Too complicated for surgery? Help!

General General TN & GPN (Old Site)
1

Currently at Mayo’s, and so very frustrated. Maybe someone here can help?

I have a diagnosis of long-standing bi-lateral GPN. My Mayo Dr. refuses to try MVD unless I agree to let him cut my nerve.

My MRI showed no impingement, but he told us “it never does.” The diagnosis at this point is not entirely clear, though all my neuros agree that the symptoms appear to indicate GPN. Re-starting meds is dangerous for me due to another condition. If he finds an impingement during surgery he will decompress, but if he gets in and doesn’t find impingement, he demands to cut the nerve. Either I agree, or “don’t come back.”

Wow.

First, is there anyone here who has had GPN eventually involve both sides, and if so, what is your experience??

Has anyone had a doc who tried to force you to cut a nerve that may have been misdiagnosed? How did you handle the situation?

Is there anyone here who had their nerve cut? Has anyone had increased nerve pain after the de-nervation? I know this is a possible outcome, which honestly scares me. Put simply, things CAN’T get worse and be compatible with life of any kind.

Obviously I would never allow a Dr like this to touch me, however finding a doctor to actually look at my complicated history and want to help has proven to be, so far, impossible.

I am desperate to end this pain. It may be neuralgia caused by inflammation or my autoimmunity, or even impingement in my neck or throat. If this is the case, then why would I want to cut a perfectly good nerve on one side of my head, leaving me inoperable on the other? If it is autoimmunity, then the longer I wait, the more permanent damage I will be forced to live with the rest of my life. We can’t know without the surgery to go in and look though.

Maybe I’m out of line, but right now I’m not only upset at the arrogance of a doctor putting his success rate over the patients who comes to him for help, drawing a line in the sand, but also desperate to find the help I need, and desperate to find someone out there that understands and can at least offer support, if not advice, on what I should do.

Help?

2

Hi Ellen

Yeah I am with you on the Mayo Dr's stance here and strongly advise seeking another opinion. He's just saying he doesn't want to waste his time. His statement that an MRI impingement never shows is erroneous. It sometimes does! Not to mention the fact he can only cut your nerve with your permission. To say he will not perform it otherwise beggars belief.

I have not heard of bilateral GPN and can only wonder what your pain attacks are like.

I also had the immunity scenario but turned out it was fine, just another box on a checklist.

Do keep searching Ellen - hoping someone here may know a Neuro Hero near you!!

Michael

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Hi Ellen, do they have a patient advocate at the hospital? Sounds like something that should be reviewed by their ethics committee. I would be seeking a second opinion - sounds a little too dictatorial to me. :)

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Hello Ellen, It must be a very hard time for you and I am sending comfort and peace. I have only had one side cut so can not comment as to why the Specialist has made that decision. I also know sometimes their bedside manner leaves a lot to be desired and can upset us especially when we are frightened and feeling vulnerable and in so much pain. There is one girl that has Bilateral GPN that may be able to help you. Google Catlin's journey with Bilateral GPN. It is on Facebook, but I am not sure if she had the nerves cut. Good Luck and I hope she may be able to help with experience or another Doctor if you choose. Kind Regards Warrior Woman

5

Cutting the nerve should be the LAST OPTION and the fact a neuro is suggesting it as a first is incredulous! There are so many side effects with nerve sectioning as it is, let alone complete severing. Without hesitation, get a 2nd opinion. I have bilateral GPN but both sides are completely separate entities - I have had an MVD for my right side and will leave the left alone as the pain is manageable. Even if your neuro severed one nerve, he'd have to go into the other side and sever that one too as the left and right both have 9th and 10th cranial nerves, there's not "one" that controls it all.

Where are you? If you state your location perhaps someone on here will know a neuro near you? Sorry to not be of better help, but I'm in the UK.

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Ellen, even Mayo surgeons sometimes get their heads stuck up a dark place. You need a second opinion. Neurectomy is widely considered a "hail Mary pass" last attempt at pain control, with low probability of success. It is frequently associated with emergence of central nervous system pain (deafferentiation pain) that can't be treated effectively after the nerve is cut. NOT a great idea.

I think you might want to consider consulting with one of the members of the US TN Association Medical Advisory Board. The list as of July last year is at this link: http://fpa-support.org/about-tna/tnas-medical-advisory-board/

Go in Peace and Power

Red Lawhern, Ph.D.

Visiting Moderator

(normally I support Living With TN)

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Hi Ellen, I went to Mayo Rochester 4 years ago but had reservations as well. I had a very successful MVD 3 yrs. 2 months ago in Mpls, Mn. by Dr. Stephen Haines. If you "friend " me, I can be more specific about my experiences. I truly understand your dilemma but your surgeon will be your most important decision. If it doesn’t feel right don’t do it

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Sally and Ellen S,

While Dr. Stephen Haines does have a good reputation from most of what I have read, I do know he does not believe in bilateral GPN. I too am bilateral and when I met with him, he told me that GPN isn't bilateral. So Ellen S, I am not trying to stop you from seeing him, I just don't want you to be disappointed in meeting with him. He referred me to another Neurosurgeon at the U of MN, Dr. Park, who specializes in neurostimulation, pain pumps, deep brain stimulation. Haines was not open to MVD in my case because I am bilateral. Every case is different though, so I just wanted to fill you in on what I have experienced.