i have IITN and occipital neuralgia on the right side. i have had surgery for the TN twice and ganna knife surgery im on alot of meds and even though they have been increased they dont seem to be working. now im having pain on the left side that is setting off the cluster headaches that i get. i have heard of a surgery that severs the nerves completely. has anyone had it done and does it work? i got to see my surgeon on the 13th of this month and i am going to find out what my options are at this point. and to find out what can be done for the left side before it gets worse. does anyone have any opions?
Do you trust your surgeon?
Do you need a second opinion from another doctor?
I would get as knowlegable as you can on this before you do it!
Keep posting!
i trust my surgeon hes real good and honest and up front about everything. i was just wondering if anyone has had this done with any success.
are you diagnosed properly.. i mean - when they do those surgeries.. are they seeing something in the MRI ?
your story give s me the chills : ( all thouse procedures and noting... maybe it shows the source of the pain is other ... (lets say - upper back for exapmple.... or.. i don't know).
yep its TN and occipital neuralgia. i just had and MRI oof my neck and a nerve conduction study and nothing showed up. i do had nerve damage my chin half of my tonge are numb i take my meds on time every daymy trileptal dose has been increased and so has the neurotin dose. the painwas so bad it put me on my knees today in tears. i go to my surgeon in 2 days. im going to check my options.
Ouchie, did you have any kind of neck trauma that precipitated your neuralgias and cranial nerve damage?
I would urge anyone to read this before they consider severing anything, please.
http://www.livingwithtn.org/profiles/blogs/cutting-nerve-to-end-type-1-and-2-tn
Wow. Thank you, Jackie!
I corroborate - they cut a nerve, it isn’t nearly like what is written on the disclosure paper.
Innervation overlaps to a degree, that makes it even trickier. Numbness can coexist with a general creepy feeling, jumpiness to any touch, and yes, pain.
I am ever so glad I was sent to have a nerve biopsy (hence that nerve cut out) - i’d rather it be my ankle and foot than my face. The surgeon does not have to mess up, this is just what your body does, a good part of the time.
A member here has done this surgery in desperation and regretted it. She wrote it in her blogs just recently. Please follow Jackie’s advice and read it before you decide.
Thanks for the info my neuro surgeon has said he would advice against the procedure and said that he would not do it so since I trust himi am taking his advice. He has asured me that he is going to do everything he can to find me relief. Thank you MUSC in SC. They are very understanding and compassionate to the pain of TN and simular conditions