Discussions By Condition: I cannot get a diagnosis.

Needing Help for my Daughter

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Anonymous
  • October 23, 2007
  • 10:55 PM

I have a 17 yr old daughter. Who was diagnosed almost two yrs ago with Trigeminal Nerualgia. She just woke up one morning with her face hurting and it proceeded from there. As the yr went on this gradually got worse. SHe started loosing her hearing rapidly. She has had several genetic tests done and a wide variety of other kinds of testing done also. The only one that came back positive was her ANA. Several MRI's and CT's and MRA's. She was diagonsed with Diabetes also. She has been diagonsed with Multiple Cranial Neuropathy. The nerves that are effected are 5, 6, 7, and 8. Her speech is starting to be effected now. I am needing to know if anyone has heard of any thing like this and if so what is it called ?? She is not a canidate for any surgeries we was told for there is more than one Cranial nerve effected. We have seen so many doctors that it is not even funny. Specialists in the fields of Neurology and Audiology. Some say the same thing others don't. My daughter is in so much pain that it is crushing to see her like this.,,,,,, i would like to know of ANY SPECIALIST in the field of Multiple Cranial Neuropathy. ANY WHERE

Auto immune ear disease testing was done also. Negative. Meds that she is currently on,, Neurotin 1200 tid, Elavil 100 hs, Ibuprofen 600 tid, Metformin 500 bid, Trileptal 600 bid, and others for depression and asthma.

Thank you for reading this and helping in any way you can . May God bless you always.

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  • Cranial nerve neuropathy v,vi,vii,viii have been associated with lyme disease. Has she been tested for that? There is mention of a demylelinating disease of the pons from MS in young adults. Has she been tested for that? Have you tried taking her to a pain clinic? Richard Clatterbuck M.D. @ John's Hopkins specializes in surgery.(per the internet) If anticonvulsants don't help and surgical options have failed or are ruled out, the pain may be treated long-term with an opioid such as methadone. Have they tried methadone or botox? Three other procedures use needles or catheters that enter through the face into the opening where the nerve first splits into its three divisions. Excellent success rates using a cost effective percutaneous surgical procedure known as balloon compression have been reported. This technique has been helpful in treating the elderly for whom surgery may not be an option due to coexisting health conditions. Balloon compression is also the best choice for patients who have ophthalmic nerve pain or have experienced recurrent pain after microvascular decompression.Similar success rates have been reported with glycerol injections and radiofrequency rhizotomies. Glycerol injections involve injecting an alcohol-like substance into the cavern that bathes the nerve near its junction. This liquid is corrosive to the nerve fibers and can mildly injure the nerve enough to hinder the errant pain signals. In a radiofrequency rhizotomy, the surgeon uses an electrode to heat the selected division or divisions of the nerve. Done well, this procedure can target the exact regions of the errant pain triggers and disable them with minimal numbness.The nerve can also be damaged to prevent pain signal transmission using a gamma knife or similar radiosurgical device such as Novalis shaped beam. No incisions are involved in this procedure. It uses radiation to bombard the nerve root, this time targeting the selective damage at the same point where vessel compressions are often found. This option is used especially for those people who are medically unfit for a long general anaesthetic, or who are taking medications for prevention of blood clotting (e.g., warfarin).Where do you live?
    rad-skw 1605 Replies
    • October 24, 2007
    • 07:39 AM
    • 0
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  • What about a great chiropractor and an acupuncturist???She should get speech and maybe PT or OT, too, at her school. Ask the school to evaluate her for speech.
    Monsterlove 2921 Replies
    • October 24, 2007
    • 07:48 AM
    • 0
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  • Cranial nerve neuropathy v,vi,vii,viii have been associated with lyme disease. Has she been tested for that? There is mention of a demylelinating disease of the pons from MS in young adults. Has she been tested for that? Have you tried taking her to a pain clinic? Richard Clatterbuck M.D. @ John's Hopkins specializes in surgery.(per the internet) If anticonvulsants don't help and surgical options have failed or are ruled out, the pain may be treated long-term with an opioid such as methadone. Have they tried methadone or botox? Three other procedures use needles or catheters that enter through the face into the opening where the nerve first splits into its three divisions. Excellent success rates using a cost effective percutaneous surgical procedure known as balloon compression have been reported. This technique has been helpful in treating the elderly for whom surgery may not be an option due to coexisting health conditions. Balloon compression is also the best choice for patients who have ophthalmic nerve pain or have experienced recurrent pain after microvascular decompression.Similar success rates have been reported with glycerol injections and radiofrequency rhizotomies. Glycerol injections involve injecting an alcohol-like substance into the cavern that bathes the nerve near its junction. This liquid is corrosive to the nerve fibers and can mildly injure the nerve enough to hinder the errant pain signals. In a radiofrequency rhizotomy, the surgeon uses an electrode to heat the selected division or divisions of the nerve. Done well, this procedure can target the exact regions of the errant pain triggers and disable them with minimal numbness.The nerve can also be damaged to prevent pain signal transmission using a gamma knife or similar radiosurgical device such as Novalis shaped beam. No incisions are involved in this procedure. It uses radiation to bombard the nerve root, this time targeting the selective damage at the same point where vessel compressions are often found. This option is used especially for those people who are medically unfit for a long general anaesthetic, or who are taking medications for prevention of blood clotting (e.g., warfarin).Where do you live? As for the Lyme disease it was negative. She has had a numerous amount of testing done. Spinal taps, etc. Everything is negative except her ANA titer. As for MS they said she did not have it due to the fact that there are no lessions ? on her CT scans.. So they said that was out too. We seen who was to be the top Neuralogical Surgeon in the state and he said she was not a canidate for surgery because there is more than one Cranial Nerve effected. We drove half way across the state and spent a whole 15 minutes there for him to say " sorry i can not help you either". The key thing is that there is more than one nerve effected, if one nerve was effected then yes surgery would be a definete option however that is not the case. Narcotics don't work on Nerve pain. All narcotics do is put her to sleep in pain and then she wakes up in more pain, so that is not helping either. Finding someone who specializes in Multiple Craninal Neuropathy is my next adventure. I have found none yet. Yes we did look into a pain clinic and that doctors words was once again i would not feel comfortable treating her. We live in Ky. Thanks for responding.
    Anonymous 42789 Replies
    • October 24, 2007
    • 05:10 PM
    • 0
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