COLIN, IT'S WORTH THE HASSLE!!

Dear Colin,

   I’m sorry it has taken me so long to get back to you with an answer to your question. I have to admit that I didn’t look at the blog for several days and then it has taken me more days to come up with the accurate/adequate answer to your question. First I want to define hassle because it has more than one definition. The way I mean it is that something is a bother or trouble to do.

    I consider having adhesive arachnoiditis—A/AA—a hassle. The degree of hassle has varied for me from time to time. I don’t know why but from what I’ve read about A/AA this isn’t unusual especially when one has had it for a long time. I’ve had it for approximately 36 years. In the early years I didn’t need pain medications but as time went by more things happened to my lumbar spine and I got to the point where I needed pain medication as well as muscle relaxers on a regular basis. I had to be careful because I had three children to raise. It was hard to do but we’ve all survived it.

    This is a short summary of my life before I got my first implanted narcotic pump, AKA pain pump. At first when I needed regular medications for what had become chronic pain I didn’t have trouble getting my GP to prescribe them. After he retired I had to find a new doctor who would prescribe my medications. I had to “doctor shop” to find one who would prescribe for me but I could never be sure IF he would prescribe the same amount each month or IF he would change the medications or IF he would just stop prescribing. We have moved four times and each time it was a hassle to find a doctor for me for any reason. I have never used an illegal drug and I have never taken medications not prescribed for me. The hassle of finding and keeping a doctor for me consumed our life. The need for pills consumed our life. Can we go to the beach this weekend? We have to make sure Mom has enough pain pills. The pain medications had side effects which caused me to need medications to control them. Then the medications to control needed more medications to control those side effects. And the world goes around and around. Where does it stop? For me it stopped when I said no more of this. The amount of pain relief I was getting wasn’t worth the hassle of all these other medications and side effects. After weeks of prayer one night I just made up my mind and quit. I didn’t have any withdrawal or else I didn’t notice because I felt so much better all over. Until a couple of years later when…………

    One nice April evening I started to get up out of a low chair and I couldn’t because I had a sudden pain down the back of my right leg and into my foot. With help I got up but I could barely walk. I was becoming paralyzed from pain and whatever the A/AA had slowly been doing over the years. The local neurosurgeon I saw ordered an MRI and ended up giving me a prescription for a wheelchair along with the advice to learn to live with the pain now.  He said my pain would continue to get worse and if they started giving me pain medications now I would become tolerant and not be able to take enough to help the pain without killing me later on. He also mentioned that opioid medications can cause fatal liver damage when used in large amounts and/or for a long time. So you now know what was going on when I was offered the pump. You have called yourself a Crip more than once. What would you do if you were 41 years old with young children and told to live the rest of your life in a wheelchair sans pain medications? I imagine you would do just what I did.

    As I was leaving the neurosurgeon’s office his new young assistant called me over to the side and told me to go back to my old neurosurgeon immediately. I asked why but he wouldn’t tell me. I thought it was useless since he had already told me there was nothing to be done about the arachnoiditis but that was six years ago so I went to see him. He told me that I needed a pump. I spent two weeks in the hospital. On the first day the catheter tip was implanted in my spine and when I awoke from the anesthesia I wasn’t in pain except from the small incision on my back and the one on my side where the catheter came out. The first medication made me itch so we had to change to another pain medication. Then we had to get the dose right. It was too high after I went home so I spent another two days getting that straightened out. There was the pain from the implant. Back then they didn’t give oral medications to pump patients. I had a serum build up behind the pump but that doesn’t happen often. It did burst open the incision a wee bit and drain on its own. About two years after the implant my catheter broke in two pieces. They don’t know why. I had to have another catheter implant just like what I’m going to have done next Monday.

    After that catheter change I didn’t have any problems with the pump itself for about sixteen years when we noticed the flow rate was slowing down. During those sixteen years I had to have dose increases and they added in two other medications. After the doctor added bupivocaine most of my A/AA type pains were gone as well as the burning, stinging, stabbing, electric shock types of pain until March of ’06 when I started having new symptoms. I think this was about the time that the two of us started corresponding again after I had been sick with non-AA related health issues for a few years. First I got a new pump. I thought the doctor was going to just put the same medications back in it but he didn’t. He put me on another pain medication that I can’t use due to severe adverse reactions. That was the doctor’s fault. I told him no and I told him why but it didn’t get through to him. I had a very hard time getting through the nursing staff and office protocol for pump patients and my life was miserable for four months. But to his credit the doctor did finally realize what had happened and has been trying ever since to get me back to having that good pain control I had before. We’ve tried changing the pump doses and adding new medications. Nothing worked. There was nothing left to do but check out the pump. The first step in doing this is to check the catheter to make sure it’s OK. This is what we did and it is not OK. It is the old catheter so it’s sixteen years old now. It’s no wonder it sprung a leak.

    We know there will be problems getting the dose figured out. We don’t know how much is still going into my spine and how much is going into my body. From my symptoms not much, if any now, is going into my spine so we must start out low and work up just like this was a first time implant. I’ve been going through withdrawal symptoms as well as having all my A/AA problems come back just like they would be without a pump at all. The pain is horrible even though I have oral medications. But worse than that is I’m back to the wheelchair stage again. I’ve got a power chair which is nice but I still prefer to walk inside the house so I can do my activities easier. I have my walker with wheels and now I’m bending double over it to walk so that I don’t fall. There are some places that power chair won’t go in this house.

    I could not just sit here and let myself become totally disabled and in a wheelchair without giving the pump a try when it was offered. Considering the fact that it was a clinical trial I think the original pump procedure did go well. If you just look at the implant part of the second pump that procedure went well also. The old catheter has failed but it’s been a good one. The doctor goofed up but he seems to have learned a lesson about closer doctor-patient relationships. Your guess is as good as mine as to whether the new catheter will once again mask my problems with A/AA.

    In direct answer to your question, yes it is worth all the hassle for me. But it seems I may have been an exception for getting the desired results. I’ve had good pain control for spine originated pains with very little in the way of side effects. For a while I was a member of a group of people with pumps and it seemed to me that most of the people who used a pump for pain control were not happy with the results in one way or another. This doesn’t mean pumps don’t work or that they don’t/can’t give a desired result. It simply means that people who have problems are the ones who write in the most often asking questions.

     You mentioned the refills. The time between refills varies with each patient. It can be two weeks or three months. I don't see that as being any more demanding than having to go to a pain doctor or GP every month to get prescriptions. But it is very hard to change doctors once you have a pump so make sure you get a pain doctor you can work with and who will be around for years.

    There is one thing in your post that concerns me. You said your pain doctor offered you a pump for convenience sake. That is the worst reason I’ve ever heard to get a pump. I’ll stop here because I could write two more pages just about that one sentence.

Take care,

Wanda

Comments

[Derek]

Dear Wanda,
Just visited your website cant sleep 'pain' and as a fellow Arach just wanted to say hi from Aussie.
God Bless,
Derek, (Aussie Redback)

A little about me, visit
http://www.theissue.com.au/www_root/pdf/ti020102.pdf

[pikaboo]

I was in an acident in,I had a pre-existing condition,I had bone fusion done on L-2/L-5,in 2001,after the accident I had a herniation at C-5,fracture at c-6 and another herniation at L-3,now my surgen wrote in my papers for the attorney that he could not rightfully say that I got these problems from the accident,but 4 months prior I had a body x-ray and it was clean.What do I do?