The reasons I am going to have the MVD (microvascular decompression) surgery are as follows:
1. This procedure does not damage the trigeminal nerve as the two other radiation based treatments do. It's a question of having facial numbness instead of pain. The MVD leaves the nerve intact.
2. The MVD has been used the longest to treat TN and is considered "the gold standard." It has an approximately 90% success rate initially and 5 years out the success rate is still as high as 70%. Success is defined as no pain/no medications.
3. Because the radiation based surgeries cause damage to the nerve, doing an MVD after one of those is not as successful (for instance, if the gamma knife worked for 1-2 years before symptoms came back). Also, a patient is allowed only to receive two gamma knife surgeries--too much radiation otherwise...
4. I'm young for this disorder. At 42, I hopefully have many years to live and since this is a chronic condition, I want to do the thing that has the most chance of success for the longest period of time.
5. The medication route is not working for me. I am now on three medications for this, at high doses according to my neurologist and the handfuls of pills I swallow 3x a day. The meds have made me less than myself. Aside from the sedating effects and the memory and cognitive interference, it's hard to describe how the meds subdue me --- in terms of my personality, motivation, self-esteem, humor, and all of that. There are some other med options to try eventually if needed in addition to what I'm taking, but let's not forget that I am not working, have a safe zone of about 15-20 miles from home that I can drive without nodding off, and also there are longer term side effects of anti-seizure meds that concern me.
This is not the most concise or well put-together posting, but thinking about this (as I have done for months now) turns me in circles. I am not thrilled about having this surgery because it sounds really difficult to go through. I'll write about it another time, and hopefully you will not read that post while you're having your breakfast. But -- Jeff and I really do think I need to do this surgery for the best chance at getting my regular life back.
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2 comments:
Grueny,
I for one am feeling good about your decision. I know it's got not much to do with me, but from what I have read from what you have posted and my lame forays around the internet, this seems like the most obvious way to go. You are too young for this, and if I were jou, I would make the same choice knowing I was on a high amount of drugs with a less than lovely quality of life. Right now you have been dealt "the shitty kind". It's like being a glazed donut when you know that there are crullers and Bavarians within your reach.
Think positive, my friend, and think of this as a step towards recovery and not a scary outcome.
It will be so.
Lynn,
Just from a cursory glance at the articles on the web about the surgery, it sounds like an excellent surgery for you...with a very high success rate and a very low rate of side effects, esp. for those who have not had TN for a long time, like you. You are young and healthy and you will go into the surgery with those very significant advantages. You will overcome this!
Heather
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