Irv,
Have you gone through similar surgery in the past? If so, what was the result? Former results or outcomes gives a clue to what it'll be like the next time. The after-effects of surgery don't always have to be the same. The docs can adjust pain meds, etc.
Are your doctors willing to work together as a team to manage your after-care, to minimize pain, recovery time, seizures? It sounds like this would be a team effort.
When I have a tough decision to make I use some decision tools.
If there are reasons or fears why I don't want to say "yes" to something that would ultimately benefit me, I do a problem-prevention chart. I list all the reasons why I don't want to do it, then beside each thing I list what I can do to minimize it or prevent it from happening altogether. In the end my answer may still be "no," but I know it isn't based on blind fear. I've analyzed the situation, calculated the risks/returns, and then made a decision. I asked friends and family to help think up solutions.
I also use the best-worst-most likely tool.
- What's the BEST outcome you could expect?
- What's the WORST outcome you could expect?
- What's the MOST LIKELY outcome you could expect?
I also use a "Describe It" tool. Sit down with pen and paper and describe your life if you said yes. What does it feel like, sound like, smell like? What can you do and not do? What is the state of your body? What help would you need and what resources would you have? What would your life be like? Use as much detail as you can. Then switch it around and describe your life if you said, "No." Then look at the two descriptions and decide which life you want to lead. It's not always that cut and dried, but it helps clarify things for me.
An example for me is weighing the decision of whether to have a shunt implanted in my brain to drain CSF. Two of the major fears for me was a non-functioning or ineffective shunt that can't be removed (happens 50% of the time), and the surgery scrambling my brain. My doctor (PCP) helped me with #1. She said not all medical devices have the same track record for success, and that with some detective work I could get the info from the FDA. Then I could ask each potential surgeon what brand of shunt they use. She also helped with #2. She said that who the surgeon is makes a huge difference, and if she was having the surgery there is only one guy in town she'd let touch her. If I do it that'll be my doc. For now I've decided not to have the surgery, if it comes to that. There were more negative things I didn't write about here, many of which have no "fix." They just are what they are, and they aren't tolerable to me in the long term. There are still less invasive solutions to try first.
Anyway, we are all here to help. Friends are important sounding boards, and so are your docs. When it comes to thinking up potential "fixes" for potential problems, we might be able to help, too. The strength of all of us are supporting you.
We can do that here.
