Seems like "Groundhog Day" (Please help/advise)

Hi...My name is Jodi and I this is my first post. I am searching for answers as many of you are. I will make this as short as possible, please bare with me.

My story with TN started in the beginning of 2001 while at work when this lightening strike came from above my LEFT ear, across my eye brow, and straight down into my eye teeth--I will never forget that pain. I dropped the phone and hit the floor. Of course, the dentist was the first place I went. I was living in VA at the time and the dentist that I went to was in a little small town. He took x-rays and couldn't find any cause for alarm there. He did tell me this "Don't be alarmed, but I think you have what is known as Trigeminal Neuralgia. Not long ago I went out of the country for a seminar on this so that I would be able to work on patients teeth without causing a flare up". He did explain briefly then told me which steps I should take to make sure that was what I had. So....

On to the ENT, then the Neurologist, more testing and x-rays/mri's done. By this time the shooting pains are in all three branches on the Left. All of my tests showed nothing. Over the course of the next 10 years my TN was bilateral and in all 6 branches. I saw over 20 doctors including Neurosurgeons. All of their testings still showed nothing was wrong - NOTHING....Ugh! I was put on a ridiculous amount of medications, in extremely high doses, that they constantly changed, which in a short period of time ultimately put me in a semi-comatose state for most of that time. The medicine made me oh so sick that I could not eat, food looked horrible, I went down to 107 pounds (at 5'9" that was terrible). I was sleeping up to 20 hours a day, needing help walking (often having to be carried). Life was not good to say the least! All of the doctors that I saw would tell me a list of things that you all have heard...."There is nothing we can SEE on any test results", or "I am sorry to tell you this, but you just need to accept the fact that you are going to have to live like this for the rest of your life", or "I have never seen a case like yours, you are so outside of the box that there is nothing we can do for you", and that list of BS goes on and on. Hearing all of these over and over added to everything I was going thru was just unbearable. I had 2 young children that I could not even take care of. I missed so many years and parts of their lives that I will never get back. (I have since delt with those feelings and emotions though, thank God).

At some point I had a short somewhat of a remission, where I was taking less medication but able to do things. This did not last long. TN Strikes Again and so much worse. And back on all the crazy medicine, getting sick, losing weight...and of course all of the tests were the same - "We can't find any thing wrong". The pain was much stronger on the Right 3 branches this time.

Thru one of my mamas friends, we found Dr. Ben Carson at John's Hopkins in Baltimore, MD. I just looked up their number and called (what did I have to loose, right?). The lady asked me to fax my records up to them and they would "get back with me". I thought yea right, how many times have I heard that one. In less than 48 hours I received a phone call and this is what Dr. Carson's Assistant, Carol, said "We have reviewed your case and you have Classic TN and we can help you"---I hit the floor!! I did ask her to repeat herself (haha) I really couldn't believe it. They couldn't believe how much medicine I was on, not only was it not safe, it was life threatening. So they chose this procedure as one should wake up painfree and be able to get off of medication in a quicker fashion.

Dr. Carson did a Glycerol Rhizotomy on September 27, 2011 and when I woke up--NO PAIN for the first time in years although I did have complete numbness on that side. It was amazing...I had my life back!! And I was given 2 wonderful years...I moved to Ohio where I have family and I am closer to where my children go to college, I have a job that I love and was introduced to an amazing man that I am in love with, I have been lovin' life....until TN Strikes again and worse than before. After losing so many years of life with family already (plus divorce), my identity, jobs, and friends I'm not ready to go thru this again. But here we go...


I had Perc. Radiofrequency Rhizotomy (V1 and V2) in Dec. 2013, left with complete numbness of entire side, including my throat, plus painfull burning from eyebrow down, including tongue and lips, and my cheekbone and jaw feel broken (we know it is not). Then 4 weeks out I stated having lightening bolts in V1 and also pain from above ear to eye, across cheekbone into nose (even though it is numb). Like it is shooting but the pain is somewhat less due to the numbness. Surgeon says he has never seen a case like mine and really doesn't know what to do with me. He upped my meds and said see you in May at your Post-op appt.

I am wondering if other people that had that the same procedure, what their side effects were and recovery, etc. As I see, most go back to work after a week. I am not quite 8 weeks out but cannot work, am fatigued and on meds again. Getting ready for my FMLA to be done on Tuesday and will probably lose my job. Very frustrating!!!

I just started seeing a UCC, Thanks to talking to Maggie and Tom. I have had 3 adjustments and I have noticed the lightening bolts have settled down, everything else still the same.I do not know what to do. I have tried several creams, not helping either. PCP is running tests, and put me on Prednisone in case there is inflammation.

Thank you for reading this really long story (if you are sill here :)) Any help will be greatly appreciated!!

Wishing many painfree decades to you all!!



I am so sorry for everything you have been through. I wish I had advice for you but I don't. I have Atypical TN and my experience is absolutely nothing compared to what you have been through. I just wanted to wish you luck on your journey and let you know that I read your story and my heart breaks for you and your family.

If you were my sister -

I would have you send ALL your info to Dr. Ken Casey. Trenton Michigan.

He will personally Email back and forth a few times.

Since he is the longest living guru still doing MVD and other procedures since 1970s,

contacting him puts great odds in your favor.

Nothing to lose by seeing what he thinks can be done for you. : )

He literally wrote the book - has had his hands in thousands of heads!

Let us know how your journey continues!

I only had 1 branch, 1 side, but his MVD got my life back - I was looking at disability.

They got me in to see him within 6-8 weeks for surgery.

But you are closer to him than me - so you could get a consultation in person by driving perhaps!

Jodi, phew!!! What a lousy TN history. I wish you well with your quest. As well as K.C’s advice, I will suggest you write to our site expert RED LAWHERN. He is our resident TN expert here!

Wow you have been through a lot! Are you still in Ohio? I go to a pain management doctor at Cleveland clinic. His name is Dr. Katyal. I am very happy with him. I have been pain free for 2 months since my nerve block. I’ve even stopped one of my meds. Just a thought… Good luck!

Jodi, your story scares and inspires me. Your pain must be so incredible and yet you have survived and continued. Life as you wanted and knew is gone but you still hope that the future will be better. Seek out Dr Casey. As KC Dancer said, he literally wrote the book. One step at a time now. I pray you have many pain free days ahead.

To "Just Jane", "KC Dancer", "Jackie", "Kelly", and "Patty"

Thank you for reading my long story, I tried to keep it short, but it just kept rolling out. Also, Thank You for your advise and kind and compassionate words! They truely mean alot when your getting bashed in the face everywhere else.

I will be contacting Dr. Casey for sure. I have seen his name popping up on here many times - I did not know that I could contact him without actually having to make an appt. and driving up there to meet with him in person. So that is a huge help! Although I have to admit, the thought of MVD does scare me just a little. But, then again, reading that continual rhizotomies, once you have the burning, only gets worse...Ugh...I can't imagine worse.

Yes I Live in North Canton, Ohio. It's about 45min (south) give or take from Cleveland. I will tuck his name in my pocket as well. I have only drivin my car 3 times since the middle of November, so it would be hard to get there right now. So glad you are having such good luck Kelly!

I will send a message to Red too, any thoughts/experience is most welcome!!

Thanks again to all of you....Enjoy your day and wishing ya'll painfree decades!!