Chronic Pain

quote:

Originally posted by Bob Engelbardt:
Hi Blu,

Glad to hear that your trial went well. After the implant, you can look forward to a much more comfortable life where chronic pain is no longer something that you have to face every day. The initial pump dosage setting by your physician may be different from the trial so you need to be prepared for a number of adjustments before you reach an optimum setting.


Thats a good thing to know and Ill keep that in mind if it is not the same. Thanks!

I wish I had the patient control option that you and others were provided. The pain clinic I use doesn't provide that feature yet for some reason.


I read that above Bob, thats a real shame IMO. It seems to really be the way to go.

I recently had knee surgery which went OK but I'm having a lot of pain which the pump doesn't control. The pain clinic confirmed that the pump would not help with the knee pain so I'm back to taking oral meds and really not feeling very well. I guess I got a bit spoiled after so many months of chronic pain relief but it's returned now in a different area. Very disappointing!

Im kinda surprised that the pump didnt help with that pain. I mean..my knee pain si excruciating and it went completely away.The only real different feeling I noticed was a kinda pre sleep tingling in the lower extremities. Not unpleasant, just noticible.

I CAN see how you can get spoiled thoughLOL Heck, I was after the trial! I told the doc, " Lets do this...NOW!"

Well...todays the day and were off to the hospital.

Wish me luck on lucky surgery # 13. YIKES!LOL

Talk soon,
Randy

Good luck, Randy. I'm sure you'll do fine. Give it plenty of time for optimal dose adjustment by your physician.

I found to my disappointment that the pump works great for controlling my back pain but has little or no effect on knee pain. I may need knee joint replacement in the near future due to osteoarthritis deterioration. Just another challenge as we age, I guess.

Bob

Hi guys!

Sorry about your knee pain Bob I hope that starts to get better for you soon.

When people ask me about the pump the # 1 thing I say is to be patient patient patient. I have to keep reminding myself that because it's easy to get discouraged. I do feel that getting the pump was worth it because my original pain is better but I still have quite a bit of pain and it has been a SLOW process. Everyone warned me so I'm hanging in there.
I just had my pump med changed to Dilaudid since the morphine was making me swell so bad. I was gaining 1-2 pounds a day and I haven't changed my eating hbits. Bad news is that we had to start low again since it's a new med so time to be patient again

Bob (or anyone that has the pump)- Are you able to see you cathedar under your skin? My mom noticed this big bump on my back (right along my scar) and I asked a nurse about it and she was in a hurry, looked at it and said it was my cathedar. She wasn't sure what to think and said she would mention it to my doctor and they haven't said anything. I'm just wondering if anyone thinks it's something I should be more concerned about?

The only part of the pump that's visible on me is the pump itself which is located on the left side of my abdomen. Although I'm fairly slim, I can't see the supply catheter that runs from the pump to the spinal catheter. It's possible that they routed yours closer to the surface but, unless it bothers you cosmetically, it shouldn't pose a medical problem.

The pump can be filled with several kinds of medications so they can change it if you are having problems with morphine. I've not heard of the swelling problem but it could be an allergic reaction.

Hi, My name is Ray and I'm in the first stages of thinking about getting this pump. And I'm trying to find out what I can expect.

I am a male 60 years old, 6 feet tall, 185 lbs. I have MS and walk with a hard AFO brace on my left leg. My back pain started about 1 year after I started wearing this brace (2001). My MS neurologist suggested that I look into a morphine pump. I have been through L5/S1 fusion in March 2004. I been through PT, acupuncture, chiropractic, spinal blocks, RF nerve cutting and Skelaxin. I have avoided opiate drugs because of the drowsiness, constipation, fuzzy thinking, etc.. I have MS, but try to lead an active and independent life. I exercise almost every day at the health club and at home.

I have been living with the pain since 2001. The type of pain that I have is mostly in the lumbar area and tailbone. It sometimes goes up the mid back. The pain seems to be more in the muscles than in the spinal column. The intensity of the pain varies depending on position. I sleep on my side at night. When I first lay down, the pain is not too bad and I’m able to fall asleep fairly quickly. If I wake up 1 to 3 hours later, the muscles across my lower back ache very deeply. I take a Xanax, switch sides, straighten my body out and the pain subsides enough to let me fall back to sleep for another 3 to four hours. I often wake up and lay there changing positions for 2 or 3 hours, hoping that the pain will go away. It usually does not.

When I get out of bed and sit in my kitchen chair, the pain usually lessens. I cannot get comfortable in any recliner or sofa. The pain seems to be more in he muscles or ligaments in these areas. The tailbone has been checked and is not cracked. Exercise does not seem to bring in pain. In fact, I very seldom feel pain when exercising. I can lift 25 lbs without bringing in sharp back pain.

I have many questions, in no particular order, and I hope that you or someone can help answer them.

It looks like this pump is about as round as a chewing tobacco can. How thick is it? It appears that it is placed right under the skin on the side of the stomach. Is that true? I don’t have a lot of body fat. Does it move around a lot? Are you aware of it all the time? Do you feel it on or near the ribs or on the hip bone? Is it uncomfortable when you are side sleeping? Some people mentioned large weight gain and/or edema. Is there a reason for that? Is this like a prednisone steroid in respect to weight gain and water retention? I don’t want to put on a lot of dangerous weight. Is weight gain the exception? Can you live an active life without worry about dislodging the catheter tubing? It is said that scar tissue eventually holds the pump in place. If this is just under the skin in the body fat, what significant scar tissue would there be? I already have itching that occurs on alternate day. The source is unidentified and the medicine does not agree with me. I may get it because of the constant back pain. I do not know. Will the morphine pump make it worse? Will the morphine pump render you impotent? Will this pump help deep tissue or muscle or ligament pain?

One place on the internet says that qualification testing is on an out patient basis, another says it is inpatient testing that may last up to a week. What is the norm? Like I said, the degree and area of my pain varies by position, sitting, standing, walking, or sleeping. The exact source or sources of pain are not identified. It may take me 24 hours to come up with a definitive yes or no. Does the morphine take care of all of the above?

Can you have a MRI with the pump?

How is it getting through airport security with the pump?

Do you have to be careful around microwaves or other devices that transmit energy like cell phones or pulse monitors?

Is it true that the morphine pump does not affect your energy level, thinking, equilibrium or other cognitive functions?

I would appreciate any honest answers (good or bad) that you can provide.

Thank you,

Ray

Hi Ray,

"It looks like this pump is about as round as a chewing tobacco can. How thick is it?"

ANS: About 1/2 inch. The later versions are larger so that they hold more medication and require refills about every three months or so.

"It appears that it is placed right under the skin on the side of the stomach. Is that true? I don’t have a lot of body fat. Does it move around a lot? Are you aware of it all the time? Do you feel it on or near the ribs or on the hip bone? Is it uncomfortable when you are side sleeping?"

ANS: I also don't have much body fat but I really don't notice the pump being there although I can certainly feel it with my hand. It does not move around much and is located below the rib cage and not near the hip bone. Some people have the pump removed because they are very aware of it and become obsessed with its being there but this isn't common. It doesn't bother me at night and I normally am not aware of it being there.

"Some people mentioned large weight gain and edema. Is there a reason for that? Is this like a steroid in respect to weight gain and water retention? I don’t want to put on a lot of dangerous weight."

ANS: I've had the pump for almost 1 1/2 years and cannot associate weight gain with it. The medication used is not a steroid and should not affect one's weight or cause water retention. There are several analgesic narcotic medications that are generally used, the most common being morphine.

"Can you live an active life without worry about dislodging the catheter tubing? It is said that scar tissue eventually holds the pump in place. If this is just under the skin in the body fat, what significant scar tissue would there be?"

ANS: I did have three catheter failures where the tubing kept slipping out of the spinal cord but, after having it revised by a neurosurgeon who placed it further up and used a thicker tube, the catheter appears to be holding. Catheter failures are relatively uncommon.

"I already have itching that occurs on alternate day. The source is unidentified and the medicine does not agree with me. I may get it because of the constant back pain. I do not know. Will the morphine pump make it worse?"

ANS: You may have some kind of allergy to certain medications but I have not experienced itching from the pump. You probably won't know for sure until you have it implanted and working for a period of time.

"Will the morphine pump render you impotent?"

ANS: The pump itself won't affect impotency - but the medication used might; however, it's very unlikely. I have had this problem from taking anti-depressants but the morphine in the pump does not cause impotency.

"Will this pump help deep tissue or muscle or ligament pain?"

ANS: I don't know about this and perhaps you won't until you try it.

"One place on the internet says that qualification testing is on an out patient basis, another says it is inpatient testing that may last up to a week. What is the norm? Like I said, the degree and area of my pain varies by position, sitting, standing, walking, or sleeping. The exact source or sources of pain are not identified. It may take me 24 hours to come up with a definitive yes or no. Does the morphine take care of all of the above?"

ANS: The trial generally takes one night in the hospital but it varies with the individual. In your case, because you apparently have multiple pain sources, the trial may take longer but a week sounds a bit excessive. My pain was limited to the lumbar area and was immediately relived during the trial that lasted only one night in the hospital.

"Can you have a MRI with the pump?"

ANS: According to the brochure, yes. So long as the material in the pump does not contain iron or other magnetic substances, an MRI should be OK.

"How is it getting through airport security with the pump?"

ANS: I took a trip just a week ago for the first time since having the pump installed so I wondered the same thing. Of course, the bells will sound as you pass through the detector and the agent will take you aside and check you out thoroughly. You also will have a card issued by Medtronic, the pump maker, that identifies you as having one. People with implants like pacemakers travel all the time so those with the pump would be treated no differently.

"Is it true that the morphine does not affect your energy level, thinking, equilibrium or other cognitive functions?"

ANS: Compared to taking oral morphine or other oral analgesics, the amount of medication produced by the pump is a fraction of the amount needed to be taken orally. Thus, most of the side effects of oral narcotics will not be evident when using the pump. You may be prescribed some oral medications to be used for "breakthrough" pain that sometimes develops which the pump can't handle and these can cause such side effects but the pump itself should not."

"I am on medicare. How much does something like this cost?"
ANS: Medicate pays for the pump implant AND the medication that's it filled with. I, too, are on Medicare.

I hope I've addressed your concerns, Ray, and don't hesitate to ask more questions.

Aloha,
Bob

Bob,
I just wanted to stop in on this thread and say THANK YOU for answering everyone's questions about the pump. I don't have one, so I can't answer the questions like you can.. although I have spoken with physicians about having one placed.
I have a question - have you met anyone that doesn't have back pain that has had a pump placed? I was reading this thread and found it interesting that the medication did not cover your knee pain (by the way, getting a joint replacement might seem scary, but many people that I talk to are VERY happy with theirs and have many years of *complete* pain relief!).

I am wondering how the pump would do in a head pain situation, as I have TMJ disorder and bilateral total joint replacements. I guess I would be REALLY bionic if I got a pump, too! hehe!

Thanks again, Bob!
Sincerely,
Stacy

Hi Stacy,

I was told by the pain specialist that the pump would not have much if any effect on my chronic knee pain. Remember that the pump places medication in the area where it's being generated. In the case of back pain, the discomfort is generally caused by joint problems and the medication travels up and down the spinal column (in the sub-achroniod region). I don't think it will help with TMJ but it would be best to consult with a pain management specialist or clinic to be sure.

Thanks for the comment on knee surgery. I've heard similar comments so I'm prepared for a successful procedure. Like any surgery, I just don't look forward to another hospital visit.

Best wishes,
Bob

Bob,

Thank you for being so kind as to answer my questions. As you probably noticed, I hit the paste twice and did not notice it before I posted my questions.

Your answers will really help me to make an informed decision.

One other question - Do you have to be careful around any electronic transmission devices.

Ray

Well I saw an orthopedic specialist throug the VA and as I suspected he referred me to a spine surgeon in the hopes that I can have the pump installed if I am a "good candidate". I currently am "maxed out" on oral morphine meds and still have pain especially when walking,standing or sitting. The ortho Dr. said that it looks like my body has grown a tolerance for the oral morphine so with any luck I will be a good candidate for the pain pump. I had a multi level fusison from l-5 to s-1 in 2003 and it seems to not have addressed my pain issues with continued pain down the left leg to the top of the foot and into the right side of the hammy and along with a tolerance to the oral morphine meds I am almost at the end of my rope so to speak. Although I know I will never be pain free, I would welcome a knockdown of it. Let the waiting game begin.

I had the same experience as you. Your body will become more tolerant to morphine and other narcotic analgesics as you continue taking them orally. They may become less effective in pain control along with their unpleasant side effects as time goes on.

The pump can provide better pain control with fewer side effects because it uses a fraction of the dose of medication that would otherwise be taken orally. Because the body doesn't have to metabolize the medication as when it's taken orally, much lower doses can be effective because it is applied directly to the pain causing area via the spinal cord. The medication travels up and down the spinal cord between the damaged joint(s) and the brain where the pain is detected.

I hope you will have an opportunity to experience the trial soon which will help determine if the pump will be effective for you.

Good luck,
Bob

Upon reading my post I noticed that I listed the area wrong of my fusion which does not make much of a difference but it was from L-3 through S-1 in any case. I am just playing the waiting game now as usual with the VA and have heard many good things from Vietnam era veterans who have the "pump" installed. I am looking forward to seeing what it can do for me pain wise. I am tired of the pain and what I call "short circuits" while attempting to walk. I have had to use a cane ever since the surgery and still have significant weakness. It took them a little over a year to "finally" do my surgery after playing guinea pig and hot potato with me from specailist to specialist, so I guess you can understand what I mean by "the waitng game". Thank you for your info/input and will keep you posted if and when they get around to it. I guess you could say I have learned to be patient within the VA healthcare system. Thanks again.

im glad this site is here, i wish i had found it before, its hard living with severe pain and wishing i wouldnt wake up. has any one else ever felt this way? thanks dave

Hi Dave,

I think many people with severe or even just moderate chronic pain feel the way you do. If you let it, chronic pain will attempt to take over your life because it's always present although some days may be better than others.

Of course, it's important to determine the cause of chronic pain to see if the problem can be corrected which could include surgery. On the other hand, if the cause can't be precisely determined or corrected, then chronic pain control may be the next step. Physicians and clinics that specialize in pain management are best for this as general physicians may simply prescribe oral medications which may be only partially effective and can result in side effects if taken for a long period of time.

In addition, if narcotic medications are prescribed, they may be very effective at managing pain but have unpleasant side effects such as constipation and fatigue, notwithstanding their propensity for addiction.

You may want to provide more details about your situation so that others can comment if they've had similar experience.