Pain Pump, #10

        I won't speak for Wanda.  She does that well enough on her own.  After a protracted recovery from yet another surgical proceedure, I'm proud to offer you Wanda's first post since she's been able to fill us in.  Thanks Wanda, the floor is your's.

It seems like it’s been ages since I started my articles about life with my pain pump. In reality it’s only been a little over a year. Now I have one more to add to the list. I think this is number 10.

Here is a brief outline of the first 9. I got my first pain pump in 1989. It did not have any batteries and wasn’t programmable therefore it lasted until 2006. While I had no problems with the pump itself, I did have a problem with my first catheter. It broke into two pieces and had to be replaced a couple of years after it was originally inserted. Catheter problems are common and are usually easily fixed.

Since I have adhesive arachnoiditis in the thoracic and lumbar regions of my spine my pain doctor didn’t want to have to put in a new catheter if the old one was still good. Testing indicated that the sixteen year old catheter was still just fine. When I got my new pump in August 2006 he just spliced into the old one and that was that. Only in reality it wasn’t “that” at all. I never did get pain relief with the new pump. At first it seemed that I did but it didn’t last very long. We changed medications in the pump. That made things worse. We added oral medications which helped some but still the pain was getting worse by the hour or so it seemed to me. The last thing to do was to check the catheter again.                                                             

The pump has an access port for refills but it also has one so that just the catheter can be checked out with a dye test. This is what we did. It showed that my catheter was leaking.  We set the surgery date and I was so happy to know that I would most likely get my pain relief back to a much better degree than I’d had in the two years since the old pump had started to fail.

On the day of my surgery my doctor came to pray with me as he does with all patients who believe in the power of prayer. I looked at the clock just as the anesthesia started to take control. It was 11:20. The surgery was only supposed to take about 45 minutes followed by a short recovery time. I would be home by bedtime. There would only be minor pain for a few days.

My next memory is of momentous pain. I looked at a different clock that said 5:00.  I was being transferred to the bed in my room. Suddenly I got the worse muscle spasm I had ever had up to that point in my life. It started under my arm pits and moved down my entire body and didn’t end until my toes were straight out yet being pulled under at the same time. I screamed!!!!

What was happening to me? These spasms would let up for a short period of time then begin all over again. I could barely move my legs. I could barely move at all except during those muscle spasms and I had no control over those. I was told that pain medications would not help this type of pain because it is muscular. Anyone who has had a muscle cramp in the calf of their leg knows you have to “work” through it to get it to loosen up. But after a few hours of these I told the nurse that they were making me sore and a pain pill would certainly help that. She came back with 2 Percocet. They did help.

The only way I can think of to help describe these “spells” is to compare them to labor pains. They start out easy and slow but build up to the point where you think you can’t survive the pain another second. Then they gradually go away only to return in a short time. Enough about the pain part.

The second day after surgery I was able to walk in the hall so we thought everything was clearing up. We were wrong again. I lost control of my legs. No more walking for me. The pain doctor didn’t know what was wrong with me and neither did the neurologist. None of the nurses had seen a case like this. Baclofen was put in the pump and I got better to some extent and was discharged. The neurologist added Zanaflex with the pain clinic adding Klonipin.

It’s taken all this time but I can usually get up aided by my walker. After that it’s minute by minute. Every day is an adventure with what can I do today or not do today. I’ve done some serious damage to the interior of the house which won’t get fixed anytime in the near future. The kids and I tried flowers but the drought is just too bad for them to survive except the Aloe Vera plants. I can’t even get the outdoor Ivy to root in a different location. This Ivy is not easy to get rid of. I’ve tried for years to get it off our chimney but it comes back. Now it has started across the yard on our fence. Now I’m trying to root it in water in the window. I won’t give up because this stuff grows in all seasons.

I guess I’m like the Ivy. I just won’t go away. However I may have trouble growing new roots.

So now we get to the “good” part. What went wrong with that simple surgery to leave me to live the rest of my life mainly in a wheelchair and suffering muscle spasms at the oddest times? My old catheter had fallen apart and had to be removed in small sections. It was left to run through my body any old way before entering the spine and being threaded to the place where the catheter tip entered the spinal fluid. He had to remove every part of it because it could get infected or a piece could migrate to a major organ. That old catheter was deadly if left in me. He got all but one tiny piece. It was about 7 feet long. This left me cut from the pump all the way around to my spine. OUCH!!

Now the new catheter had to be put in. He wanted to get it as high as possible to give me maximum coverage so he tried to thread it as high as possible. When he got to the T7 area it wouldn’t go any further. He told me he tried for an hour to get it past T7 but nothing worked. At this point he stopped and did a myelogram. He discovered that I have an AVM in the spinal cord at T7 and I also have a crushed T7 vertebra from a fall about 30 years ago. There is simply no way to get through this or even around it. All this poking and prodding has left me with Myeopathy—pressure inside the spinal cord. This is the cause of the spasms. Does it get better? It might given some time but not much. How do you control the spasms so you can still have a life? You over medicate the muscles to stop the spasms or at least calm them down as much as possible.  Doing this leaves you with little to no control over your legs so you are technically paralyzed. My neurologist says we can start to lower the Baclofen in pump just a very tiny amount and see what happens. If they get worse we can always go back up on it. What wonderful choices to choose from. Be confined to bed as a spastic in pain that isn’t controllable or live my life in a wheelchair with legs medicated to the point they don’t work very well if at all. I choose number 2 and will take things as they come.

Wanda

Comments

Dear Wanda,
Your courage and strength amaze and inspire me. You are a true marvel of hope and endurance. Please know you remain in my prayers and those of my family.
May God sustain and comfort you as you adjust to yet another unpleasant reality and try to fully live your life. Please also be aware of the contribution you are making to the world by sharing your story and your life. You are a blessing in and of yourself. Take care.
You give me courage as I move into my (very little in comparison) surgery.

Breathe in Peace, Kathy

[zed null]

Thank You Wanda... you've increased a hundred-fold, what "little knowledge" i have of pain pumps and, leaking catheters... that "little" being, my "remembering" my mother having one of each implanted; when such things were "first being developed"... nearly "twenty years ago"... to help "manage her pain and help with her chemotherapy infusions"...

at the time, "being one of the first cancer patients on the West Coast to utilize one"... and, "her having daily sessions"... where she "would be asked to explain her understanding of her indwelling pump"... and, "her sensations, at being able to control the medication and pain medication doses"... to "various nurses, medical interns, and other cancer patients"; seemed to "add another six months to her life, before she finally passed on"...

i wish you much success... in your trials and tribulations with the "dern things"... and, keep posting... as, it "makes the prospect" of "eventually having to deal with such things myself... a "little easier" to conceive and accept.

best wishes,

zed null

[JD]

I am speechless but want to acknowledge reading your painful journey.I am glad you are are blogging. I wrote about a man with a body that is a gift from heaven and a skill worth millions, he has thrown it all away. We shoud take nothing for granted

[zing]

Wanda, I hope things will improve for you in the future.

I think I first read your story either before or after I had my synchromed 2 implanted in Feb. My surgery didn't go as planned but I've had improvement. They couldn't get the catheter in and then started drilling holes.

I was worried for you after I read something from Colin's blog about your latest surgery and then nothing followed for a long time.

My spine is an inoperable mess and the last neurologist I saw for the areas not served by the catheter say it's a possibility I have arachnoiditis from a myelogram done in 1983. He says I don't fit the profile because the burning goes up my spine to the back of my head instead of going down. He must have missed the part where I told him it involves the area six inches below where the myelogram was done but the worst travels up my spine.

I'm 53 and still don't fit anyone's expected profile.

I hope you can have some improvement. The pump has given me some and it's the first since 1978 when I was first injured.

Take care

zing in Georgia