Chronic Pain

Good morning Mag1 from Oregon. I read your post and I must tell you I agree with you 100%. I've had my pump since Oct 2006 and have regretted it every since. I've had a broken catheter which required more surgery to repair plus, my physician accused me of abusing my oral meds for break through pain when the catheter failed and so I was taken off all oral help all together. Do you know about the FDA recall? There's something your physician won't tell you about unless you ask. Seems they have a problem with the distal tip of the catheter that over time may cause a mass to develop from the opiates they deliver. I've asked the FDA why they call it a recall and can not get a straight answer. If you pump is made by Medtronics, you may want to visit their website and ask about the model numbers involved. There are answers out there, you just have to keep looking. My story is too long to go into but I did want to reply to your post as I sense your continuing pain and frustration.

Hi,

Because not everyone will respond positively to the pump or the medication used in it, an in-hospital trial is required whereby a temporary catheter is placed in the spinal cord and the pump is simulated by using a standard hospital medication pump that is often used following surgery for pain control. The amount of medication is adjusted to be similar to what the pump will do.

My question is, did you undergo the trial before the pump was implanted and did you realize any relief from your pain during the trial period?

If this step wasn't taken, you may very well not be a candidate for the pump and it shouldn't have been implanted in the first place.

If the trial was successful, did you ever have any pain relief at all after the pump was implanted and adjusted by the physician or clinic personnel?

If you subsequently determined that the pump was not controlling your pain, was an x-ray taken to be sure the catheter in still in place and not bent or broken? Was the catheter itself ever replaced? Did any x-rays show that the feeder tube between the pump and the spinal catheter was damaged, kinked or broken?

Any one of the above problems could cause the pump to be totally ineffective. I've had several spinal catheter failures but after it was revised by a neurosurgeon, I've had no problems and the pump is greatly reducing my lower back chronic pain.

I'm so sorry to learn that it's not working for you.

Aloha,
Bob

Hi robtodnn

Thanks for your reply. With any luck I will be getting my pump out soon!!!

I do feel it has been a terrible waste of money(fortunately not mine) but the information out there,although plentiful, didn't prepare me in any way for the reality of living with a pump. Perhaps I could have come to terms with it if I had had even a small reduction in pain.

The Drs tell you that the side effects from narcotics are minimal with pump...Ha!

Thanks again, Mag1

The reason they say that side effects from narcotics when using the pump are minimal is because if the pump is working properly and controlling the chronic pain, the amount of narcotics is a fraction of what would be needed to obtain the same level of pain relief using oral narcotics.

The dose taken orally is generally much higher because the body must metabolize the medication throughout the system whereby the pump and associated spinal catheter places the medication closer to the source of the pain.

The narcotic is circulated within the spinal cord and does not involve other areas of the body. Things like constipation will be lessened or completely eliminated.

I my own case, I was taking large doses of oral morphine before the pump was implanted and now I'm only getting the equivalent of 3 Mg. per day vs. 90 that I was taking orally. No more constipation or other side effects are evident.

Sorry this isn't working out for you but we are all a bit different in the way we respond to medications.

Hi friends, all of the experienxes you have been through must be so overwhelming. That is what I am feeling right now. I had my pump installed in 11/04. I am on dilaudid intrathecally, and fentora orally. Last week my empty alarm went off on my pump. Being as if I couldn;t see my pain doctor for 4 days, I was admitted to the hospital, given an MRI of the cathedater, and medicated till I could see my doctor for a refill. to my dismay, my Dr. told me he can no longer due pumps and to go see another dr.100min. away on Friday to fill my pump. I just lost my insurance, so this new dr.s facility charged me 1,000$ for the refill. The Dr. found out just before my refill and he said, I should now go to his office for the pump. Then when he looked at the computer, my pump said it was empty, but their was still 10ml left or 1/4 of the medication was still their. He said my pump is broken and that if I don;t get it fixed asap, I could have a seizure from the withdrawl. So I now have no pain doctor, so I called medtronics. They tolled me that I should have my PCP re-admit me to the hospital and have him call a medtronics rep. They said the rep would come to the hospital within 3 days and find a way to correct the problem. Has this happened to anyone else recently. What was your outcome. I do have the new version of the pump. thatnks for any advise.

I do fully understand all that Bob says BUT I was unable to take any narcotics orally which is why the pump was implanted. However,I proved to be highly allergic to Morphine,Dilaudid and Prialt in the pump. I was also given Baclofen and Bupivicaine. Bad news with these too.
So, I want it OUT a.s.a.p which will be at the end of the month.
Where do I go from there with escalating pain and disability from CRPS?
Any suggestions? I currently take Gabapentin 900 mg daily. Unable to tolerate larger doses as it seriously messes with my brain.

I have been through 11 doctors so far but now am too bad to travel or I would go Cleveland or maybe Duke for consultation.

Mag1

Hi Bob, my name is Sheila and I am so glad that you began this. I just underwent the Trial Phase for having the pump implanted this last Thursday and I am going in to have the permanent plant surgically implanted tomorrow morning. I am so sorry to hear that some people have had such negative experiences with the pump. I just wonder if they also had a trial phase. During the trial phase, I had a "cord" going into my spinal canal and it was constantly releasing morphine into my spinal canal or spinal fluid. I was in the hospital for only 2 days. I required .90 of morphine, that is all, and it is just a fraction of the amount of medicine that I have had to take, and I have such horrible problems with side effects to medicine. I won't go into all of the surgeries and the amount of surgery in the past, or my diagnosises, it is all pretty depressing and when people hear about all of this, they tend to feel sorry for me, and I don't like that. I am a 39 year old woman with a whole lot of life left to live, with a husband who deserves to have a happy wife and 2 kids that deserve to have their mommy back and I deserve to have my life back. I can only say this for the trial phase for the pump. My pain went from a 10 to a 2 and that to me is worth anything that I may come up against. I honestly hope that no complications will arise but in case that they do, I know that I will have adequate pain relief when they get them all worked out. I guess in my case that I prayed and prayed, I almsot lost my will to live because of pain, and I honestly see this pump as a gift from God. And I honestly don't want to be on pain medicine for the rest of my life. I hear such awful stories about addiction and how people go into renal failure and about so many bad complications from the oral meds.
I will let you know how I am doing about a week after I get out of the hospital, but I have a super possitive attitude.
I have one question for you, I absolutely hate the medicine that I am on. It is totally new and I won't even give the name of it on this site because it is so strong and potent, I would feel horrible if I had anything to do with someone asking their doctor for this med and if they got hooked on it. I do not want and will not need oral meds after I have the pump, and I want to just quit taking it altogether. Withdrawal only lasts for a week, right? Could you please let me know?
Thanks so much,
Sheila

Hello Sheila,
I wanted to reply to your post. You seem to have done all the right things concerning preparation for the implant and I'm sure, checked around. Those are all good things. My experience was totally different as I had a problem with my pain specialist and the fact that we, the paitents, were not informed about the potential for inflammatory mass developing in the spine where the distal tip is lodged. I personally feel it is going to be a growing problem in the future as it takes several years to develop. Good luck with your surgery. I'm glad to hear you have relief from your pain.
Bob

Hi Shiela,

I'm not sure which "Bob" you are responding to as I do a lot of posting to this site, too.

In any case, all potential users of the pump must first complete the trial phase as you have done with good results. This indicates that the pump will help reduce your chronic pain but don't expect to be 100& pain free. Also, certain activities may require you to take an oral "breakthrough medication like Vicodin or Lortab. As your physician gradually gets the pump properly adjusted, the need for such additional medication may be reduced or eliminated.

If you're fortunate, you may also be given a patient-operated external programmer that will give you a controlled temporary "boost" called a bolus for situations where you need a little extra medication which may eliminate the need for oral breakthrough medications. My doctor doesn't supply them.

The other "Bob" mentioned one of several problems that can develop with the pump. I had two failures due to the catheter slipping out of my spinal cord but I finally had that corrected by a neurosurgeon who placed a thicker catheter higher up into the spinal cord for additional support.

The other Bob is referring to a possible problem involving granuloma at the tip of the catheter. All such situations which interfere with the flow of medication from the pump will result in withdrawal but that lasts only a day or two. It's quite unpleasant and can cause nausea which you can relieve by using an over-the-counter anti-nausea syrup that you should keep handy.

Also, you can go back on oral medications while awaiting for the problem to be corrected especially if it involves revision surgery which can take time to schedule. Your doctor may prescribe something for you to keep on hand to temporarily control your pain while you are waiting.

I agree with you that some of the oral and patch medications can cause problems as I've had my share of them. While I can take hydrocodone (Vicodin) with no noticeable side effects, I had a bad time with a brand of patches that had a recalled batch of the same type I was using. I stopped applying them and had a most unpleasant withdrawal. I switched to a very effective (and VERY EXPENSIVE) morphine extended release medication that worked well before the pump was finally implanted.

The pump is considered by many physicians as the last resort after oral medications and patches prove to be ineffective or cause side-effects. Some people can also become addicted to them.

Keep us informed of your progress and we all wish success with the pump.

Aloha,
Bob

Hi Fieldgoal,

Medtronics has made a number of improvements to the pump that you had implanted so many years ago. Once thing is that the tank that stores the medication is larger and holds more so that refills are less frequent.

Although I don't have any specific details, I'm sure they've made other improvements relating to reliability, etc. You new pump should work fine and you won't have to schedule as frequent refills; however, be aware that the device is slightly larger and may be more visible than the previous one.

Hello, it's Sheila again. I had asked you a few questions and you had invited me to come back and let you know how everything went after I had the pump implanted.
Well, just so that you can get the overall setting, although my Neurosurgeon has done this procedure many times before, I was the very first patient that he had done the Trial Phase on at this particular hospital. UPMC, which stands for University of Pittsburgh Medical Center just bought the hospital some months back, and my Neurosurgeon has privileges at Presbyterian Hospital in Pittsburgh Pennsylvania. This is the hospital that he performed my last very major back surgery at. He is an awesome Neurosurgeon and he is part of the Presbyterian Neurosurgery Team and he is also a Pain Specialist, along with a Brain Trauma Surgeon and Spinal Trauma Surgeon. I can't say enough good things about him or the surgeons at Presbyterian Hospital. I just want everyone to understand that everything that went wrong, in no way has anything at all to do with him or UPMC or Presbyterian Hospital.
I was admitted on Thursday morning and all ready for my surgery and so excited because while I was going through the Trial Phase, I had such a large amount of pain relief. After I woke up in Post Op I was confused because of the amount of back pain that I had. There was a lady there named Jody, a Medtronics Rep that was in the OR during the whole procedure and who talked to me before, and I told her that my back was killing me. And she told me that the pharmacy didn't fill the order for the Morphine Solution that was to go into my pump. So, I got the pump and my Surgeon anchored the catheter into my spine quite well because I am only 39 and pretty active. But the horrible part is that the pharmacy didn't take care of what they were supposed to do. But the good thing is that I have an appointment at the Presbyterian Clinic on the 21st to have it filled and I do have to be admitted for overnight because my doctor wants to make sure that everything is working well and that I am getting adequate pain relief. He told me that he will gradually titrate me up to more medicine at my visits and adjust it as it is needed.
So, right now I have the pump in but there is only saline(I think)in it.
I do have a couple of questions for anyone out there who may have had these same symptoms after their pump was implanted. I have a horrible spinal headache and I did after the Trial Phase, but that only lasted for a day and a half. I didn't even have this headache until after I had been home for a day. How long should this last? I am drinking coffee and I do have relief from it when I am laying flat, but as soon as I stand up, my head feels like it's going to explode. I am not fevered and I'm not concerned, I was just wondering how long this lasts. And also, how long does it take before the severity of the pain eases up from where the pump is (in the belly)? The incision in my spine doesn't hurt one bit, but the incision in my belly was causing acute pain. I noticed a difference today, it has gotten a little better. I was just wondering how long the pain lasts with the incision in the belly.
I would appreciate it if someone could answer this for me.
Thanks so much.
Sheila

Hi Sheila,

I don't recall any unexpected acute and high level of pain around the implant area but, like any surgery, it will take time to heal and some people may be more sensitive than others to that type of pain.

Sorry you couldn't enjoy the chronic back pain relief immediately after the pump was implanted but I'm sure you'll notice some difference immediately and even more after they slowly increase the amount of medication being infused by the pump.

I recently asked for an increase because of additional physical activities I'm doing. My clinic does increases of just 10% at a time after the initial optimum level is determined. I'm now at 3.3 Mg./day from the pump as compared to 90 Mg. I was previously taking orally.

Also, I didn't get a headache following the surgery but as a coffee drinker, I know we can get theme if we skip imbibing for more than a day. If you were getting any in the hospital, it was probably too weak or it might even have been decaffeinated which would also do it.

At this stage of your treatment, one must be patient and realize that it will be some time before the surgeries are healed and the pump output is optimized. Also, you cannot expect 100% relief from your chronic pain.

I assume they gave you a prescription for Vicodin or its equivalent to handle the implant area pain and breakthrough back pain. These oral opiates will make things easier until you are healed and the pump is working properly.

Best wishes,
Bob

Hi Bob, it's Sheila again. And yes, you are right, my doctor did give me a script for oxycodone to get me through until I have the medicine put in. I did get a spinal headache when they first took the catheter out of my spine before I went home, after my Trial Phase. And this time I got one. I guess it doesn't happen with everyone, but it does happen with some people. My headache is a whole lot better this morning, I don't notice it yet at all, so hopefully it is gone.
I am so looking forward to the pain relief. I noticed in one of your posts that the doctors had you on a med before that was quite pricy as well. Mine was also a constant release of Morphine as well and I wonder if it was the same medicine. The name of the medicine that I was on was Avinza.
Thanks so much for helping people out with their questions Bob. This is helpful.
Take Care
Sheila

It's Sheila again, just one more thing that I wanted to add. You are right about not receiving 100% total relief from the pain from the pump. My doctor told me that he wants to get me to at least a 5 or a 6 on the pain scale of 1 through 10 and that he would be happy with that as far as my pain level is concerned. He told me that he will gradually titrate me up at appointments so that I won't be overdosed by the medicine in my pump.
I guess that I have been used to such a high level of pain that a 5 0r 6 sounds just good enough to me and felt good enough for me while I was going through the Trial Phase at the hospital before. I know though that once I am used to that amount of pain relief that I will probably want to get down to a 2 or 3. And I guess that it will take me taking oral meds for pain when I am more active.
I hope you realize how informative this forum was for me. Before I went in for surgery to have the pump put in and the catheter placed in my spine, I explained my concerns to him about the thing slipping out of my spine and he knows that I am active, so his nurse, who was in there for the procedure told me that he anchored it once and then anchored it again. He told me the only thing that I will need to worry about is if there would be a kink and I would know it soon if I started with severe pain again and withdrawal symptoms, and he gave me the name of 3 different hospitals to go to just in case that this would happen.
I have read some of the posts others have placed on this forum and I talked to the Medtronics Rep about all of the problems that some people seem to have had and she admitted to me that there are some doctors out there doing this procedure that shouldn't be doing it. And I guess Medtronics is cracking down on that. This is a fairly new procedure and it sounds to me that they are "nipping things in the bud". So hopefully people who truly need an Intrathecal Narcotic Pump won't be hesitant to trust because of all of the horror stories.
Again Bob, thanks so much for this forum, it helped me to ask the right questions(which were many)before I even went into the Operating Room, and thorough questions for the Medtronics Rep to answer for me.
Again thank you!!
Sheila