I haven’t been online since surgery except once. But Sarah Hobbs has been great in calling and getting updates. I had MVD surgery on 27 Apr 09. The surgery went really well and I didn’t suffer any pain from the surgery. I did have some numbness (still have some) on the back of my head so I’m sure that is the reason for no pain. I started having some subtantial pain relief from the TN pain about the end of June. The gains since then have been small but the pain doesn’t compare to prior MVD surgery. I have only been able to decrease one of my meds by a little but the pain is so much more controllable. Although I have pain every day, most days the pain isn’t bad. I consider the surgery succesful but of course I wanted to be medicine free. That hasn’t happened but I’m still praying that will be the case. Anyway I am thankful for what I do have and that is life again. My friends are so amazed at how much better I look. They tell me constantly that I look so much better. I guess the constant pain showed in my face. I keep all of you in my thoughts and prayers. I wish all of us could be pain free. And I only wished I had had surgery earlier. Most of my pain I do have is the atypical type. I didn’t move to atypical until December. I wonder what you all think about having surgery early in the course of the disease. I wonder if I had had the surgery earlier, would I be virtually free of pain.
Hello Liz!!
I am glad to you are doing better. May prayers stay with you. I am happy to read that you are getting your life back!!
I know the feeling. Every day, I discover new hope and possibilities in my recovery. It is exhilarating to say the least. I too often wonder about that same question: What if the surgery would have been done earlier in the course of my experience with TN?
It is an individual complexity with no precise answers and many paths to choose. My neurosurgeon recommends MVD when all other causes for pain are ruled out and medication options fail. He supports a “sooner than later approach”. Nevertheless, he readily recognizes that IS and MUST , be an individual decision. I agree. I believe it is much like life, to everything there is a season. When we are ready to accept the answer, good bad or different we are in our season. My time arrived and after many rough seasons, I seized the opportunity. I weathered the best and the worst of times.
The key is enlightenment. We make good decisions when we have enough information to measure the outcomes and accept responsibility for the results of our decision. I know personally, sometimes, I think have enough information to make a really sound decision only to turn the corner and decide I made the most asinine choice ever. Opting for MVD surgery turned out to be a superb decision. However, I never forget the old saying; “Everything ain’t for everybody, but there is always something for everyone.”
Medicine is a practice and not an exact science. There are many roads to chose and no one option is “guaranteed” to be the absolute right choice. We are all continually learning to see our pain. We are always changing lenses. We as the sufferers and they as the healers must be open to possibility. We are both student and teacher. Faith and Hope are on our constant allies.
Peace, tenderness, continued healing and lots of love sent your way,
~Aleshia~
Thanks for posting on my site and I will continue to pray for “Pain Free” for you.
Larry
Liz, I am delighted that things are going so well for. Don’t second guess yourself as you followed exactly the right road to get where you are. I was told a while back that if we are going to deal with matters that include pain you reach for the nearest solution. You are now in a place where others are striving to reach and you are the one who can direct them because you have been there. Sometimes I mumble with my fingers so hope you understand what I say!!
Gary
Thank you for sharing with me your pain free sensation. I am glad you’re doing better. I agree with Larry Hoff you are now where others are striving to be for you can direct their hopes and fade their hesitatations. Please keep us informed on your pain free new life and enjoy it. My prayers, in this Holly month, will go to you.
Ben
As for having the surgery early, I suppose that is up to the opinion of the neurosurgeon. But I’ll say this. When I got this TN back in '99 I had never heard of such a mess. So I read all I could find online and it was not a pretty future. I read about the MVD and the Gamma Knife, injections, acupunctue, etc. After wrestling those through my mind the MVD and the Gamma Knife were high on my list, but, at the time there were only 100 GKs in the whole world. I pretty much settledf (in my mind) on the Gamma Knife as it was the newest thing on the market…a real Star Wars looking thing…that is, if and when I needed it…and if one was within reasonable distance to me. When I moved to B’ham and after 2 or 3 visits with my neuro, and upping the dosage of the Tegritol she said you know we have a GK here in B’ham and if you decide to quit fooling with this and give it a try let me know. I didn’t even hesitate. I said do it. I knew the prognosis was increasing severity and frequency. How horrible ! So, if the GK fried my brain, so be it. I’m not going to live forever anyway. Point is, I had the TN for about a year, and in that year had moved to B’ham and found out the GK was available right here in town. I did the GK and went 10 years without pain. So, in my casse I opted for GK “surgery” early in the TN experience.
Jimmy,
I am glad you are doing well. I have read that MVD has better outcomes statistically if done within 5 years. But the opinions of the surgeons differ as far as which treatment is best. That is why the decisions are so difficult.
Liz