There is hope - never give up

My TN story is not much different then others. In December of 2011 I was holding my daughter watching t.v. when the first pain hit me in my lower teeth. I told my wife that I must have a cavity or need a root canal. As the evening went on my pain increased and it moved into all three branches V1, V2, and V3. I’m a 6’ 3" 250 lbs former football player and Infantry Soldier. I grew up in a poor and rough neighborhood and have felt pain. However nothing had every felt like this, and the pain took me to my knees. Four emengency room visits later I was diagnosed with Type 2 TN and Glossopharyngeal Neuralgia.

I found myself going to a Neurologist who I feel was just treating me with pills and not trying to fix/cure my problem. I continued to have pain and was feeling horrible from the medication. My triggers continued to increase with wind, cold weather, hot or cold drinks, brushing teeth, spicy food, as well as I had a possitional trigger where I could only sit on a hard kitchen chair or stand. I would stand in our kitchen and watch t.v. with the family as they all sat in the family room. I found myself only eating peanut butter sandwiches and driking luke warm water. Also any time I tried to do research online my TN would go off.

At this point and time I was in a very dark place. I was not myself and now that I look back I think I was sinking into depression.

I started having my wife doing research on line and she found Dr. Ken Casey in Trenton Michigan (734-642-2742). I made an apointment with him to discuss the options for TN. He was fantastic and if there is any way you can get to him I highly recommend it. He spent over an hour with me on my first visit and explain all the drug options, RF, Glycerol, Balloon, Gamma Knife, MVD and their pro’s and con’s. When we were done I asked him what I should do. His answer was “what ever you feel is best for you”. At first I was mad because he wasn’t giving me an answer. He explained to me that he can not tell someone to have brain surgery. It is up to each individual patient to decide on how they want to be treated. With those words I understood where he was coming from.

I have an engineering background and the technical side of me said that althought the MVD was the “biggest surgery” it was the only one that tried to fix the root cause of the problem. After getting a second opinion from Dr. John Tew in Cincinnati Ohio, (513-569-266) I decided to have an MVD in April of 2012. By the way Dr. Tew and his staff was great as well. I can not speak for his surgical skill but I will say that he answered all my questions and took his time as well with me on my visit.

I had my MVD surgery on April 4th 2012 by Dr. Ken Casey. Everything was going good until three weeks post op. I started having pain again so we increased my medication to its highest does yet. I started sinking back into depression becuase I was afraid it didn’t work. The medication got the pain under control and I visited Dr. Casey a couple weeks later. I was pretty down and out at this point. He asked me if I had any hobbies and I told him that I was a coach. Although I felt bad he told me to go back to coaching and do as much as I could. This was a turning point for me.

After all that background this is the point that I want to make to anyone who is new to TN or struggling with the decision of the MVD. It is my opinion the MVD is currently the only way to attack the root cause of TN. Yes, I was scared to have the surgery but I knew that this was the first step to recovery.

Like I said before I had my MVD in April of 2012. It is now January of 2013 and I am 90% pain free and I dont take any medication. I am feeling like my old self again and I know that I will be fine. I mentioned that getting back to coaching was the turning point for me because being around freinds outside of the home is great for healing. You must stay positive live your normal life. I felt sorry for myself for a long time and it was not doirng anything to help my body. After I got my mind straight my body started healing and I slowly weaned off all medication. Just know that there is a huge support group out there for you and we are all behind you 100%. There are positive outcomes to TN and you can do it.

“Never, never, never give up” Wintson Churchill.

God bless you Mark! I try to do what I normally do also, although there are days or a week at a time, that I am limited. I am going to see a neurosurgeon on Wed. and I am hoping that I can get on a better med or combo of meds that will keep me as pain-free and lucid as possible until or if the day comes that I HAVE to have the surgery. I am TN 1. If the day comes, I will do it.

Thank you for posting, needed to read about HOPE today.

Great post. I've been there and can really relate to your story.

Thanks so much for this story, Mark. I am newly diagnosed - experience my first horrible pains 2 weeks ago and got my diagnosis 1 week ago. From the first day, I resented being put on drugs that don't even control all the pain. I read everything I could that first and second day about this disease and was so disheartened by the prognosis of meds working less and less, pain getting closer together, medicine cocktails, invasive treatments, etc. I am only 44 with this and I was mentally fast forwarding to me in 20 years, at 64, being in a state of constant pain that meds barely touch. This is not a "solution" at all so I immediately looked into "fixing" this problem, not just medicating it and MVD, though the most invasive solution, looks like the best option to me. My insurance will make me wait 6 months after diagnosis, trying meds, etc. before they will pay for the surgery. After my anesthesiologist appointment to go over all the pain management, I will visit the neurosurgeon here, highly rated, to talk about the surgery and to make sure I am a good candidate. I think that for me, that is the way to go.

Thanks again for your story. It really inspired me to press on.

Great story. Congrats on doing soooo very well and being soooo positive. Thank you for sharing.