Chronic Pain

Hi Mag,

Thanks for your reply. I had the trial back in July it was suppose to last for 4-6 weeks but I only made it one week as my cathether had fallen out and they had to end my trial. As soon as I got home with the trial the next day I was sick with vomiting, nausea, and running to the potty this happens all day long. I had asked my doctor at that time when I was having the trial explanted if he thought the sickness was from the medication and he said no but now I have the real pump and it all started again the day after the surgery. I don't think I have a spinal leak as I did with the trial and I had a really bad headache which I do not have this time. I am so frustrated at the moment and not sure what to think or do. I have a diease called Stiff Person Syndrome which cause severe muscule spasms which right now mostly affect my back and my legs so that is why they thought this would work out better then the oral baclofen. With the oral baclofen I never had any side effects like this. I was not sick prior to either surgery. My cathether is placed low and my dosage is low as well.

Update::::
I went to the doctor and they decreased the baclofen amount by half so we can see if that makes a diffrence, I go back next week and if need be we might turn it off to see if that helps more.

Hello Everyone... Im a newbie and I would just like some info. I had my pump installed on 10-14-08, Ive had 5 failed back surgeries 2 fusions on my cervical with stenosis, two on my thoracic, and one on the lumbar. I was on oral pain meds for about 7 years with no relief. Three days after my pump implant I came down with Meningitis which landed me in the hospital for two weeks. Most of my pain was in my lower lumbar and down my left leg to the big toe. Ive had great relief with the pump, however I still have to take 2 percocet every day for break through pain along with soma 4 times a day. Ive found since my suregery my thoracic seems to be bothering me alot more, almost to the point to where my lower back seemed to be prior to the implant. I was under the impression that the pump would relieve the pain in my entire back. My pump is a medtronic synchromed 2 and the dosage is set at .8888 Ive also noticed alot of muscle spasms, has anyone else had any of these problems, Id love to hear from anyone who could help. Thanks for listening

In 2001 I was fused L3-Sacrum twice, 1st failed a year later, fused C4-C7 in 2002. Cervical fusion relieved neck pain completely for past 6 years,terrible neck and head pain returned 2 mths ago,am being scheduld for fusion C3-C4 (collapsed C3-4 doc said),my lumbar fusions were pretty much a disaster as far as help. Never should have had them. Destroyed the great life I had. Only problem I had pre-surgery was sitting---seriously and surgeon said fusion would fix it. Some docs like to do surgery$$$$$ Hindsight. 10mg Meth x 2 and 30 mg oxycodone, helps a little to be horizontal all day, age 60. I read these posts when I am considering pain pump. Ends all thought of pain pump but I still dream about it helping. Desparate people here for sure. good luck to all. Don't have a fusion for a minor problem like you can't sit for more than 10 minutes at a time.

Hi
I've been living with chronic back pain and radiating leg pain since 2001. I had two back surgeries (L5,S1) that failed in 2002. After that I developed scar tissue wrapped around my sciatica, spinal stenosis,degenarative disc and facet joint disease. I've been on every pain, nerve and muscle medication out there. I also have been through rhizotomies and corticosteroid injections. My doctor told me years ago I should get the morphine pump. Te truth is I am scared at what might go wrong. But I mostly scared that it won't work. It's like my last resort. I have not been able to work since 2001, I've also not been able to do alot of things I use to enjoy. Now a days I do things like wash my car and know that I'll pay the price later in the evening.
I am revising the pump idea because recently my wife, who is a registered nurse in an emergency room, became ill with dizziness among other symptoms. She is not able to return to work until they are able to find what is wrong and how to treat it. Her paid time off is maxed and since she hasn't been with this hospital for a year she is unable to have a medical leave. The point is I feel horrible that I can't help out by getting a job. I really have never heard anyone say that the pump made it possible for them to go back to work. Is there anyone who was able to do just that?
Anyone with advice?
David

Hi David,

Although I had the pump implanted after I retired, I can testify that it is very effective in controlling chronic back pain. I am almost free of pain now and could go to work if I weren't so old. (77)

I will say that you will have to accept the fact that you will have a device in your body that provides medication over which you have no direct control. The pump is adjusted by the physician and it may take a number of visits before the optimum opiod dosage is established.

There is no question in my mind that it can work but everyone is different and your pain may not be completely controlled by a morphine pump.

That's why they require a trial requiring an overnight hospital stay. During that time, they will inject some morphine into your spine to see if your pain is controlled. If you experience some relief, then you are cleared for a pump implant. That implantation procedure is generally done on an out-patient basis and may be performed by a neurosurgeon.

Many of the people who post in this forum thread have not had the pump implanted and most people who are satisfied with it won't bother to post a "it's working fine" comment.

Now, although I'm a proponent of the pump, I have had some rather mysterious medical problems as of late with symptoms that may have something to do with the morphine even though I'm at a relatively low dose (less than 3 Mg. per day). It's possible that my back pain has lessened over the years and that I don't need as much morphine or, perhaps, none at all.

I've been having the morphine dosage periodically reduced and, if I don't experience a return of the chronic pain, I may even have the device removed.

I've had the pump for some years now and, other than having the spinal catheter slip out a couple of times, it's been working fine and is very effective in controlling chronic back pain.

I suggest that you find a chronic pain management clinic in your area for more information and perhaps an analysis of your condition to see if the pump would be recommended.

Best wishes,
Bob

My pump was installed march 08 so far the catherter has come out three times and is now again causing problems my dr pulled and pulled on the cathter port nothing finally got frustrated and started pulling and letting kinda popping it each time shooting sever pain down my bad left leg and now my heel furts, now they want to do the dye study bad thing is i have thoracic and lumbar surgery 12/9 08 on thoracic they three weeks later the lumbar all the time morphine withdraws one after another. can anybody please tell me who to talk to medtronics blows me off stating they dont log complaints I have to take it up with my doctor. how can he keep charging mi insurance company 500.00 for his mistakes alll help apreciated.. Lost

oh yea the wife swears she feels electricity on and around my pump...

Hi MaxPain,

Sorry to hear about your problems. I also had three catheter failures and finally had a neurosurgeon do the revision and it's held ever since.

Normally, a Medtronic representative is present during the procedures in the operating room? Was one there for you?

It sounds like the surgeon became frustrated and did not follow the correct procedures. I'm surprised that he behaved in that manner.

I sympathize with you on having to withstand the miserable withdrawal symptoms after the failures.

Now, I keep on hand bottles of over-the-counter anti-nausea medicine and a prescription for Phenergan suppositories called Phenadoz. This would at least lessen some of the withdrawal discomfort if something should occur again that would suddenly stop the flow of morphine such as catheter or pump problems.

As for your wife's observation about feeling electricity near the pump, I don't think that's really possible The Medtronic morphine pump runs on a small DC battery which would not radiate any energy that could be detected by a person. If that were the case, you, too would feel it even stronger

I hope you eventually had everything fixed and working normally.

Aloha,
Bob

I have had a pump since 2003 my Doctor retired leaveing me with his partner, who he and I have not gotten along forever. He took away all my oral meds in which I do need, a little percocet, and valium.He put on methadone, and wanted to put prialt in my pump. I refused, and he said he could not help me. I went out and saw 9 Doctors in my area, they all said they could not take me as a patient, because they did not put in the pump. This sounds like maddness to me. I am wondering if it a law in New Jersey. Has anyone else had this experience. I will be going into Withdrawl soon. Not looking foward to that. Thanks for any help. Joey G

P.S Is this Doctor I was seeing a canidate for malpractice ??

Hi Joey,

Sorry to hear about your problems. I've not had the experiences you describe but when I see a regular physician with a symptom that's not easily diagnosed, they always seem to suspect the pump as the cause. This is because most physicians, who are not pain specialists, know little or nothing about intrathecal pain pumps or even pain management in general.

It sounds like your new doctor is starting from scratch as methadone is often the first medication that's tried on new patients. Then we work our way through a number of oral medications before they decide to try the pump which is really the last resort.

I think pain management specialists have a very tough job. Most of their patients are in real misery and finding effective relief is often a long and truly PAINFUL process for both the patient and the doctor. They must also be careful that the patient is truly experiencing chronic pain and is not just a drug addict looking for narcotics. It's not always easy for them to determine this.

Therefore, doctor-patient relationships are sometimes less than optimum which only adds to the misery. In my case, I'm not overly enamored with the doctor that runs the pain management clinic I go to but he has a very pleasant nurse-practitioner who usually services my pump and changes the medication dose when needed.

I do believe all of us with the pump do need some break-though medication that may be an opioid but some physicians hesitate to prescribe them for various reasons.

Most of us become very opioid tolerant after years of treatment and, fortunately, true addiction is rare. I can honestly say that I've never experienced a "high" from any narcotic medications because I've never taken any except when I'm in pain. I truly never feel the need to take opioids unless I'm having pain that's not controlled by the pump.

Studies have proven that narcotic medications seem to work on parts of the brain that cause us to experience pain rather than affect our mood. Each person is different, however, so some may feel the affects of these medications in other ways.

My suggestion to you is to try to improve your personal relationship with your pain management specialist since other doctors, understandably, will not want to treat you when you have something implanted they know little about. I know this may be difficult but it may be the only solution for your situation.

I wish to the best and hope you will continue to post as this helps others in similar situations.
Bob

My husband had a morphine pump placed almost 4 weeks ago now to help control his severe pain in his foot from his RSD. We have been back to the Dr now daily for pump adjustments and still NO relief. We had x-rays last week which showed the catheter and pump were in the right location but he has had not one ounce of pain relief yet. The Dr assures us that it can take a while but this seems a little unusual to me. We had such great results with the trial. I think my husband is getting severly discouraged.

Hi Elaine,

Frankly, I've not heard of using the intrathecal pump for foot problem but, if the trial was so successful, apparently, it's a possible solution albeit, unusual.

I do know, from my own experience, that the pain specialists prefer to make small incremental adjustments to the pump output, often no more than 10% at a time. Also, it takes at least 24 hours or more before the results of such changes can be determined.

It may take some time and a series of adjustments before your husband will notice some pain relief.

Did the physician prescribe some oral pain medications to take while the pump adjustments are being made?

I ask this because it takes more medication to initially mitigate severe pain and bring it down to a tolerable level after which lower dosages of medication (whether orally or from the pump) will maintain a near pain-free level.

In other words, partially controlling the pain with oral medications while the pump is being adjusted may help in finding the optimum setting for the pump after which the oral medications can be tapered off and eventually stopped.

Please know that I'm not a physician and my comments are based solely on experience and research.

I wish your husband the best and please keep our readers informed of the future results.

Hi Bob,
First of all, I appreciate all of the information that you are willing to share with all of us out here that have questions. And we all know that we would be burning our Doctors out if we were to bother them with all of them.
I had the Intrathecal Narcotic Pump placed in July of 2008. Unfortunately, it had to be taken out due to infection at the pump site. I had the surgery done again 1/20/08 and everything is going well this time except for one problem. I am still having SEVERE pain higher up in my spine, right under my shoulder blades. The medicine in the pump, Dilaudid, has taken care of my lower back pain. It hasn't completely taken the pain, but I went from a 9 on the pain scale, all of the way down to a 5, sometimes 6 or 7.
I am puzzled as to why I am still having the severe pain in only one area. I sure hope that this is "psychological", my pain never has been.
Any suggestions? I appreciate it.
Sincerely,
Sheila

Hi Bob,
It's Sheila again. I wanted to let you know, that in my last post, I made a "typo". I wrote, "I hope that this is psychological" and I meant to write, "I hope that this is NOT psychological".
I just noticed that and wanted to correct it.
Thanks Bob.
Sincerely,
Sheila