In this video I talk about controlling severe muscle spasms with intrathecal baclofen pump therapy. This pump has made an already difficult life much easier!
you describe me down to a tee mate. ive only just recently become a complete T3 after a bike accident. my spasticity was off the charts (bucking me out of my chair, rolling me out of bed) and no oral medication was doing the trick so i decided to get one of these pumps installed also. ive had it in for just a bit over a month now and am already seeing major improvements. id recommend it to anyone having the same issues. keep up these videos they are great support! thanks
Thank you for responding. He did go through with it and all went well. Now just to wait and see. He will also have a pain med with it shortly. That is actually more of a problem than the spasms. He has been dealing with this for 21 years now. I am looking so forward to him being more comfortable. I know our life will be just that much better. Love your videos, they helped alot!
Hi I'm an occupational therapy student. Thanks for posting this video and for being so open and honest about your day-day life, treatment, and morning routine. This video will definitely help me be a better practitioner to my clients.
Sounds like mine pre Baclofen era. I received my first Baclofen pump in 1991, before the drug was legal. I was the first patient in Washington state study at Washington State Medical Center in Seattle. I had 6-7 operations on my first pump! LOL I would go through twice as much for the relief. You did a great job describing your symptoms, drug reactions, or non reactions. I've been up to 1500 mics daily. I want to thank my friend Dr. John D Loeser retired (A top 10 world rated pain specialist, director of Neuro surgery UWMC, head surgeon at Children's hospital) for taking me in as an experiment, and taking care of me for 17 years. In 14 months I'll receive my 5th pump. I would have been dead had this pump not come along. The dangers taken into account while considering the STUDY were far outweighed by the pain and constant leg spams. Anyone having severe muscle spasms should talk to your Dr. about this drug.
i have really been torn about having this pump installed since i left the mayo clinic. i have watched a number of videos and yours is by far the most informative. thabks for the help.
Hi! I a doctor of physical therapy student on rotation and will participate in a intrathecal baclofen trial this week. I found your videos while researching the topic. I have learned so much by watching all of them. Thank you so much for sharing your experiences!
Hi thank you so much to making this video. I have Spastic Cerebral Palsy and am now 27.. The spasms have gotten to the point where I am on two different muscle relaxers 3 times a day and have been doing research on the Baclofen pump to help. I have brought it up to my pain management doctor before but he brushed it off. After doing the research and watching this video I am going to insist on this. I hate taking pills and I want to get on with living.
Hi Michael, it took a week or two to feel better. My lack of sensation in my stomach helped but my body still reacted to the pain and I felt sick, stiff, and uncomfortable. Once you heal up, you will be glad you got the pump.
My daughters pump trial is tomorrow she is 16 spastic quadriplegic she failed the trial at three years old crossing our fingers this will change our lives thank u for this video up late nite worrying and u helped me so much
Thank you so much for this video! I am a DSW student and was working with someone today with a Baclofen pump, unfortunately the circumstances at the moment did not allow me to quickly research more about the baclofen pump, but your video really helped me understand in plain language what I needed to know. Thanks so much!!
This is such a helpful video! I have a 3yo with early onset spastic paraplegia taking oral baclofen, and we have had numerous conversations about inserting a pump. Our only obstacle right now is weight gain, as she needs to double her weight before we can safely proceed.
I just found your video and it’s now 2019. I’m planning on getting a baclofen pump soon too. I have cerebral palsy and have terrible spasticity. This was a great video and gave me a lot of information. Keep it up and stay strong 💪. Hope it’s still doing a great job for you. God bless and much love ❤️
Thanks for sharing with us. I am on Baclofen orally and still not working - must discuss with my Dr and Neurologist about the option of the Pump - Thanks again
My daughter has Cerebral Palsy (5 years old) and her spasticity is now uncontrollable with oral baclofen. The pump has been suggested as an option. I am glad there is some hope and yours has had a beneficial outcome. ~thank you~ Angie
Thanks you for the insight into the pump. I've been dealing with major leg spasticity for over 5 yrs caused by muscular dystrophy. The doctor has told me about it but I didn't like the idea of a pump inside me. But seeing how you are able bend and flex without injuring the implant surgery I felt more at ease about it. It's been over 25 years since I've been able to ride. Thanks for helping me dream again. ;-)
Thanks for this video. I got my CVA (stroke) last November and I've been going through revalidation ever since. I'll probably get a Baclofen pump on 28 June.
My Dr is Dr Clairmont!! My injury is a T12 burst, happened in 2018, I have been super nervous about trying this and your video has helped me so much! It's nice to see someone I can relate to 😊
Wonderful. Modern science and medicine are truly miracles of the modern age. One hundred years ago, with horses, dirt roads, and basically no pain killers or safe medicines, it would have made the life you live now near impossible. Keep on truckin.
Thank you so much for this video! I'm a T5 paraplegic, and my leg spasms are really bad. I had a doctors appointment today, that said oral doesn't work, and they don't think injections will work either. So I'm going for a trial to see if the Baclofen solution works. If so then I'm going to get a pump. I was a bit scared until I seen this video. Again you've really helped me feel a lot better about this.
Boy does my husband sound just like you! His spasms are really really bad at nighttime, and when transfering and any time he stretches out his legs! We have an appt today and I am going to beg his dr for one of these!!!
I'm a C6/C7 injury, only wish I could get one of these pumps, very hard to get in Ireland, love all your vids man, you say it like it is, great explanations of living after injury
God bless you. Great video. Am on 1 10 mg oral Baclofen. Even that makes me very sleepy as I take it for morning headache and nausea. I’m prescribed 3 times per day. But thankfully don’t need it. Hope you are still being well with this.
Glad the pump is working so effectively for you....the spasms are a real problem even for me and I walk c7 incomp. I tried oral baclofen-slept for a month....tried some other medication...basically same results. When I did adjust to the sedation levels on baclofen, I was so weak-I couldn't walk that well. I did look better walking-smoother but not as far. So I gave it up and just staggar. I did talk to a doc about the pump but felt I just wasn't quite there and had fear of the weakness.
you are awesome and I want you to know what a tremendous help this vid has been...young friend going for consultation in NY later this month...not so scared now...thanks!
awesome video! sitting in the hospital bed after my pump surgery right now. I've watched this video before, but it's a good refresher and very clear and concise info here. thanks Brian!
sflo0 glad you are on your way to getting some relief!! It may take a few months to dial it in but you will be surprised how good you will feel without fighting spasms.
@@ParalyzedLiving yep! already feeling a lot better. only on 125 mcg/ day and already notice a difference. figure once we figure out the proper programming it'll be fantastic. I'm pretty skinny, 5'10", 130lbs.. so it sticks out quite a bit. got the 20ml instead of 40ml pump because of that, but I do notice it hits my rib when I'm transferring as well. guess it just takes some getting used to.
Thanks very much for the response. Feeling much better and I'm actually going to the doctors tomorrow to increase the dosage as he put me on the lowest dose possible. I've suffered from tremendous tone, mostly in the form of constant rigidity of the muscles below my c5 injury, for the five years that I've been injured. Nonetheless, I've been reluctant to go through with the surgery because of its invasiveness. Hopefully I can see that same types of results that you've seen.
I had the same problem with leg spasm. I also had the pump. It works great when the catheter is in your spinal fluid, but I was so active I kept pulling the catheter from the spinal canal. So I kept getting surgeries to put it back in place. Over time I got tired of the surgeries and had it removed.
I don't take any medication for my spasms and i had the same spasms as you talked about, i was scared of the side effects taking medication in the long run.So what i did was to learn how to live with them and what i found is that i lost very little size off my legs and now the spasms hardly bother me.For me i feel spasms keep your legs toned,but that is just me. and one more think nice videos thanks.
thank you sooooooo much for leaving this video! it has given me some confidence to consider this for myself i have cerebral palsy. your amazing just so you know :)
Thank you for this. I’ve just been diagnosed with a form of MND, and this is one of the treatments. If you are up for it, I would appreciate a video of how it worked out for you long term, if you still have one, and any challenges you faced.
It took about a year to get my spasms well managed but it starts working right after you have your surgery. You will spend about 24 hours in the hospital and recovery was about a week or two.
I think im gonna ask my doc about this. I have really bad spasms (t4 complete) also. Just like how u explained. I have been just living with them...and baclofen 4 times a day. This pump seems like the answer for me as well. Thanks for sharing.
My doctor wanted me to get the pump but I didn't want to. My spasms are mild but I do take baclofen and valume for spasms. Well this answers my last questions. Awesome videos love the g35.
+Paralyzed Living Hello mate it's been a while now since i got my baclofen implant it's set at 80 right now a little high i think since it's made my shoulders weak. Good new thou my spasms are gone i can stretch my legs without any spasms. It hasn't helped with my chronic foot pain so now i'm waiting to go to a pain clinic that works with this implant and they may be able to inject pain medication right into the pump. i've been suffering for 5 years now but i'm hopeful this will be a better year thanks again for your video
Hiya, I get muscle spasms so I know what you're talking about. I don't have a spinal injury but I had a stroke 7 years ago that left me with right side paralysis. I tried oral Baclofen about 4 years ago but it was leaving me like a zombie all day! So my consultant tried me on botox injections, in my arm and they DO help, as I have had broken sleep for 7 years. I am nearly into a year of trials for botox for lower limb spasticity.......hopefully in years to come I can have the botox for my leg too. Nice video and thanks for explaining. Best wishes from England :)
I had one of the first in the New England Area in 2003. I had a longtime injury at C3-C4 and the lamenectomy failed to correct the spasticity and clonus. I had been taking horse doses of oral baclofen and neurontin. I had the 20cc. pump w/ catheter @ T 6 level. In '08 I had the 40 cc pump but the catheter is at T1. I have continuous flow setting with a bolus @ 9 pm for sleep. I have 19 months left on this pump before I get my third. My first did not have the feature for battery life.
Great videos and congrats on your new addition to the family. I getting the pump next week and wanted to ask if you have any regrets or negative experience with your pump? I'm a T5/T6 from a motorcycle accident in 16. Thanks
@1ds2ds3ds The pump is metal and very sturdy. I doubt it would cause any injury. I can usually go around 10 weeks between refills. The pump holds 40mL.
I just had the pump implanted two days ago. I'm still having a tremendous amount of pain particularly in the abdomen and have not been able to get out of bed. How long did it take for the pain to subside and when were you able to get back to your normal routine? By the way, your videos are great and very insightful.
I can’t wait to get mine I should of done this 15 years ago. Been suffering with these spasms for to long it’s to the point where I hate waking up and not being able to just start my day. I wake up in such a good mood then when I try to sit up the battle begins and that’s how the rest of my day goes fighting to sit up in bed and once I’m in the chair I’m fighting to stay seated since they want to make my body go straight. Some days I can’t even reach my shoes my legs are so strong. They have more muscle tone then some ppl that can walk. It’s horrible. I broke my fémur trying to brake a spasm. I hope this works for me
@Lithinar81 I have nerve damage at L1 due to fbss. They put bupivicane, feyntenol and baclofen in my IT pump. The bupivicane is what really helps with my leg pain. It is a soothing numb euphoric feeling in my legs. No more constant burning, aching or feeling like my legs are on fire anymore. My atrophy is gone now as well. Hope this helps you.
thank you so much for sharing your story and for explaining what you are feeling, and for teaching others about your life and experiences with the drugs( which I am not a fan of) I hope that the pump will help you live and feel better. I wish you the very best and I will follow you when I can( I am sick too, I have MS and PML becaused me by the drug Tysabri. Best wishes, Angela
thanks this info really helped me understand how baclofen works etc I use it for my daughter who is 4 she cannot speak so I have to figure stuff out she is only on oral baclofen and they dot do pumps yet in NZ hopefully she might get one one day, well thanks 4 the info...
Thank you very much for this video :) I have MS for quite a while and am now considering the pump; I had the Baclofen trial two weeks ago, but I guess I'm very sensitive to meds as it left me paralyzed for 18+ hours :( Scariest thing I've ever been through; but information like this is helping figure it out!
Curious on what decision you had made. I have MS and now been dealing with severe spasticity for 3 years now in my right leg. Been kinda hesitate about the procedure.
Hi. I had to let you know just how much I appreciate your videos. I've learned so much. I began dating my guy 2 years ago. He's been paralyzed for over 20 years. I always have so many questions. He's a self professed Alpha male. A Marine. It's soo difficult to get him to watch these vids. There could be something new that would make his life more comfortable. He's finally agreed to do the Botox for his bladder. Now I want to try to get him interested in a standing chair. I think it would do wonders for his spasms. They're brutal sometimes. He uses a lot of energy just dealing with those. I just wanted to say thank you. Even if I can't get him to watch I am. You both have the same injury type, paralyzed in the same area. And... his name is Brian 😁
@@ParalyzedLiving my boyfriend just had his first botox treatment in his bladder last week. He had awful after effects. He hasn't realized any benefits yet, even though we read that 2 weeks is the earliest effects might be realized. Needless to say he's not keen on a repeat treatment. So I'm not sure he'll be too keen on getting this pump. Even though his spasms are bad enough that I would think he'd at least consider it. Have you had any complications with it? Did you have any side effects after it was placed?? My guy, Brian😁, is 52. I don't know if age would have any bearing on these treatments.
@@chersmith9635 I too had bladder Botox and it honestly took about 2 weeks for my bladder to settle down. Tell him to hang in there for now. I honestly have not had any side effects with the Baclofen pump. It simply works and works well. Surgery wasn’t pleasant but the long term benefits far outweigh the short term pain I experienced. It all comes down to what he wants to deal with. If the spasms are bad but manageable and he’s OK living with them as is than maybe the pump isn’t necessary. Mine were out of control and made my daily living/quality of life very poor so this was the best solution for me.
I am in OH also, and I have been T4 for 17 yrs. The last few years my spasm's have really gotten out of control. But I am not to sure about having a catheter in my spine. Do you ever worry about a spinal infection? Also did you try heavy therapy before you went this route? Thanks.
Friday I get my third pump, I've already had an overdose due to an error by a doctor (I almost died...too low heart rate and low blood pressure).I also had withdrawal symptoms because the hose of the pump was loose (a lot of itching,spasms and no sleep because of the itching and spasms).But if i didn't use my Baclofenpump my life would be a lot worse because of the spasms. Sorry for my bad English, Greetings from the Netherlands
My husband is also a T1 and is scheduled to have this surgery Tuesday april 24th. He deals with alot of pain in his legs and not so much the spasms. The trial went well and he thought if it alleviates at least that, maybe the pain will disapate. He, as of today, is not excited about the surgery and in fact even comment he cant go through with it. I would love to speak with you or have him speak with you if at all possible.
I'm in rehab because of muscle spasms right now. My SCI was in 2004. We've tried and re-tried all the drugs also Botox and I failed the Baclofen Challenge (trial). I'm a C6 complete and also had CP since I was born. The Baclofen in my spine just caused me to not be able to move my arms, but my legs were still kicking away... This seems to be the result with all of the drugs so far because they work on all of my muscles.
@bigfatdad46 It typically takes 24-48 months to get the pump fully dialed in. I don't have any problems with it getting in the way and I am very active. Occasionally, I will feel it hit the bottom of my rib cage but it's nothing that is too terrible.
Today is his surgery date...I hope he is under the knife because it is completely worth it. It will take some time to get his dosage dialed in but eventually they can get his pain under control with minimal to no side effects.
Hi I’m talking with my doctor about potentially getting a pump. My spasticity isn’t bad when I was sitting down, I can transfer I have no problems doing things like that, I am a C for incomplete quadriplegic and I’m actually able to walk but the spasticity in my lower back is stopping me from walking these days. It’s so tight and actually causes me quite a bit of pain when I do try to stand. This video was very interesting and helpful for me, but I was wondering If they do any tests before hand to figure out whether you are a good candidate or not? Thank you for this video. I was also very surprised at how large the pump is which scares me a little bit but if it allows me to walk I am all in.
Did your initial trial dose work well for you? I did my trial today but I didn't get the results I was hoping for. Do you recommend me still giving the pump a try.
You're so "lucky"! The pump did reduce my spasms from incredibly severe to just plain severe. But I had 2 different surgeons install 3 different pumps, and each time after about a month, the catheter broke in half at the point of entry between vertebrae due to my severe opisthotonic spasms. Still have the catheters floating in my spinal cavity. Back to 160 mg oral baclofen plus phenytoin plus clonazepam, and still have to tie myself down with velcro straps to stay in place at night to sleep. :(
Hi Brian im t4 complete & want to ask if you feel nerve impulses in your legs & trunk? & what do you do about it? I get it all the time, I can feel the impulses shooting up & it makes life uncomfortable, like a heavy feeling numbness. if I sit in the chair the whole day im doing pressure care lifting myself up but I still get that numb feeling. then when I get on the bed which ever side I lay on a few minutes later starts getting numb on the side of my stomach & leg so I turn to the other side & again few minutes later. do you have any suggestions?
My wife is scheduled for the Baclofen pump test on 2/2/15. We're hoping the test is positive so she can have the implant. Her spasticity from an injury to her C-5 and C-6 is absolutely awful. Your video was uplifting. She's much older than you. I just hope it works for her like it did for you.
Hey thanks for the video. I have HSP and am on 40mg of Oral Baclofen at the moment and going up to 80mg over the next 2 months. At the 40mg I haven't felt any difference with my walking though do you believe that the pump will fix that? Thank you
I have a primary brain stem glioma extending down to C4. I had radiation in 2007 which caused many complications including spinal cord injury. Did you find it harder to do transfers etc with the pump. Doctors have been after me for years trying to get me to get the pump. I have heard it sometimes can make a person too loose causing further loss of function.
Thanks for your video. I was just diagnosed, HSP, have had spasticity for 3 yrs now, am a little fearful of the side effects of the baclofen pump, as Baclofen has made me so tired and lethargic and depressed. I am able to walk, the neuro doesn't know where my injury is, but I do have DDD, as well as arachnoiditis. Do you know people who are walkers, having the ability to walk ( like with two logs for legs) who have the ability walk faster and better? Thanks so much, sorry this is so long.
Hello! I’ve been trying Botox injections but unfortunately they have not been working that well and now I’ve been considering getting a Baclofen pump and I noticed that your video is 11 years old. You mention that the Baclofen pump is the size of a hockey puck that was 11 years ago? Is it any smaller now and how was the surgeries to put in the new one? Never having spasms again sounds amazing, but having a surgery every six years does not.
I'm C3-C5 incomplete tetraplegic on 120mg of Baclofen a day, and, as you say, I'm always tired yet can't sleep for long because of the spasms. Maybe I should look in to this?
@Lithinar81 I sent you a PM with a little more info on this. I have some nerve pain but it's not really severe. I suggest calling Medtronic because I have heard of patients getting a mix of Baclofen and pain medication filled in their pumps. This may be just the thing that you need...but I'm sure they will have a better idea. Good luck!
I had a doctor who relentlessly increased my dose, even after I voiced the problems it was causing, for nearly 4 years before leaving him. Any increase should be at your request only, and never let a doctor play god with your medication levels as I did. Only you know what you feel and need.
sorry I'm just curious feel free to answer these questions: what material is the pump made out of inside of your belly? how long does it last until they refill it? if you fell on your stomach, would the pump break or do damage to you? also I hope you get the best out of your life with this disability :) ~Florida
Hi I’m 23 I am seriously considering getting the pump, I just wanted to know more about the pump from someone who actually have it for example what’s the recovery time when u got it, I am full time student and I’m wondering if I should wait until I’m done with school or get it now I just wanted to know more about it, Does the refill hurt? Do you feel when it releases the medicine? Also So what you said about Spasms, before you got the pump was it so bad that you were in pain all the time? Does the pump really help that cuz I’m like dying of pain all the time, day and night... like when I forget to take the pill it is like hell!
I’m scheduled to get my pump in soon. I was wondering how concerned you were with the possible risks? I know the chances are low but my Doctor mentioned it was possible for the catheter to move if you are very active which could cause problems. Also, the biggest scare for me was that scar tissue could form at the needle site which could cause damage to the nerves and loss of even more function and you wouldn’t know unless you did testing for it. I was wondering if you get tested for scar tissue or anything? I know these risks are very low but it did give me quite some pause.
Hi John I just read ur post. U mentioned the pump possibly moving because u r high energy, great news, I just watched a video of a young woman who said because she is so active her doctor stitched the baclofen pump down therefore allowing her to jump.around if she could. I wish I remembered the title of the video. Anyway good luck , but most important is that ur doctor is aware of all that is available for u. My point is that u have an answer to ur problem. Good luck and God bless.
thanks for showing this...I have spastic cp but had a procedure called "selective dorsal rhizotomy " which majorly helped spasticity in my legs and I'm not sure how it got routed to this video..also, you're very cute:)
My fiance is a T-5 complete injury and will be going in for his Baclofen trial on Wednesday... I'm just so freaked out about this surgery happening so soon. He was injured May 21st, and has been out of the hospital only since August 28th.. His spasms were becoming out of control even with uping his Baclofen, and then switching to Dantrolene.. How long after your injury did you or your doctors decide this was the best thing?
Do you have a lot of nerve pain? My doc said this can do that too. I'm kind of skeptical...but after 10 years of pain I'm so sick of it. Any info you or anyone else could provide would be great. Thanks!
Hi, im paralyzed from T6 and i got quite heavy spasm too. At the moment im taking 100mg of oral Baclofen and there isn't any difference yet.. I've been thinking about the Baclofen pump for a while but i am not sure about it.. How often do you need to refill your pump? Greets from Germany
My Baclofen pump saved my life!! I was taking so much oral medication I was a Zombie. T8-9 is where my injury is.
you describe me down to a tee mate. ive only just recently become a complete T3 after a bike accident. my spasticity was off the charts (bucking me out of my chair, rolling me out of bed) and no oral medication was doing the trick so i decided to get one of these pumps installed also. ive had it in for just a bit over a month now and am already seeing major improvements. id recommend it to anyone having the same issues. keep up these videos they are great support! thanks
Thank you for responding. He did go through with it and all went well. Now just to wait and see. He will also have a pain med with it shortly. That is actually more of a problem than the spasms. He has been dealing with this for 21 years now. I am looking so forward to him being more comfortable. I know our life will be just that much better. Love your videos, they helped alot!
Hi I'm an occupational therapy student. Thanks for posting this video and for being so open and honest about your day-day life, treatment, and morning routine. This video will definitely help me be a better practitioner to my clients.
Sounds like mine pre Baclofen era. I received my first Baclofen pump in 1991, before the drug was legal. I was the first patient in Washington state study at Washington State Medical Center in Seattle. I had 6-7 operations on my first pump! LOL I would go through twice as much for the relief. You did a great job describing your symptoms, drug reactions, or non reactions. I've been up to 1500 mics daily. I want to thank my friend Dr. John D Loeser retired (A top 10 world rated pain specialist, director of Neuro surgery UWMC, head surgeon at Children's hospital) for taking me in as an experiment, and taking care of me for 17 years. In 14 months I'll receive my 5th pump. I would have been dead had this pump not come along. The dangers taken into account while considering the STUDY were far outweighed by the pain and constant leg spams. Anyone having severe muscle spasms should talk to your Dr. about this drug.
i have really been torn about having this pump installed since i left the mayo clinic. i have watched a number of videos and yours is by far the most informative. thabks for the help.
Thank you for your fighting spirit. I love you brother. Much love from Michigan.
Hi! I a doctor of physical therapy student on rotation and will participate in a intrathecal baclofen trial this week. I found your videos while researching the topic. I have learned so much by watching all of them. Thank you so much for sharing your experiences!
Hi thank you so much to making this video. I have Spastic Cerebral Palsy and am now 27.. The spasms have gotten to the point where I am on two different muscle relaxers 3 times a day and have been doing research on the Baclofen pump to help. I have brought it up to my pain management doctor before but he brushed it off. After doing the research and watching this video I am going to insist on this. I hate taking pills and I want to get on with living.
Hi Michael, it took a week or two to feel better. My lack of sensation in my stomach helped but my body still reacted to the pain and I felt sick, stiff, and uncomfortable. Once you heal up, you will be glad you got the pump.
My daughters pump trial is tomorrow she is 16 spastic quadriplegic she failed the trial at three years old crossing our fingers this will change our lives thank u for this video up late nite worrying and u helped me so much
Mrs Detroit What part of Detroit are you from?
Great courage....great video....thx for teaching us all.
Thank you so much for this video! I am a DSW student and was working with someone today with a Baclofen pump, unfortunately the circumstances at the moment did not allow me to quickly research more about the baclofen pump, but your video really helped me understand in plain language what I needed to know. Thanks so much!!
Tasha Michalczuk that’s fantastic! Thank you!
This is such a helpful video! I have a 3yo with early onset spastic paraplegia taking oral baclofen, and we have had numerous conversations about inserting a pump. Our only obstacle right now is weight gain, as she needs to double her weight before we can safely proceed.
I just found your video and it’s now 2019. I’m planning on getting a baclofen pump soon too. I have cerebral palsy and have terrible spasticity. This was a great video and gave me a lot of information. Keep it up and stay strong 💪. Hope it’s still doing a great job for you. God bless and much love ❤️
Did you end up getting the pump? How is it? I have CP as well and was wondering if this would be suitable
Thanks for sharing with us. I am on Baclofen orally and still not working - must discuss with my Dr and Neurologist about the option of the Pump - Thanks again
Baclofen pump is a game changer. Thank you med tronics
My daughter has Cerebral Palsy (5 years old) and her spasticity is now uncontrollable with oral baclofen. The pump has been suggested as an option. I am glad there is some hope and yours has had a beneficial outcome. ~thank you~ Angie
Thanks you for the insight into the pump. I've been dealing with major leg spasticity for over 5 yrs caused by muscular dystrophy. The doctor has told me about it but I didn't like the idea of a pump inside me. But seeing how you are able bend and flex without injuring the implant surgery I felt more at ease about it. It's been over 25 years since I've been able to ride. Thanks for helping me dream again. ;-)
Don't do it. I have 1 and it doesn't work at all
Thanks for this video. I got my CVA (stroke) last November and I've been going through revalidation ever since. I'll probably get a Baclofen pump on 28 June.
My Dr is Dr Clairmont!! My injury is a T12 burst, happened in 2018, I have been super nervous about trying this and your video has helped me so much! It's nice to see someone I can relate to 😊
bobbi newland haha that’s awesome!! It was a little nerve racking for me as well but it was all totally worth it in the long run. 👍🏼
Wonderful. Modern science and medicine are truly miracles of the modern age. One hundred years ago, with horses, dirt roads, and basically no pain killers or safe medicines, it would have made the life you live now near impossible. Keep on truckin.
Thank you so much for this video! I'm a T5 paraplegic, and my leg spasms are really bad. I had a doctors appointment today, that said oral doesn't work, and they don't think injections will work either. So I'm going for a trial to see if the Baclofen solution works. If so then I'm going to get a pump. I was a bit scared until I seen this video. Again you've really helped me feel a lot better about this.
Yes, the pump was the best choice I made post-injury. It really helps.
Thank you so much for the information you gave us, you are really helping others, thank you very much for sharing and helping,
best wishes
Angela
Great information ... Thank You !
I have had the same problem.
Boy does my husband sound just like you! His spasms are really really bad at nighttime, and when transfering and any time he stretches out his legs! We have an appt today and I am going to beg his dr for one of these!!!
I'm a C6/C7 injury, only wish I could get one of these pumps, very hard to get in Ireland, love all your vids man, you say it like it is, great explanations of living after injury
Glad the vids help and I'm sorry you have issues in Ireland. I still think this has been a HUGE help for my injury.
God bless you. Great video. Am on 1 10 mg oral Baclofen. Even that makes me very sleepy as I take it for morning headache and nausea. I’m prescribed 3 times per day. But thankfully don’t need it. Hope you are still being well with this.
Glad the pump is working so effectively for you....the spasms are a real problem even for me and I walk c7 incomp. I tried oral baclofen-slept for a month....tried some other medication...basically same results. When I did adjust to the sedation levels on baclofen, I was so weak-I couldn't walk that well. I did look better walking-smoother but not as far. So I gave it up and just staggar. I did talk to a doc about the pump but felt I just wasn't quite there and had fear of the weakness.
At some point, I might have to use it again. Esp when I have to start using a wheelchair. Thanks again for another great informative video.
you are awesome and I want you to know what a tremendous help this vid has been...young friend going for consultation in NY later this month...not so scared now...thanks!
Glad it was helpful! The pump has been a Godsend for me. No side effects and less pills you have to worry about. Go get it! You won't be disappointed.
awesome video! sitting in the hospital bed after my pump surgery right now. I've watched this video before, but it's a good refresher and very clear and concise info here. thanks Brian!
sflo0 glad you are on your way to getting some relief!! It may take a few months to dial it in but you will be surprised how good you will feel without fighting spasms.
@@ParalyzedLiving yep! already feeling a lot better. only on 125 mcg/ day and already notice a difference. figure once we figure out the proper programming it'll be fantastic. I'm pretty skinny, 5'10", 130lbs.. so it sticks out quite a bit. got the 20ml instead of 40ml pump because of that, but I do notice it hits my rib when I'm transferring as well. guess it just takes some getting used to.
Thanks very much for the response. Feeling much better and I'm actually going to the doctors tomorrow to increase the dosage as he put me on the lowest dose possible. I've suffered from tremendous tone, mostly in the form of constant rigidity of the muscles below my c5 injury, for the five years that I've been injured. Nonetheless, I've been reluctant to go through with the surgery because of its invasiveness. Hopefully I can see that same types of results that you've seen.
This video was very helpful! Thank you!
I had the same problem with leg spasm. I also had the pump. It works great when the catheter is in your spinal fluid, but I was so active I kept pulling the catheter from the spinal canal. So I kept getting surgeries to put it back in place. Over time I got tired of the surgeries and had it removed.
I don't take any medication for my spasms and i had the same spasms as you talked about, i was scared of the side effects taking medication in the long run.So what i did was to learn how to live with them and what i found is that i lost very little size off my legs and now the spasms hardly bother me.For me i feel spasms keep your legs toned,but that is just me. and one more think nice videos thanks.
thank you sooooooo much for leaving this video! it has given me some confidence to consider this for myself i have cerebral palsy. your amazing just so you know :)
Thank you for this. I’ve just been diagnosed with a form of MND, and this is one of the treatments. If you are up for it, I would appreciate a video of how it worked out for you long term, if you still have one, and any challenges you faced.
I learned so much from this video. Thank you so much!
It took about a year to get my spasms well managed but it starts working right after you have your surgery. You will spend about 24 hours in the hospital and recovery was about a week or two.
congrats my friend, i hope you have better life.
I think im gonna ask my doc about this. I have really bad spasms (t4 complete) also. Just like how u explained. I have been just living with them...and baclofen 4 times a day. This pump seems like the answer for me as well. Thanks for sharing.
Yes, you should look into it if your spasms get in the way of your life. Medtronic makes the pump. Look it up!
My doctor wanted me to get the pump but I didn't want to. My spasms are mild but I do take baclofen and valume for spasms. Well this answers my last questions. Awesome videos love the g35.
In the next 2 weeks i'll be getting this surgery done Thank you so much for your video
+Efrain Ingles Absolutely! Hopefully you will gain some much needed relief. I know I did.
+Paralyzed Living
Hello mate it's been a while now since i got my baclofen implant it's set at 80 right now a little high i think since it's made my shoulders weak. Good new thou my spasms are gone i can stretch my legs without any spasms. It hasn't helped with my chronic foot pain so now i'm waiting to go to a pain clinic that works with this implant and they may be able to inject pain medication right into the pump. i've been suffering for 5 years now but i'm hopeful this will be a better year thanks again for your video
Hiya, I get muscle spasms so I know what you're talking about. I don't have a spinal injury but I had a stroke 7 years ago that left me with right side paralysis. I tried oral Baclofen about 4 years ago but it was leaving me like a zombie all day! So my consultant tried me on botox injections, in my arm and they DO help, as I have had broken sleep for 7 years. I am nearly into a year of trials for botox for lower limb spasticity.......hopefully in years to come I can have the botox for my leg too. Nice video and thanks for explaining. Best wishes from England :)
I appreciate this video. It's definitely time for me to do this.
I had one of the first in the New England Area in 2003. I had a longtime injury at C3-C4 and the lamenectomy failed to correct the spasticity and clonus. I had been taking horse doses of oral baclofen and neurontin. I had the 20cc. pump w/ catheter @ T 6 level. In '08 I had the 40 cc pump but the catheter is at T1. I have continuous flow setting with a bolus @ 9 pm for sleep.
I have 19 months left on this pump before I get my third. My first did not have the feature for battery life.
Great videos and congrats on your new addition to the family. I getting the pump next week and wanted to ask if you have any regrets or negative experience with your pump?
I'm a T5/T6 from a motorcycle accident in 16. Thanks
I wish I had a kitchen like yours, being able to get under the sink must be glorious
@1ds2ds3ds The pump is metal and very sturdy. I doubt it would cause any injury. I can usually go around 10 weeks between refills. The pump holds 40mL.
I went about 10 months post-injury before getting the pump. I was miserable and practically begged the Dr for the pump.
I just had the pump implanted two days ago. I'm still having a tremendous amount of pain particularly in the abdomen and have not been able to get out of bed. How long did it take for the pain to subside and when were you able to get back to your normal routine? By the way, your videos are great and very insightful.
I can’t wait to get mine I should of done this 15 years ago. Been suffering with these spasms for to long it’s to the point where I hate waking up and not being able to just start my day. I wake up in such a good mood then when I try to sit up the battle begins and that’s how the rest of my day goes fighting to sit up in bed and once I’m in the chair I’m fighting to stay seated since they want to make my body go straight. Some days I can’t even reach my shoes my legs are so strong. They have more muscle tone then some ppl that can walk. It’s horrible. I broke my fémur trying to brake a spasm. I hope this works for me
Vallero Graphics yes do it!! I remember the struggle and it’s horrible. I really hope it works for you!! Best thing I did post injury.
@Lithinar81 I have nerve damage at L1 due to fbss. They put bupivicane, feyntenol and baclofen in my IT pump. The bupivicane is what really helps with my leg pain. It is a soothing numb euphoric feeling in my legs. No more constant burning, aching or feeling like my legs are on fire anymore. My atrophy is gone now as well. Hope this helps you.
thank you so much for sharing your story and for explaining what you are feeling, and for teaching others about your life and experiences with the drugs( which I am not a fan of) I hope that the pump will help you live and feel better. I wish you the very best and I will follow you when I can( I am sick too, I have MS and PML becaused me by the drug Tysabri. Best wishes,
Angela
I have this pump for pain. I have morphine and anaesthetic in it. It is such a life saver for me.
Hi sir thank you so much for sharing this my bf hve the same situation of this so I'm very glad to know this great god bless u
I'm going to be getting the baclofen the pump and 2017
thanks this info really helped me understand how baclofen works etc I use it for my daughter who is 4 she cannot speak so I have to figure stuff out she is only on oral baclofen and they dot do pumps yet in NZ hopefully she might get one one day, well thanks 4 the info...
Thank you very much for this video :) I have MS for quite a while and am now considering the pump; I had the Baclofen trial two weeks ago, but I guess I'm very sensitive to meds as it left me paralyzed for 18+ hours :( Scariest thing I've ever been through; but information like this is helping figure it out!
Curious on what decision you had made. I have MS and now been dealing with severe spasticity for 3 years now in my right leg. Been kinda hesitate about the procedure.
Hi. I had to let you know just how much I appreciate your videos. I've learned so much. I began dating my guy 2 years ago. He's been paralyzed for over 20 years. I always have so many questions. He's a self professed Alpha male. A Marine. It's soo difficult to get him to watch these vids. There could be something new that would make his life more comfortable. He's finally agreed to do the Botox for his bladder. Now I want to try to get him interested in a standing chair. I think it would do wonders for his spasms. They're brutal sometimes. He uses a lot of energy just dealing with those.
I just wanted to say thank you. Even if I can't get him to watch I am. You both have the same injury type, paralyzed in the same area. And... his name is Brian 😁
Thanks for the message, Cher! Yea some people don’t care to watch them but I’m glad you are able to get something out of them!
@@ParalyzedLiving my boyfriend just had his first botox treatment in his bladder last week. He had awful after effects. He hasn't realized any benefits yet, even though we read that 2 weeks is the earliest effects might be realized. Needless to say he's not keen on a repeat treatment. So I'm not sure he'll be too keen on getting this pump. Even though his spasms are bad enough that I would think he'd at least consider it.
Have you had any complications with it? Did you have any side effects after it was placed??
My guy, Brian😁, is 52. I don't know if age would have any bearing on these treatments.
@@chersmith9635 I too had bladder Botox and it honestly took about 2 weeks for my bladder to settle down. Tell him to hang in there for now.
I honestly have not had any side effects with the Baclofen pump. It simply works and works well. Surgery wasn’t pleasant but the long term benefits far outweigh the short term pain I experienced. It all comes down to what he wants to deal with. If the spasms are bad but manageable and he’s OK living with them as is than maybe the pump isn’t necessary. Mine were out of control and made my daily living/quality of life very poor so this was the best solution for me.
I am in OH also, and I have been T4 for 17 yrs. The last few years my spasm's have really gotten out of control. But I am not to sure about having a catheter in my spine. Do you ever worry about a spinal infection? Also did you try heavy therapy before you went this route?
Thanks.
Friday I get my third pump, I've already had an overdose due to an error by a doctor (I almost died...too low heart rate and low blood pressure).I also had withdrawal symptoms because the hose of the pump was loose (a lot of itching,spasms and no sleep because of the itching and spasms).But if i didn't use my Baclofenpump my life would be a lot worse because of the spasms.
Sorry for my bad English,
Greetings from the Netherlands
My husband is also a T1 and is scheduled to have this surgery Tuesday april 24th. He deals with alot of pain in his legs and not so much the spasms. The trial went well and he thought if it alleviates at least that, maybe the pain will disapate. He, as of today, is not excited about the surgery and in fact even comment he cant go through with it. I would love to speak with you or have him speak with you if at all possible.
I'm in rehab because of muscle spasms right now. My SCI was in 2004. We've tried and re-tried all the drugs also Botox and I failed the Baclofen Challenge (trial). I'm a C6 complete and also had CP since I was born. The Baclofen in my spine just caused me to not be able to move my arms, but my legs were still kicking away... This seems to be the result with all of the drugs so far because they work on all of my muscles.
@bigfatdad46 It typically takes 24-48 months to get the pump fully dialed in. I don't have any problems with it getting in the way and I am very active. Occasionally, I will feel it hit the bottom of my rib cage but it's nothing that is too terrible.
Today is his surgery date...I hope he is under the knife because it is completely worth it. It will take some time to get his dosage dialed in but eventually they can get his pain under control with minimal to no side effects.
Hi I’m talking with my doctor about potentially getting a pump. My spasticity isn’t bad when I was sitting down, I can transfer I have no problems doing things like that, I am a C for incomplete quadriplegic and I’m actually able to walk but the spasticity in my lower back is stopping me from walking these days. It’s so tight and actually causes me quite a bit of pain when I do try to stand. This video was very interesting and helpful for me, but I was wondering If they do any tests before hand to figure out whether you are a good candidate or not? Thank you for this video. I was also very surprised at how large the pump is which scares me a little bit but if it allows me to walk I am all in.
Did your initial trial dose work well for you? I did my trial today but I didn't get the results I was hoping for. Do you recommend me still giving the pump a try.
Maybe I should look in to this
You're so "lucky"! The pump did reduce my spasms from incredibly severe to just plain severe. But I had 2 different surgeons install 3 different pumps, and each time after about a month, the catheter broke in half at the point of entry between vertebrae due to my severe opisthotonic spasms. Still have the catheters floating in my spinal cavity. Back to 160 mg oral baclofen plus phenytoin plus clonazepam, and still have to tie myself down with velcro straps to stay in place at night to sleep. :(
Hi Brian im t4 complete & want to ask if you feel nerve impulses in your legs & trunk? & what do you do about it? I get it all the time, I can feel the impulses shooting up & it makes life uncomfortable, like a heavy feeling numbness. if I sit in the chair the whole day im doing pressure care lifting myself up but I still get that numb feeling. then when I get on the bed which ever side I lay on a few minutes later starts getting numb on the side of my stomach & leg so I turn to the other side & again few minutes later. do you have any suggestions?
I'm having mine done tomorrow. I can't even shower daily because of mine! And I feel you on the clonus...damn that sucks!
obbig80 I understand you. I had a lot of problems with the clonus. Now I have baclofen pump and don't have problems
Дмитрий Чешев My clonus has gone also now I have the pump
obbig80 Ohh... it's really bad, when have the pump and have clonus. I hope you will be ok soon. How long time do you have pump?
My wife is scheduled for the Baclofen pump test on 2/2/15. We're hoping the test is positive so she can have the implant. Her spasticity from an injury to her C-5 and C-6 is absolutely awful. Your video was uplifting. She's much older than you. I just hope it works for her like it did for you.
Arthur Oxner I hope it works too! It really has been a lifesaver.
She passed the test, now waiting on a date to do the implant. We're hopeful!
Hey thanks for the video. I have HSP and am on 40mg of Oral Baclofen at the moment and going up to 80mg over the next 2 months. At the 40mg I haven't felt any difference with my walking though do you believe that the pump will fix that? Thank you
I have a primary brain stem glioma extending down to C4. I had radiation in 2007 which caused many complications including spinal cord injury.
Did you find it harder to do transfers etc with the pump.
Doctors have been after me for years trying to get me to get the pump.
I have heard it sometimes can make a person too loose causing further loss of function.
Thnak you!
baclofen pump ,life changer!
Thanks for your video. I was just diagnosed, HSP, have had spasticity for 3 yrs now, am a little fearful of the side effects of the baclofen pump, as Baclofen has made me so tired and lethargic and depressed. I am able to walk, the neuro doesn't know where my injury is, but I do have DDD, as well as arachnoiditis. Do you know people who are walkers, having the ability to walk ( like with two logs for legs) who have the ability walk faster and better? Thanks so much, sorry this is so long.
btw i had heard of a b pump but i had no idea it was inside u thanx 4 sharing
Hello! I’ve been trying Botox injections but unfortunately they have not been working that well and now I’ve been considering getting a Baclofen pump and I noticed that your video is 11 years old. You mention that the Baclofen pump is the size of a hockey puck that was 11 years ago? Is it any smaller now and how was the surgeries to put in the new one? Never having spasms again sounds amazing, but having a surgery every six years does not.
I'm C3-C5 incomplete tetraplegic on 120mg of Baclofen a day, and, as you say, I'm always tired yet can't sleep for long because of the spasms. Maybe I should look in to this?
My spasticity i not as bad as yours but I am considering this
@Lithinar81 I sent you a PM with a little more info on this. I have some nerve pain but it's not really severe. I suggest calling Medtronic because I have heard of patients getting a mix of Baclofen and pain medication filled in their pumps. This may be just the thing that you need...but I'm sure they will have a better idea. Good luck!
does it get in the way when you lean forward or when doing normal everyday things? Im curious because im thinking of getting it.
I had a doctor who relentlessly increased my dose, even after I voiced the problems it was causing, for nearly 4 years before leaving him. Any increase should be at your request only, and never let a doctor play god with your medication levels as I did. Only you know what you feel and need.
Did you take the max dose allowed of oral baclofen before getting the pump ? Because I'm on 20mg oral and it's no good for me right now.
I have one to because of my mild cerebral palsy
sorry I'm just curious feel free to answer these questions:
what material is the pump made out of inside of your belly?
how long does it last until they refill it?
if you fell on your stomach, would the pump break or do damage to you?
also I hope you get the best out of your life with this disability :)
~Florida
Hi I’m 23 I am seriously considering getting the pump, I just wanted to know more about the pump from someone who actually have it for example what’s the recovery time when u got it, I am full time student and I’m wondering if I should wait until I’m done with school or get it now I just wanted to know more about it, Does the refill hurt? Do you feel when it releases the medicine? Also So what you said about Spasms, before you got the pump was it so bad that you were in pain all the time? Does the pump really help that cuz I’m like dying of pain all the time, day and night... like when I forget to take the pill it is like hell!
How long did it take for the spinal headaches to go away after the procedure
I’m scheduled to get my pump in soon. I was wondering how concerned you were with the possible risks? I know the chances are low but my Doctor mentioned it was possible for the catheter to move if you are very active which could cause problems. Also, the biggest scare for me was that scar tissue could form at the needle site which could cause damage to the nerves and loss of even more function and you wouldn’t know unless you did testing for it. I was wondering if you get tested for scar tissue or anything? I know these risks are very low but it did give me quite some pause.
Hi John I just read ur post. U mentioned the pump possibly moving because u r high energy, great news, I just watched a video of a young woman who said because she is so active her doctor stitched the baclofen pump down therefore allowing her to jump.around if she could. I wish I remembered the title of the video. Anyway good luck , but most important is that ur doctor is aware of all that is available for u. My point is that u have an answer to ur problem. Good luck and God bless.
I'm nervous about getting the pump trying to get some confidence I have issues with tightness and stiffness of my muscles. Are overdose common ?
thanks for showing this...I have spastic cp but had a procedure called "selective dorsal rhizotomy " which majorly helped spasticity in my legs and I'm not sure how it got routed to this video..also, you're very cute:)
My fiance is a T-5 complete injury and will be going in for his Baclofen trial on Wednesday... I'm just so freaked out about this surgery happening so soon.
He was injured May 21st, and has been out of the hospital only since August 28th.. His spasms were becoming out of control even with uping his Baclofen, and then switching to Dantrolene..
How long after your injury did you or your doctors decide this was the best thing?
Can you travel by plane with pump? How it will react on metal detector?
Do you have a lot of nerve pain? My doc said this can do that too. I'm kind of skeptical...but after 10 years of pain I'm so sick of it. Any info you or anyone else could provide would be great. Thanks!
Hi, im paralyzed from T6 and i got quite heavy spasm too. At the moment im taking 100mg of oral Baclofen and there isn't any difference yet.. I've been thinking about the Baclofen pump for a while but i am not sure about it.. How often do you need to refill your pump?
Greets from Germany
I'm wondering if they're making advances in medical science to repair spinal cord injuries take care