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
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.
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
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.
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.
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.
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.
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 😊
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. ;-)
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 ❤️
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!!
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!
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
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!!!
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.
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.
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!
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.
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
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.
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.
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.
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.
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.
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.
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!
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 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.
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.
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 :)
+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
@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.
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.
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 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.
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.
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 :)
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.
Thank you for sharing this! I am someone who is headed for a trial at Ohio State. I have turned it down for years and now I am ready to go for it. Is there a way that I can speak with you directly?
I just had my trial today and was amazing. I pretty much got total range of motion back and the electric/tension feeling was almost completely gone. I am also in Columbus.
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.
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 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.
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.
Hi! May we please get an update on your long term experience with the pump? How many years did it last, did you get a new one put in, did you have to keep upping your dosage, etc. Thank you for the videos!
Hey! It’s still been great long term. I had my initial pump replaced in 2017 and again in October 2023 since the battery lifespan is about 7 years. My initial dose was actually double what I’m on now (1400 mcg) but much of my spasticity was caused by an underlying spinal issue that I had corrected in 2012 and after that time, I was able to lower the dose. I’ve toyed with adjusting it even lower but the tightness/spasms always return in full force so I found my sweet spot is around 650 mcg. I still have some spasms at this dose but they aren’t inhibiting.
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 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.
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.
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’m getting the ITB trial next month and potentially the pump later this year. I suffered a traumatic brain injury and ischemic stroke in September 2020. Will I still be able to enjoy a glass of wine or champagne with the pump? I also enjoy traveling and scuba diving.
Yes you can still drink. You just may feel the effects a little more. You should be able to keep doing the things you want. They start the dose low and work up so you can dial it in based on your needs.
I find your videos so very informative. I'm not paralized however I have the upmost respect when I see someone who is knowing they are making the most of the situation. I'll never forget once I held a door open for a woman who was in a wheel chair she didn't move and asked that I close the door. It kinda hurt my feelings but she wanted to do things by herself and her way. And now I get that. Being that you don't have feelings from the armpits down how is coughing and if you had to vomit. How does that work?
Glad you like the videos! In my opinion, that woman was being a little rude because it was clear you were only trying to be nice. Oh well, maybe she had her reasons. My cough/sneeze is weak because I lack core muscles but I can get more power by bending at the waste/thrusting my body forward as I do it. That method seems to work pretty well for me.
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.
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.
All you videos are super helpful dude! I was just diagnosed as a T4 para as of Aug 2016 and my spasms are out of control. They go as high as my diaphragm and limit my breathing and eating. I've lost alot of weight due to that alone and barely get more than 4 hrs of sleep. I'm taking 90mg of baclofen a day and I feel no relief whatsoever and so I'm looking I to the pump. I have a question, did you find having the pump limits your movements in anyway? And were there any complications then or now? Appreciate your feedback and thank you so much for all the work you put into your videos.
Sorry to hear about your spasms. I was in the same boat and the pump has been a lifesaver. I'm actually less limited now that I can easily move my muscles that were once fighting me. The only complications i had were related to the scar tissue on my spine and not the pump. I had surgery to fix that and since have had zero issues. I had the pump replaced last year and it was fairly easy to heal from. Get one. You won't regret it!
@@ParalyzedLivingI just wanted to let you know your video helped me decide on getting the pump. I had the surgery on Aug 28th. A large part of it was inspired by your video. After the surgery I had extreme migraines for a over 2 weeks after due to a spinal leak from the surgery and I couldn't lift my head up for more than a few minutes. It was absolute hell. Doc told me to have a blood patch done to stop the leak but when the day came for me to have the patch done I developed a UTI. Ughh, so I needed to wait to have the UTI cleared before proceeding. Once I was cleared from the infection my spinal headaches started calming down and decided to wait out the spinal headaches which they eventually disappeared. Now 3+ weeks later after the pump I'm noticing my spasms are coming back. They started me on a dose of 100, and the first 2 weeks I thought that was way too much but now my spasms are starting to come up again. Especially in my trunk. I'll be going back to get my pump adjusted for the first time. My question is have you noticed your spasms come back bit any time after the surgery and how often did they increase your dose? I know you're taking ALOT more than my starting dose of 100. Just wondering how you felt and got your dose that high over time. Thanks for your time man!
I’m glad you got the pump but I’m sorry to hear about the headaches. I’ve had them before and know how rough they can be. They started me on 100mcg too and raised it a little every couple weeks. Don’t get discouraged because 100 is super low. I’m at 850 now and my spasms are manageable. I got up to 1400 at one time but had a spinal surgery to clear some scarring on my spinal cord that was causing worse spasms. It took about 4-6 months to get my dose where I wanted it to be. Might be less. If it’s been a couple weeks you should be able to go back for a pump increase.
Thanks for the video my Dr. Wants me to consider this for my MS, one of my biggest concerns is I'm also Diabetic and I already wear an Insulin pump and a sensor Too many pumps and machines attached to me.
Yea I get that but if your spasms are bad enough that you can’t stand living with them (like I was) I’d say it’s worth it even with your existing equipment. If your spasms are tolerable than maybe you can do without. It should be your choice though - not your doctor’s.
@@ParalyzedLiving I'm just torn, because living with 3 chronic illness i think ny problems are half mental, and this won't help the mental issues I'm having. Thank you for the reply
@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.
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?
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 going for surgical consult Tuesday. How does a person in a chair recover from the surgery, considering our twisting awkward transfers, while not dislodging anything and ending up back in surgery? Thanks.
Hi Sheri - Sorry for the late reply. The catheter is very resilient to bending/twisting. Trust me, I have put it to the test and have not had issues. The pump itself is also in an area that it is not affected by bending. .How did the consult go?
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.
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
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!
Thank you for your information. You look great. I want to ask you if the Blacofen pump would work for Spastic Paraplegia. I am from Mexico. It´s very important for me to know it, because my sister has this illness and I can´t find here, in my Country, someone who can answer this question for me. Please if you don´t know this illness, I´ll thank you if you can ask to the Dr. Albert Clermont. I know this is too much for you to help me, but I beg you to do it. God bless you.
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. :(
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.
I'm wondering whether that's surgeon-specific. Called Medtronics looking for complication rates by surgeon but they have no data. I've just gotta assume my guy is as good as one up at Mass Gen. Really would prefer to KNOW. Don't even want one surgery, nevermind multiple! How long before you were deep bending and reaching?
i am watching your video's completely out of curiosity. your video's are very insightful to a lot of unknown (seemingly common) difficulties paralyzed folk have to deal with on a daily basis. without your video's i would have never known of so many of the other things than *just walking* becoming paralyzed has an impact upon. i am not paralyzed, so forgive my ignorance on the subject. With you having spasm's through out the portion of your body that is paralyzed, does that mean that your spine has some effort of function? would the spasms indicate a possibility of feeling/control of those muscle could return in the future?
Marcus Meade glad you like the vids! Spasms are a side effect of damaged nerves and don’t have any correlation to regaining function. They are completely involuntary and uncontrollable which is what makes them such a pain to cope with. It’s like trying to tame a toddler throwing a fit except it’s your own body.
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.
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
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
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.
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?
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 for your fighting spirit. I love you brother. Much love from Michigan.
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.
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.
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.
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. 👍🏼
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
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
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!
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!
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
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!!!
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.
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.
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!
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.
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
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.
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.
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.
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.
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.
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.
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.
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.
Baclofen pump is a game changer. Thank you med tronics
My Baclofen pump saved my life!! I was taking so much oral medication I was a Zombie. T8-9 is where my injury is.
I'm t6 r7 t8 T9 and I'm getting a pump very soon. My back muscles is so tight all the time ..........
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.
Great courage....great video....thx for teaching us all.
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
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.
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 :)
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
@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.
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.
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 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.
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.
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 :)
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!
Yes, you should look into it if your spasms get in the way of your life. Medtronic makes the pump. Look it up!
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.
I learned so much from this video. Thank you so much!
This video was very helpful! Thank you!
I have this pump for pain. I have morphine and anaesthetic in it. It is such a life saver for me.
Thank you for sharing this! I am someone who is headed for a trial at Ohio State. I have turned it down for years and now I am ready to go for it. Is there a way that I can speak with you directly?
I just had my trial today and was amazing. I pretty much got total range of motion back and the electric/tension feeling was almost completely gone. I am also in Columbus.
Great information ... Thank You !
I have had the same problem.
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.
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 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.
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.
Hi! May we please get an update on your long term experience with the pump? How many years did it last, did you get a new one put in, did you have to keep upping your dosage, etc. Thank you for the videos!
Hey! It’s still been great long term. I had my initial pump replaced in 2017 and again in October 2023 since the battery lifespan is about 7 years. My initial dose was actually double what I’m on now (1400 mcg) but much of my spasticity was caused by an underlying spinal issue that I had corrected in 2012 and after that time, I was able to lower the dose. I’ve toyed with adjusting it even lower but the tightness/spasms always return in full force so I found my sweet spot is around 650 mcg. I still have some spasms at this dose but they aren’t inhibiting.
Thank you for the response and your videos! I can learn the facts from doctors, but hearing from a person with experience is invaluable.
@@reelcountrygirl no problem and I agree 100%! I learn more from others who have been in the same boat. 😊
Ciao ,volevo sapere oggi come stai?Per gamba pesante e rigida per sclerosi multipla, puo se4vive questo trattamento?Grazie mille
Good
Can I ask how much it cost?
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 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.
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.
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
I’m getting the ITB trial next month and potentially the pump later this year. I suffered a traumatic brain injury and ischemic stroke in September 2020. Will I still be able to enjoy a glass of wine or champagne with the pump? I also enjoy traveling and scuba diving.
Yes you can still drink. You just may feel the effects a little more. You should be able to keep doing the things you want. They start the dose low and work up so you can dial it in based on your needs.
@@ParalyzedLiving that’s awesome!! I read somewhere the pump could malfunction if one goes into a jacuzzi or hot springs, is that true?
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 just saw this video and have bad spasms. You mentioned OSU. Is your doctor/surgeon in Ohio State or Oklahoma?
I find your videos so very informative. I'm not paralized however I have the upmost respect when I see someone who is knowing they are making the most of the situation. I'll never forget once I held a door open for a woman who was in a wheel chair she didn't move and asked that I close the door. It kinda hurt my feelings but she wanted to do things by herself and her way. And now I get that.
Being that you don't have feelings from the armpits down how is coughing and if you had to vomit. How does that work?
Glad you like the videos! In my opinion, that woman was being a little rude because it was clear you were only trying to be nice. Oh well, maybe she had her reasons. My cough/sneeze is weak because I lack core muscles but I can get more power by bending at the waste/thrusting my body forward as I do it. That method seems to work pretty well for me.
@@ParalyzedLiving thanks for your reply.
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.
Can I get the name of your pump doctor please? Can’t seem to get mine adjusted right.
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.
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.
All you videos are super helpful dude! I was just diagnosed as a T4 para as of Aug 2016 and my spasms are out of control. They go as high as my diaphragm and limit my breathing and eating. I've lost alot of weight due to that alone and barely get more than 4 hrs of sleep. I'm taking 90mg of baclofen a day and I feel no relief whatsoever and so I'm looking I to the pump. I have a question, did you find having the pump limits your movements in anyway? And were there any complications then or now? Appreciate your feedback and thank you so much for all the work you put into your videos.
Sorry to hear about your spasms. I was in the same boat and the pump has been a lifesaver. I'm actually less limited now that I can easily move my muscles that were once fighting me. The only complications i had were related to the scar tissue on my spine and not the pump. I had surgery to fix that and since have had zero issues. I had the pump replaced last year and it was fairly easy to heal from. Get one. You won't regret it!
@@ParalyzedLivingI just wanted to let you know your video helped me decide on getting the pump. I had the surgery on Aug 28th. A large part of it was inspired by your video. After the surgery I had extreme migraines for a over 2 weeks after due to a spinal leak from the surgery and I couldn't lift my head up for more than a few minutes. It was absolute hell. Doc told me to have a blood patch done to stop the leak but when the day came for me to have the patch done I developed a UTI. Ughh, so I needed to wait to have the UTI cleared before proceeding. Once I was cleared from the infection my spinal headaches started calming down and decided to wait out the spinal headaches which they eventually disappeared.
Now 3+ weeks later after the pump I'm noticing my spasms are coming back. They started me on a dose of 100, and the first 2 weeks I thought that was way too much but now my spasms are starting to come up again. Especially in my trunk. I'll be going back to get my pump adjusted for the first time.
My question is have you noticed your spasms come back bit any time after the surgery and how often did they increase your dose? I know you're taking ALOT more than my starting dose of 100. Just wondering how you felt and got your dose that high over time. Thanks for your time man!
I’m glad you got the pump but I’m sorry to hear about the headaches. I’ve had them before and know how rough they can be. They started me on 100mcg too and raised it a little every couple weeks. Don’t get discouraged because 100 is super low. I’m at 850 now and my spasms are manageable. I got up to 1400 at one time but had a spinal surgery to clear some scarring on my spinal cord that was causing worse spasms. It took about 4-6 months to get my dose where I wanted it to be. Might be less. If it’s been a couple weeks you should be able to go back for a pump increase.
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?
Thanks for the video my Dr. Wants me to consider this for my MS, one of my biggest concerns is I'm also Diabetic and I already wear an Insulin pump and a sensor Too many pumps and machines attached to me.
Yea I get that but if your spasms are bad enough that you can’t stand living with them (like I was) I’d say it’s worth it even with your existing equipment. If your spasms are tolerable than maybe you can do without. It should be your choice though - not your doctor’s.
@@ParalyzedLiving I'm just torn, because living with 3 chronic illness i think ny problems are half mental, and this won't help the mental issues I'm having.
Thank you for the reply
@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.
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?
How long did it take for the spinal headaches to go away after the procedure
Well the pump work at a C5 level? Thank you
I have the pump and have some questions. Would you able to answer?
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
Are you still out there dealing with this? I just read your post from 10 years ago, desperately interested..
I'm going for surgical consult Tuesday. How does a person in a chair recover from the surgery, considering our twisting awkward transfers, while not dislodging anything and ending up back in surgery? Thanks.
Hi Sheri - Sorry for the late reply. The catheter is very resilient to bending/twisting. Trust me, I have put it to the test and have not had issues. The pump itself is also in an area that it is not affected by bending. .How did the consult go?
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.
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
What size is your pump?
I'm going to be getting the baclofen the pump and 2017
Where is OSU Hospital? I'm in SC without many knowledgeable doctors.. C5 since 97.. Trying to get my license but these spasms are killing my dreams.
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!
Thank you for your information. You look great. I want to ask you if the Blacofen pump would work for Spastic Paraplegia. I am from Mexico. It´s very important for me to know it, because my sister has this illness and I can´t find here, in my Country, someone who can answer this question for me. Please if you don´t know this illness, I´ll thank you if you can ask to the Dr. Albert Clermont. I know this is too much for you to help me, but I beg you to do it. God bless you.
Spastic paraplegia is what I have and yes it definitely works!
Do they have to numb you for the implantation of the pump? Thx
congrats my friend, i hope you have better life.
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. :(
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.
I'm wondering if they're making advances in medical science to repair spinal cord injuries take care
I'm wondering whether that's surgeon-specific. Called Medtronics looking for complication rates by surgeon but they have no data. I've just gotta assume my guy is as good as one up at Mass Gen. Really would prefer to KNOW. Don't even want one surgery, nevermind multiple! How long before you were deep bending and reaching?
Can you travel by plane with pump? How it will react on metal detector?
i am watching your video's completely out of curiosity. your video's are very insightful to a lot of unknown (seemingly common) difficulties paralyzed folk have to deal with on a daily basis. without your video's i would have never known of so many of the other things than *just walking* becoming paralyzed has an impact upon. i am not paralyzed, so forgive my ignorance on the subject. With you having spasm's through out the portion of your body that is paralyzed, does that mean that your spine has some effort of function? would the spasms indicate a possibility of feeling/control of those muscle could return in the future?
Marcus Meade glad you like the vids! Spasms are a side effect of damaged nerves and don’t have any correlation to regaining function. They are completely involuntary and uncontrollable which is what makes them such a pain to cope with. It’s like trying to tame a toddler throwing a fit except it’s your own body.
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.
Do u carry a copy of the pump settings with u at all times? That's what they told me I had to do.
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