One year ago

One year ago, I thought my life was over. The pain of TN, the fear, the confusion and the anger was overwhelming. I was one of the fortunate ones to be accurately diagnosed only three weeks after symptoms began. After failure with most of the recommended drugs, I had Gamma Knife Radiosurgery five months later.

My first three weeks I thought wow, I am normal again. But then again I thought my life was over. The pain returned with a vengence. It was worse than it ever was before. I couldn't help but think maybe if I hadn't of had gamma I would be better off. I loved and trusted my neurosurgeon and his team so much that I did everything in m power to remain postive and patient. I thought if I heard "you are transistioning", one more time I would scream! But you know what, after two months on the highest dosages of meds that I had ever had the pain began to stop. It is now six months later and apparently I have fully transistioned. I am left with nerve damage that produces spider like sensations and some burning but none of the severe pain that I experienced before. I have to be careful with wind, vibrations and sudden temperature changes but I feel normal again. I am still on a moderate dose of meds but it is no comparison to before.

I guess my advise would be if you have had treatment, be patient and allow your body to accept it. If you have not had treatment investigate all possibilities and find a good doctor that will help you decide what you should do. We have no guaratees but each person is different and will respond in different ways. Take the chance. Trust you doctor and most of all trust God. We all deserve healing and I pray that it comes for each of you.

God Bless!

Sharon

Sharon, in reading your story on GKRS, I have to admit the returning intense pain that I have after three years is not anywhere near what it was when I had this procedure done. It controlled now with 800 mg of the Carbamazepine and I am thankful for that. During the three years I had minor jaw pain that increased in March of this year and the intense burning pain started up in May. My point is that Gamma Knife was successful in that I still only have about half of that pain level that I had before I had it. Peace, Min

I wanted to clarify, I had GKRS in February of 2008, and was free from the intense burning pain for three years. Min

Thanks Bobby and Min. I am on 200mg of Lamictal now. At one point it was 600mg and 40mg baclofen and percocet as needed. For now Dr says stay at this dosage for 3 more weeks and slowly taper off. THe hope is to be drug free. I guess if that doesn’t happen we may look at changing meds. I have been on neurotin, tegretol, lyrica, topamax all with no success.

Wishing you good luck Sharon, hopefully you won't have to try anything new. Peace, Min