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Living With Facial Pain

Cut the nerve


#1

Hi all-

I just had a glycerol rhizotomy 3 weeks ago with only 1 week of actually being total pain free. This came after I have already had 2 MVDs.

Last night I ate some ice cream for a birthday and not even thinking twice I think the cold is what set me off again. Needless to say I have had enough. I just want to get rid of this nerve. I was looking on the mayfield clinic and came across this, but I don’t know much about it and didn’t see too much on here about it. Is the procedure called something else? Has anyone had this? Does it forever get rid of this? I know being numb forever isn’t ideal. But I’m 27 and have been doing this for over 5 years and just can’t anymore.

Sensory rhizotomy is the irreversible cutting of the trigeminal nerve root at its connection to the brainstem. A small opening is made in the back of the skull. A stimulation probe is used to identify the motor root of the nerve. The motor root, which controls the chewing muscles, must be preserved. The sensory root fibers, which transmit the pain signals to the brain, are severed (Fig. 5). Cutting the nerve causes permanent facial numbness and should only be considered for recurrent pain that has not responded to other treatments.

Anyone’s feedback on the procedure is greatly appreciated!

Crysta


#2

HI Chrysta
I am so sorry your procedure was not successful, and you are again in pain. I am not personally familiar with nerve cutting, but it does seem very extreme. I have a peripheral nerve stimulator that the addresses the pain. This was implanted after MVD failed to relieve the burning boring pain of TN2. I have had it for over two years, and it works very well. There are not very many doctors who use this device for TN pain, but my surgeon is very experienced with it. He is Dr. Jeffrey Brown in Great Neck, NY. I don’t know if this would be an option for you, but if it is at all possible, I would encourage you to have a consultation with him. He is a TN expert who has been on the Facial Pain Associations board for years, and I found him to be truly dedicated to relieving his patients pain.
If you have any questions, please feel free to ask.
Best regards
Christine


#3

thank you Christine! I have heard of him a few times now, based on what my neurosurgeon suggests I may need to reach out for another opinion.

Thank you!

Crysta


#4

I live in Cincinnati and have been considering having my infraorbital and supraorbital nerves removed. I made an appointment with Mayfield Clinic awhile ago and then chickened out. Now that pain has started in the same nerves on the other side of my face as well, I plan to make another appointment. In fact, I was going to call this week. The only thing that works for me is hydrocodone (been on same dose for 7 years!) but now I'm getting bilateral that is getting worse and I guess I'm so adjusted to the hydro for original pain that it does nothing for the new side. Also, I am tired of living in fear of the DEA war on patients.Like you, there are no other procedures (including neurostimulator) or medications other than opiate to try. I'm hoping that my pain is coming from the peripheral nerves themselves (infraorbital and lower supraorbital) because Mayfield just happens to be able to remove those two nerves without having to touch main trigeminal nerve! Enough about me and back to you (lol). Where is your pain? Are you in the Cincinnati area?


#5

Hi Mary-

Can I ask why you backed out of it initially?

My pain is on the right side of my face upper and lower jaw area. I'm in Pittsburgh so I see Dr. Raymond Sekula at UPMC. I have an appointment on Monday to see him, but the message I got yesterday was basically they don't know what else to do for me other than to section the nerves.


#6

Because I'm a weenie! Seriously, Honestly,it's because I have not reached bottom when it comes to desperation. When I'm in midst of a really bad attack I swear I'm going to do it. But then the storm passes and I'm at a controllable pain level again and forget how bad the pain had been. It's an endless cycle but I'm lucky enough I'm having more good days than bad days for now. If the hydrocodone quits working and no other opiate/narcotic works or knocks me out, I will have to do it, no question about it.

It's the thought of complete numbness that creeps me out. I've only had that feeling one time with a nerve block (and I've had many, but this was different for some reason). That area of my face felt DEAD numb, like a corpse. It was very weird and I was very glad it only lasted about 30 min.

Shoot, right this very minute the other side of my face has started to flare up. The hydrocodone does nothing for this side. Maybe I'll see you at the neurosurgeon after all. I wish I knew who is best at TN there since Dr. Tew retired.If I find out I'll let you know.


#7

Hello Everyone...It has been a long time since I have visited Living with TN website, about three years...Here is my story.... After discovering I had TN I elected to go the "non invasive route" and had Gamma Knife surgery in an attempt to tame the TN beast. It was worthless and did not help ease pain at all. Then, over a period of a few years, I have three Glycerol surgery injections into the offending nerve area of my brain.....None of the above worked very well.....By 2010 I was desperate and elected to have MVD surgery performed at USC in Los Angeles....After surgery I was pain free for just six months but the TN came roaring back full force...I was so depressed and in so much pain I wanted to die..USC doctors told me they could not help me as the MVD had failed..They suggested that I have electric pulse wires placed into my face. These wires would be connected to some sort of battery that when an attack came I would press a button and it would reduce the pain attack..I am not joking..I declined of course...On November 29th 2012 I had another surgery, this time at Scripps in San Diego..."Cut the Nerve" surgery I call it...They dug into my brain and severed the bad nerve, they also discovered deeper down another damaged nerve and cut that one too. Lots of the damage may have been caused by the Gamma Knife surgery Im told....I had much advice before I decided to have the nerve actually severed, most of it totally negative and against doing such a terrible thing. But pain has no friends and I was desperate and knew I had nothing to lose....

So I had the surgery anyway and guess what ? I have my life back....It has been over THREE YEARS now and I have been totally pain free, with side affects, yes, but they are much easier to live with then TN.

Since surgery my life is in full speed ahead mode and I am pain free baby.....I also now enjoy four new grand kids, a wonderful wife who bought me a brand new diesel pickup truck that I can drive cause I have no more TN attacks...If you have any questions please feel free to ask me as I have traveled a long long TN road.


#8

Hi Vic-

That is such great news to hear. I too have been through many procedures with no long term success and I also do not react well to the medications, nor do they work.

Can you tell me about your side effects from cutting the nerve?


#9

Yes Vic I also would like to hear what your side effects are… Thank you! I am so happy for you that you are at long last pain free woohoo !


#10

Hi Vic!
I feel so encouraged by your story and so hopeful as well. I’m wondering about your side effects as well, like did your face droop? Etc.
Thanks, take care!
Maria


#11

partial sensory rhizotomy is what the neurosurgeon said he did to me on my medical record. its not new, its old. the statistics for it are not good. my trigeminal neuralgia went to all three branches after this procedure. I now have epilepsy and brain injury with cognitive deficit. the neurosurgeon said before the mvd surgery–you can go back to work 2 weeks after surgery–he did not visit me in my room after surgery while I was fighting for my life. at the 4 week check up visit he said he does not treat the epilepsy, ptsd, or cognitive problems I have, he only does brain surgery–even though he caused these problems. he lied on medical record saying I consented to partial sensory rhizotomy because he could not find a vascular body on the nerve to move. neurosurgeons can do anything to your brain and they cannot be sued or jailed because they are classified legally as sovereign immunity. I think the whole neurosurgery is guesswork, but then I’m brain damaged, they call it encephalopathy.
nerves are like electricity, even when you cut them, damage them, they jump to complete their path anyway. my advice–dont do it. change your lifestyle, get rid of negative influences, eat organic only, exercise regularly, build your health and mind the best you can—then re evaluate your pain and what you are willing to risk. I wish someone had told me.


#12

Just saw that surgery worked for you! so happy to hear someone was helped. after my experience, I will never let another surgeon near me.