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Pain & Baclofen pumps (experienced users)

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    Pain & Baclofen pumps (experienced users)

    I've been a quad for 46 years and have always been able to tolerate the pain and spasticity that comes with being spinal cord injury... Until recently that is. I have been waking up in immense throbbing pain which is accompanied by profuse sweating. Some nights I waking up as many as seven times a night with this pain and sweating. I am now considering a baclofen pump. I'd like to hear from experience, the pros and cons of this pump. One of my major concern is that this may lead to profuse sweating because I have a foreign object in my body. Voices of experience - your comments please?

    #2
    Hello MJ,
    I had intrathecal pump surgery done back in 2006 with hopes it would ease my pain and severe spasticity. It took a few months of trying different medications and dosages but in the end it was well worth it. The baclofen in the pump has given me an approximate 90% reduction in spasticity. Prior to getting the pump, I was getting maybe 3 or 4 hours of sleep every night because of spasms, it was driving me nuts. Thank God the pump changed that. I can now get around 6 hours of sleep at night, as long as I'm not kept awake by pain. Unfortunately, the pump doesn't do as good a job treating my pain as it does on my spasms. The pain is reduced by some 60 percent. I know this is very good considering what I was going through but I do still have to take quite a bit of oral meds for breakthrough pain (8 ?g hydromorphone). The intensity of the pain is pretty much the same, it's the frequency of pain attacks that's been reduced by the pump. FYI, I have hydromorphone in my pump along with the Lioresal. I had my 3rd pump implanted in March 2018, it's a Flowonix pump while the first two were Medtronics units.

    I hope this helps, feel free to contact me w/any other questions, good luck.
    Dan G. in CT

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      #3
      The waking up in the middle of night you both described is my exact experience. Very tough on my shoulders and back especially tough on my wife having to wake up and hope calm them down.

      I have a C3/C4 injury and was told this could potentially hurt my ability to breathe. Any alternatives?

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        #4
        I'm a T11 complete AIS A. I had a Baclofen pump implanted last December. It has reduced my spasms around 90% It's a big difference. The initial drawback was the filling the pump every 2 months. After increasing the Baclofen, I now have the pump refilled every 6 months. Make sure the surgeon implants it far enough from your rib, or it causes pain or bruising of the rib (unless your injury is higher and you won't feel it). The pump must be replaced every 7-10 years, as the battery is not rechargeable. The Baclofen did not reduce my back pain. I tried opioids, muscle relaxers, trigger point injections, ointments, and nothing worked. I finish having a surgical procedure called nerve oblation (block). It is a game changer for me. Almost no pain! They burnt the nerves at T 9-12. Takes around 4 days for the nerves to die. It lasts for about 1 year before the nerves start to regenerate, and the procedure is then done again.

        Comment


        • CubanQuad68
          CubanQuad68 commented
          Editing a comment
          I am a C6-7 quad. In 2010 I have implanted a Metronix pump that delivers Morphine & Baclofen. It as to be refilled every 3 months. Which type of manufacturer pump you have?

        #5
        T-10 post 20 years and my medtronic pump. Has changed my life for the better big time. It has reduced spasms well over 90% and has helped with pain. It took 3 years to find the right medication and dosage to ease my pain but well worth it.

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          #6
          So, I?m 14 years out and I have a complete C5/6 fracture. The pump trial injections(morphine and fentanyl) were a bust. I would say maybe 30% reduction In pain this summer. He suggested that I get a cervical mri so he could see my fracture, because he thought that the pain might be coming from that area, and we would consult afterwards. I had a Medtronic baclofen pump put in February of 2015, but never got any benefits from it after a few months when they took it out because they thought it was infected(but it wasn?t and two days later I was rushed to the emergency with what turned out to be a septic case of dual lung pneumonia and spent 7 minutes coding only to be revived after they hit me with the electric paddles consistently for a long time when they revived me, put the ventilator down my throat and placed me in a medicated coma. So, I hate bad doctors, I?m getting to the point that I cannot tell the difference between the good and bad ones, the smart or uneducated guesses, and I always feel like I?m being sold a car instead of a procedure.

          Anyways, today, the doctor looked at my mri and said that my fracture is the cause of my pain from pressure being put on my spine and the mixed neurological wires are causing the brain to give me the spasms. I don?t know that I can make sense of that. I believe that the lower half of me is in enough pain with me not truly feeling it that it has found a way to get new wires to the brain, because I am ?feeling? sharp pain in my thoracic, lumbar, pelvis, hips and my neuropathy pain is unbelievable when the pain is in its higher levels. My pain is an intense ache(feels like electricity in between the muscles and the bone because I feel both, and when I move the pain becomes sharp in the area effected. I have a complete fracture, and I understand that I am not supposed to be feeling anything, but I?m feeling everything internally. The same way I can ?feel? my diaphragm when I take a deep breath, the way I feel my muscles when they get tight and the way I can tell when my date gets fresh and is polishing my hardware. I knew when I broke my foot. Ok, back to the doctor, He then said that he would place the catheter up near my shoulders and I should get much better relief. I then asked a little bit later about the spinal fluid sack and if the medication circulates in their or if it?s deposited into the vertebrae or what, and his reply was yes it circulates. If it circulates then why is catheter placement important? I?m going to have another trial, but what do I ask for differently to ensure that I am getting a real trial and not another 30% experience. Should I try the nerve ablation at my fracture? Ask for specific meds for the trial? I?m desperate for good input and you guys always come through. I waited too long to come here with this. I?m nervous about the risk of the pump getting infected and making things worse, but my options are limited. Are spinal stimulators any good? Should I look into relocating to an area that has more experienced physicians like Denver near Craig hospital or Atlanta near Shepherds? I have to do something, anything, soon.

          Please pass the thread onto those you know or even think might have some insight. I?m too young to be questioning if I can continue to live like this. I fear that moment I break and give into a left field thought like a couple weeks ago when I caught myself entertaining the thought of going into the garage and getting into my van and starting it up. Putting on a playlist and rolling the windows down while I sit in the dark waiting for my eternal nap. I couldn?t shake it once I thought it. My son was gone and the house was silent. It?s the darkest moment I can remember and it scared the shit out of me. Once, I was driving down the highway and I randomly thought(on a good day, ?just pull the steering wheel to the left, HARD, and then picturing the van rolling and throwing me around when I caught myself and thought WTF and realized that is how suicide happens to those you think would never. An impulse, when vulnerable. I choose life, and can endure a ton, but I need some hope.

          About six months ago I saw an orthopedic specialist. He took a X-ray of my hips and saw terrible arthritis. He said that if I was able?d bodied with the arthritis he was able to see that I would be wheelchair bound. I had my pacemaker removed and then I had a mri of my lumbar. Then, I was told that I needed the leads(they are the metal that connects to the heart and then is plugged into the battery of the pacemaker.) Apparently I was lucky I didn?t have any negative effects from the leads being on my heart when I got the lumbar mri. So everything is out and I am trying everything I know. I get an mri of my pelvis in 4 days and pray that I get some answers. There?s got to be some answers. It?s to the extent that I have people telling me that it?s in my head, and my brain explodes each time. I?m starting to question myself. I feel like I?m going insane. I have been taking by ambulance to the emergency room at least 7 times since the new year in the evening/nighttime because of the spasms/high blood pressure/body freak out and NONE of those times did I get any imaging/answers or anything of benefit. Each time is 3-5 hours of me sitting with my chest over my knees like I?m trying to touch my toes, because when I do I long sit like that I am able to control my spasms. A EMT told me recently that is because of the ?Hollywood? nerve. Whatever, that is my pain management. Touching my toes. Ugh.

          A little more background, because I want to be thorough so that everyone will know as much as possible with hopes that I can get a collection of others experiences that have experienced something similar or get some great suggestions. I love this site, and I cannot recall what or if I have posted about this or not because I?m so wrapped up in my pain that I?m surprised I can even think to put sentences together.

          Anyways, background is I originally felt the first pain in my lower left back and it felt like a lot of pressure there. I explained it like this, I felt like I had a bowling ball implanted overnight and it felt like a lot of pressure. Then the spasms started shortly afterward. I was on 20mg of baclofen and stretching consistently, daily X2. I was told it was time to check into the pump and then went through that until it was taken out. After I was released from the hospital after a twenty day stay the family took a lake trip in January to relax and come together after the trauma from the pneumonia(my mom was sure that they were not going to be able to revive me after trying for so long that she gave into my son who was barely 8 at the time who is crying for me. She slipped him into the emergency room and let?s him run up along one side of the bed to hold my hand, and when he gets a grasp on my fingers, my arm slides off the bed completely limp, and it instantly SHOOK HIS WORLD and he takes off believing I?m definitely dead. Poor guy. Why nobody intervened to get his ass out of there or how he got beside me to take my fingers in all that commotion is beyond me, but it happened just like that and traumatizes most of us to this day. I was unconscious, but hearing it in therapy and from others in the room(stepdad and little brother) makes me incredibly sad. Ugh. Got lost, sorry. Shortly after that my brother(bi-lateral necrosis, needed both hips replaced but staggered them because he was 30 when he did his left and saved the right hip for later so that he isn?t stuck in a wheelchair when they go out) gave me half of an oxycodone 20, and then gave me the rest an hour later once he was convinced I could handle it, and I spent the next 6+hours participating with everyone and able to enjoy the moment and be active and engaged with everyone. I was able to tell my doctor about my experience, and I was given a script and lived a somewhat better life. Looking back, I didn?t realize how good I had it. It was like that until October 2018(a 20 mg oxycodone still covers my pain when available). I just sit around the house. I?m short tempered with everyone, I?m nervous to leave the house because of the driving increases the pain or I already hurt and don?t want to move from fear of a severe spasms. Fear driving and having a severe spasm that causes an accident, no appetite at all, don?t want to work out and so much more. I?m losing my mind, and years are going by when I need to get my shit together. I feel death outside of window, just waiting to sneak in. I?m wanting to crowdfund for exercise equipment and therapy mat to do the things for myself to lose some weight and work on my physical issues(I have started doing cardio while watching tv with wrist weights), but I need to be improving my weakened heart(sleep apnea), circulation, weight, improve my core and more. I?m not going to do that until I get some kind of relief.

          The state passed a law limiting opioid doses here in Oklahoma, USA. Shitville. You are limited to 90mg(morphine equivalent). I have gone from 6 20 mg oxycodone in a day, 1 every 4 hours, and an OxyContin ER 20 mg, every 8 hours. Looking back I feel I was over prescribed, and that was my physiatrist who heads the main rehabilitation hospital locally. She stepped out of pain management and now I have a doctor prescribing me Suboxone. I have cried, tried to collaborate, pleaded my case monthly and have gotten nowhere. Even though I have a wound vac on from a wound on my left butt cheeka stage 4. Only a thin membrane covered the bone after the surgical debreedment. Huge hole in my ass, no pain medication. I FINALLY was given a 30 day supply of 40 4mg hydromorphone. They don?t provide relief. My brother and says that they are stronger than oxycodone, but I can 20mg hydromorphone and not get close to the relief I get from 20mg of oxycodone. It?s shitty I am not able to have this conversation with my pain management doctor.

          I am sorry for the rant. I will try to clean up the facts and repost later but I?m burnt from this for now. Please advise
          Last edited by GoTWHeeLs; 28 Feb 2020, 6:19 PM.
          Say what you mean and mean what you say because those who mind dont matter and those who matter dont mind.

          My Myspace


          Comment


          • CubanQuad68
            CubanQuad68 commented
            Editing a comment
            Besides my intrathecal Medtronic pump delivering Morphine + Baclofen, I take a 300 mg Gabapentine every 6 hours.
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