Thanks for the supportive comments, everyone. My husband is so mad about all of this. He wants me to sue my surgeon. 
That won’t help me get better. I’m going to talk to my primary care physician this morning to see if she can help me find a new neurologist who has encountered this before and who perhaps has some way to reverse or stop the nerve damage rather than just managing the pain. After the iron treatments last summer, my iron levels got up to the low-normal range (from basement levels), but even with daily iron pills, the levels have gone down. When my blood was tested in July, my iron levels were low. In late August, the level was even lower. My B12 is low even with monthly injections. My D is low, my calcium is low, my blood sugar is always low, and apparently my blood protein levels are low (weird!). All of this, especially the low B12 and D, apparently affects nerve function.
Took the Neurontin last night and it wasn’t too bad. I woke up with mucous-filled eyes, which was weird and makes me wonder if the depressed central nervous system effect means I won’t blink as much? Anyway, I woke up feeling kind of like I’d taken a muscle relaxer. Got up and into the shower. The water on my arms and legs felt prickly like when the doctor runs a fork-like thing down your skin to test nerve function. It wasn’t comfortable. The other thing I am noticing is zaps, like little electric shocks in my wrist and calves. All weird but nothing I can’t deal with. Since I wasn’t falling down tired, I went ahead and took the next dose this morning as prescribed. I’m supposed to take it three times today so I need to figure out the scheduling. It’s been about 45 minutes since I took the pill this morning and I feel a little dopey, but otherwise okay so far.
ptlawmom
November 7, 2007 at 8:00 am
Thanks everyone for your kind comments. Rick, I probably didn’t explain myself well. By “zaps”, I mean electric shock sensations in the nerves in my legs and arms.
Rick Lax
November 7, 2007 at 1:50 am
Zaps?!?! That’s crazy. Never heard of that. Feel better!
Proto Attorney
November 6, 2007 at 3:40 pm
Surgeons, ugh. Sadly, too many are unconcerned with what happens after you’re off the table. If you make it off the table alive, then the surgery was a success, right?
Could maybe some sort of other expert help with the vitamin deficiencies? If that’s what contributes to the nerve damage, then it seems like that would be the first course of action. I agree with you, I don’t think just doping up to mask the pain is the answer if there is a way to stop the nerve damage from getting worse. Good luck in finding a new doctor, and a lasting solution!
Meg
November 6, 2007 at 12:11 pm
I know a lot about nerve damage because my mother was involved in a very serious car accident about 15 years ago and shattered her left arm. She’s on neurontin now (as well as a morphine derivitive patch and actual morphine for breakthrough pain), but she says the neurontin has made a world of difference. Your body will take a few days (or a week) to adjust to different medications, but eventually it will. Like I said, my mom takes morphine regularly (enough to probably kill an average person, or at least put them out cold), but functions fine because it keeps her pain under control.
Nerve damage is so tricky, and while I do support your decision to seek out another neurologist, there is also something to be said for just trying several different medications and seeing which work correctly with your body. There are lots of people who have to be on meds for the rest of their lives, and yes it sucks (and trust me, I have more sympathy for you than you can possibly imagine). Stay strong, explore the internet for as much information as you can to bring to your doctors, ask questions and challenge them (always!) and STAY AWAY from message boards about chronic pain and ailments, because some of those people ave good advice but they also tend to be depressing, whiny, and ridiculously misinformed about the state of pain management these days.
ptlawmom
November 6, 2007 at 10:20 am
Thanks Ana. I feel like I can’t really complain because I honestly feel like I did this to myself by having the surgery in the first place.
What’s insane about it is that I did it so that I could be healthier! I wanted to be able to have kids and run around with them, go bike riding, etc., which is something my mother could never do at a size 32. Kids used to tease me about her because she was so large and I didn’t want my future kids to have to deal with that. I’m just so angry that the surgeon glossed over the vitamin deficiencies as no big deal and easily managed with a daily vitamin regimen. Now that I’m reading more about it, apparently this happens a lot once 5-10 years after surgery but it’s not widely publicized or it’s dismissed as unrelated to the surgery (diagnosed as fibromyalgia or chronic pain sydrome). What makes me the most mad is that I am 28 years old and the doctors act like it’s no big deal to just stay on these medications for the rest of my life. These are hard core meds! What about having more children? I’m just so angry.
Monique
November 6, 2007 at 10:19 am
Sorry for the poor spelling and writing; I was trying to type at the speed of thought.
Monique
November 6, 2007 at 10:17 am
I’m glad your not in pain but be careful with all these meds. I have friend who struggles with a rare health condtion and was on so many medications at one time I swear they were making things worse with all the side effects of medicine.
She finally stopped taking the majority of them started doing more natural/organic solutions that helped so much. She is much happier, no pain and living well; her condition is in remission but she still has pain from time to time but nothing like before.
You might looking into natrual/orgainic options. I wouldn’t normally give that advice but I hate hear your taking so much medicine that could cripple your day. You seem be full of life you should be able to enjoy it without feeling “dopey”.
Take care!
Ana
November 6, 2007 at 10:10 am
I’m glad you’re dealing with this so well, but perhaps it’s nice to know that someone is walking around throwing a fit like a two-year-old. Next year you should get the blogging scholarship!