I'm waiting for Neurologist appointment

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My Mom had Trigeminal Neuralgia so I may be more aware of my symptoms earlier than most people would.  I have been getting a hot feeling that travels over right side of face along with pins and needles.  It either travels into eye area or cheek area or lip area.  It is not painful (yet).  Sometimes I get a shock feeling on the right side of my nose.  Looking for views on Gamma Knife.  I have heard that early intervention is more successful at curing TN.

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  • Posted

    I have heard that too. I have also had Gamma Knife. But, you must of course start with a visit to a Neurologist to confirm what you suspect is the cause. Ask your Gp for a referral. They may put you on Tegretol while you wait as

    Tegretol is a good indicator and will give your Neurologist something else to go on besides your symptoms. While you wait, keep a pain diary. It can be invaluable as it takes your report to the Neuro out of the gray and into a firm report of what has been happening.

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  • Posted

    My TN surgeon did not recommend Gamma Knife and I saw this same opinion also with another prominent researcher.   However I am also interested in the opinions of others on this procedure.  The most effective surgery is believed to be MVD which I read works for over 90% of people and will last 10 - 20 years.  I had this at a year in but unfortunately I was one of the 10% that it did not work for.  I went back on meds and then 2 years later had Balloon Compression which is an out-patient and no pain.   I think there is some substance to your view that early intervention is more successful at curing TN, but my advice is to carefully check all the possible procedures.  You also might want to try meds for a while.  Some people never have to have surgery.  Good luck!   
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  • Posted

    Hi

    My Dad had 6 years of increasing pain from TN. By Christmas 2015 the pains were totally unpredictable (before that not moving and sleeping meant no pain) and the carbamazepine dose was upped to a level that made him sleepy and gave him double vision but stil didn't stop the pain.

    I booked him in with a neurosurgeon who did an MRI, that clearly showed Classic TN.

    The next week he had gamma knife and is now completely pain free and is gradually reducing the tablets. Dad had the surgery privately but I was told that the hospital accept referrals directly from your doctor and there isn't much of a waiting list!

    Good luck, it's a scary road. I'm just hoping that my Dad stays pain free.x

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  • Posted

    Hi! I've had one horrible extreme attack back in August and I have one or two mild attacks per month that last a few days each. I'm in the middle of a moderate attack right now. I saw a neurosurgeon last month at the Mayo Clinic. I had an MRI and an MRA. He suggested that since the pain is bearable for now that I go with glycerin injections or botox. I'm holding off for now. Good luck at your upcoming appointment!
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    • Posted

      I was also wondering about Botox, but Dr's seem to really like keeping patients on drugs.  I saw my Mom have adverse side effects to drugs and still have breakthrough attacks.  She was scared to go outside because of the wind, brush her teeth or go to the dentist. The balloon compression worked for her and was a day surgery procedure.  She never this done until she was 82 with dementia and was fine until she passed away 7 years later. 
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    • Posted

      I am under the impression that Botox has to be re-done at intervals and is expensive. I think different things work for different people. It's what makes Tn so difficult. For some strange reason, mine has suddenly stopped being painful. I will admit I am on high doses of medication but i was before as well and still had the pain. My doctor says "if the dose you are on is working, leave it alone" in response to my query as to whether I should go lower. Please get back to us with the results of your Neurology appointment.
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