Hi all... Well, I've been home now 20 days from the hospital (after having the pump trial, followed by having spinal fluid leakage - which turned into meningitis, followed by a 20 day hospital stay...to get pain relief/supportive care for the meningitis...do I need to comment??). Anyway, I'm just now ready to talk about it :) I had said I'd post about my experience; it seems there are several people that are making decisions re: the pain pump - be it the trial or implantation.
I have to put the disclaimer that this is just my experience from what I've been through. So, please take it for what it is worth. That being said, I had been waiting for the pump trial for almost two years. That was about the time my PM doc suggested it; I just wasn't ready. Did about three months of research; decided to do the trial; went through many ups/downs w/ our health insurance; moved to a different state - which basically had me starting over again. So, went through the trial last month (it was deemed "successful"), and I'm just trying to figure out what to do about getting it implanted.
I entered the hospital on a Tues afternoon and went home Friday morning. The actual procedure to put the cathetar in my back was more "involved" than I thought it would be. I had the impression that I'd go in and have the equivalent of a "I'm about to have a baby..." epidural (sitting, hunched over, put the needle in, etc). Nope. It was done in a surgical room with a team of about five people. I got onto the procedure table and laid on my stomach, my face into the "hole" thing (like you are getting a massage). My doc made a small incision and there was lots of prodding around; took a lot longer than I thought...when completed, I went into the "recovery" area...I got a dose of fentanyl; some Ativan to relax me; and they taped me up like there was no tomorrow. They don't want the cathetar to come out...
Now, I didn't get a headache until the next evening. And I suffer from migraines so.... Basically, I didn't start off with a "spinal" headache or anything. I was, however, "uncomfortable" from having the cathetar put in. BTW, I did the trial w/ Dilaudid, not morphine (due to tolerance issues). The pump was started with a decent amount of Dilaudid (again, due to tolerance issues). about every six hours (something like that), my doc pumped up the amount. I took my oral meds on Day 1; on Day 2, I took my AM dose, nothing oral for my PM dose.
Towards the end of the day, on Day 2, I started getting a headache and some neck pain. The stiff neck/neck pain from meningitis is remarkable; if you've had it once (which I had it one other time, after some dental work back in 1999) - you DON'T forget what it's like...I had the gut instinct that was what was happening. But the nurses, etc. just thought it was me adjusting to the pump, and decreasing my oral meds. I even went home on Friday morning. But by Friday night, I was hysterically in pain and my husband drove me back to the hospital at midnight... I got a spinal tap and was admitted.
So, my final thoughts on the trial -
--It was more involved and I was less comfortable than I thought I would be. For some, it seemed to be a relatively easy, GOOD experience where they got pain relief for the 1st time in years. Again, it's muddled with the fact that I got ill from the procedure; but it still would've been more involved than I thought.
--If you've ever been hospitalized and hooked up to a PCA, it was similar to that - in terms of your equipment and such. BUT the meds did NOT (for me) feel like getting IV Dilaudid. I did get some relief as they raised the dose up. I could see how it would work, with patience/the correct, titrated dose and so forth - and it would be great to get off the oral meds, have less side effect, less medication going through my body and so forth.
--I'm glad I had it done, even with everything I went through. I can see that - for the right person - it works; no doubt. I still think I fall under that category. BUT, I'm now scared to death. I want to have it implanted and get on with things. However, what if I have it implanted - and this whole thing happens again? There's no answer to that question; my doctor says it obviously could happen again...there's just NO way to know. Most likely - no but.... On the otherhand...I'm the ideal candidate for the pump. I've been on every medicine there is; I'm on huge oral doses w/ an increasing tolerance; huge pain issues, hypertension (my cardiologist is all for me getting the pump; decreased pain = lower BP) and on the list goes.
Well, if you've followed along - you are awesome! Thanks for reading. Like I said, I promised I'd post my experience. If it just helps a couple of people weigh the pros/cons, I'm glad. My experience isn't to deter anyone from having it done; I went through it and I'm still considering the pump! But it IS a surgical procedure, there are risks (as with anything, I guess..) and so forth.
Any thoughts/opinions are welcomed. I'll keep you posted on where I go from here. Thanks to everyone for this supportive board... :) --Tina