Pain Pump Questions (Already implanted)

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Marleigh
New Member


Date Joined Sep 2009
Total Posts : 3
   Posted 9/14/2009 12:17 PM (GMT -7)   
First, a little background, then my questions. (Sorry it's a little long)
 
 
I had a pain pump put in on Aug 6, 2009. Morphine was the doctors drug of choice when it was put in then, as well as for the trial. It worked like a charm for the trial and for two weeks after it was permanent. My pain level was down to a 3 from 8-9 before. After 9 years of chronic pain in my legs and back I was so excited and had hope that I was finally going to be able to have a life again.
 
I went to the doctors on a Monday to get an adjustment (two weeks after the pump was put in). The next day the pain started to come back. I gave it a few days to see if it was caused from me walking a little more then maybe I should have. By Thursday I was back to the pain level that I had been before the implant. I got an appointment for Friday. Because it stopped working so suddenly, I wondered if somehow the pump had got turn off or stopped working. At the appointment I learned that the pump was working and they upped the rate. It didn't affect me at all, the pain was still there. (Also, when the med stopped working I had all the symptoms of withdrawls, nausea, shaking, irritable, clammy, sweats, etc. Dr. said since I was still on a low dose of oral Opana that they weren't withdrawls...probably the flu. I just rolled my eyes because it certainly wasn't the flu...I know the difference.)
 
When I went back the next week they upped it again and made an appointment to do a dye test to see if the catheter was blocked or had become disconnected. It was neither blocked nor disconnected.
 
Last week they took out the morphine and put in a morphine clonidine mix. It really hasn't helped with the pain. I know they will do some more adjustments and it may take some time for this new mix to work but I am baffled as to why the morphine stopped working as suddenly as it did. The doctor said that I probably had developed a tolerance to it.
 
Does that make sense to anyone? Has anyone developed a tolerance to a medication that fast?
 
If that is what he thinks why would he use morphine with something else? Shouldn't we just not use morphine? Why would the morphine work so well for a few weeks and just stop like that?
 
I had such hope for a better life, getting a job and being social, when I did the trial and for the first two weeks that I had it and now I am just in pain and so down again. Can someone please tell me this is normal and that they will eventually find something that works.
 
Thank you for reading my long post and I am grateful for any answers, if there are any.
 
PS...I have been reading here for a long time and this is one of the places where I did my research about the pain pump. You are good people!
 
 

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 9/14/2009 1:59 PM (GMT -7)   
Marleigh
 
I really can't help you with the pain pump problem, but rest assurred that there are a few people here with them and I am sure they will be along shortly to help advise you! I just wanted to say "Hello" and Welcome you to the Healing Well Chronic Pain forum! No one likes to see anyone in pain, but I am glad you have found this place, and I am glad that this forum has already been of so much help to you! Yes we do have good people here! Very caring and compassionate people too! As I am sure you know ( since you have been visiting here for awhile) we all support each other!
 
 Again I Wecome you to this forum and our family here!
 
White Beard
Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


Marleigh
New Member


Date Joined Sep 2009
Total Posts : 3
   Posted 9/14/2009 3:44 PM (GMT -7)   
Thanks for the welcome WB.

Like you said, no one likes to see anyone in pain, but I am glad that there is a place like this for one to go to. While those in our lives are there for us there is no way for them to fully understand what a person with chronic pain or an illness goes through unless they have been there. And I wouldn't want any one of them to go through this just to understand.

I haven't posted here before but want everyone here to know that just reading here has made me feel better mentally knowing that I am not alone in what I have and am going through. And I am sure that I am not the only one that you have helped without knowing.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 9/14/2009 6:03 PM (GMT -7)   

Hi Marleigh,

Welcome to Healing Well. I too, have a pump and understand very well your expectations and such. Yes, I do believe that you did become tolerant to Morphine. Our bodies are such complex pieces of machinery. I have one that just does not tolerate most medications regardless what they are for. Dealing with me as a patient is a real challenge for all of my drs. 

I do not understand why your dr is leaving Morphine in the pump if he believes you have become tolerant, that makes absolutely no sense what so ever. Personally, if it were me I would request a different combination of drugs and have the Morphine taken out. Although, these pumps were designed for Morphine there are many drug combinations that can be used off label in the pumps safely. I could not tolerate Morphine orally and for some reason my goofy dr put Morphine in the pump when it was put in. I am like what the hell were you thinking here dr. I was livid. Well, long story short, out came the Morphine. I have Dilaudid, Clonodine, Sufentanil & Bupivacaine.

I do have a new PM dr since mine stopped practicing PM boy, was that a blessing in disguise. My concerntration level of Dialudid is 37.5, Clonodine 150mcg/ml, Sufentanil 15mcg/ml and Bupivacaine7.3 mg/ml. I receive 8.7 mg in 24 hours and this works very well for me at the moment. My first PM did not have enough knowledge of drugs or pumps to properly handle a pump patient. That left me high and dry with very low doses in my pump and me not feeling well at all. I went from 15mg concentration level to 35.7 in one visit and I felt like a human being again, first time in a long time. He kept telling me I was at my max dosage and I was far from being there and still am. Its all boils down to the drs being educated enough to handle these pumps. The only thing that ever changed in my pump on the readings has been the Dilaudid due to increases. My dr is exrtremely knowledgable in these pumps and has over a decade of experience with them. She is extremely well versed in drugs and does her own mixing right there in the office, she does not use an outside pharmacy. She leaves it totally up to me on when I need an increase. If one is needed then I call a couple of days before the appt and tell her nurse, the dr ok's it and it increased at my refill. I go every six weeks for a refill. I have a 90 pump which mine is an older model, it was implanted in June of 1995. My dr. says the pumps should be refilled every 6 weeks because the drugs lose their potency sitting there in these pumps, this was new to me too.

Do you have a PTM with your pump? That seems to be the new thing on the horizon, but to me its no different than the pumps that could be programmed to give a bolus at certain times of day. But, many people love the PTM.

I do hope you can get this straightened out with your dr. Please keep us posted on how you are doing.


Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


Marleigh
New Member


Date Joined Sep 2009
Total Posts : 3
   Posted 9/15/2009 8:30 AM (GMT -7)   
Thanks for the welcome and response straydog.

I have been with my PM doctor for 7 years and I really like him. He really does listen to me and does care and I think he is very knowledgeable about the PP. ( I have also had a stimulator implant from him). Since I have had the pp put in, for some reason, I have been getting appts with the nurse practitioners and I don't think they listen to me like he does and I think that is where the problem is. I got stuck with them for a while a few years back and didn't care for them and always made sure that my appts were with the Dr. After tomorrows appt I am going to make sure that I am scheduled with him again. The one NP actually made me feel like she didn't believe me when this all started and made me cry. I told her how I felt too.

I am going to ask tomorrow why they are continuing with the morphine if they think I became tolerant to it. I am glad it didn't make sense to you because it sure didn't to me.

Right now I have 2.5 mg of morphine and 62.48 mcg/ml clonidine. Compared to what you have in the pump that looks like nothing. I guess I just have to have patience until it gets figured out. It's just hard when it worked so well for those few weeks to not hardly working at all.

I do have a PTM but they aren't going to let me use it until we get the meds stabilized.
 
I will let you know how tomorrows appointment goes.

Post Edited (Marleigh) : 9/15/2009 9:34:49 AM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 9/15/2009 10:42 AM (GMT -7)   

Hi Marleigh,

Oh no, you are so right-you need to be seeing your dr for sure and insist that your appts be with him. If he ever questions you about seeing the other, tell him what happened. Thats BS, you have been a patient there far too long to have to put up with crap from some assistant in my opinion.

I would go ahead and get scheduled with him to get the Morphine out no sense in leaving something in there that is not working. I truly do not see how he thought adding Clonodine would help or even make a difference, all so wrong. I do hope he does right by you on this. There is a saying about pain pumps that is so true "your dr can either make your pump a success or a failure",. I have been on both sides of that coin and let me tell you, my new dr. is definetly making my pump a success.  

The first year of my pump I truly thought I had made a mistake in having it put in. While titrating a pump the increases are usually done at 20%, well due to severe swelling of the legs and and feet my pm dr did not want to add to that problem by overloading me with pain meds and only did 10% increases which was nothing. I was in the very same pain I started with.  After a year of that nonsense I finally told him a mistake had been made and all the crap he had told me on how much better my pain would be controlled was nothing but a lie and I had relied on him to tell me the truth about the pump. He was really surprised to hear that from me because I was not a complainer and I sure did not make waves and always went with the flow. But, I figured after all I went thru having the surgery, which was done as an out patient and that should never happen, I was tired of being Miss Nice Patient. I backed him in a corner and he knew I meant every word I said. As of right then I got a 20% increase and went back weekly instead of bi-weekly for increases until I got some relief. Don't get me wrong, I just loved this guy as a dr but I soon found out he wasn't worth a wooden nickel when it came to pain mgt and pumps and medications.  He was just too green around the gills and he needed educating terribly. This is typical with many of the anesthesiologist turned PM drs. They just do not have the education and experience they need. They tell me generally speaking it takes almost 6 months to get you where you need to be with your pump. Naturally we are always started at the very lowest settings and most of the time the concentration level is the lowest as well.

After getting a new PM dr, my neighbor who is a nurse saw me outside one day. He commented that I sure did seem to be feeling alot better. I told what all had happened. He said well, I was really surprised that you were on such a low dose in your pump considering how long you had, had it. Like he said, someone could go to ER and get a shot of Dilaudid that was alot more than I was getting in my pump in 24 hrs. lol.

Its like my new PM dr tells me the pain will always come back and it will always be there. We will become tolerant to our settings over time. We will need increases and there is no set rule on when and how many it will take. She assures me on every visit that I am still considered a "low dose" and I have a very long way to go before ever maxing out on Dilaudid. She says even if Dilaudid maxed out or stopped working there are so many different drug combos that can used in the pumps safely. Knowing this is a great relief for me. She says she has one patient that has 7 medications in his pump and thats what it takes to keep this person mobile and able to have a life.

I do hope you get all this taken care of soon. Just hang in there and keep insisting that you see your actual dr.


Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.

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