Post Edited (Pamela Neckpain) : 10/21/2008 5:41:00 AM (GMT-6)
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