Rhizotomy , or Cutting of the Trigeminal Nerve

General General TN & GPN (Old Site)
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Hello again, all!

After my appointment with my Pain Management Doctor, and my acquisition of a bit of relief via my medication for "breakthrough" pain, although it was not the dosage I needed to remain pain free by a long shot, I am in a somewhat better mood. Well, who wouldn't be? This pain can make ANYONE a bit off balanced, at times. That's why we should be oh-so-patient with one another.

Thank you all for your prayers and well-wishes.

It occurred to me today that just cutting this nerve may be my only way out of pain, if I'm never going to be able to get the amount of analgesia I need to have any quality of life.

Of course, I've read about risks, lots of them.

Has anyone here had a Rhizotomy of the Trigeminal Nerve? A partial one? I'd be interested to hear of anyone who has undergone any type of this procedure.

A Type II patient like me, who presented as Type II, is not a candidate, typically for Microvascular Decompression, or really any other procedure I've read about.

From what I've read, you lose the feeling in your face, the nerve may grow back, etc.

If you've undergone it, or know anything about it, I'd love to know/hear your thoughts, please.

Thanks in advance, as I want to know every option. My pain is controlling every aspect of my life. I'm not in a position to be too choosy about how my relief comes, but I'm sticking to my motto: "Do Not Let Your Pain Be Dismissed"!

Stef

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Did you see the video of the woman who had it done. There is one on here .

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Nope. I'll try to find it. Thanks, Min. It just sounds so drastic, and I can't believe I'm considering it, but . . . .wow . . .things are getting bad.

Thank you for responding.

Min C said:

Did you see the video of the woman who had it done. There is one on here .

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Stef, you need to be REALLY careful about the assumption that cutting the nerve may numb your face and remove your pain. Please do some research on "deafferentiation" pain. When it occurs as a result of rhizotomy, it can be worse even than TN, and much harder to treat...

http://www.medscape.com/viewarticle/554867_2

http://ukpmc.ac.uk/abstract/MED/6514166/reload=0;jsessionid=Jf2zjqpF7towuJ0tkYEz.110

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Stef, have you considered an RFA on a sympathetic nerve/ganglion, like the sphenopalatine ganglion (SPG)? Since the damage is done to a sympathetic nerve, there's less chance of a bad outcome.

Did you ever read my thread about my "stent"? Check it out... http://www.livingwithtn.org/forum/topics/using-a-stent-for-oral-and-facial-pain The original article I cited there is no longer free, but I think the thread explains it well.

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A woman on FB had her nerve severed almost two weeks ago. I'm not sure where it was cut, which branch, base of the TN, not sure. I do know that she lost her hearing in the ear on that side, and she is numb, with no pain. However, when she first woke from surgery she was still in pain and they gave her Ketamine to help her brain "unlearn" the pain. With the Ketamine, she is pain free. She'll be taking it for a month, and then hopefully go off of it.

I was scared of what her outcome was going to be. Yes, she got hearing loss, but overall she's really happy she did it. She had had 2 MVDs and multiple other failed procedures so this was her last hope. Seems she's finally found some peace.

Just to be clear for anyone who doesn't know, severing the nerve is a HUGE deal, and most doctors won't even do it for you. It is the final option, and you could have drastic consequences. It is rarely done, and only to the worst of cases...

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Oh, I will read the links, certainly, and thank you, Red, for giving me facts. I hope you know that I wouldn't hastily jump into any type of surgical intervention. You know that I am on a staircase for pain relief, and I'm simply exploring options. I have an appointment with my "Head and Face Pain Specialist" this month when I will ask to be referred to consult, hopefully, with a more highly specializing Neurosurgeon, to ask many questions and go through much deliberation and testing of the waters as to how far up Pain Management is willing to take me before i would consider such a measure. I'm simply wanting to hear "real life" experiences from those who have had Rhizotomies in this thread. My intentions for myself are not at all clear yet. I know you are trying to help me to know the price I may pay, though, and I couldn't be more grateful!

Honestly, though, as I believe I stated before, a saving grace still is that, from what I can tell, I am on the low end of the staircase in the big scheme of what doctors COULD do for me as far as easing the pain with medication. I've read online, case histories, of "Atypical TN, Type II" sufferers who are prescribed 6 30 mg. Roxicodone daily, and as much as 6 OxyContin to back them up for underlying pain. So, my current dosage of 60 mg. Roxicodone and 40 mg. Methadone daily is certainly low in comparison. I definitely still HAVE PLENTY of wiggle room for analgesia. However, if analgesia fails me, I have to be prepared for it, which is why I am beginning to study options such as Motor Cortex Stim implants and Rhizotomy.

I'd not rush into anything, trust me.

However, my pain is becoming almost more than I am not sure is humanly bearable while still trying to function at all, like I still must do, day in, day out, as a mother and wife.

Thank you for your concern. Know, please, that it is sincerely appreciated.

The best regards to you, and hoping you are enjoying the weekend!

Sincerely,

Stef


Richard A. "Red" Lawhern said:

Stef, you need to be REALLY careful about the assumption that cutting the nerve may numb your face and remove your pain. Please do some research on "deafferentiation" pain. When it occurs as a result of rhizotomy, it can be worse even than TN, and much harder to treat...

http://www.medscape.com/viewarticle/554867_2

http://ukpmc.ac.uk/abstract/MED/6514166/reload=0;jsessionid=Jf2zjqp...

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Thank you, Crystal, case histories, YES! That is exactly what I want to hear.

I appreciate hearing what you know of one.

Anyone else out there post-Rhizotomy, or have a friend who is, who can relay their experience, or can provide a second hand one as Crystal has done for me here?

crystalv said:

A woman on FB had her nerve severed almost two weeks ago. I'm not sure where it was cut, which branch, base of the TN, not sure. I do know that she lost her hearing in the ear on that side, and she is numb, with no pain. However, when she first woke from surgery she was still in pain and they gave her Ketamine to help her brain "unlearn" the pain. With the Ketamine, she is pain free. She'll be taking it for a month, and then hopefully go off of it.

I was scared of what her outcome was going to be. Yes, she got hearing loss, but overall she's really happy she did it. She had had 2 MVDs and multiple other failed procedures so this was her last hope. Seems she's finally found some peace.

Just to be clear for anyone who doesn't know, severing the nerve is a HUGE deal, and most doctors won't even do it for you. It is the final option, and you could have drastic consequences. It is rarely done, and only to the worst of cases...

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Stef, is this what a member Dianamtz had done recently? her son kindly put a note on whilst she was recovering in ICU. I have also sent a PM.

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Stef, It's under Forum. Thinking of cutting the V2 and V3 nerve. Posted by Diantamtz. Found it for ya!!

Min

Stef said:

Nope. I'll try to find it. Thanks, Min. It just sounds so drastic, and I can't believe I'm considering it, but . . . .wow . . .things are getting bad.

Thank you for responding.

Min C said:

Did you see the video of the woman who had it done. There is one on here .

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Stef

I am pasting a reply I made to Misstammie last year.

Jackie said:

Hi Tammie

I do not have the medical knowledge needed to help give clarity to this situation, sorry. What I do have is the ability to see your Dr's are ubeeeelievable! How are you ever expected to trust any of them!


What I do have to share with you is that my mother in law as a retired nurse has some medical training of course and has tried to help me where she can, she has never doubted me as her very good life long friend also had TN. In the 1960's she had her nerve severed, I fully understand her choice, there have been times I felt like doing it myself if I knew how! Now it did cure her of the pain but she is TN not ATN. What has showed up over the years is it has had a serious result in how she looks. Her face has drooped on that side very badly as in stroke or bell's Palsy. I can see you are a very pretty woman and worry about how you would cope with that over the years.

It's true its nearly 50 yrs and they may be able to perform it better now but how do we know? A woman's life can be drastically changed by her looks and I would urge you to seek psychotherapy counselling before making that sort of decision. I would imagine most of us would prefer not to look like that.

I do sympathize, I can well imagine how bad you feel and we all want a magic bullet. It's a dreadful choice, pain versus looks, but really it must be considered and I know not many people have seen someone 50+ years down the line to compare notes with.

I hope I am not giving another opinion to muddy your waters, that is not my intention. I just want you to be able to make a clear choice in the knowledge of what you may face.

I hope you are able to find some relief very soon, you have suffered so much.

Jackie

I add this Stef as another angle to be considered along with the implications of increased pain etc. When I am at my worst I would consider it. If there were no options left.

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I think the phrase “quality of life” is the important factor here. BUT at what risk ! Personally if cutting the nerve or rhizotomy worked for me, you wouldn’t see me hanging around ATN forums. I’d be out living my life!!! So in your considerations, forums may not be the best demographic for finding out surgery results as you are most likely going to run into cases where the procedures weren’t so successful. The words I’m most afraid of associated with ATN surgeries are “anesthesia dolorosa” and could be an outcome for both of these.

I totally understand you wanting more in life though and I find your voice on this site to be one of the most intellectual and grounded. If “you” are considering these 2 surgeries then things must have really Become substandard for you. Make sure you also distinguish results from people who only have ATN, have type I and type II, and also had type I which developed into type II. The results seem to really vary depending on which category people fit into and then how did it start? Car accident, dental work, shingles or any other causes… It’s just so tough for us with ATN to get good %'s for any surgeries. I was given 5% for my MVD.

Anyways thinking of you stef and wish nothing but the best for you
Luke