What to do when all the options are gone.

[Dee52]

I have had trigeminal neuralgia for about 7 years.  At first I had the alcohol/glycerin injection and that caused damage to my hearing.  Then I went to Mayo Clinic in Jacksonville and had the MVD surgery which made my tongue feel like it's on fire.  The schocks never completely went away however, it wasn't bad for two weeks.  Then it came back worse than ever.  After having the MVD surgery are there any options?  The doctors say I will have to live with it.  I can't take the medications for TN they all make my heart palpatate and race.  If you have any suggestion I would appreciate it.  The schocks brings me to my knees at times.  It seems like all day I'm getting the schocks and it makes me not to even want to move for fear of the schocks.  

[miss_robin]

What about Avinza (time-release morphine)... I know it sounds scary, but I have a horrible case just like you -- I know the pain of not being able to kiss my husband -- a man who has been there for me through thick and thin and DESERVES to be kissed and kissed a lot!  I too, experience bad side effects from tegretol, topamax, neurontin, injections, etc.... I will have the Ganetta procedure done in a few weeks and my fingers are crossed... but in the mean time, a pain management specialist prescribed Avinza (morphine) and for the first few days to adjust to it, some anti-nausea meds.  Now, I'm not saying that it was a cure all.  But for the first time in years, I could relax a little.  Now, because of the disease & meds, I'm not supposed to drive, but I did LEAVE the window down (on the passenger's side) and felt the breeze on my face -- it brought me to tears....  

I hope it works.... and if not ... always remember.... even though there is no cure today... that doesn't mean there is no cure forever.

Best,
Robin

[Michael Lim, MD]

In general, sometimes people who have failed the microvascular decompression may be a candidate for a second operation.  In certain cases, people who report relief initially may benefit from a second operation because the teflon pledgletts can sometimes slip out.  Perhaps seeking a second opinion from another neurosurgeon might be useful.

[Dee52]

Thank you for all the information and sharing your experience.  My pain specialist has me on methadone I don't know how much difference there is in Avinza.  I will ask my doctor. I am so happy you are doing better just feeling a breeze again without anxiety that you will be in severe pain is a miracle in itself.

Take care...I will pray for you that your TN stays dormant forever!!!

I will never give up hope!
God Bless,
Dee

[Michael Lim, MD]

It sounds like you've gone through a great deal.  There are usually three treatment options for patients with trigeminal neuralgia.  MVD, Rhizotomies, and Radiosurgery.  Often times, treating patients with multiple modalities can increase the risk for side effects such as numbness and anesthesia dolorosa (painful numbness).  Perhaps visiting a pain specialist next is a good step to reassess.

[Linda101]

My father suffers from trigeminal neuralgia and it breaks my heart to have to see him suffer and know that there is nothing we can do but sit there and tell him it's going to be ok.  He is 71 years old and has been suffering with this for about 2 years.  I have gotten a lot of information from reading these forums.  I was reading up on treatments/surgeries and read about a new treatment, Radiation.  The only bad thing is that because this is a fairly new treatment, they do not know the long term effects.  What are your feelings on this treament for patients that suffer with TN and have you heard of any successful outcomes.

Thank you
Linda

[nsgirl]

hi i suffer from tn really bad, and as a pain killer i use methadone, and hydromorphone, and for once i have a little relief. i am 29 years old and have 3 children i raise on my own and suffering from tn has been a nightmare, but it was nice reading your situation, for once i dont feel so alone.
nsgirl.

[Dee52]

Dr. Lim,
  Thank you for the information.  I will go to another neurosurgeon and ask about the surgery.  Does a x-ray pick up if the teflon pledgletts has moved?

Dee52

[Dee52]

Dr. Lim,  I do go to a pain specialist and he says there is nothing else that can be done because I have so many side effects from my previous surgeries. The Trigeminal Neuralgia has ruined my life.  I do feel helpless...touching, smiling, eating, brushing teeth, the breeze, even the soft kiss from my husband and family brings me to tears.   I know once you get the anesthesia dolorosa along with the shocking pains there is nothing I can take to help.  Do you have a suggestion as far as medication besides tegretol etc in that family.  I hope and pray a new medication or treatment will help once damage is done after surgery. Thank you for your information. I hope more people open up about their TN.
Dee52