How I survived, researched, and overcame Trigeminal Neuralgia

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I'm going to tell my story so it will be kind of long, but has a great end ing..promise;-). In 2011, at age 29, I noticed a sharp pain when I brushed my teeth. At the time, like many others, I assumed it was dental related. I went to the dentist and they found nothing wrong. As the weeks went on, the pain started happening when I talked, brushed, washed my face, clenched my teeth, slept, smiled, if the wind blew hard, etc. It was the WORST pain of my life. It felt like an electric shock going off in my the left side of my face by my jaw. Sometimes the pain would be just a quick stab, and other times the pain would vibrate through my face and all I could do was stop all motion and wait until it passed. I would even wake up out of my sleep sometimes from the pain if I accidentally turned on my left side. The pain would last for weeks then go away for a week and I thought it was over. BIG MISTAKE! It came back with a vengeance.

After many painful days and nights, I started looking up my symptoms on the internet (yeah for Google) and the same diagnosis kept coming up..Trigeminal Neuralgia. I was confused because although my symptoms matched, it said that this disease usually showed itself in older individuals and I was only 29. I made an appointment with my physician and after cruelly poking my facing with his finger after I told him my symptoms, he confirmed that although it was rare for my age, I had TN. He prescribed me a steroid prescription and sent me on my way. No further explanation. If I had not already researched this, I would have been lost. So I took the pills, and besides making me gain a couple pounds, the pain remained. By now, I had researched so much about TN, I felt like an expert. I called my physician and asked to be referred to a Neurologist.

Long story short on this part, Before the Neurologist saw me , he sent me to get MRI which was clean so no MS and he spent all of three minutes seeing me, told me I had TN, gave me a prescription for TEGRETOL, and sent me on my way. No further explanation about my disease. He failed to tell me that the Tegretol would make me CRAZY!!!!!!!!! I am a teacher and the Tegretol had me so nuts, some days I couldn't even function. I have a 2 1/2 yr old and between the Tegretol and pain, I'm sure I was a pain for my child.

The Tegretol did help a little but I could not see myself having to live the rest of my life on Tegretol. It would have been HELL!!! I had already researched Gamma Ray treatment and surgery to cut skull open and put something in between nerve and blood vessel. Both did not appeal to me.

THIS IS WHEN IT GETS GOOD!!! I live in Alabama (US) and one day when I was researching, I saw that a Neurosurgeon in Birmingham, AL, Dr. Swaid N. Swaid does something called CYBERKNIFE TREATMENT. CYBERKNIFE is a non invasive radio surgery that is used to treat everything from cancerous and non cancerous tumors and TRIGEMINAL NEURALGIA!!! It beams a high dose of radiation to the area that precisely goes to the spot needed. I felt like this was my only hope. I called to make an appointment and luckily, a referral was not needed since my Dr. and Neurologist were of no help. I went to see Dr. Swaid the next month and he was the first Dr. to sit down and explain exactly what I had and the treatment options. Because of my age, he thought the brain surgery was better but I told him that I would rather do the Cyberknife. The brain surgery, besides be invasive, would make me have to take 2-3 weeks to recuperate while Cyberknife, I would go into treatment 1-5 times, depending on my xray of my nerves and lay on the table for 45 minutes and left the robot do it's thing and get up and be just fine. No pain, no cutting!

Made my appointment for Cyberknife, went in to talk to Radiologist who told me Cyberknife was just as good as the invasive method. He actually drew me a picture to describe what was going on in my face and told me that I was suffering from Trigeminal Neuralgia in my 3rd trigeminal nerve (the one by the lower jawline). After they looked at my

Xray, they decided I only needed one treatment. They made a mold of my face that is like a net they had to put on my face to keep me prefectly still. I laid on the table, listened to the music of my choice, and listened to the robotic arm buzz over my face for @ 40 minutes. Got up and was on my way. I was warned that the results would not be

immediate. The radiation slowly kills the nerve that is being affected. But month after month, sure enough, the pain became less and less. I went to see Dr. Swaid every 3 month for the next 9 months. He said by the 6th month, if the pain was gone, most likely it would be gone forever. The only side effect I have is that sometimes when I chew on that side of my face, because the nerve was killed, I get a little painless tightening in my jaw (like lock jaw) for a few seconds. I laugh because I'll take that anyday over TN and it only happens usually when I chew something really tough on that side

I have been pain free for about a year now but I'll never forget the worst part of my life. I encourage anyone dealing with TN TO DO YOUR RESEARCH and do what is best for you. If you have a Hospital that offers Cyberknife in your area, I encourage you to look into it. Never give up hope that you can't overcome this and know that there are others that have had to deal with this too....You DO NOT have to settle for taking medication for this disease for the rest of your life! RESEARCH, RESEARCH RESEARCH. God Bless!!!

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  • Posted


    i so pleased this had a positive effect on you my son has had Gamma ray treatment is this the same as cyber knife have been told it could take up to three months before we see any improvements. Am trying to stay positive but he has had this for three years including having gone through the major head surgery MVD and is still on all the drugs a year later.

    • Posted

      Gamma Ray is a little more invasive than Cyberknife. I hope your son is feeling better!
  • Posted


    My father is also suffering from Trigeminal Neuralgia and we are planning to go for Cyberknife... How do you feel after 3 years of treatment ?? Did it re appear ??

    • Posted

      mine never went away from gamma knife, but some have gone 10 years or more without it coming back!
    • Posted

      I'm still pain free! I had a small pain a couple years ago and thought that I would have to have another Cyberknife treatment but the pain ended up going away before my appointment. Thank God for Cyberknife
  • Posted

    yeah, its alright IF you have the money to do it.
    • Posted

      Thankfully my insurance paid for the treatment. I had to pay no money out of pocket. Unfortunately, it's like anything other ailment or disease that needs to be treated by a doctor. Insurance is definitely a must have
  • Posted

    What do you do if you don't have insurance? I pretty much live pay check to pay check. I'm at the point where I would rather die than deal with this pain anymore. I am taking Trileptal, but it seems to be wearing off. I can not afford to see a neurologist, I have to go through the local clinic. Any suggestios?
    • Posted

      I honestly don't know but I wish I did. Cyberknife was over $20,000 and thankfully my insurance paid for it. Because insurance companies are not able to deny you for pre existing conditions , maybe you can get some inexpensive insurance that might pay for a neurosurgeon. Have you tried to qualify for government assisted healthcare in your area? They could refer you to a neurosurgeon. Don't give up hope! Just research online and see what you can find
    • Posted

      Tracy, i wwon't ever say that I completely understand what

      you're going through, but I know how stressful it can be to not have the insurance coverage, and have the weight of financial stress on top this already painful disease! Furthermore, when we get to the point where we would literally do ANYTHING to

      get some relief! And so even if I can't help you answer your

      questions,iI hope you don't mind me saying these words:

      You are not alone! You are a very important member of this

      group, and you have a beautiful spirit<3 there="" are="" people="" who="" love="" you="" and="" would="" do="" anything="" to="" try="" to="" help.="" please="" don't="" ever="" give="" up,="" ok?="" i="" know="" it's="" not="" easy,="" and="" the="" pain="" can="" be="" beyond="" unbearable,="" but="" we="" will="" beat="" this="" thing!="" the="" more="" we="" share="" our="" stories,="" speak="" up="" about="" our="" personal="" experiences,="" and="" stay="" strong="" for="" one="" another,="" the="" better="" chance="" we="" have.="" with="" all="" of="" our="" voices,="" it="" seems="" impossible="" that="" the="" doctors="" can="" just="" ignore="" all="" of="" us.="" none="" of="" this="" is="" easy,="" but="" it="" has="" to="" be="" worth="" it!="" please="" remember="" how="" strong="" you="" truly=""><3>

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