How I survived, researched, and overcame Trigeminal Neuralgia

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!!!

Hi, I love your story. It is very similar to mine! I am also a teacher AND the neurologist and doc only had drugs to offer. The first drug stopped working after 3-4 weeks, the second drug made me CRAZY and DYSFUNCTIONAL . I couldn't do anything! During this time, I researched like crazy, talked to a couple surgeons then found a doc here in Portland, OR who specialized in TN surgery. He offered a procedure called radio frequency thermal surgery where he puts a needle in my face into the trigeminal nerve and fries / burns it .

My effected nerve, like yours, was the one along the jawline (mandible) but on the right side.

Now I have numbness of the muscles along the nerve but, like you, I laugh because it is nothing compared to that awful TN pain. Mine was exactly like yours...electric shock-like, sometimes lasting a few seconds or a few minutes. I felt terrorized by this pain. Was unpredictable and got worse and more frequent. I was screaming on the floor at night enough times to do whatever I had to to stop it!

So glad they found ways to stop it. I had the radio frequency surgery because there was a possibility it was MS related.

Bottom line, I got my life back and hope the nerve doesn't grow back ( they can grow back). At which time I will do this again.

Yes, research, research, research! Be your own advocate. You do NOT have to live with TN pain and you do not have to live a life being heavily drugged.

Alice

HI

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.

Hi,

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 ??

Is Dr Swaid at Brookwood or MCE? Thanks

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

Can you provide the doctor name please. I live in Southern Oregon.

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

Dr. Tymanski and Dr. Hodai in Toronto Ontario are excellent too.

How do you feel now after 4 years since Cyberknife ?

Do you think that Gammaknife wast of time?

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?

Hello, I too, was diagnosed with tn at the age of 29. And I too, was told that I was too young for tn and had alot of dental work, alot of examinations and MRI's. Because I was still young, my doctor, Dr. Shetter @ Barrows Neurology Clinic in AZ. recommended MVD (cutting the skull and inserting tyflon in between the nerve and facial bone) I immediately signed on, I was in too much pain and didn't want to go on living with the pain. The surgery helped. This was 15 years ago, this August. This was on my right side of my face. I was just diagnosed with tn on my left side of my face.( having tn at the age of 29, is rare, I was told, but, having it on both sides, is even more rare) but, of course it happened yo me twice. I'm scheduled for surgery in five days, MVD again. I hope and pray this time it is as affective as the first time. I have noticed that fifteen years ago tn was not as common as it is now. Back then I rarely heard of anyone else having it, now it seems to be out there alot. My pain right now is minor triggers(electric shocks) some days I can have 10 triggers, and some days I can have 50 of them. My neurologist is Dr. Shetter and he will be the surgeon again, this second time around. I got lucky and happy to find out he was still in practice. And you are right, about finding a good doctor. A experienced one, at that. My doctor is very good when it come to tn. My advice to anyone with tn, find a doctor who knows about the illness, you will know that they do not know too much, when they just send you home with meds. They should sit yoy down and explain the disease to you and your options. From my experience tn starts off with minor pains and progresses to excruciating pain. Thats why I told my doctor at my first and only appt. to go ahead and schedule me for surgery.

Hello anyone know someone good to go to in Chicago

Thank u so much for sharing this. Great story and I totally agree RESEARCH. Good luck 😀

Hello , 

Interesting to hear that progress is being made by some with Gamma Knife. I have a recurrence of TN after an absence of 10 years! I'm now 59 and had it previously for many years. Forgive me I'm not a Doctor but have spoken to a number of Doctors and specialists here in the UK. I must remind every reader there are significant risks with some of these procedures particurly MVD which has a Morbidity risk as does any Inter Cranial procedure. I realise as a sufferer that for some there's no option but sadly none of these procedures come risk free. 

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

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

Brookwood

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