Announcement

Collapse
No announcement yet.

w/ding from 1 week of oral baclofen while on intrathecal pump baclofen after mistakenly thought pump was disconnected

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    w/ding from 1 week of oral baclofen while on intrathecal pump baclofen after mistakenly thought pump was disconnected

    I have an intrathecal pump w/ dilaudid 9 mg/day and baclofen 250 mic's/day...the pump disconnected 4x in 9 months. Recently experienced symptoms consistent w/ baclofen w/d. MD rx'd oral baclofen which I took for one week 120 mg/day... just had dye test/ pumpogram showing all ok. MD said he'll call today - still no word - and that symptoms could be many things. I'm still taking the oral baclofen which last time knocked out my legs and made them like jelly (I couldn't get upstairs - I'm T2 ASIA D para... Questions - should I titrate down off the oral? What could be causing the symptoms? Why is the oral having NO effect if the pump is working? Any and all advice/opinions welcome...Txrrd

    #2
    I moved this post here from the Pain forum. Hopefully we'll have a little more luck finding someone that can help with your question.

    David Berg

    Comment


      #3
      I am going to ask either SCI-Nurse PLG or EMK to follow up on this, as they are our baclofen pump experts.

      (KLD)
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

      Comment


        #4
        baclofen pump question

        rrd--- What made the MD think the pump was disconnected four times? Was there a positive catheter dye study done to substantiate this?

        Has a bolus of intrathecal baclofen ever been tried and if so, what were the effects? Has your MD ever tried to increase your pump baclofen dose? 250 mcg/day might be too low. Your MD might want to try programming in a bolus of 50 mcg over 15-30 minutes to see if you have any effects. If this and/or the pump dose increase do nothing and you truly know the catheter dye study showed no kinks, migrations, or blockages, a consult with a neurosurgeon would be in order to have your catheter replaced. We have had patients here who have been negative in all respects and the catheter replacement did the trick in resuming spasticity relief. How long have you had the pump? Is your MD cautious to increase your pump baclofen dose because you ambulate? Hope to hear from you soon. PLG
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

        Comment


          #5
          rrd -- One more suggestion. If everything is negative, your MD may also want to consider getting an MRI and a CT myelogram to make sure there is nothing else being missed to block the drug effects. Is your pain relieved with the Dilaudid in your pump? PLG
          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

          Comment


            #6
            reply to PLG re: pump anomaly

            Thank you for moving the post to the new forum - I now have meaningful input...to answer your questions in random order I have had the pump since 5/00 under a different surgeon and different neurologist/pain mgmt. MD. My original problem w/the pump was that it had been flipping in my abdomen for a year or so until one day they couldn't access the refill port and did a dye study - at the time I was up to 900 mic's of baclofen w/ no relief. For reasons unimportant to this reply I switched to a new neurosurgeon and neuro/pain mgmt. MD and have been with them for a year. The n/s has put in more than 400 pumps (Dr. Steven Schneider on Long Island). He says I have set the record and his residents have done a study on the 'fulcrum effect" of bony prominences, titanium pump and plastic catheter. The 4 Breaks in the last year were dx'd by symptoms of baclofen w/d (increased spasticity, chills, sweats, decreased appetie, sleep problems etc. Sometimes a simple X/R showed the disconnect and sometimes the dye study. Once all appeared OK but when the n/s went in he found microtears in the catheter which he found by following it with his hands intraoperatively. He said he notified Medtronic and that he put in ther "old" catheter this last time (5/02) which was more durable. My MD has consulted with my n/s on the current problem and they are puzzled. I am to stay on the oral baclofen and I also take MS Contin and for b/t pain dilaudis prn. I just had done 2 sets of X/R's 2 hours apart and am awaiting results. The next step is MRI of the C and T spinr to see if anything new is going on. After that I don't know what they plan but I have a feeling they may want to go in again. As to the bolus issue, I had 2 in the past and my legs were jelly - I couldn't get upstairs for 2 days and put 80% of my weight on the walker to get to the bathroom. The most recent bolus had no effect either w/ dilaudid or baclofen. The dilaudid is a new variable - the pump had morphinr until 2 mos. ago as it did not seem to be doing the trick. The dilaudid was relieving pain until this recent glitch - meaning I lived at 6 to 6+ instead of 7+ to 8 on the pain scale. I felt we were getting close. Frankly my spouse and I are in a real dilemma - we can not go through this every 3 months yet life w/o the pump has no quality fo enjoyment or pleasure. We seem to be at a Xroads with no viable solution in sight. IF ONLY MEDTRONIC AND THE N/S COULD COME UP WITH A PUMP AND CATHETER THAT WOULD LAST THINGS WOULD BE BRIGHTER. I JUST FIND IT HARD TO BELIEVE THAT THIS IS HAPPENING GIVEN THE STATE OF THE ART. I'll keep you posted as things unfold and again continue to very much appreciate your interest and advice and queries. I hope I have addressed your concerns but if not please let me know. Tx again...rrd

            Comment


              #7
              rrd: Wow. Thanks for sharing this with me. Yes, you certainly have had your share of problems with the intrathecal catheter. Keep us posted. Glad to hear an MRI is next on the agenda. I sure do hope they solve this dilemma for you. Baclofen can be a powerful drug when it works as you have experienced after some of the boluses. PLG
              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

              Comment


                #8
                further update on baclofen pump dilemma/conundrum

                Firstly, please excuse the typos as I did not proofread the reply - in too much pain. More importantly, the X/R's 2 hrs. apart were apparently a "rotor study" to ascertain if the pump rotor moved in the intervening time period - I am on an hourly flow rate. The radiologist called the pain mgmt. MD to say that in his opinion the rotor did not move - meaning the pump itself is not spitting out the meds to the catheter. I consider myself well-informed but had never heard of this problem. Anyway, the n/s was advised and couldn't believe what he was hearing. Says me and my pump are cursed. Says he plans to give Medtronic an earful. He'll review the films today. Tomorrow my pain mgmt. MD will be removing the pump contents which are expected to be significantly greater in volume than the pump interrogation printout slip says since the pump computer reads the chip and not the actual contents. Meanwhile my n/s is now making arrangements for asap surgical admission to replace the pump and states that this procedure is less invasive as only the pump is involved and not the entire length of the catheter. Also, the new refill will be with dilaudid only until a therapeutically effective is achieved then the baclofen will be added in since I'm walking more and better on the oral baclofen even though I'm sure much of it is simply increased tone. One thing is certain - 250 mic's of intrathecal baclofen is too much and my arms and shoulders appreciate the break and rest strange as that may sound. So it LOOKS like the mystery may be solved - I hope so as I cannot even entertain the consequences if not. Again, many thanks and I'll keep you updated... and just when you thought it was safe to go in the water...rrd w/Tx

                Comment


                  #9
                  rrd -- I am curious about the rotor study you had done. The usual protocol is to first x-ray the pump to determine the pump rotor. The film may have to be overprocessed to visualize the rotor. Then we program in a bolus to move the rotor 90 degrees. This usually only takes 45 seconds to see if it moved. Then a 2nd x-ray is done. It is a quick way to check rotor movement. PLG
                  The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                  Comment


                    #10
                    further reply to SCI Nurse re: rotor study info/suggestions/protocol

                    Thanks for the quick reply following the rotor study info...unfortunately, the diagnostic facility we must use is not equipped with a programmer and the pain mgmt. MD facility is not equipped to do X/R studies. Oh well! Personally, your suggested protocol sounds a) quicker, b) more accurate diagnostically, and c) considerably less onerous on the patient (in this case me). I am having the pump interrogated today and the contents removed to see what the disparity is - if any although I don't see how there can not be a significant difference between what is removed and what the printout suggest is the reservoir volume since the symptoms started 10/5 - 10/6 and I've been on the oral baclofen since then - now up to 140 mg./day while the pump is programmed to deliver 275 mcg./day. Based on past experience with the pump working and delivering 225 mcg. of baclofen per day, the prior one day glitch during which I took only 30 mg. of baclofen in one day knocked my legs out completely. Of course with the rotor problem now in the picture, the one day glitch during which I experienced baclofen w/d symptoms and was put on the oral can now be understood or explained by a brief or transient rotor malfunction preceding what now appears to be a complete mechanical(?) breakdown. I have surgery scheduled by my n/s for 10/31 at LIJ for pump-only replacement. Operating on the theory that nothing has gone as intended or planned since pump inception, I am shall we say not at ease. I'll continue w/updates and again apprecoiate truly your concern, knowledge, experience, advice, suggestions, involvement (and you get the picture). Many Tx...rrd distressed.

                    Comment


                      #11
                      major omission from earlier today reply to SCI Nurse

                      OOPS! I neglected to advise re: the rotor study results and to pose a question. I have the films and the radiologist's report. The report states that the rotor did not move in the 2 hr. interval between studies suggesting rotor malfunction. I am not a radiologist but I've read enough films in my 20+ yrs. as a trial lawyer in the medical field. I look at the films and visualize the side port, the pump itself, the catheter connected to the pump and then a VERY HAZY area within the pump. You mentioned overexposing the film (or was it underexposing?) and a bolus that would move the rotor 90 degrees. It does not appear that this film was done in any manner other than the norm for an X/R. Also, my pump has a reservoir of 18 ml. The dilaudid concentration is 30 ml. per cc and the baclofen concentration is 750 mcg. per cc. The rate of flow is hourly and the printout from the programmer only refers to the dilaudid with the baclofen rate left to math. The hourly rate of flow of the dilaudid is now 0.375 mg./hr. or 9 mg./day with the baclofen at 225 mcg./day. Actually, he raised me 1 mg. per day on the dilaudid which would mean 250 on the baclofen but I do not have that printout which was done after the dye study. My question is how many degrees would the rotor move in only 2 hrs. at that rate of flow and would it be even detectable on normal X/R w/o over or under - exposing the film to determine the rotor? Sorry for leaving this tidbit out of my recent reply and for taking so much of your valuable time. By the way, I intend to mention your rotor study protocol to my MD this afternoon. As always many tx. rrd even more puzzled.

                      Comment


                        #12
                        rrd -- The fact that Dilaudid is only mentioned on your programming print-out does not mean that baclofen is not in the pump. Often when we have a combination of drugs we will indicate it by entering "dil/bac" in the drug line. That let's others know that it is a combination in the pump. The best way of course to verify this is to look at the syringe content label before it is injected.

                        I do not know how best to answer your question about what position to expect the rotor to be after 2 hours. It would all depend on your hourly dose and if that hourly dose X 2 was equal to the amount required to move it in 45 seconds. If it is the same, there should be no difference. I have done quite a few of these rotor studies and have been taught to program in a bolus amount that takes it to move 90 degrees in 45 seconds. The radiologist OVER exposes the film so that we can get a good look at the rotor position. I hope that answers your question. By the way, was there a discrepancy in the amount aspirated from your pump and what was on the telemetry programming screen? PLG
                        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                        Comment


                          #13
                          update/reply to most recent response from SCI Nurse re: baclofen pump situation

                          The telemetry prontout indicated a suggested reservoir volume of 6 cc's. The MD aspirated over 13 cc's of pump contents! He said he didn't even need to look at the films to conclude a pump malfunction. Replacement pump surgery scheduled for 10/31 as mentioned. You may be interested to know that I called Medtronics to explain the pump problem Hx and to let them know that I wished to go on record with a verbal & written complaint. The person on the phone was most helpful, empathetic and enlightening. I indicated that while I was aware that medical devices come with risks, hazards, benefits etc. (informed consent issue), the pump was only c. 2 yrs. old and was defective so to speak. I wanted to explore the possibility of Medtronics covering all or part of the cost of the surgery & new pump with my health insurer (which happens to be one of the best in the world). I was surprised to learn that hospitals purchase pumps in bulk and that the cost to the hospital depends upon the # ordered - but that the cost is under $10K per pump. HOWEVER, the hospital then marks up the cost to the insurer in varying amounts - sometimes higher than $40K for one pump. The issue of reimbursement then becomes one between the hospital & the insurer, NOT Medtronics. I was also told that a local Medtronics rep would become involved & that there is a procedure in place for placing the outgoing pump into a "mailing kit" for return to Medtronics for destructive testing. Medtronics then would issue a report to the surgeon in the nature of Finding of Fact re: the nature of the problem and whether or not there was a "defect" in the legal sense of the word. For your reference if you're interested, the contact person is in the Patient Services Dept. (probably a euphemism for Risk Mgmt.) and her name is TINIE HAAGSMA and that she has been with Medtronics forever. Her phone is 1-800-510-6735 extension 50708. Her address is Medtronics Neurological, 710 Medtronics Parkway Northeast, Minneapolis, MN 55432. I plan to write a letter detailing my pump Hx and to start the process of pump analysis. Maybe it will benefit future patients 7 maybe not but it certainly can't hurt to try. I've digressed too much and will sign off for now but feel compelled to update you as developments occur unless you tell me that it's not appropriate for this or any forum in which case I'll stop. Again, many Tx.rrd-feeling-better-already...

                          Comment


                            #14
                            rrd -- It will be interesting to find out if this was really a pump malfunction or a catheter problem. Keep us posted. PLG
                            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                            Comment


                              #15
                              FINALE to Medtronic pump malfunction problem to SCI Nurse PLG

                              On 10/31 I underwent surgery for implantation of a NEW Medtronic Synchromed pump after it was finally determined that the catheter was patent and the rotors were malfunctioning - for longer than originally suspected. I am home wqith my new pump and am being titrated up slowly to hopefully an effective therapeutic dose level. The old pump is now at Medtronic and I've asked the n/s to provide me with a copy of their findings and conclusions. END OF STORY! Thanks again for everything. Feeling more hopeful, rrd...

                              Comment

                              Working...
                              X