual patients. Moreover, I've talked with possibly hundreds of patients who have tried to wean themselves off medication either on their own or with a physician's advice, only to have the pain come roaring back even worse than it was before, and even more resistant to meds. NOT a great idea, I assure you.
For much of the same reasons Red states Type 2 pain is less relieved by MVD. My pain started out as Type 2 and when I went to the neurosurgeon that is what he told me, that I was not a candidate for MVD. After reading up on the material prior to going to the neurosurgeon he pretty much confirmed it for me.
Jen, I have type 1 at onset ( pre meds at therapeutic level) and then type 2 rears its head on opposite side as breakthru pain. So I have both types as well as bilateral TN.
I saw a neurosurgeon a few weeks ago who said he WOULD do surgery.
However because i have another issue going on for last year dealing with vertigo and imbalance, I’m not making a decision until I’ve met with my ENT and neuro again. I’ve also requested a 2nd opinion from a different surgeon as well.
There is always hope, but we must advocate for ourselves so request an appt. with a neuro surgeon and research as much as you can.
Good luck!
Mimi
This is off topic but when you get in the wind.. does it make you get shocks worse like the next day or something??
Donna Cook Turnage said:
Wow Red, maybe THAT'S why my pain has been so well controlled with the Tegretol. I was diagnosed about 2 weeks after the "shocks" came. I have had to increase it from 200 mg to 400 mg twice a day, but it seems to do the job. If it is really strong winds out, I don't usually feel any pain, but a small amount of burning/tingling type sensation. Other than that, I'm great! Thanks for explaining that. :-)
I think the wind is a trigger for a lot of people it certainly is for me. When I go for my run in the morning I can feel a twinge almost right away and then I have the shock within five minutes of getting home. I try to cover my face as much as possible but it is hard when I am running as I get to hot. Other than when I am running I avoid going outside on windy days or I try to plan a place where I can go from my car into a parking garage to avoid being outside.
if i cant live on anything but pain meds and cant have surgery i dont know what im going to too....its to scary to even think about. I will def try alot of top Neuros for this and if one will do it or try i will try anything at this point. Has anyone heard of laser treatment working from the laser med center? heard great stories....
Yea i def need to look into what they can do...im at a loss only being able to take narcotice, the neurontin did give me reliefe but not 100%...and i was already weened off about 4 months ago because it had me a complete zombie...but i never plan on going on any meds like that again...esp bc it took me 2 and a half months to get off and i went through horrible withdrawl, and ur right it did come back alot worse and more painful\!
Richard A. "Red" Lawhern said:
Jen, you might be considered by A FEW neurosurgeons for MVD, since you have a mix of Type 1 and Type 2 symptoms. But relatively few will do this procedure unless a high-resolution MRI/MRA confirms in advance that there is a vascular compression for the MVD to decompress. Type 2 TN pain is believed to have a more systemic character than Type 1, and is less often relieved by MVD. But the procedure may reduce your overall levels of pain and make it possible to control with lower doses of medication.
If Neurontin (or anything else) didn't actually reduce your pain to near-zero levels, then it wouldn't have been possible to taper you off the medication and expect you to go into long term remission. There is a lot of trial-and-error involved in finding medications and combinations that work for individual patients. Moreover, I've talked with possibly hundreds of patients who have tried to wean themselves off medication either on their own or with a physician's advice, only to have the pain come roaring back even worse than it was before, and even more resistant to meds. NOT a great idea, I assure you.
there are about 40 other meds to try -- most with side effects of one or another -
two that are popular on here are Amitriptyline mixed with Baclofen - or just Baclofen / Clonazapam / please get the book Striking Back - by Dr. Ken Casey - is our unofficial bible here
I was proactive and researched getting OFF med and getting MVD by one of the BEST in the country.
He will email an initial consult with you - he is in Michigan - it was worth going there from Missouri-- Dr. Ken Casey as listed above--just google him
Until MVD -- for my type I - I used lidocaine patches on my face - took MUCH pain away - 12 hours at a time! Prescription your regular doctor could call in.
I actually take clonazapam \ alprazolam for my anxiety disorder so thats good! i will def talk to my doc about those other meds and see if shell give it a try.! Thanks for sharing that you feel the same way about meds,, and for the name of that dr and book im def going to check into it asap! :)
Kc Dancer Kc said:
there are about 40 other meds to try -- most with side effects of one or another -
two that are popular on here are Amitriptyline mixed with Baclofen - or just Baclofen / Clonazapam / please get the book Striking Back - by Dr. Ken Casey - is our unofficial bible here
I was proactive and researched getting OFF med and getting MVD by one of the BEST in the country.
He will email an initial consult with you - he is in Michigan - it was worth going there from Missouri-- Dr. Ken Casey as listed above--just google him
Until MVD -- for my type I - I used lidocaine patches on my face - took MUCH pain away - 12 hours at a time! Prescription your regular doctor could call in.