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questionnaire for spasticity for Baclofen pump test -- advice?

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    questionnaire for spasticity for Baclofen pump test -- advice?

    Hi, it's Maggie. It's been a long time since I've posted, but I am scheduled for a test for the Baclofen pump on September 19, and I've spent the last three nights on this board reading every thread I could find on the pump. Thank you to all of you who posted to those threads -- you have been an amazing resource for me -- and I've learned so much I would not have known if not for you!

    I'm in need of some advice about the spasticity questionnaire I need to fill out before my test, and it relates to the terms I'm given to describe my spasticity. None of them accurately characterize what I experience in my body! My options are: 1. tight limbs; 2. charley horse/cramps; and 3. involuntary movements. I'm also very fearful that I will "fail" the Baclofen pump test because I've been told my experience of spasticity is "atypical," so I am hoping that if I share the FAR TOO LONG story of my spasticity and how it's been diagnosed and what's been done to treat it, and at the same time bold the terms my PMR, my physical therapist, and I have used to describe what's happening with my muscles, you all might be able to tell me if you've experienced anything similar to what I have and/or let me know how best to answer the questionnaire.

    And oh, to be honest, I am hoping so much that you'll tell me you believe I do have spasticity and that you think I have a chance of passing the test! because the pump seems to be my last hope, and I want so much to BELIEVE . But please be honest about what you think of what I'm telling you; what I should do; and what my chances might be that I turn out to be a a candidate for the pump! And thank you in advance for bearing with me !

    It's ironic but not surprising that the first time I posted to the board about my chronic and severe back pain Kimba responded and provided links to information about the Baclofen pump. Now here I am more than 2 years later and my husband and I were finally able to convince my PMR specialist and neurologist to agree to refer me for a test for the pump -- based on the information Kimba gave me in the first place!

    In the meantime, I have been trying to escape the chronic pain using "less invasive" measures. (Note: I've been on the maximum of oral Baclofen since the chronic pain became unbearable, back in 2015). First my neurologist said it could not possibly be spasticity because it was in my back: from the base of my spine to the middle. Then she referred me to my PMR, who was the first doctor to FEEL my back and agree that the "tightness" and "tone" was "abnormal." He initially diagnosed me with myofascial pain syndrome, secondary to my MS and gait changes, and recommended trigger point injections and PT. He told me if I followed the program I might be able to go back to work within 6 months.

    The trigger point injections didn't even make a dent in my pain. I actually loved the physical therapy -- my physical therapists were kind, and thoughtful, and the stretches they gave me provided a modicum of temporary relief from my pain -- and when I worked on strength and endurance with them I loved being able to use my body that way again (before my 2013 relapse that led to the gradual building of agonizing pain in my back I'd practiced yoga every day and walked at least a mile every other day).

    But after 6 months my head PT said that no matter how much I stretched or how much they massaged, my muscles would just "snap back" (this relates to the advice I need on the spasticity questionnaire) and I'd be back in agonizing pain again (it's never dropped below a 6 on the pain scale since early 2015, and at that time most often hovered around a 7 or an 8). She told me she was going to reach out to my PMR to recommend that I get Botox injections in my back to release those muscles enough to 1. relieve my pain and 2. allow me to make progress in PT.

    My PMR agreed to Botox injections, but my insurance wouldn't approve them because I needed to be diagnosed with spasticity rather than myofascial pain syndrome. My PMR still felt I couldn't have spasticity solely in my back, but after 2 failed appeals and my pain worsening, along with my strength and mobility, he broke down and diagnosed me with spasticity, and the approval for Botox injections went through. I had my first round in August 2016.

    The Botox injections helped significantly at that point, once they took full effect. Actually, the only time since 2015 that my pain has dropped below a 5 has been during the injection process for Botox -- when my PMR puts the vibrating needle in the affected muscles (up and down my lumbar paraspinals, up and down and across my quadratus lumborum on both sides, and up and down my thoracic paraspinals), I feel them contract and then FINALLY release. The relief is so great that I get sleepy, feel drunk, and start giddily chatting with my PMR while lying on the table with the needle in the next muscle, absolutely delighted for the next release. I asked my PMR if this was a normal response to Botox injections and he said that it wasn't, but that "I am an atypical case." That initial release with the injection process only lasts a half hour to an hour or so, and then I feel my muscles start to seize back up again and the pain returns.

    Overall, my first three rounds of Botox were "successful," in that once they took full effect, after two weeks, I felt a decrease in pain (at that point my pain was usually and 8-9 every day and the Botox took it down to about a 6). My normally constantly locked up muscles loosened, and I would start PT again at that point and be able to hold a stretch and keep the benefit from it for an hour or so afterward. I also got to do more strength, balance, and mobility, all which had deteriorated drastically for me with the pain as high as it was and with my muscles so contracted. Even with the pain at a 6, at the end of the efficacy of the last round I was able to stand upright on the balance board for a minute and maintain the tree pose for two!

    And I feel so lucky to have accessed that and experienced that -- but what happened was with each round of Botox the window I was able to live not pain-free by any means, but with relentless pain at a lower scale, and make real progress in PT, narrowed more and more. By the last round of my Botox injections this past May it had gotten to a point where it would take two weeks for them to take enough effect to relieve my pain from what was now up to a daily 9-10 and allow me to be mobile and flexible enough to do PT at all, and then the injections would only stay that effective for four weeks, and then the pain would start to rise, and I'd start to fall off the balance board because the pain was too bad for me to stay upright; I would double over with it and start walking hunched and crunched, even when my PT was reminding me to stand up straight, and when I walked I would do what I call the "herky jerky," where I just can't get my walk to be even and fluid --I stiffly sort of yank one foot in front of the other and it takes my legs some time to follow -- the right leg longer than the left, so it's "off."

    My PT would feel my back muscles and say "it's starting to creep up on you again." (I forgot to tell you that one of the main reasons I still experienced so much pain even when the Botox was at maximum effectiveness was because at the VERY base of my back, nearest my spine and my pelvis, I felt intractable tightness and pulling that hurt so much it was like I had two shivs on my back on either side of my spine, and they burned and stabbed relentlessly even though the whole rest of my back was all the way or partway released and relieved. When I went to my PMR and asked him to try to Botox that part of my back he said it was "too close to tendon and bone" to do).

    And please forgive me, but I have to go to the restroom and I'm afraid my cat will step on my keyboard or something else will cause me to lose what I've written, so I'm going to post what I have now and start again when I can!

    continued --sorry for the length and the interruption

    So the "window" in which the Botox injections were effective was getting shorter, and when I went in for my last round of injections I had been virtually bedridden from pain and lack of mobility for two weeks. My PT finally said that there was no use in me coming in until I could get another round of Botox. My now-husband, then fiance and I had explained the situation to him beforehand and asked if he could give me the injections earlier than every 12 weeks, and he said he'd be willing to do so but when he petitioned the insurance they said no.

    That's when we persuaded him to refer me for a test for the pump. We'd been bringing it up given that nearly 2 years had passed and I was still in such acute pain, and every time I made progress in PT I'd be "taken out" and have to start all over again with the next round. He had been reluctant to make the referral because he said the pump was a "drastic measure" and the surgery was "invasive" and the recovery would be long.

    At that point our wedding was coming up, and I explained to him that as it stood, I would be at the very end of my Botox effective window on the day -- thank goodness; otherwise we would have had to cancel the wedding! -- but I made the point that it had been 2 years and though I was grateful for the Botox it was upsetting to only be able to live life at a 6 on the pain scale and be upright and mobile 4 weeks out of every 12. And he made the referral for the pump.

    So right now my test is 13 days away. I've gone 18 weeks without the Botox, and I am so scared at what's been happening. The pain is a 10 out of 10 every day, and the spasticity has moved up my back and into the muscles between my ribs, to the point that it feels like I now have knives in my ribcage. My husband can feel the seized muscles as opposed to the ones that aren't: he calls them "clickers" and uses his thumb to massage out the tightness.

    Then it moved into my arms, and the long muscles on the front inner side of my forearms feel heavy and ache incessantly and sometimes burn, and I try to use one hand to massage them, but that exacerbates the spasticity in the other forearm.

    And I didn't think I had the "MS hug" until the other night when I found it hard to breathe and I asked my husband to rub the upper left side of my chest, and he found a tight "clicker" again buried deep -- and rubbed it until it relaxed . . . and I thought maybe that was it?

    What scares me is how bad it has gotten -- worse than ever before in terms of pain and my mobility -- I live from bed to couch and standing up straight is impossible. But what's even scarier is that it's spreading. My husband keeps telling me: "less than 2 weeks until the test."

    But I saw the spasticity questionnaire, and it scared me, too, because I didn't feel like there was a way I could answer accurately. I wouldn't describe my pain as a "charley horse" and I don't have "involuntary movements", as far as I know. As far as "tightness in limbs," it's only the past week that my forearms have started to seize.

    The term I have always used is "seizing," in part because I discovered the best way to cope with the back pain when it first started was to set up pillows and my heating pad on the couch, brace my feet with my knees up against the coffee table, and press as hard as I could against the pillows and the heating pad to apply some kind of "counter-pressure" to the full to bursting agonizing pain in my back. I called it "seizing" because after bracing myself for awhile I would run out of strength and have to let go, and then when the pain started to surge again I'd press back again.

    Otherwise it's like stabbing knives in my muscles, or someone has thrown gas on them and lit them on fire, or my entire back is a slab of flaming hot concrete and I just want someone to cut it open and break up the concrete so I can get some relief. And with the little "clickers" in my ribs or my forearms I want someone to jab a knife into them and cut them so that they'll stop "pulling so tight."

    Even describing this, I worry that I sound crazy. But I have to tell someone how it FEELS and ask what to do? If it doesn't fit into the categories of pain for the spasticity questionnaire I worry I'll be back to the: "it can't possibly be spasticity," and then that would mean it's NOT just "less than two weeks" until the test -- and as I said before, I want so much to believe that help is coming, finally.
    I'm sorry I wrote for so long and that my post became much less well-written -- the pain is getting worse and I'm so tired -- but I wanted to finish what I'd started and I will be so grateful for any advice you can give me.

    I am wishing all of you a good night and you have all my thanks for reading.




      I too scoured the Forums before my tests and operation. I learned much in the process. I especially thank Marco for his posts. I have pledged to myself to do something similar but I am still very much a "work in progress."

      I tell people that MS is a "custom" disease: we are all affected in our own unique ways. I, I'm sure like most of us, have had very strange symptoms and things happen to my body. These things are often had to explain. I sometimes think "my neuro will not believe this!" I certainly am not a "textbook" case.

      To Baclofen. I was a mess late last year. I had told myself "I'll never do the pump thing" until last year when I began to scream "give me the darn pump!" My first test at 50 mcg did nothing. I was so depressed. A few weeks later the trial amount was 100mcg and it worked. When the pump was installed it was set at 75mcg/day and it has done wonders relieving the stiffness and the pain.

      My problem was mainly in my legs. It is important that the doctor know where the spasticity is so they place the catheter correctly in the spine. In describing your spasticity I would tell them very specifically where you are effected. The nature of the spasticity seems less important. I barely got through Junior High anatomy so take my suggestions for what they're worth. The most important thing, it seems to me, is that you trust your pump team so you can be totally honest with them and they can help you.

      Maggie, God bless you and good luck.


        thank you -- and some qs about the logistics of the test

        Brad, thanks so much for your reply. It is good to hear that from your experience the nature of the spasticity is less important than where I am affected.

        One issue is that my PMR doctor is not the one who will be administering the test. I am lucky in that I've been able to go to the University of Michigan Center of Neurology for treatment since September of 2015 and I've gotten the best care for my MS there than ever before (though admittedly the bar was pretty low based on my experiences elsewhere). But my neurologist is at U of M, as is my PMR doctor, and apparently for the Baclofen pump they have a clinic with its own doctor and staff.

        I'm sure my PMR communicated to the pump doctor where my spasticity is when he made the referral, but my PMR does not know that it's moved up into my ribs, chest, and forearms because I haven't seen him in 18 weeks and because it just happened in the last two. I should probably call my PMR to tell him!

        But when you talk about placement of the catheter, are you referring to the test itself or to the surgery (or both)? I know they do a lumbar puncture for the test -- and then they administer the Baclofen into the spine that way -- and duh! it's probably through a catheter. Somehow I thought placement didn't get decided until pre-surgery?

        Based on what I've read on threads on this board, I think that T-4 might be best for me. I know I have it in my arms right now (the last place it's hit), but I think I need it most in my low to mid-back -- that's where it started in 2013 after my relapse, and that's where it's been the worst in terms of pain and disability. When my Botox is working in my low to mid-back, I don't have the spasticity in my ribs or my chest or my forearms -- it's only the last couple times that the Botox has worn off that it's "crept up" that far.

        And I read a post from someone who said once her spasticity was relieved in her "back/trunk" with the placement at T4 that her arms followed suit -- and I think her doctor said it was because the rib muscles were connected to the arm muscles?

        I keep thinking of a song my daughter loved when she was little that went something like: "the knee bone's connected to the shin bone/the shin bone's connected to the ankle bone" and so on -- and I definitely notice that if my husband is able to loosen even the smallest tight muscle in my rib cage I can feel a difference in my arms.

        Brad -- if you have a chance will you tell me where your catheter is placed, both for your pump and for your test -- and how the decision was made? When you went in for your test did they already know where they would put it, or did they decide after examining you, and did you have any input?

        I also want to tell you I read your post about failing the Baclofen pump test and I was so relieved when I went through the thread and was able to follow your story and find out step by step that you DID end up being able to get the pump! Thank you for sharing what happened -- it helped me so much -- and for your advice to me here !



          Maggie: I'm going to have to plead ignorance to much of what you asked me. As I've mentioned, I was a mess during the "I don't want a pump/the spasticity is killing me/I'm in terrible pain/I need a pump/I failed the test/re-schedule-re-schedule/I passed the test/I need the operation/re-schedule-re-schedule/the big day is here" period of my life. I didn't ask a lot of questions. I just trusted the folks whose first name was "Dr." I'm not really sure where they put the catheter. I think I have some paperwork.

          I'm pretty sure the spinal tap for the test was just a shot. It was actually pretty easy. The first (failed) test, I was observed for 3-4 hours or so then released with a "no go". The second time, I could tell it was working within an hour. After two hours, they let me go and said they'd contact me to schedule the operation. I had this all done in the University of Kentucky system and was very pleased with the care.


            Hi Maggie

            It is nice to meet you. I can understand what you are going through right now. I have had a baclofen pump since 1999.
            I can try to answer a few of your questions.
            I have to do a disclaimer first...when I got my first baclofen pump, we did the implant without a trial.

            I do feel like the trial is the way to go. It is like doing a "test drive of a car". Usually the study last's between 6-8 hours. It starts with an eval by physical therapists to get your base line. The next thing is the boulous injection of the liquid baclofen, into the spinal column.
            After the injection, folks usually lay flat on a bed for up to 2 hours. This is done to decrease possible headaches, from the injection.

            From hour 2 - 4, patients are reavaluated by the pt. After 4 hours, the effectiveness decreases. Usually by hour 6-8, you should be back to your baseline.

            The catheter is in my lower spinal column. My pump is on my right side...even with my belly button and out near my pants pocket.

            From what I understand, baclofen is a "heavy molecule". Hence, it works on the lower body parts. I have heard of, some doctors ,moving the catheter a little ways up trying to get some results, higher up in the body.

            Maggie, I wish you the best

            Take Care, Bob


              emotional rollercoaster of pump

              [QUOTE=Brad1138;1504422] As I've mentioned, I was a mess during the "I don't want a pump/the spasticity is killing me/I'm in terrible pain/I need a pump/I failed the test/re-schedule-re-schedule/I passed the test/I need the operation/re-schedule-re-schedule/the big day is here" period of my life.

              Hi all, it's Maggie!

              I'm quoting Brad here because the way he described his experience -- both emotionally and practically -- seemed to me to capture exactly the ups and downs of being in pain and seeking treatment and all the navigating and negotiating that goes into it. I hope the quote comes through! Thank you Brad!

              And Bob, thank you for telling me about the timeline of your trial and what happened during each stage! University of Michigan had sent me a list of the appointments I had that day along with the time and the name of each provider, so before I went in I sat down with the official list and compared the timing between each appointment to what you described as the timeline of your trial, and that's how I figured out WHAT was going to be happening and WHEN.

              So my trial was this past Tuesday and I passed with flying colors.

              I was overjoyed at first. I am still relieved. But now I am at a:

              "the spasticity was killing me for almost 3 years straight before the pump trial/it was so hard to live with this much pain before and it's still so hard/I passed the test but now all I can do is wait until the referral to the neurosurgeon for the eval goes through and after that wait until I can be scheduled for surgery/and in the meantime I am in agony every day/please please please let it be soon" period of my life.

              I know I am so lucky that I passed, and based on my experience of the trial and everything I have read from other "pumpsters" here, I am on the precipice of relief. But I just want to BE THERE.

              Thank you so much for helping!



                What happened

                I read all your posts and I have the same pain you did. Whatever happened with your pump? Did it end up working???