Pump Trial (UPDATE)

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

Pamela - Your ongoing encouragement always helps me.  Thanks :)

Yep, had the psych clearance about 18 months ago.  Basically they want to make sure you have realistic expectations and that you understand that you will be having a "foreign" thing implanted in your body.

Re: trial - it started at 3pm on a Tuesday; but I was hospitalized for the whole trial -- until Friday morning.  I know some have a 1 day trial, or even a "bolus" of meds...  What does your PM doc want you to have? 

What else?  I can't even think.  I was up all night, dealing with pain issues - which really made me want the pump implanted....

More later! --Tina

Hi Tina,

WOW, what a story and an awful thing to happen to you. Two times having that crap, scarey. But, I am reading many positive things in your post concerning implantation. Kudos to you for having the sense not to blame the other problem on the pump, so many people sometimes can get that mind set when something goes wrong, indirectly, they dig their heels in. Wonder what the odds are of having spinal meningitis twice.

I am a success story with the pump. In fact I would recommend the pump any day over a SCS for CP. The SCS has really low odds on helping from what I have read and seen personally. I know some that went the SCS route then onto the pump before being able to get relief. I too ended up with the pump for most of the same reasons you did with the trial. My poor pain dr hung in there with me though, I have many other health issues that some docs are just plain afraid of me because of the other issues. I had so much pain in different areas of my body that even my pain dr said no way could a pill handle all of this unless he made me a zombie and thats not what pain mgt is about. I have been on every drug known to CP, either the side effects got me or full blown allergic reactions. If one did give me some relief it was very short lived because we would have to use too high of a doseage. My body does not tolerate medications well at all, and its any kind of medication, not just pain meds.

My trial was awesome. For the first time in years I was truly pain free, it was like a dream come true. However, we cannot expect that in the beginning. it takes time and in some instances trying different meds to reach that level. It took a good year to get me straightened out because my increases were not full doses, again due to other health issues. I am on oxygen and of course opiods can affect the resp. system, so it had to be taken very slowly. Initially Morphine was put in my pump and we had to switch because I don't do morphine. I was put on Dilaudid, Sufenta, Clonodine & Bupervacaine.  My concentration level of Dilaudid was increased to 15 mg with 2mg Dilaudid for BT pain which I do not use. I found that my muscle relaxer, Zannaflex was much more effective for pain control. In most cases my increase in pain is due to muscle spasms. I am wortking up to 36 mg a day on it.

I can honestly say the pump has given me life back. Compared to where I was at the time of the pump being implanted to where I am now. the difference is unbelievable. I also understand that I will not be pain free on the pump, no one is, but its at a much more tolerable level, I have increased my activities alot, and I am finally comfortable where I am at. Its not getting the old life back, thats gone, but we can make a new life that can be decent. Its learning to accept limitations and getting the most out of what we can do. We cannot sit around and and think about what you use to be able to do, thats just setting ourselves up when we do that. Been there & done that. I know right after getting my pump I was so afraid at any moment I would be having the horrible pain to return, I really think with CP it takes our brain awhile to reset itself on the pain levels, after being maxed out and spiked for so long it doesn't know any better,lol. I have a much better quality of life on a different scale. I have done many things that when I have told my pain dr about it he has scolded me for doing some of these things. Oh, I paid for it in the long run. I believe its called realistic expectations, lol. No more clock watching with the pump or any peaks & valleys with medication.

My pump was implanted June of 05. Its been on the recall list for possible gear failure, however, my pump works just fine, so if it ain't broke we don't try to fix it. At the time of my refills my mediction is measured as to what was drawn out of the pump and I am always on the money by having the correct amt left in it. If you have too much or too little then there is a problem with the pump.

One thing I would ask my dr if I were you is, will he be liberal with increases in your pump till they get you at the proper doseage. I have not ever had this problem, however, I have seen some post on here that their dr would not give increases or when they did it was few and far in between, till the patient felt the pump was of no benefit. If the dr is educated enough in pumps he will know when the dose is getting too high.

Sorry for the long post. If you have any questions that I may be able answer for you please let me know. Susie