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!
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!
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