Hi,
If you read part 1 and remember it then you know I left off where the neurosurgeon told me I needed a pump and left the room without any further discussion.
The nurse came in and ask what the doctor had told me. I told her he said I need a pump. I asked about it. She told me it was a way of putting pain medicine right on the nerve where the pain originated. I was given an admission date and told to bring some loose regular clothing to wear for PT along with my pajamas and other necessities. I would be in the hospital for about three weeks.
I arrived at the hospital on Sunday afternoon. Later on in the evening people started stopping by my room and doing things such as measuring me from head to toe. I was asked a whole bunch of questions by a psychologist. I had to try to walk on my toes then my heels. My reflexes or more like my lack of reflexes in my legs were recorded.
Then the neurosurgeon came in. He wanted to know if I had any questions. Of course I had questions. All he told me was that in the morning I would be taken to the OR where he would insert a needle into my spine and connect it to a catheter which would be brought out through a hole in my right side. It would have a Hep-Loc on it just like an IV. I would get morphine thought it twice a day. Then we would just have to see what happens. It was a study to see if the pain pump implant being used on terminal cancer patients would help chronic back pain patients too. A "study" for the FDA didn't make it sound as if it was an "experimental" treatment but I found out several months later it was considered "experimental" and my insurance companies wanted their money back. Some patients with private insurance got stuck with big bills because prior authorization wasn't obtained. I had Medicare as my primary and my husband's insurance as my secondary. I didn't have to pay anything because I wasn't told beforehand that it was "experimental" and wouldn't be covered. It wasn't a big deal because he only had two Medicare patients in his study. I don't know how the other patients resolved the matter other than knowing a few got stuck with big bills.
This was definitely an Informed Consent issue however the "come back" on that was simply that it was a study so no one could be told what to expect or the results would be biased. (Where have I heard that argument before? Most doctors don't tell the patients everything before the patient has to make a decision. It might scare us.)
When I woke up after the minor surgery I still felt groggy all day and the next day and the next day. I needed to use the bathroom. I itched. I was nauseated. I had a headache. What in the world was happening? My husband helped me to the bathroom where nothing happened even though my bladder was full and it hurt so bad. I called the nurse. She said that was normal and would be right back. She gave me a shot and in about 30 minutes my bladder started acting normally again. One down and four to go.
I itch and sting all over. Here comes the Benadryl (which I could still take back them). It doesn't help. I'm miserable. This goes on for two days before the doctor decides I'm allergic to the morphine and need dilaudid instead. I get it three times a day and the itching stops. Two down and three to go.
I'm nauseated and have a horrible headache. Is both being caused by the dilaudid? Are they one problem or two? Is the stomach ache causing the headache or vice versa? Here comes the Phenergan. It's good for both. They settle down after a couple of days. Four down and one to go.
I'm high. I'm getting too much dilaudid. I can't think or stay awake. I can't do PT because I can't maintain my balance. Walk? Are you kidding me? I was not taking anything for pain before I had this needle and catheter put in me. It's just too strong. The doctor has to take the dilaudid out of the pump, dilute it and put it back in. Why? The first pumps didn't have batteries and computer chips. The medicine was put in the pump and each pump flow rate was different. The goal was 1 ml per 24 hours but mine ended up being .86 m. per 24 hours. There was no way to control the pump except by increasing or decreasing the dilaudid/morphine ratio with the saline base.
The wisdom of the day was that anything less than 6 mg of dilaudid a day wouldn't be strong enough to do the job. No one considered that a person without cancer level pain and certainly one who wasn't taking any narcotics needed very little to do the job. It was interesting that while I was asking every day for the narcotic to be lowered the rest of the group were asking for more.
For two weeks we had PT each morning and afternoon. Every move was recorded. We had to show the world that with our pain lowered by the pump we could return to more productive lives.
For two weeks we talked each day with the psychologist and/or the Social Worker. We took written tests such as the MMPI. We had our skin temperatures taken while we were doing sessions of relaxation therapy. We were poked and prodded. Some people got mad. A couple even demanded the trial stuff be removed and they left. The rest of us were very happy with out two + weeks of pain relief. We had pumps implanted.
When I woke up from the first part of this study, the catheter implant, my pain was almost gone. I had pain that started at my hip and radiated down my right leg into my foot. I could hardly get the leg to move so I could walk. The pain never let up. It was torture. Suddenly, it was almost gone. I could walk. I could do whatever the medical people asked me to do. But, I still was getting too much dilaudid. I told and told them but it was useless. When the doctor implanted the pump in my right side just below my waistline, it still had the six mg strength medicine in it.
When I woke up from the implant surgery, I hurt. Oh, did I hurt! This wasn't major surgery but when you have a six inch cut in your side, it hurts. The wisdom of the day was that the pump took care of ALL pain so none of us were given pain medication for our surgical pain. That was torture again but it only lasted for a couple of weeks. Three days after the implant, I went home.
Two days later I couldn't stay awake. While the medical staff had me up and going, the dilaudid didn't bother me as much. When I came home I went to bed to let the incision as instructed. I found myself alone inside a nightmare I couldn't make myself wake up from. I was overdosed. I did manage to wake up enough to call for help. The local ER didn't know anything about a pain pump. They thought I was crazy. No one had even heard about their use in cancer patients. By that time my husband had arrived from work. He called the neurosurgeon. He took me on the hour and a half road trip back to the hospital. Their ER was ready for me. I got an IV with Narcan. When I was taken to my room, the neurosurgeon came in and did the dilution of my pump medicine again. It was still too much. It took another two days but he finally downed the dose to 2 mg per ml with .86 ml going into me every 24 hours. That is not much medicine. I was on this dose for over seven years without oral narcotics for back pain.
Two years into this adventure, I noticed my pain level went high and I felt like I was getting systemic narcotics. I called the pump clinic and was told to come in right away. I did. They took me to x-ray with the intentions of putting a dye into the catheter and see if there was a leak. There was no need to do that. The x-ray showed that the catheter was broken into two pieces. The next day it was replaced and things went on as usual. Or did they? My first needle had been placed epirural. Now they knew needles need to be intrathecal. He put in a new intrathecal needle and catheter. He placed it higher up into the thoracic region. He left the old needle in place simply stating that it is too dangerous to remove one after it's been there for some time.
I gained weight. I lost weight. I gained weight again. The result was that the pump pulled loose from it's anchors and was just barely under the skin. Then one day at a refill, it poked out from under the skin. Surgery had to be done to put it back and anchor it again. This time it didn't hurt so much because I got oral medication for the surgery pain.
Then I fell, twice on concrete. I landed on my tailbone both times. About a month later I started to notice that my feet felt odd when I was in bed with the covers over them. I started to wonder what's going on. Gradually pain creept in. The neurosurgeon who put the pump in had retired and sold his practice to a woman neurosurgeon from Texas. She bought his refill clinic too. After a few months she moved to another hospital so us pump patients had to follow. I told the pump nurse about the increasing pain and numbness. The doctor started seeing me at every refill visit. She ordered MRI's every few months. She told me I must never fall again. Falling makes the "plastered" nerves pull away from the thecal sac. It's a new injury and the adhesive arachnoiditis can progress (get worse) at a rapid pace. There's no known way to stop it. This is where ESI's come in as an attempt to stop it but I'll save that topic for another time. She started increasing my dilaudid and put Clonidin in the pump. Nothing seemed to help. I did plateau out for a year or so but I was never able to cut back on the medicine. I had to start oral narcotics for two reasons. One is that the pump no longer covered the AA pain. The other is I have other health issues which cause chronic pain. They have finally realized that the pump only works on certain types of pain and it doesn't work like systemic medications.
Pain pumps use very small amounts when compared to oral doses. This is because the medication(s) come in contact with the Central Nervous System (CNS) and anything else in our spines. The medication(s) work differently. The aim is to stop the pain at it's origin. If the patient can get at least 50% of their pain relieved during a pump trial, then it's almost a sure bet the pump will work very well. The pump is now approved to use morphine, dilaudid, fentynal and Prilait which is a man-made version of the venom from a sea snail. I've not heard anyone mention that lately. After looking at all the possible side affects I passed that one by. They can also use Clonidine for the burning, stinging, electric shock type pain(s). Bupivocaine can be used for the neuropathy pain(s). I have fentynal, dilaudid, Clonidine and bupivocaine in my pump now. That is quite a strong mix but remember each one is just a small fraction of an oral dose and it's per day not per 4-6 hours.
I developed a seizure problem and fell many times. It's under control now but the falls didn't make my back any better. For the past ten years I've gotten slowly worse with the AA and also the other problems I have. The pump has kept my pain levels caused by my back problems low. At one point I thought I might be able to return to work after I got the pump but I got very sick with another illness that has no cure and not much in the way of treatment. The two together make my life very difficult. But there is one thing I have learned recently, I can't stand the pain without my pump.
The old one finally died and has been put out to pasture. Before it died it went slowly downhill itself. I got less and less of my medications. I hurt more. I developed new symptoms in my back. Were the new symptoms really "new" or what? The verdict is in. My AA is getting worse and it is doing it rapidly. Dr. Sarah Smith states in one of her papers that this happens in rare cases, so don't panic if you have AA. Usually it's a minor event that causes this to happen but I can't think of or remember nor have I noticed anything different, with one exception---I've been feeling better because my other health problems have gotten better. Since I feel better, I'm up more and more active. It may simply be that the extra moving around is causing this. My neurologist has said the same thing. So has the pain doctor. The neurologist says to get a power chair and use it. Stay off my feet and rest more. The pain doctor says be as active as you can for as long as you can. Since AA tends to do its own "thing" I'm going with the pain doctor but I'm getting the power chair just in case I really need it in the very near future. They take time to get approved.
Two weeks ago I got my new pain pump. At this moment I am in very low pain. The bupivocaine has knocked the neuropathy pain in the head. The other AA caused pain is covered up by the narcotics. But the pain pump is just that--for pain relief. It does not cure the underlying cause of the pain and/or other related back problems. They have to be dealt with. I could barely walk and had lots of pain. Now the pain is at an acceptable level for me but I can still barely walk. Why? My AA is progressing. I can mask the pain and that makes my life much richer and easier to live but that old AA is still there, doing its own thing. For now I'll continue to walk but like I said before, I'm gonna get that power chair too. I don't know what is in my future but I'm going to do the best I can today and not worry too much about it. Why? It's something I can't change. If I were told there was something specific that would cure me, I'd do it but there isn't. There are things in my world that I can change. I'm going to concentrate on those. There are still a few things I still good at doing. I'll do those. I've been bedridden needing 24/7 care before and I may be there again. In-between I'll do my best.
Chronic pain/illness takes its toll on the whole family. Suddenly one partner is sick, out of a job. Finances get low. Just when you think things can't get worse, they will. We have to be strong, not in body but in our minds. It's very hard when the AA process upsets our brains and the medications do the same. How do we get out of it? How do we survive? There just seems to be something in the human spirit and soul that calls us up and out to better things. Every person who has ever lived or will ever live, has problems. It's seems as if some of us get more than our share. AA is one of them. We got hurt by people we trusted to make us well. We've been lied to. Many have lost spouses or partners. Children turn away as do other family members and friends disappear.
We have the 2020 hind sight to tell people to stop puncturing spines when it isn't necessary. Now wait a minute! Didn't I just say that I have two needles in my spine one of which is putting four medications into my spinal fluid 24/7? Yes, I did. However I already have AA and I have it bad. The pain pump is a last resort treatment. Use oral medications as long as you can stand the pain then think long and hard about getting a pain pump. I wasn't told the hazzards of having an intrathecal pump. I don't think I would have said no if I had been told because I was in such pain I would have done anything. I'd already tried everything neurosurgeons had suggested in the past. Oral medications didn't touch my problem. They were useless.
We don't know the long term affects of having a foreign substance(s) in our spinal fluid. It will be many, many more years before scientists will have enough information to even begin answering that question.
Thinking about having the pump trial? You have to remember that the body has to adjust to the new way of getting medicine. The trial isn't long enough to "fine tune" the medicines for maximum relief. If you do truly get relief with the flawed trial, then it's a good bet the pump will work for you. Will you still need oral medications for pain? That is an individual thing. What works for you might not work for me.
I've kept your attention far too long and probably said far too much. Just know that you are not alone in this world of chronic pain. There are many out here and we all need to help each other,
Wanda
Helge von Koch, Swedish mathematician, created the Koch Snowflake Curve, which introduced the idea of a "fractal," which is largely the reason you are entitled to handicapped plates on your car. You're entitled to these plates, and the good parking spots if your doctor determines that you can't walk more than 200 feet without resting. Here's why that number, 200 feet, is the benchmark. First though, fractals.
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