Recommendations for surgery options

Hi,

I hoping someone could help me. I started have pain when I was 17 and was diagnosed with TN when I was 18. I am now 24 and for the past 6 years I have tried multiple medications.
I have tried:
Trileptal
Baclofen
Lamictal
Clonidine Patch
Topomax
Gabapentin
Cymbalta
Mexilitine

I am currently on:
Trileptal
Baclofen
Lamictal
Clonidine Patch

I have a good neurologist at Cedars Sinai in Los Angeles, but have come to the point that my pain is really bad and although I don’t want surgery, I need to look at all my options. In 2010, I had an injection in the left side of my face which caused which caused left sided headaches secondary to optic damage. They later admitted something went wrong. After the effects I was left with, I am scared to pursue any surgical options. I have looked into MVD, but I have serious complications from general anesthesia so they don’t want to give me general anesthesia unless it is an emergency. This rules out MVD as general anesthesia is involved in the surgery.

I am hoping that anyone could recommend or talk with me about procedures other than MVD you have tried. I have read through other people posts, but I am scared and need help.

Thank you and Happy New Year

Get the book, STRIKING BACK …BY DR KEN CASEY…between all the treatments there, and us in the trenches, hopefully something would come up. ,!!!

During my Aug 2013 visit to Mayo Clinic in Rochester, MN this is how they sequenced the desirability of procedures for my Type I TN: (1) Balloon decompression; (2) MVD; (3) Gamma Knife; (4) other long needle procedures. But they really discouraged any surgical procedures until all pharmaceutical options had failed, because of the various complications of each procedure and the likelihood that additional procedures / meds would be necessary in the future despite whatever procedure was chosen. Basically, put off surgery as long as possible in the hopes that other procedures or meds would be developed that are better than the current options.

At least you are dealing with Cedars Sinai where they perform many TN procedures of all sorts each year, and not just trying to pay for their latest technology!

I wish you good luck and will be praying for you.

Hello I am 37 years old I was diagnosed with Trigeminal Neuralgia September 14 2012! I have had 7 procedures to cure this TN Disease… Nothing has relieved my pain… I need some more options. My pain Dr in Winston Salem NC states I have one of the worse case of TN he has seen in 30 years of his Practice of being a Pain Doctor… My pain treatments I have had with With Dr Ellis 1 procedure – Gamma knife, 6 procedures Dr Kaprual Phenopalatine Ganglion block with a needle on the face , Phenopalatine Ganglion block through the nose, 3 ketamine infusion brain coma procedures where you are hooked up to IV and medication is dripped from your body slowly and you lay there and looks like you in a coma, and with Dr Christine Hagen, Botox injections. All procedures were experimental. I’m still having some pain… I’m not in as much pain or having as much facial electric shocks however I’m still having nerve irritations… Any suggestions would be appreciated Thank you

I couldn't have the MVD either due to a AVM that was close by.I had GK and am so glad i did it even if it is not a forever fix.As with any procedure,try to go with the best surgeon.I think i lucked out(so far).Good luck!I didn't see the no.1 standby on your drug list,Tegretol.I hated it,but it did help the pain.

I recently had a spinal cord stimulator placed. It has helped quit a bit.

Hi Beth, I did Gamma Knife in May. The procedure for putting the "halo" on my head was interesting, and at worst pressure-ful, and otherwise the whole thing was silent and invisible, just like they said it would be (Tuffts in Boston), and I was awake the whole time. Never felt a thing. It was like a long MRI, and they even gave me a relaxant. The numbers look good for this procedure, especially nowadays. I personally have just come out of remission, and the pain is a good amount more tolerable than last winter.

I am scheduled for second gamma knife with Dr. Tatter in WS. He took Dr. Ellis place. He suggested MVD. I am scared to have MVD. Have you thought about MVD. I would like to correspond with you. I assume you live near WS, NC. I don't know anyone who is suffering with this. I am going crazy. Maybe a pain dr. would help me.

Felicia said:

Hello I am 37 years old I was diagnosed with Trigeminal Neuralgia September 14 2012! I have had 7 procedures to cure this TN Disease.. Nothing has relieved my pain.. I need some more options. My pain Dr in Winston Salem NC states I have one of the worse case of TN he has seen in 30 years of his Practice of being a Pain Doctor.. My pain treatments I have had with With Dr Ellis 1 procedure -- Gamma knife, 6 procedures Dr Kaprual Phenopalatine Ganglion block with a needle on the face , Phenopalatine Ganglion block through the nose, 3 ketamine infusion brain coma procedures where you are hooked up to IV and medication is dripped from your body slowly and you lay there and looks like you in a coma, and with Dr Christine Hagen, Botox injections. All procedures were experimental. I'm still having some pain.. I'm not in as much pain or having as much facial electric shocks however I'm still having nerve irritations.. Any suggestions would be appreciated Thank you

This has been the worse pain of mankind… I am near WS… About 30 minutes from there… I haven’t actually spoke to anyone who has had this TN pain I just see so many people going through this on Tn support page… I would like to correspond with you as well my email is ■■■■■■■■■■■■■■■■■■■■■■■ I’m going take further steps beginning of 2014 I just ran out of time on my job no more benefits until January so waiting patiently and dealing with the pain the best way I can

I've had pain since I was 12 and wasn't diagnosed until I was 16. I wasn't able to find any relief for any of that time until I have MVD not even a year after I was diagnosed. It relieved pain for about 6 months, until the pain came back fully and worse. It seemed I was out of options too, but I tried Lyrica. It made my pain livable. It's a relatively new medication for treating TN, but it worked for me.
And I had Dr. Barbaro in Indianapolis do my MVD, he's an excellent doctor, but it's a year later and half of my face is still numb. I'm not against MVD, I just wish I had known more before I had it done.

Hubby has TN and is seeing Dr. Sahai at USC Keck in Los Angeles. He has had TN since Sept '12. Sahai specializes in only TN. She tries a combination of different meds, as your doctor does. She considers surgery as a very last resort. So far, there has not been a combination of meds that has helped without harmful side effects. Epitol caused extreme swelling of his lower extremities. Now, he is waiting to see if his new meds will kick in soon. Everything seems to take 4 to 5 weeks to see any relief. If there is any at all. I'm hoping he will try acupuncture. I've seen postings here that say it might help.

Hi KC,

I bought the buy the book when I was diagnosed and between that and all the feedback, hopefully I will know what to do next.

Thanks

Kc Dancer Kc said:

Get the book, STRIKING BACK ....BY DR KEN CASEY.......between all the treatments there, and us in the trenches, hopefully something would come up. ,!!!

Hi Va Girl,

Thank you for letting me know what Mayo Clinic said. That is one of the medical centers I would consider going to if I need surgery. Would you recommend them? I hope to exhaust as many medications as possible before I try surgery, but the pain is really bad.

Hi Don,

Thank you for your recommendation of Tegretol. I wanted to try Tegretol as I though it might help, but they said Trileptal is similar, but they would consider trying it in the future. Would recommend Tegretol over Trileptal.

Don said:

I couldn't have the MVD either due to a AVM that was close by.I had GK and am so glad i did it even if it is not a forever fix.As with any procedure,try to go with the best surgeon.I think i lucked out(so far).Good luck!I didn't see the no.1 standby on your drug list,Tegretol.I hated it,but it did help the pain.

Hi Scott,

Thank you letting me know about your experience with Gamma Knife. May I ask, how long you were in remession? Were you still on medications after Gamma Knife or reduced dose?

Scott said:

Hi Beth, I did Gamma Knife in May. The procedure for putting the "halo" on my head was interesting, and at worst pressure-ful, and otherwise the whole thing was silent and invisible, just like they said it would be (Tuffts in Boston), and I was awake the whole time. Never felt a thing. It was like a long MRI, and they even gave me a relaxant. The numbers look good for this procedure, especially nowadays. I personally have just come out of remission, and the pain is a good amount more tolerable than last winter.

Hi,

Does your husband have a neurologist in addition to Dr. Sahai? It would be nice to find an neurosurgeon in California, but I am willing to travel anywhere. Did she recommend any procedures?

Thanks

seekingtnmedshelp said:

Hubby has TN and is seeing Dr. Sahai at USC Keck in Los Angeles. He has had TN since Sept '12. Sahai specializes in only TN. She tries a combination of different meds, as your doctor does. She considers surgery as a very last resort. So far, there has not been a combination of meds that has helped without harmful side effects. Epitol caused extreme swelling of his lower extremities. Now, he is waiting to see if his new meds will kick in soon. Everything seems to take 4 to 5 weeks to see any relief. If there is any at all. I'm hoping he will try acupuncture. I've seen postings here that say it might help.

Sounds like yu have been through the mill am so sorry for your suffering!!

I loved tegretol medication an older medicine but a good one. you will have to have blood tests to monitor levels while on this medication but it did the best for me and it comes in a time release but after seven yrs i wasn't able to continue taking it. my dr also suggested Elavil which helps support the stresses of your body since this is a chronic condition.

i had motor cortex stimulator implant seven years it interrupts pain going to your brain so the signal doesnt reach your brain. it was surgery but there is something newer called peripheral nerve stimulation. same day surgery,. same concept. these work like the tens units people have for back pain etc. do you tolerate spinal block? that maybe would get you through a smaller surgery?

also i would look into chiropractic adjustments, acupuncture, there is a tn diet that people say really helps can google that my meds cocktail is lortab, neurotin and toporol (beta blockers can help) vitamin b, vitamin d to support immune system and protect d levels since on pain meds. sometimes i still have to add advil for inflammation symptoms. but on two thirds less dosages of meds since surgery.

also there is a procedure that is called gamma knife doesn't work for atypcial but some people i have read on support sites get relief. some have to have repeat procedures others not since this is not surgery night be good option for you.

my dr at northwestern in chicago is unbelievable. is the hospital you deal with in LA a teaching hospital? seems they have more options than regular places.

blessings for pain free days for you and relief soon and yes Striking Back book excellent resource!

I had gamma knife in 2012....good results whichh lasted a little over a year...the pain is far less than it was pre-surgery...I am back to taking my tegretol which worked from the point of my original diagnosis, then stopped working...which prompted the gamma kniife..now tegretol seems to be working...will opt for another gamma knife, but no mvd.

Hi,

Thank you for your ideas and support.

I would like to try Tegretol as many people seem to be on and it comes in extended relief, so I will re-ask my neurologist at my appt. in February if he would prescribe it.

When I was first diagnosed, a neurosurgeon in CA talked to about a motor cortex stimulator and I was interested, but then never followed through and when I contracted her she said that she don’t know if insurance would cover it. Personally, I think it was an excuse instead of a reason not to seriously consider it as I have really good insurance. Who did you have put your stimulator in? I have never had a spinal block which would be something to consider as I cannot have general anesthesia and have problem with sedation.

I have never heard of Lortab or toporol, so I will mention them to my neurologist. My neurologist is Cedars Sinai which is a top teaching hospital, but I am open to traveling for surgery.

Hope you have a pain free New Year and beyond



julie said:

Sounds like yu have been through the mill am so sorry for your suffering!!

I loved tegretol medication an older medicine but a good one. you will have to have blood tests to monitor levels while on this medication but it did the best for me and it comes in a time release but after seven yrs i wasn't able to continue taking it. my dr also suggested Elavil which helps support the stresses of your body since this is a chronic condition.

i had motor cortex stimulator implant seven years it interrupts pain going to your brain so the signal doesnt reach your brain. it was surgery but there is something newer called peripheral nerve stimulation. same day surgery,. same concept. these work like the tens units people have for back pain etc. do you tolerate spinal block? that maybe would get you through a smaller surgery?

also i would look into chiropractic adjustments, acupuncture, there is a tn diet that people say really helps can google that my meds cocktail is lortab, neurotin and toporol (beta blockers can help) vitamin b, vitamin d to support immune system and protect d levels since on pain meds. sometimes i still have to add advil for inflammation symptoms. but on two thirds less dosages of meds since surgery.

also there is a procedure that is called gamma knife doesn't work for atypcial but some people i have read on support sites get relief. some have to have repeat procedures others not since this is not surgery night be good option for you.

my dr at northwestern in chicago is unbelievable. is the hospital you deal with in LA a teaching hospital? seems they have more options than regular places.

blessings for pain free days for you and relief soon and yes Striking Back book excellent resource!

I’ve had two gamma knife procedures and mvd. 1st GK was successful for 3-4 years; 2nd not successful at all. I had mvd and had relief for 6 months. Neurosurgeons told me 2nd GK may have effected the outcome of mvd. I spoke to sveral neurosurgeons prior to mvd and all said they wouldn’t have recommended 2nd GK. I wish the dr. Who did it had warned me as I would have gone straight to mvd. It feels like there is no one who really understands it completely and each patient has different experiences with it. I’m on meds now trying to find a balnce that works, any way, be certain you don’t want mvd before you do second GK…best of luck to you!