Pain Pumps and Me Part3

  I left off at about two weeks post op with my new Medtronic programmable pain pump. Things seemed to be going along just fine or as expected with surgery of any type.

There is a big however here. I began having minor but strange symtoms and problems that didn't seem to be connected. I had used dilaudid for over 17 years and my pain doctor thought that I needed a change. With only three narcotics being approved for use in the pump I only had one choice. I can't use morphine because it makes me itch. The only one left is fentynal AKA Duragesic Patch. I couldn't use it. I had some very strange reactions to the patch in a very low dose. I told the pain doctor when I saw him to discuss the pump surgery that I couldn't use it. He assured me that intrathecal fentynal doesn't act like the patch and no one who has had problems with the patch and then tried it in the pump had any problems with it. It's supposed to be almost 100% safe because it doesn't cause a histimine increase which causes an allergic reaction. Mine wasn't allergic. My reactions are listed under ADVERSE REACTIONS. On all subsequent visits I asked to see the doctor or to have an appointment made for another day. No such luck. In fact one day I had a refill and an appointment with him to follow but when they finished the refill, they couldn't find him. I could see where he was standing just a few feet in another hallway. I was sent home sans doctor visit.

These reactions have built up without me or my husband realizing what was happening. Since I wasn't sleepy or dizzy or anything like that with the fentynal in my new pump, we just didn't connect the dots until Tuesday October 24th. Going all the way back to July when my pain doctor ordered my refill to be half dilaudid and half fentynal without telling me, I've been sick with one thing or another but my internist couldn't find anything wrong except a sinus infection which took over two months on medicines to get rid of. So lets look at a few of these impossible symptoms that the patch can cause but intrathecal fentynal can't cause (according to the pain clinic nurses who we will get to later on). There's dry mouth which is the first thing I noticed because I already have that problem and it got much worse. Abdominal pain and distention; headache; fatigue; back pain other than the usual; fever; flu-like symptoms; nausea; constipation (mine got worse); insomnia; confusion; dizziness; anxiety; depression; abnormal coordination, thinking, gait, dreams; sinusitis; depressed respiration which can lead to death. There are more but I won't bore you. These are just the ones that have affected me. Not the death, at least now yet.

I've been telling the nurses I see at my pain clinic all about what's happening and asking to see the pain doctor. I've been assured that the doctor is well aware about my problems and has ordered increases in the fentynal every refill since surgery. This is "fine tuning", getting the correct dose of medication(s) and is done slowly with an increase every three to four weeks. I myself have asked for two increases thinking that my pains are coming from my worsening adhesive arachnoiditis. Now today, October 26th I am in pain from the top of my head to the soles of my feet. Every joint hurts. I have severe muscle cramps. This is the worse all-over pain I've ever had to deal with since my lupus was diagnosed. I'm now in remission, praise God! I told the pump nurse this and she said that sometimes happens with fentynal and turning the pump flow rate down takes care of it. Do you read the discrepency here? I heard it loud and clear.

I was told to come in today, the 26th, and I went to the clinic thinking I would be seeing the doctor since this has turned into an emergency situation. Not so. I saw a new RN who has only worked in ICU or critical care and knows zilch about pain management but wants to learn. That's what she told me and she is nice but this isn't her fault. It's not the new pump nurse's fault either. Both talked to the doctor and he refused to see me.

Why do I consider this an emergency? For one thing I have Clonidine in my pump. It is a blood pressure medication but in pumps it's also a pain reliever. Mine was put in my pump in 1996 for both reasons and I was warned by the original neurosurgeon who added it in that if I had any problems with the pump to go to ER immediately because my blood pressure could shoot up high enough to cause a stroke or heart attack. (My subsequent pain clinic doctors have confirmed what she said including this one.) On top of that I have an AVM (arteriovenous malformation with aneurysms) in my spinal cord in the thoracic region which also is involved with adhesive arachnoiditis. My normally low blood pressure is now 150/83. By decreasing the flow rate he has also cut the Clonidine which is now barely keep the old BP in check. But he is too busy doing "procedures" to see me. He sent me a verbal message via the nurses that I should see my internist about my BP. The internist says I should see the pain doctor about all this new pain I'm having since the surgery. Where do I go? What do I do?

There is not another pain clinic around here that will take me as a patient because of all my health issues not related to pumps. He's it and he knows it. He now controls me. I knew when I got a pump in 1989 that I would have to go every six weeks for a refill and that has controlled my flexability in lifestyle. I've always been able to work around it. I've never had another pain doctor refuse to see me when I asked even if it was just at the refill that I asked to see him/her. So now I've learned another valuable lesson, not for me because it's too late for me to turn back, but for anyone else considering a pain pump. Know your doctor very well and make sure you don't get caught up like I am now.

I never knew that having a pain pump could turn against me in this way. It isn't the pump or how it works that's at issue here. It is one pain management doctor.

The thing that hurts me most about all of this is that this man has a medical magazine article that was written about his clinic in March 2005 hanging in his waiting room. Why does that hurt me? In it he explains how God has lead him into this work and how God has blessed him and that his psychologist is also a minister in a local church. His approach is Biblical according to him and entails all aspects of life. There is a Bible on the table under the picture frame that holds that article. He has a chapel in the building. Yet, he couldn't step across the hallway to help me, the woman whose hand he held before surgery and prayed for, when I am in so much pain and distress. How do I even know if he understands my problem since he won't talk to me or my husband?

If my "gasket" doesn't blow before I am supposed to see him (if he doesn't duck out on me like he did before) maybe I'll get some answers to my questions.

Wanda who lives where fall has finally begun.

Comments

[Pharmacist Steve]

Check out how bad compounding of intrathecal drugs can be on my website.
http://www.chronicpainresourcecenter.com/cprc/whynocompounding.html

Pharmacist Steve

[kyla cole]

Twistys Presents: Kyla Cole