Chronic Pain

[QUOTE]Originally posted by mike harsch:
Hello to All
"I would first off like to thank all those willing to share their experiences and add a special thanks to Bob for starting, sharing and keeping this going. Although I have yet to post a comment I have been reading this forum for several months now. You have all given me much hope and encouragement just knowing that I am not alone. My reasons for not posting up until now are that I have just have not felt well enough most of the time and the other is that I have yet to receive the relief that most of you have had from my pain pump. I have had mine for almost two years now and am seriously considering having it removed. At the same time I hope not to discourage anyone from trying it.
I shall try to give a little background into my experience before I get started with the many questions that I have for you all.
My name is Mike, I shall refer to myself as Mike From Oregon due to the fact that there is another Mike in the forum already. I am a 41 year old ex-construction worker injured on the job in the summer of 2002. At that time I herniated a disk at C-6 which was causing compression and stenosis requiring immediate fusion surgery at levels C-5,6,7
After the surgery the pain increased and the surgery was some time latter deemed failed. After spending the next few years going thru the oral opiates, fentinol patches, pain therapy, acupuncture, electrical pain stimulators, etc. I found myself having the morphine pain pump trail in late summer of 2005. At that time I was actually doing better than I had up to that point with the acupuncture, I was able to lower my oxy intake to about 60 to 100 mg per day. I had at times been on double that amount of morphine, with very little relief most of the time.
In any case upon having the pain pump trial I was shocked at how much relief that it gave me… but it has since yet to offer me anything close to the relief that I received during the trail. After having the pain pump installed in the fall of 2005 I have had nothing but problems. The fact is that I was much better off before I had it put in, at this point anyway!!!
Like you Bob I had the same initial problems with the catheter slipping out twice. Some of my other minor problems have been flue like symptoms at each turn up, along with extreme fatigue. So bad that I have yet to reach over 0.3 MG per day, not to mention the nausea constipation and the other stuff that adds up to just making me feel like crap most of the time. One of the main side effects that I have had is low testosterone levels. Which I am finally being treated for!! I am about 80% bed ridden at this time and it feels as though my body is just getting weaker and weaker. Before the pump I was about half that on my bad days.
Now I am not saying that this thing does not work on the pain, that has not really been my issue with it. It seems to work on some of my main pain problems but it does not help at all with my break thru pain. I am now having to double my oral pain meds 100 to 200 MG per day of oxy just to slow down flare ups. It seems to me that my testosterone level has actually somehow increased my pain level. At the same time I’m not really sure and it has been difficult to get any real answers from anybody in regards to these problems. I feel as though my pain Doc is the only one that has any real knowledge of this stuff but he is often too busy to contend with most of my problems. He often refers me to my primary Doc or to his staff whom are all great at turning it up or doing refills but suck at knowing much more than what they specialize at or were trained to do.
Another problem that I have had with the team of people that I have working on me is that they do not seem to talk to each other or no much about what the other is doing. It took almost a year to find that I had low testosterone and then another six months to get into a endocrinologist to be treated. I guess that expecting your pain doc to over see any outside resources is just too much to ask. Anybody else have this problem?
Now to continue my main my questions…..

Anybody with any knowledge of similar experiences or that has experienced any similar side effects, especially in regards to low testosterone caused by intrathecal or oral use of morphine’s would be much appreciated??????"
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Mike: Although I'm much older than you (76) and age will result in lower testosterone levels, they can also be affected by medications, especially anti-depressants which can cause delayed or no ejaculation and lower libido. The various pain medications you are taking may also have similar effects. At your young age, this will be a much more important that it is for me but I can't recommend anything other than discussing it with your regular physician as your pain management doctor may not provide all the information you need.

I think you have to accept the fact that all the powerful medications you are taking for pain control will have side effects and result in some unbalances in your system. I don't think everything can be expected to remain normal under such conditions. One has to decide if he or she is willing to give up some things in order to get relief from chronic pain. Your pain management physicians and their personnel may not take the time to discuss individual problems with you because they are treating hundreds of patients each of whom have their own particular set of problems.
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"Another question is to you Bob; In your reply to Tom on 4/16/07 You mention having fatigue due to thyroid problems, I am curious as to weather this is a side effect of the pain pump or just a routine medical condition. Also how did you come to know about this problem and has it since been resolved, and if so how???????"
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My last blood test indicated an abnormal thyroid reading which is probably the cause of my fatigue. I am taking medication for this but it requires a lot of trial and error to obtain the proper dosage. So far, I'm not feeling much better with regard to my energy level but I'll have another blood test as soon as I finish my current stash of thyroid medication.

Thanks for your interesting posts and we look forward to hearing from you again.
Aloha,
Bob



Mike From Oregon

Well I am still playing the waiting game with the VA here in Southwestern NM which I have come to expect.I have had two back surgeries and the last one in Jan 03 was a instrumented fusion of L-3 through S-1 on both sides consisting of six screws and two rods,oral Morphine doesn't seem to be doing it for me and so I am now waiting to see a VA spinal surgeon to see if I am a candidate for the pump. It has been over a month now and I have seen a shrink due to what is described as "mild depression" due to being in pain constantly and the mood swings that come with the pain. I have a question regarding a Fentanyl patch. I guess each person reacts differently to different types of medication but I was wondering if anyone could let me know of their experiences with this Fentanyl Patch and the differences in pain relief between this patch and the pump? Any info would be greatly appreciated.

Hi
You are correct that most of us have to go through a series of different approaches to control chronic pain with the pump usually being the last resort.

I once tried the Fentanyl patch and was using it at the time they had a batch recall because of leakage problems. My patches were in that series so I had to get off of it suddenly and went through withdrawal. I returned to oral morphine after that experience.

I also was prescribed anti-depressants for a while as it's not at all unusual for people with chronic pain to have mild to moderate depression. They seem to go hand-in-hand. I don't take them anymore since the pump was installed but I think they can help some people on oral medications even though they do have some side effects.

If the Fentanyl patch is working for you, there's no reason to change unless they become less effective over time. They are certainly convenient to use.

Best wishes,
Bob

Hello,
I've read many of the entries, but not all. If my question has already been addressed, please let me know where it is. My dad is 80 and has had a morphine pump for several years. All of a sudden, he is vomiting everything he eats (for several days), mentally confused, and has a fever on and off. Does anybody know if these symptoms could somehow be related to the pump? I will appreciate the time you spend to shed any light on this question.

Hi,

I recommend immediately calling the physician or clinic that manages your dad's morphine pump. While the pumps are generally very reliable, there can be problems. He might be getting too much medication or not enough for various reasons.

It's possible that the pump has stopped or there is a problem with the catheter as vomiting is one of the symptoms of withdrawal; however, this should not last for more than day or two. I've had several withdrawal experiences myself and nausea is one of the symptoms along with flu-like feelings. The withdrawal did not last more than a day for me but it might be different for others. Withdrawal symptoms also include a return of the chronic pain that is controlled by the pump when it's working properly.

I cannot emphasize more strongly that you contact the pain management clinic ASAP to prevent serious consequences or at least to determine if there's a problem with the pump system or if it's an unrelated issue. Your father is a few years older than I and these problems should be investigated early on because of our relatively advanced ages.

Hi Everyone,
I'm Mary from Wisconsin, do I have a morphine pump? Nope....Do I have 4 doctors telling me to get one? Yep! I have been reading all of your postings and I can't thank you all enough for taking the time and explaining the good and the bad experiences you've all had. I have had 4 back surgeries, the last one 8 weeks ago. They were all lumbar, and I still suffer with severe sciatica and psoritic arthritis. I have been referred to a pain clinic and have been trying to educate myself before I go. After reading everything you have all shared, I feel brave enough to make the call tomorrow and get things rolling. Thanks again for all your info. God bless all of you.

Hi Mary,

I'm glad you have benefited from our postings and made the decision to try the pump. Your initial trial session will determine if it will be effective and I certainly hope it will. Best wishes to you for a positive outcome.

Aloha,
Bob

Hello Bob,
I am an anesthesiologist and pain physician. I was referred to this site by one of my pain patients. I have placed many intra-thecal pumps, and am willing to help with some questions if I can. I must compliment you, you are quite knowledgeable with pumps. Communication in a clinic environment is often difficult due to the time constraints. I will tell my patients the basics regarding pain pumps, provide them with literature, but encourage them to do research on their own. I feel it is important, for pain patients in particular, to educate themselves. They have to play an active role in their management. I tell my patients: our relationship is a partnership, I have to rely on them a lot to help me manage their pain, because I can't see their pain, like an Orthopod can see a broken leg. Anyways, let me know if I can help. I may not be able to check the site too often, but I will certainly try to keep up on it.

Hi Bob and All. I too had the pump installed on June 20th. I did not know about the abdominal brace. A nurse casually mentioned it to me a week later. Also, I was not told to take it easy so I was trying to do a lot more than before the surgery because a lot of my pain was gone. Then it hit me! But, my questions and comments are: No-one has mention the amount of swelling after the surgery. None of my cloths fit. I looked like I was nine months pregnant with twins! There was one post back in March that asked about sharp pains and spasms near the pump incision but no-one answered Michelle. Right now I am having pain from the end of the incision to my navel. Has anyone felt this? It can be a spasm or a sharp pain it varys.

In response to the handheld device, I asked about it (after the surgery) and was told they will contact my insurance and that they do not mention it because most insurance companies do not cover it. How insane is that?

The morphine takes care of my low back pain but not my cervical or Fibro pain. The doctor said he will add a different medication to the morphine to cover the cervical pain as soon as we get the morphine stable. Has anyone ever heard of such a thing?

I want to thank you all for your help in getting me brave enough to go this. Sometimes I lose sight of the fact that at least my lower back pain is gone. I want it all gone ;-)

Thanks again
Connie

Hi Connie:

I have never heard of anyone needing an abdominal brace and am wondering if it has to do with something other than the pump itself? Implanting the pump is relatively simple as it's supported to surrounding tissue by sutures attached to clips on the pump. Eventually, scar tissue usually forms to provide additional support.

I'm happy to hear that it has helped your back pain as that's what it's primarily designed to do. It may not have any effect on pain in other areas as the morphine is concentrated in the spinal cord fluid and circulates from the lumbar area to the brain in what's called the sub-achranoid space. Therefore, it may provide little or no pain relief for other than your back problems.

I have a bad knee that will eventually need replacement and the pump does not seem to alleviate pain in that area although it's possible that the overall pain level is slightly lessened than it might otherwise be.

Please be patient and allow time for your doctor to make the periodic adjustments of optimum dosage of the pump's medication. The whole process can take several months.

I do hope you will also find a way to get relief for your other pain symptoms. Chronic pain in one area is bad enough without having to deal with other pain problems. Best wishes to you.

Aloha,
Bob

Hi Bob,

I just got back from the dr's. He said that the pump is attached to my muscle and that the muscle itself may have been altered by a previous surgery and therefore, be patient it will go away. It is my personal opinion that the brace may be used more for women to help keep those muscles tight. It is just an idea, but the brace really does help. On an other subject, like Josh, I too am experiencing some swelling in my ankles. It did not stop the doctor from increasing my medication today, but if it gets worse he will change the medication in 3 weeks. I am allergic to Baclofen so I do not know what other medication they will use. Do you have any idea? If it is just my ankle swelling I think I would rather deal with that then go back to my pain or go through what Josh did. Any thoughts or comments would be greatly appreciated.

Have a great weekend

Hi Connie,

I can't comment on other medications as I've only had morphine sulphate in my pump but I do know there are several others that are used depending on the patient. It does sound like you are having some side effects but I've not experienced any of them so, again, I can't comment.

I've had several increases in my pump's dosage settings but I'm still on the low side so I may have another increase at the next filling in September. I get refills every three months although the new style pump that I have can last up to six months before a refill depending on the dose setting.

I'm sure you'll get all of the problems worked out in time and glad that your back pain is less as a result of the pump which indicates that it's apparently doing the job.

Aloha,
Bob

Well I am still waiting for the VA to get around to sending me to see a spinal surgeon to see if I am a candidate for the "pump". I envy those of you who are getting some type of pain relief with the pump. The waiting game is nothing new though. In the meantime the frustration and anger has set in and they (VA) has sent me to a shrink which in turn put me on yet another medication to control anger/mood swings named (Divalproex) to add to all the "morphines". Is the anger, frustration and inablility to sleep due to pain something that comes with the territory? Along with that I am having to fight with a longtime disability insurance company (Unum Life Ins. Co. Of America) to continue my benefits on a policy that I had paid into for 12yrs. as a Municipal employee. Anyone heard of problems associated with this Co. as far as getting benefits you paid for? Any info would be greatly apprecaited and if I posted in the wrong category please forgive me. My primary (VA) Dr. filed yet another request increasing the priority but the wait continues.

Hi,
I thought I would put in my 2 cents worth. I went through the sleepless night due to pain, and in my case not knowing what was wrong with me, and sometimes I still do. But they gave me a muscle relaxer (Soma) and Cymbalta, which is used for depression but it also helps with pain. These meds helped alot as long as I really try to go to sleep within a half hour of taking the. As far as long term disability, I think all the companies are the same. Mine paid me for 3 months while they were trying to figure out if I qualified. A week before Christmas they decided I was not qualified. Now I have two lawyers, one for LTD and one for SSD. I was told this is completely normal and it would take 2 - 3 years to get it straightned out. We are in debt up to our eye but what else can you do? Try to keep your anger under control and aimed at the right place. If you need the meds then take them, if not then you need to tell them why. Talking really helps. Good Luck!

I thought it was the physicians that decided if one is qualified for a pump - not the insurance companies. I know the device is very expensive but so is surgery and many other types of implants.