Monday, September 13, 2010

Surgical options explored... and ignored

On NPR this morning they did a story about a blind man who'd had surgery to restore his eyesight. He was born sighted, but lost his site in a chemical accident at age 3. The result was, his brain was so trained NOT to see images, after 40 years, that even though the surgery was considered a success, and has worked for others... he still can't see.

Retain the brain. That's the key. But, his doctors didn't anticipate this, nor know how to resolve it.

That's what concerns me about those of us who've been living with this a long time. We have to stop the pain cycle to train the brain that pain is not normal. So if that means having to be on meds, so be it.

I'm hoping that this is the key to teaching my brain that my own body's signals are false, or at least to overlook them.

Living on Lyrica and Klonopin, with the occasional hydrocodone, is not a way I ever imagined my life. Ever. I used to avoid even taking Advil - now, I just laugh at them, (aren't they cute?) they're about as effective as a Pez would be to me.

I've heard about surgeries, laser treatments, etc... but every doctor since Pogrel says the results are poor and they don't recommend it for me. It is only recommended for those who have complete numbness. Even then, those folks might end up like me, with hypersensitivity and pain, once the nerve is reconstructed and sending signals again.

I have requested from my doctors thin slice MRI's, MRA's, etc... and been told there's really no point. I'd have to keep searching for new Neurologists to find someone to order and read one, and considering how expensive it is, even with insurance, that's just not going to happen. When I was originally misdiagnosed with trigeminal neuralgia, here are some of the treatments I'd come across; some of these are also being talked about for lingual and alveolar nerve injuries. But I keep being told "no".
  • Microvascular decompression - this is brain surgery to release pressure on nerve or blood vessels, they often insert a teflon pad to relieve compression
  • Gamma knife - less dangerous, not an actual knife. Gamma rays are used to shrink the blood vessels surrounding the nerve. Biggest problem is probably that it's not always effective.
  • facial nerve blocks - seem to give temporary relief, most insurance won't cover
  • novacaine at ganglion nerve - temporary
  • radiofrequency or glycerin rhizotomy- I think they identify nerves sending pain signals and cut them. Interesting thing here is that it targets nerves which, due to not receiving GABA, generate unusual electrical activity. Since I'm taking pregabalin, anything with GABA gets my attention; however, having my nerves permanently severed does not.
  • Motor Cortex Stimulation- they put electrodes in your head
Obviously, my notes here are very unscientific, just gathered from stories I've seen on the web. Anyone who can add medical information or who happens to know anything about these please feel free to comment.

I hope I'm not still blogging about this when I'm old and gray.


  1. Hello Jane- I stumbled across your blog while researching lingual nerve damage. I so appeciate your blogging about your story. You have a true gift for writing.

    I had a routine dental procedure done about 6 weeks ago and I felt an electric shock like pain upon the injection of the anesthetic. Then I developed a burning pain in my tongue and here I am feeling no better.

    I hope to go back and comment on your blog entries as I read them. It is difficult for me to express myself right now. I feel so stressed and in pain.

    I just wanted to tell you how glad I am to have found your blog; it has made me feel not so alone. Thank you.

    Sending healing thoughts your way- Jean W

  2. rhizotomies do not cut the nerves, they burn them with a heated electrode. no severing, but damage is still inflicted.

    look into MRN. you will have to pay cash but you might find something.


  3. Jean, So glad to have you with us. I know the feeling of being in so much pain you can barely get your thoughts together. I hope you find some of these posts helpful.

    Let me know how you're doing. Keep the faith.

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  5. Hi there,

    I just just found your blog today and have been going through something similar for the last 18 months (horrible pain in my teeth on the right side). How did they determine that is was a lingual nerve injury and not idiopathic trigeminal neuralgia (type 2)? I went to the dentist in significant pain, which led to an emergency root canal, after which the pain got worse and worse. So they don't know if the original pain was legitimate dental pain, and the root canal caused the nerve pain, or if the original pain was the spontaneous onset of what was to become nerve pain. A real chicken or the egg problem. Obviously the treatment options are very different, so I'm curious to know how you figured it out.


  6. Jessica, thanks for your post. It is hard to diagnose trigeminal my case,I saw a neurologist at Cleveland Clinic who ordered an MRI brain scan with dye for contrast, and do some kind of eletrode conduction test on my head. To confirm my diagnosis of lingual nerve damage,the orofacial doc (Paul Bradley, google him) used heat sensitive photography and attached electrodes on my face and tongue to test my response. Based on that, and my recounting of dental events and pain I was experiencing, they confirmed my self-diagnosis, and prescribed Klonopin for the burning tongue. Since then I've seen other docs, and tried other meds (see blog posts for detail). I'm now on elavil, an antidepressant...too soon to tell if it's helping the nerve pain, but it sure helps with sleep.