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
@1ZillBilly10 жыл бұрын
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.
@ryanadam11534 жыл бұрын
Thank you for your fighting spirit. I love you brother. Much love from Michigan.
@mrsdetroit528 жыл бұрын
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
@gaborisrael21667 жыл бұрын
Mrs Detroit What part of Detroit are you from?
@clancymark8 жыл бұрын
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
@kaptkrutch12 жыл бұрын
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.
@coreymitch196912 жыл бұрын
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.
@kevinbrass58169 жыл бұрын
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.
@ShadoWareinc8 жыл бұрын
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.
@ParalyzedLiving8 жыл бұрын
Yes, the pump was the best choice I made post-injury. It really helps.
@honkytonk201013 жыл бұрын
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.
@ParalyzedLiving11 жыл бұрын
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.
@stargate469812 жыл бұрын
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.
@J420-x3i5 жыл бұрын
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 ❤️
@supergee10704 жыл бұрын
Did you end up getting the pump? How is it? I have CP as well and was wondering if this would be suitable
@joyceelmer21785 жыл бұрын
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.
@amyshaw893612 жыл бұрын
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!
@angelusa7312 жыл бұрын
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
@Frewtsalad2 жыл бұрын
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.
@connierusseau92054 жыл бұрын
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!!!
@TheWayItIs.12 жыл бұрын
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. ;-)
@johnnyboy3652 жыл бұрын
Don't do it. I have 1 and it doesn't work at all
@paulalabreck63107 жыл бұрын
My Baclofen pump saved my life!! I was taking so much oral medication I was a Zombie. T8-9 is where my injury is.
@sheldonbrookes2999Ай бұрын
I'm t6 r7 t8 T9 and I'm getting a pump very soon. My back muscles is so tight all the time ..........
@ParalyzedLiving12 жыл бұрын
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.
@tashamichalczuk92434 жыл бұрын
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!!
@ParalyzedLiving4 жыл бұрын
Tasha Michalczuk that’s fantastic! Thank you!
@HeirweghB6 жыл бұрын
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.
@frankfromupstateny37968 жыл бұрын
Great courage....great video....thx for teaching us all.
@chinezekid14 жыл бұрын
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!
@ParalyzedLiving4 жыл бұрын
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.
@chinezekid14 жыл бұрын
@@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.
@Momma05088 жыл бұрын
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.
@cdscraper12 жыл бұрын
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!
@bobbinewland52234 жыл бұрын
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 😊
@ParalyzedLiving4 жыл бұрын
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. 👍🏼
@kanderson17012 жыл бұрын
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.
@angierivero437611 жыл бұрын
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
@MrRatherino8 жыл бұрын
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!
@ParalyzedLiving8 жыл бұрын
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.
@ParalyzedLiving13 жыл бұрын
@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.
@GaBoYnFla13 жыл бұрын
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.
@VW-Fan7 жыл бұрын
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
@ParalyzedLiving7 жыл бұрын
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.
@arlenepiduhan8770 Жыл бұрын
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
@carolhughes293510 жыл бұрын
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 :)
@millserd13 жыл бұрын
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.
@NewEnglandBudo11 жыл бұрын
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.
@ryanbolton10766 жыл бұрын
Baclofen pump is a game changer. Thank you med tronics
@ParalyzedLiving12 жыл бұрын
Yes, you should look into it if your spasms get in the way of your life. Medtronic makes the pump. Look it up!
@erinvaughn37394 жыл бұрын
Great information ... Thank You ! I have had the same problem.
@michaellbliss191011 жыл бұрын
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.
@shilohskyy2 жыл бұрын
I learned so much from this video. Thank you so much!
@EIngles19659 жыл бұрын
In the next 2 weeks i'll be getting this surgery done Thank you so much for your video
@ParalyzedLiving9 жыл бұрын
+Efrain Ingles Absolutely! Hopefully you will gain some much needed relief. I know I did.
@EIngles19659 жыл бұрын
+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
@lisatodd34203 жыл бұрын
This video was very helpful! Thank you!
@Deepin21013 жыл бұрын
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.
@GaBoYnFla13 жыл бұрын
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.
@vallerographics4 жыл бұрын
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
@ParalyzedLiving4 жыл бұрын
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.
@MrJazzeman13 жыл бұрын
@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.
@mellbell222211 жыл бұрын
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 :)
@ParalyzedLiving12 жыл бұрын
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.
@MySpinalInjury13 жыл бұрын
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.
@ParalyzedLiving13 жыл бұрын
@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.
@ParalyzedLiving11 жыл бұрын
I went about 10 months post-injury before getting the pump. I was miserable and practically begged the Dr for the pump.
@chersmith96352 жыл бұрын
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 😁
@ParalyzedLiving2 жыл бұрын
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!
@chersmith96352 жыл бұрын
@@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.
@ParalyzedLiving2 жыл бұрын
@@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.
@arthuroxner596910 жыл бұрын
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.
@ParalyzedLiving10 жыл бұрын
Arthur Oxner I hope it works too! It really has been a lifesaver.
@arthuroxner596910 жыл бұрын
She passed the test, now waiting on a date to do the implant. We're hopeful!
@angelusa7312 жыл бұрын
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
@PearlLily13 жыл бұрын
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...
@amyshaw893612 жыл бұрын
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.
@rondedrie220211 жыл бұрын
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
@royjones71805 жыл бұрын
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?
@jhbrown535 жыл бұрын
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.
@reelcountrygirl8 ай бұрын
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!
@ParalyzedLiving8 ай бұрын
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.
@reelcountrygirl8 ай бұрын
Thank you for the response and your videos! I can learn the facts from doctors, but hearing from a person with experience is invaluable.
@ParalyzedLiving8 ай бұрын
@@reelcountrygirl no problem and I agree 100%! I learn more from others who have been in the same boat. 😊
@stitchesandstaples13 жыл бұрын
I have this pump for pain. I have morphine and anaesthetic in it. It is such a life saver for me.
@adrianagreenia573210 жыл бұрын
I wish I had a kitchen like yours, being able to get under the sink must be glorious
@paraplegicfoot13 жыл бұрын
congrats my friend, i hope you have better life.
@jasonking29433 жыл бұрын
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?
@ParalyzedLiving3 жыл бұрын
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.
@jasonking29433 жыл бұрын
@@ParalyzedLiving thanks for your reply.
@marcusallenromer83858 жыл бұрын
I'm going to be getting the baclofen the pump and 2017
@markpugner73409 жыл бұрын
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.
@obbig809 жыл бұрын
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!
@Dmitry-Cheshev9 жыл бұрын
obbig80 I understand you. I had a lot of problems with the clonus. Now I have baclofen pump and don't have problems
@obbig809 жыл бұрын
Дмитрий Чешев My clonus has gone also now I have the pump
@Dmitry-Cheshev9 жыл бұрын
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?
@michaellbliss191011 жыл бұрын
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.
@momonweelz13 жыл бұрын
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. :(
@nigelfernandez40925 жыл бұрын
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.
@87row419 жыл бұрын
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?
@markabt75813 жыл бұрын
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.
@ParalyzedLiving3 жыл бұрын
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.
@markabt75813 жыл бұрын
@@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
@christinemarriot11 жыл бұрын
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!
@randallynngraham833 жыл бұрын
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.
@eamon5543 Жыл бұрын
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.
@KillerFaceification11 жыл бұрын
I appreciate this video. It's definitely time for me to do this.
@traxfan3212 жыл бұрын
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.
@erinsaarimyquadriplegicadv3614 жыл бұрын
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.
@olivermartinez85682 жыл бұрын
Are you still out there dealing with this? I just read your post from 10 years ago, desperately interested..
@jimmystarnes78106 жыл бұрын
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.
@kevinsmith78835 жыл бұрын
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
@Maritere3ify3 жыл бұрын
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.
@ParalyzedLiving3 жыл бұрын
Spastic paraplegia is what I have and yes it definitely works!
@slick_slicers12 жыл бұрын
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?
@ParalyzedLiving13 жыл бұрын
@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!
@ExploringwithJimmy6 жыл бұрын
I'm wondering if they're making advances in medical science to repair spinal cord injuries take care
@rcsick32625 жыл бұрын
Can I get the name of your pump doctor please? Can’t seem to get mine adjusted right.
@antoniettagraziuso243610 ай бұрын
Ciao ,volevo sapere oggi come stai?Per gamba pesante e rigida per sclerosi multipla, puo se4vive questo trattamento?Grazie mille
@Roflsponge11 жыл бұрын
I'm taking this orally right now, along with Tramadol. Benzo withdrawals caused this - such an evil class of drugs.
@nomisschaf32911 жыл бұрын
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
@polo94313 жыл бұрын
Good Can I ask how much it cost?
@MitchellKay-gj8sc2 жыл бұрын
I have one to because of my mild cerebral palsy
@shawnsorbom89075 жыл бұрын
Weird...The symptoms you are describing are very similar to Cerebral Palsy. I get spastic overflow, and Clonus too. I had a pump, but my body rejected it (long story).
@massagejoedallas12 жыл бұрын
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:)
@Eddiecainn3 жыл бұрын
How long did it take for the spinal headaches to go away after the procedure
@koniwithak12 жыл бұрын
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.
@luisa40072 жыл бұрын
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.
@ParalyzedLiving2 жыл бұрын
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.
@luisa40072 жыл бұрын
@@ParalyzedLiving that’s awesome!! I read somewhere the pump could malfunction if one goes into a jacuzzi or hot springs, is that true?
@i.m.pressive2 жыл бұрын
Can you travel by plane with pump? How it will react on metal detector?
@sherigoggin62368 жыл бұрын
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.
@ParalyzedLiving8 жыл бұрын
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?
@joanmcgilton50754 жыл бұрын
I recently got a pain pump. I go every other week to get meds I got it up to 1. It’s morphine it’s not helping my pain we have to travel over 2 hours to go to my pain doctor