From the mailbag…


A patient writes:

I am Cynthia Smith and was recently a patient at Mayo. I have written the following story to share…

Thanks to Dr. Link, and the entire Mayo staff, I am now pain free from 7 years of excruciating tongue and facial pain. I suffered from glossopharyngeal neuralgia (severe tongue pain) and trigeminal neuralgia (TN), the “suicide disease”. I had all the usual triggers which caused pain: swallowing, chewing, moving my tongue, cold or hot temperatures, etc. Because eating was so difficult, I was losing weight and strength while basically living on yogurt and a liquid diet.

I had been diagnosed early on and had tried every possible medication, with little or no relief. In desperation, we traveled to the Mayo Clinic and went to the emergency room at St. Marys Hospital. It took a couple days before I made it into the “Mayo machine,” an efficient, smooth moving motion of tests, MRIs, and consultations. On Sept. 4th, Dr. Link and his team performed a craniotomy where they snipped the 9th cranial nerve to correct the glossopharyngeal neuralgia and then did a decompression vascular procedure by putting Teflon pad into between the vessels and nerves to correct the “TN”. Both procedures were completely successful! With the help of my faith, family, and friends, I’m now enjoying the pleasures of daily life again.

Thanks to Cynthia for sharing her Mayo Clinic story. If you would like to share yours, click here for options.

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13 Responses to “From the mailbag…”

  1. Mary Says:

    I have had trigeminal neuralgia, TMJ and Osteoarthritis in my right side of my face for 31 years now and It totally ruined my life. My kids had to take care of themselves and I just laid in bed most of the time to keep from moving. I spent thousands and thousands of dollars over the years to try and find out what was wrong. I finally got relief from a dentist but it still would come back and I then went to a chiropractor who helped me tremendously but 3 years ago, it came back with a vengeance and it then moved from my face to include around my nose, forehead and temple. When I would take my shirt off my head, I felt like I was being scalped by a indian. I know I have been told it just gets worse. I started out with Tegratol and for 2 weeks was pain free but it came back so I went to a neurologist and he put me on trileptol but now, my blood work is over the normal range. I have decided to go thru the Mayo clinic in Minnesota so hopefully it will help me to get pain free. I am suppose to be able to get a appt. in March or April.

  2. Gary McKee Says:

    I have been suffering with TN now for 2 years. I first started with Tegratol and than the pain went through it. I than had Vascular Decompression Surgery and that worked for 6 months leaving my lower jaw(mandibular nerve) parially numb. After 6 months the pain returned. We than jumped to Gamma Knife which has proven also not to have worked. I currently can hardly talk and on a liquid diet. Went for a second opinion and they recommended Mayo Clinic. Ready to do anything at this stage. Looking up flights to Mayo! Help?

  3. Debbie Says:

    I have been diagnosed with TN and have suffered now for over 20 years. Started out in the Jaw, then to the Eye and now all over the left side of my face from eyebrow to neckline and throat.

    I had a HMO plan and was given tons of meds, Tegretol, Baclofin, Ultram,etc.. I am now going every 3 months for 6 nerve blocks to my face. This has bought me a year back of my life but my pain is starting to come back even with the nerve blocks.

    I am at my wits end with this and cannot go any longer. IT IS THE SUICIDE ILLNESS!! HAS RUINED MY LIFE!!

    I am finally scheduled for a MRI and further test and to see Dr Christoher Duma at Hoag in Orange County Ca. I am wondering if this is a good idea or should I go right to the MAYO clinic. Any Suggestions?

    Please someone hear me out there!!! Thanks Debbie

  4. Kathy Mertes Says:

    I had vascular decompression surgery and am seeing double. It has been a month now and the eye doctor said the 4th nerve was pulsating. Has anyone else had this problem and/or have a solutation?

  5. Diane P Says:

    I have suffered with Trigeminal Neuralgia for 11 years and have been through two procedures (Gamma Knife and a invasive surgical procedure with no luck at all. I am now back on two of my seizure medications (Tegratol and Neurotin) and assume that’s the way I’ll have to live the rest of my life (unless the side effects of the medications ruin my liver).

    Diane P

  6. Jennifer Flint Says:

    My name is Jennifer and I am 35 years old and just at the beginning stages of diagnosis…all the above information is so helpful! I will definatley be traveling to the Mayo clinic if further treatment is needed! I have been having the shocking sharp pains for 3 weeks and been on 2 different sezure medications…one seems to finally be working but leaves me a bit drowsy. But I have been off pain medications for 2 days. I had my first mri today and will find out the results tomorrow…hopefully all is ok but I just read recently that this is called the suicide disease and I can totally understand that! and nobody can possibly understand the pain until suffered! Thanks again for sharing!

  7. Ruth E. Sacks Says:

    after last winter i can understand why they call it the suicide disease!
    i was diagnosed 2 years ago. what a mess this can make of you. I don’t want to face another winter with this monster and am looking into chat rooms or whatever i can find to decide how to proceed. i know there are different methods to take and so far the different medicines are not working for me.

    Any comments? From anyone? Help!


  8. Helen Says:

    Joan, Mayo diagnosed her with trigeminal NEUROPATHY – not trigeminal neuralgia. Surgery is not an option. She was prescribed tegretol (i think that is correct) A any rate, she chose not to take any medication unless it become really necessary. She has only had one “off the chart attach” She does have rescue medication just in case it hits again. I don’t know how she lives with the stinging, burning etc. She is a school principal plus working on her doctorate. May God bless each of you. Mayo said it was probably caused from a virus early in life. Prior to Mayo she saw many doctors, dentist etc. This problem started in 2004 after a horribe auto accident in 2002. Who knows?

  9. Helen M Says:

    I am encouraged to read these reports. My daughter has an appointment on January 3, 2010 at the Mayo Clinic in Rochester, Minnesota. We have researched every word on trigeminal neuralgia and feel that this is the place to go. My daughter is traveling from Clovis, NM. Hopefully she will have a wonderful story to tell after her treatment. Thank you again so very much for your stories.

    • Joan Says:

      Helen –

      How did it go? I am on seizure medication to control my pain but after increasing the dose a couple of times.

  10. Thom Wellington Says:

    I was diagnosed with trigeminal neuralgia today – I was in the ER all last night with bursts of pain that were almost exactly like an electrical shock in my mouth and face under one eye. Originally, I thought it was a tooth nerve and loaded my mouth with tooth pain medicine – nothing worked. Maybe had 20-30 attacks last night and about 7 today. Praying the medicine works – I understand why they call it what they do. I cannot imagine living life with that kind of pain all the time.

  11. Jan Reiff Says:

    Thank you so much for being an encouraging source of information during our difficult time with my husband’s diagnosis of this condition.

  12. Donny Rowles Says:

    Hello there,

    I’m a Rochester reporter and I’d like to see if Cynthia would be interested in doing an interview about her experience.
    I am wondering if she’s from MN? Or if she plans to come back to Rochester at some point again. If there’s any way you could help me get connected with her, that would be great. Thanks much.

    Donny Rowles
    ABC 6 News, Rochester

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