Medtronic Pain Pump and Chronic Pain

Hi all! I am looking for some help and guidance about a issue that I have been struggle with for the last several months. I had a Medtronic Pain Pump for over 2 years now and for the last year and a half (1 1/2 year) it did a really great job treating my lower chronic spinal pain. The medication in the pump consisted of both Morphine and Bupivacaine. This mixture worked Great! But 6 months ago my doctor changed the mixture by adding Clonidine to the mix (Morphine, Bupivacaine, and Clonidine), which for some reason stopped working - managing my lower chronic spinal pain.

To add to the problem, the doctor moved from morphine to hydro-morphone, and now to fentenyal (Fentenyal & Bupivacaine) which has not done anything in the way of helping reduce my spinal pain. I took a genetic-test which said that Fentenyal would be the correct drug to use for me. I have had a couple MRIs one with contrast and they didn't show any leaks, but each time a new medicine is tried, the pump area becomes numb for a day or two and on the last pump adjustment, the skin around the pump was very firm - bloated (which lasted for a day or two).
Has anyone dealt with a problem similar to mine? I don't understand why the addition of Clonidine has stopped my pump from managing my lower chronic spinal pain. Or is their a leak in the tubing that the MRI with dye didn't show. I would like for someone who has experienced what I have, please shed some light on what happened and what can be done to fix the problem.

There was no problem till a drug called Clonidine was mixed with my Morphine and Bupivacaine. One other concern is that the nurse that fills my pump every 3 months told me that she accidently missed my fill-port around the same time that the Clonidine was introduced. But yet a MRI with dye was done to check for any leaks. Yet, not sure what to do at this point. I'm dealing with the pain as best as I can. I would truly appreciate any help/suggestions that anyone could give me on what can be done to resolve my pain pump issues.

I'm on OxyContin 80 mg along with 30 mg of oxycodone for break through pain. These 2 medicine are not doing much in the way of controlling my pain.

Thank You

Susie,
I'm new to this forum, I would like to add additional information to my post, but I'm unsure if the Quick Reply is the way to do it.
Please tell me if this is the correct way to proceed.

thank you

For 1 ½ years, I had the following medication in my pain pump: PF Morphine 10 mg/ml, and PF Bupivacaine 10 mg/ml in 41 ml of PF NS which worked Great!
Then the DR. wanted to treat another issue with the pump by adding Clonidine 100mg/ml – in 41 ml of PF NS to the original mixture mentioned above. Then to add another twist to this, the nurse missed the fill port and the needle went somewhere else. No, the nurse does not use anything but her finger to find/feel the fill-port. Shortly after the fill I noticed that my spinal pain was not being managed as well as before. It slowly started to get worse. The DR. then turned up the pump and the pain then went away, only for a few days and then the pain came back as before.
The DR. then changed out the medicine to the following: To the original mixture/dose for both the Morphine and Bupivacine. I had no pain relief as before. Then the mixture was again changed out to both Hydro-Morphone and the Bupivacine – and still no pain relief!
Just within the last 2 weeks the medicine was now changed out to the following: PF Fentanyl 1,000 mcg/ml and PF Bupivacaine 10mg/ml in 41 ml of PF NS. I had NO relief so the DR. changed the pump setting from 400 microns to 500 microns. Still No relief
I did notice during the last medicine change-out that my skin around the pump was somewhat numb and when the pump was turned up from 400 to 500 microns there was a little swelling around the pump area or sack holding the pump (the skin seemed stretched or tight around the pump area), which later shrank down the next or so.
I had a couple of MRIs (one with contrast), but it showed no leaks, so I’m at a loss about what is going on. I was told by a Medtronic Rep that a leak is possible in the catheter even is the dye study shows no leak. My DR. mentioned that if he goes in and finds no leak, then I have to decide if the pump gets removed or it stays in. Has anyone had a problem similar to mine and what did they do?
When the Clonidine was added to my pump, that is when everything seemed to go downhill for me and now they can’t seem to get me back to my pain free status as before. I am currently on both oral 80 mg of Oxycontin along with the 30 mg of Oxycodone (used for break through pain) which isn’t helping my chronic spinal pain very much. If the pump gets removed, then what?

PS it was mentioned that the medicine is both measured going into the pump and when removing it from the pump. Even thought the numbers match could a catheter problem still exist – fluid is still moving, either leaking out of the catheter or traveling to my spinal sack.

One other question: Susie, you said that you too had Clonidine in your pump. I take it, there was no issues for you with the Clonidine? My thought was that the Clonidine might have crystallized the tip of the catheter, not giving me enough of the medicine, but I wasn’t sure about that. I just don’t understand what happened after everything was working Great until the Clonidine was added.

Any help would be Greatly Appreciated! I'm not sure what to do at this point. Can someone please provide me with some answers.

thank you

Susie,
If you don't mind me asking, you stated that you have had 2 different pain pumps, was the Medtronic Pump not working?

During the first 1 1/2 yrs I had the pump it worked Great, the only thing I had to do at certain times of the day (if I over worked myself working in the yard etc.) I would have to use a heating pad on my lower part of my back for a few hours at a time till my pain wound go away. Sometimes I would use the heating pad for several days till the pain went away. But, after that the pain would be gone and the pump managed the pain very well.
What I don't understand is when the Clonidine was added to my normal pump medicine, it all went BAD! I don't understand what happen.
1. Could there be a leak in the catheter?
2. Could there be a leak in the pump?
3. Did the Clonidine do something to my spinal sack - where the medicine going into?
4. Did the nurse do something at the time of refill where the medicine is now not going into my spine?

What I do know now is that I can't use a heating pad on my lower back because it causes more pain. Is that because no medicine is getting to my spinel area?

Several months ago my DR tried to draw out my medicine- he told me that during that process - there was a HARD DRAW while removing the medicine, but he said that when pushing in the dye into the pump cavity he pushed the dye through to open up whatever was causing the HARD DRAW. The DR told me that the dye went in fine after that. After this procedure, this is when the Medtronic Rep told us that there are times when the catheter leaks and it wont show up with the use of dye.





How common is it to change out the pain pump and catheter?

If my DR won't do it what other medical institutions (that specialize in chronic spinal pain) would be interested in taking on my case?

My DR is NOT very interested in resolving the problem!
That is why I am asking to be pointed into the right direction where I can find a DR that wants to help me. I don't have to tell you how bad chronic lower spinal pain hurts.

Due to the DR schedule, I will have the answer for you on how much medicine I'm getting in a 24 hr period with my pump.

Thank you for replying to my post.
I truly appreciate you help!

Thank You

My first pump was a Medtronics & of course after time the battery died & it was time for a new pump. Being under the care of a different PM dr, for whatever reason she would not use Medtronics pumps in her patients. She insisted on Codmans to be the replacement pumps. They are outdated & a manual pump that no PM dr wants any part of. The Medtronics pumps are more up to date. Here is an example of a Codman, if I need an increase they have to drain the pump & start over with new meds, very much outdated. This Codman is a larger unit & has migrated. I am waiting to have it removed & a new one put in as I have a mass on the tip of the catheter. It has clogged up the catheter & very little medication is getting through. The reason it did this is I was on a very high dose in my pump & thats a risk. My current PM dr was horrified when he saw what the dosage is in my pump. My dr retired & referred me to him.

If your dr is not willing to help you resolve these issues look for another dr. Go to www.Medtronics.com & look on their website to see if there is a dr in your area. I know they use to have a list of drs on there. You can also call Medtronics & ask for names of drs in your area. You could very well have a small crack in the catheter & be losing your medication through it. If the pump itself was failing that would show up on the computer check.

I do not think it was the Clonidine injection that caused your issues. The medication would have just been absorbed by surrounding tissue.

Keep us posted.

If I read you right the dr wants to do away with your pump completely & not replace it all. When there is a problem such as yours the usual protocol is to replace everything, not parts of it. Again, personally if this were me, I would find a new dr. You have said it yourself he doesn't want to help you so what is the point of staying with him. I don't believe this injection again is the way to handle things you have already had success before. Your problems are of a mechanical nature not physical.

What state are you in? If you are close to Indy that may be a possibility. Other than this PM dr are you under the care of any other specialist? What about a good PCP? Either of these could make the referral to Indy.

If you will click on the White Beards name it will take you to his profile where you will find his email address. You can send him an email about the questions you have about his dr. Be sure to put in the heading of your email that you are from HW with a pump questions.

Keep asking questions this is how we learn. Also, you can do a google search for pump drs in your state to get an idea whats out there. I just went on Medtronics web site & they have a place to put in your zip code & it will give you a list of pump drs in your area.

Um, I was told no heat to the back or stomach areas once I got a pump. One dr actually banned me from our jacuzzi. Stupid me listened to him. I never got the tub over 98.7 because of blood pressure problems. My next dr allowed it as long as I kept the tub at 98.7. I am seriously thinking you may have a crack in the catheter that happens. A catheter can come from the mfg with a crack & no one know it until the patient gets no relief.

Where is your pump located in your stomach area? Clonidine is an old medication. It is used off label in patch form to help with withdrawals from narcotics. When the nurse injected the Clonidine & missed the little port that is located on the top of the pump is was absorbed by the surrounding tissue where the pump is located. So there is no way the medicine could get into the spinal column.

I would find myself a new dr that is willing to replace everything!!!!!

You should have been given a booklet by your PM dr that came in the box with all of your equipment telling you the do's & don'ts. With your pump being in the front there really is no way the Clonidine could have come in contact with the spinal column. So, you can take Clonidine out of the picture. I am not the betting type but I am betting you have a small crack in the catheter & thats why you are not getting any relief.

You really need to go Medtronics website & read about pumps so that you are better informed.

As for WhiteBeard I cannot answer for him on his whereabouts. Do you live close to that facility?

Take care.

Susie,

On the last paragraph of my last reply to you, I was not sure if my questions were very clear, so I rewrote in again here. Please read the following below: Thanks

The Clonidine was added to my pain pump along with the Morphine, and Bupivacaine. This is why I thought that it might have changed something chemically in my spinal sack where any pain medicine now would NO longer work (possibly crystalizing in my sack or something). I know that this sounds strange but like I said, I don't know much about how medicine works. You mentioned that it could be the Catheter that could be causing my pain problem. What makes you say that? I can't find anything on the Medtronic website.
I will keep researching the site

Thank You

Susie,

Yes, I found it and have been putting it to use. I found 2 DRs on this site. One is in Northern Indiana (a private practice) and the other is at the IU Medical Center Indy. You suggested to change out both the pump and catheter - what do you base changing out the pump on? Personal experience, common sense or something that Medtronic has stated or what? I think it makes sense but I was wondering the reasoning behind it.

My current PM DR wants to open me up and look at the catheter for any leaks. I have a meeting with him soon to discuss it and my suggestion will be to change out both pump and catheter. If he says no, than I will suggest a second opinion for either IU or some other local PM DR. I want to get things going because I have been suffering with this horrible pain for 8 months now. I want some relief. I think that I will call IU tomorrow and ask questions about my issue to see what they tell me - before my meeting with my current PM DR.

Not only am I not able to sleep because of my pain level, but thinking about what to do next and if asking that both the pump and catheter be changed out is very stressful for me. Not sure how many DR will turn me down. I will take both Medtronic and IU Indy's recommendation. This is why I'm asking what do you base your suggestions on? I hope you understand my dilemma. I just want my pump fixed and working as before. I will ask about using heat on my lower back and could that have caused any damage to my catheter. I hope that IU can answer some of my questions.

Oh, by the way Susie,

I also wanted to add the I went to my family DR and asked the question about what to do. She suggested to have my current PM DR go ahead and open me up and look at the catheter for leaks and only after he found nothing (or no leaks) then I should have him close me up and then look to IU. I'm not so sure that that's the right way to proceed. My thought is (as mentioned earlier) to go to IU only if my PM Dr refuses to not change both my pump and catheter at my request. My family DR said that I'm over saturated with opioids and possiblly need the help of IU to clean me out and start over if pain meds are my only option. I really hope that someone can get my pain pump working as before. I really want my pump back.

I called IU this morning and ask about trying to get a second opinion from Dr. Wellington. But I was told that I need a referral from my current PM DR and then to have that faxed down to Indy and called 4 business day later to check if they have review my information and determine if I will be accepted by them for either a second opinion or as a patient. The earliest appointment available is at the end of August. That is a long time to wait! That is also depending on if they accept me for either a second opinion or as a patient. I emailed white beard to let him know what I was told by his doctor's office. Anyway, I plan on meeting with my current PM DR this Thursday and see what he is thinking, I will request that both my pump and catheter be replaced. If he refuses that suggestion, then I will ask to send a referral to IU (Wellington's office) and wait. Not sure what else to do at this point. The reason I want IU is because I think if anyone can find my problem and fix me it you be them and if my family DR is correct that I'm opioid saturated then they can help me with that too.

Susie,

Yes, my PM Dr did implant my pump. No, he does not mix the medicine that goes into my pump - a pharmacy provides the medicine. This pharmacy company does a lot of pump patients. Not sure how long my PM DR has been doing pumps, but I guess its has been maybe around 5 years or less I think.

I was shocked when I was told that I will need to send a referral to IU Pain Management Group to even be considered to be seen by their PM DRs there. Then if I am accepted as a patient, it will take as long as the end of August to even get in to see the doctor. I wish there was someone that could help get me in to see that group at IU.

As for my primary care doctor, I told her that the current medication that my PM DR is giving me is not working as well as before. My Primary DR said that was because most likely that my body is opioid saturated and in order to keep it to a lower dose is to dry my body out so I can start over with the medication to manage my pain. I told her that I wanted to go to IU to get my pump/catheter problem fixed so I can have my pump back normal. I told my family doctor that my current pain meds aren't helping as well as before - her guess was that my body might be saturated with opioids (because of the high amount of oxycontin and oxycodone) that I am on to help manage my pain. She said that if I get into IU they might look at that and manage my pain without increasing the oral pain meds by drying me out and starting over so they don't have to increase the oral meds more than what I am currently taking. If the pain pump cant be fixed to manage my pain as before.

My family doctor was not trying to hint about a rehab stint for me. She really didn't want to get into that discussion, I just asked a question, why my current pain meds aren't working as well as before. I told her that my current PM DR didn't want to increase the meds to help me with the pain. She said that more pain meds could cause me to stop breathing. In order to keep it to a safe level a body need to be dried out and then start over with those pain meds. All I want is to fix my pump and manage my pain level during the process (by taking oral meds if necessary) - till they can fix me.

My big concern is trying to get to IU. I hope once they look at my referral they accept me and get me in soon as possible. I wise that I knew someone that can PULL SOME STRINGS to get me in at IU. I really want to see White Beards pain management doctor.

Susie, I have been looking online at Medtronic to see what recommendations they have regarding my problem - catheter leaks, pump problems etc... Even not to use heat on the catheter etc... Using Medtronic's website is very confusing.

Thanks

Susie,

I reread your post from 4/14/ and about the doctor or nurse being able to check my pump at refill to see if the pump is working properly. When I have my meeting this Thursday with my current PM DR about his plan on opening me up and just looking, I will ask that he replace everything, but if he refuses and might only consider changing out the catheter is that acceptable in your opinion or its all or nothing. In other words, I should then have my current PM DR send a referral down to IU and hope they consider me and accept me for a second opinion and as a patient too. Not sure what I will do if IU does not accept my case.


Not only do I have to deal with the pain but also the stress - trying to find someone who will change out both the pump and catheter.