Pain Pump Issues

Pain Pump Issues

March 26, 2012

I have a pain pump that was inserted into my abdomen in 2000 and again in 2007 for severe spasms in my legs. At the time the pump was placed I was in the hospital on IV Morphine suffering from an unidentified neurological disease thought to possibly be ms or pls. I was unable to walk due to both ankles being turned inward so harshly that it felt like my ankles where breaking. After weeks of severe pain my heart began having difficulty handling the stress. A pain management team was brought in after much debate between the hospital staff it was decided... in spite of the fact that I wasn’t going to be alive long enough to justify the increased pain and stress of surgery, they would still give me the chance to see if I would benefit from the pump. They started the trial phase which I responded to miraculously well. The docs started to get excited at the thought that maybe this would buy me some quality time before my anticipated demise. I was excited at the thought of not being in pain and without the spasms I would be able to walk again. 

More meetings between the hospital staff discussing the pros and cons and even though they knew surgery was very risky we were all willing to accept the risks. These doctors had watched for months as I became increasingly ill causing me to spend more and more time in the hospital. There were days that they came into my room on morning rounds and I swear they were hurting just as much if not more than me. They felt helpless and unable to identify what was stealing my ability to swallow and control motor movements, a ghost of a disease that had nearly taken my life so many times. 

They proceeded with surgery and I did well with recovery. So well infect that I was able to be moved out of the ICU for the first time in many weeks. The pump has done more then they could have ever anticipated it not only controlled the spasms but allowed me to walk again. There are some cons that I have to deal with.

I feel like a cat with my claws in the ceiling and hair raised on end. Just over a week ago  I had my pain pump refilled with a new mixture and concentration of medications. The doc thought it would be a good idea to increase my dosage at the same time. Let me tell you....”that was an idiotic idea.” My legs felt like they had been injected with Novicaine. I could still walk if I was really careful but I was seriously at risk of being injured. I called the doc so that I could have the pump rate turned down and was told that I had to wait 2 days. *!*%#!** WTF! If I can’t trust my pan management doctor to be available in that situation...I can’t trust her at all. 

The first time I had a problem with her was when she ct my pump meds in half and then went on vacation. When you’ve had Morphine, Bupivicaine and Baclophen going into your spinal canal for years and then all of a sudden getting it cut in half you are going to send that person into seriously painful withdraw. The way I see it she has made two serious miscalculations on how the adjustment would effect my body...both of which made me very ill, actually I don’t think that she gave a shit. She should have known better. 

My meds were turned down after a week of the high dose and two days of being numb only to have me withdraw from the higher dose.  When you take oral meds the levels fluctuate as the medication wears off but when it’s going directly into your spinal column it is 24/7 of a steady dose which makes your body become physically addicted very quickly. 

I can handle pain very well but anxiety, gastro intestinal dysfunction, headache, skin feeling like sandpaper was rubbed all over it, stuffiness, teary eyes, agitation and feeling drained...I don’t handle very well. Thank goodness it starts to after 3 days. The real crazy part is since they changed the formula of meds my body still needs to adjust to that. 

The good part of all of this is that I got to see a different doc within the practice who turned down my pump. I asked tons of questions regarding the back pain and how it started after the catheter revision. I also told her of the many complications of that surgery leading to a 2nd surgery to stop the spinal fluid from leaking after months. I also asked about the hard lump at one of the surgical sites and she said it was not tissue but something like an anchor that was put in, She had no Idea why they would do that. I was not informed that they put a foreign object in me. I was told they just tightened up the stitching. Finally some honesty. She said it sounds like he may have nicked a nerve.  That is a possibility. 

Without Dr B. saying something went wrong I alway felt like that surgery was anything but normal. 

First he never told me that he would be changing the site of the catheter and nobody understand why he did that. 2nd He notified Steve that I was going to have a severe spinal headache because I lost so much csf fluid during surgery. 3rd I had huge bumps on my back filled with csf fluid at both surgical sites for a very long time with months of spinal headaches. 4th they attempted a blood patch which I have had before with no problem but when Dr. B tried to do it the pain was unbearable and he was unsuccessful because he couldn’t position the needle correctly. That lead me into having to have another surgery to close up the leak. He then said Dr. S needed to assist (she owns the practice and is now my Dr.) diminish

I never had 1 day of back pain prior to that surgery and no one can tell me what is causing it. I do have a bunch of degenerative changes in my back which showed up in the mri but when I have asked if that is what is causing the pain Dr. S skirts around the issue like she always has. It is time for an independent evaluation and get some straight answers. These guys are supposed to be the best in Phoenix. I never had even 1 problem with my pain docs managing the pump in Michigan.