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Thread: Watch for baclofen withdrawal

  1. #1
    Senior Member TD's Avatar
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    Watch for baclofen withdrawal

    For those of you who possess a ITB pump I would like you to take heed of my latest experience. I am one of the longest possessors of the pump on this forum and have long advocated that if you are on extremely high doses of oral baclofen (160 mg or higher) you should seriously consider getting a pump. I suffer from severe spasticity and it has been a godsend for me. However, there are risks which everyone should know about.

    I began complaining about not getting enough baclofen after my December 2003 refill. I knew something was wrong but could not put my finger on it. I argued with my doctors for weeks telling them I suspected I received the wrong concentration of baclofen (I am on the 4000 concentration) because they could find nothing wrong with the pump using their analyzer. I was finally convinced to wait until my next refill before doing anything further so I suffered through 6 weeks of spasms, klonus, and pins and needles pain. Certain that the medication was the culprit I asked the doctor to send the residual medication to the lab to ensure it was the proper concentration. He told me it could not be done but my PMR had told me it could. Who should I believe?

    I suffered through two weeks without relief before I began demanding something was wrong either with the pump or the medication and be damned what the analyzer said. By the end of the third week after my refill I was sweating profusely and my legs and abdomen were spasming out of control at the slightest stimulation. Fortuitously, I received my Medtronics newsletter which had an article on baclofen withdrawals. Once I read it I was on the phone with my doctor informing him that I was going through baclofen withdrawals and was heading for the ER, with or without his permission. He met us there and took one look at me then admitted me into the ICU. I was placed on 2 mg Ativan I.V. every 2 hours and they had to force fluids at the rate of 3 liters per hour until my profuse sweating was brought under control. The neurosurgeon replaced my less than 3 year old Synchromed I pump that night and within three days I was recovered enough to be sent home to recuperate. It just so happened that the newer Synchromed II did not come out until May 2004.

    However, I never really recuperated. The spasms were greatly reduced but they never returned to the level I had lived with the past 7 plus years. Each time I had a refill I raised the dosage with little or no effect. Finally my PMR suggested that we take a look at the catheter. Sure enough, the catheter had been slowly working its way out until I had less than 4 inches in the intrathecal sack. This took nearly 4 months before the neurosurgeon was convinced and then it was back to the hospital for yet another surgery.

    Mt doctor received the analysis summary of my old pump in August. It stated that the impellor shaft had snapped and even though the motor was turning it was not pumping medication into my spine.

    FAST FORWARD TO JANUARY 2005:

    I had my pump refilled on January 13 without complication. The neurosurgeon was concerned that the pump was working its way through my skin and told me he may have to go back in to place it deeper in the tissue. I told him that my usual pre-refill spasms were more intense and was concerned there was something wrong again. He reminded me the pump was less than a year old and did not think I should be concerned. There was no way he was going to brush me off again so I began monitoring my symptoms immediately. Within a week my legs began spasming badly enough that they would wake me up at night and I began sweating without any sign of fever. I was not going to wait this time. I called the doctor on saturday, explained my symptoms, and told him to meet me at the ER. Needless to say he was not happy that I was interupting his weekend but when he tried to use his analyzer on my pump he could not get a telemetric connection. That was enough for me. I told him he needed to replace this new pump and he readily agreed. He told me the initial analysis of the pump, once he could have direct access to it, was that the battery was failing. But there had been no warning beep of this coming from the pump.

    I now have a Synchromed II ITB pump and am waiting for the spasms, klonus and pins and needles pain to subside. It has only been 5 days and I figure it may take up to 2 weeks before I get back to normal. I will keep you posted.

    NOTE TO EVERYONE WHO HAS A PUMP!!

    Be aware of any sudden changes in your tone, klonus, and/or spasticity. If there is a sudden increase in any of these immediately check for the usual culprits, i.e., UTIs, sores, bowel problems, illness, etc. If you begin to sweat for no apparent reason get to your pump doctor as quickly as possible. It can take less than 6 hours to dehydrate you to the point it can cause a life threatening situation.

    "And so it begins."

  2. #2
    Hello TD
    I am a C3/C4 quadriplegic as a result of a car accident in 1981. I had an intrathecal baclofen pump inserted last November (2004) to reduce severe spasticity throughout my entire body. So far I have had no complications. After reading your bad experiences with your intrathecal baclofen PUMPS, it has made me a little nervous.
    I live in Brisbane Australia. My pump was not paid for or inserted privately by the public health system in Queensland.

  3. #3
    Sorry Td,
    I am using a voice recognition program and accidentally said the wrong thing before I finished putting up my post.
    Exactly how long have you had to pump inserted please?
    cheerio
    Vicki

  4. #4
    Hi ozonewheels.
    I live nsw. Just wondering if the pump is better than taken the pills and is it uncomftable being inside.

    Cheers
    Ernie.

  5. #5
    Hello jakem
    For me the pump is much better than the pills ever were. I am a high-level quadriplegic with no use my arms or legs. Before having the intrathecal baclofen pump inserted, I used to spasm continually from the top of my head to my toes throughout the day. Medication seemed to make no difference. Since I have had the intrathecal baclofen pump inserted, I very rarely spasm and when I do it is more like a stretch than anything else.
    As for whether not the pump is comfortable, for me it is very comfortable but I have no feeling in my body (other than sensation) from the armpits down. I did feel some discomfort for about a fortnight to a month after the pump was originally inserted.
    Intrathecal baclofen pumps are only new in Queensland -- well new in the sense that they are only recently been used.
    There is a full discussion/information about my hospital stay and the positive and negative results on a web site had built for Queenslanders statewide at www.disabilityforum.org.au.
    Cheerio for now
    Vicki

  6. #6
    Hi TD. Mate that's unreal. So much for quality control of the product.I feel so sorry for you TD. Hope things get better for you.

    Good luck.
    Ernie.

  7. #7
    TD, great advice. When we moved from NJ to SC, the first time the new docs refilled Matt's pump, they used the wrong concentration. He never got sweats, but AD, lots of spasms, and a few seizures (he has a seizure disorder, folks, so don't go thinking this is from the baclofen withdrawal!).

    The technology is only as good as the folks who are using it. Anyone who has or is thinking of getting a pump should ask the neurosurgeon who will implant it how many he has done, and also ask questions re who will be doing the refills and how much experience they have with refills and complications.

    And most importantly, you need to find a doctor who will work with you as a team member, not a 'patient'; who will listen to your symptoms and problem solve with you, not just 'pooh-pooh' you.

    _____________
    What people say, what people do, and what they say they do are entirely different things. - Margaret Mead

  8. #8
    Senior Member
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    Hi TD,
    I'm glad I wander onto C/C once in awhile and glad I noticed your post. I too am A c-7 and have had a ITB pump for about 4 years now with no trouble. The way you describe your pre-pump spasms sounds all too familiar.

    The reason I'm posting is that I have always had my pump filled and adjusted by the same Dr.and I've always wondered what would happen if I didn't have my job with the county and their group health policy. I recently had to quit work after 30 years due to pain from a bad shoulder and scoliosis. I'm on COBRA now for another 16 months. I once asked my Dr.what would happen if I no longer had insurance and he said I'd have to go back on oral baclofen. Iwas on high doses of oral bac.before and it didn't do a thing except make me groggy and my mouth taste like hell.

    I wonder what happens when I run out of Insurance.
    WR

  9. #9
    Whiterabbit, I am puzzled why you do not use your VA benefits? You could get your drugs and baclofen refills through the VA (fee-basis in the community if needed). You could also get your scoliosis and shoulder surgery done at a VA SCI Center where you would be get more appropriate care and therapy than in any private hospital. You do not have to go to your designated VA SCI Center if this is an issue...you can go to any of them.

    (KLD)

  10. #10
    Senior Member
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    Originally posted by SCI-Nurse:

    Whiterabbit, I am puzzled why you do not use your VA benefits? You could get your drugs and baclofen refills through the VA (fee-basis in the community if needed). You could also get your scoliosis and shoulder surgery done at a VA SCI Center where you would be get more appropriate care and therapy than in any private hospital. You do not have to go to your designated VA SCI Center if this is an issue...you can go to any of them.

    (KLD)
    KLD,
    I probably will end up going the V.A. route. I honestly didn't know I could get pump refills through the V.A. I got the pump after fighting muscle spasms for 14 months. I'd get so bad that I'd go to the E.R.for immediate relief with I.V.Demerol. At that time my town didn't even have the little outreach clinic they have now.The doctor I had for months thought the spasms were caused by uti's so I'd stay in the hospital for a few days on I.V. antibiotics and demerol. To make a long story short, I nearly died after 14 months of the same so I hired a new doctor who had me transported by ambulance to the nearest "Big" town where they installed the pump and I sort of inherited this dr. I asked him when I asked aboutlosing my ins. if the V.A. in nearby Ft. Meade S.D.could do it and all he said was they sometimes consulted him and then said I'd go back to oral Baclofen.

    Not long ago, a small outreach V.A. clinic opened here so I went there about my shoulder and he said he'd schedule me for a cortisone injection in Ft. Meade, 100+ miles away. He said I should stay with the same pump dr.and also keep getting my pain meds through him. I'd already had enough worthless cortisone injections so I told him to forget it. Interestingly enough, I went to the outreach a few weeks before and the Dr. was on the verge of retiring, He had all my med scrips transferred to the V.A.and I got one shipment in the mail, The new Dr. stopped it and sent me backto the civilian who was all riled up cuz the V.A. sent me the drugs. All I wanted was someone to help the shoulder.

    I'.ve gone to my regional S.C.I. center in Milwaukee several years ago for a pressure sore and they did fine healing it where the local Drs. wanted to amputate my legs.The only complaints I had about the V.A. was the crowding, you could barely get your chair between beds at one point, and the fact that it's a thousand miles away.That's my fault for living in the sticks.

    Common sense tells me one Dr. or clinic, whatever, should be treating everything. I called the regional PVA for guidance and they told me to go to the outreach. In the meantime I don't really know where to turn.My local shoulder dr. wants to schedule me for an artificial shoulder joint, but I believe the back should be fixed 1st.

    [This message was edited by whiterabbit11 on 02-13-05 at 06:33 PM.]

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