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
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.
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...
Wow never heard of a Baclofen Pump. Honestly I will never get one no matter how bad my spasms will be cuz that looks weird bro. At some point i like my spasms, feels better when my legs are moving. It also help transfer to my SUV a lot easier. I even stop taking baclofen pills and im totaly fine with out it.
I ams so glad that I found your video and the way you explained everything was great. I am scheduled to have one inserted next month because of severe spasms but I am not nervouse any more. Good luck to you and thanks for lowering my anxiety.,
I've had my pump for a month now , still needs adjusting . Would like to know if you do any exercises/stretches especially abdominal work , if so , does the pump get in the way ? ,
@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.
Have had my Baclofen pump two weeks now , difference in my body is amazing , spasms are completely gone now . Just having to get used to my "new " legs ! . So glad I had op done , worth the wait ! .
I know personal testimonies of people healed of deafness & paralysis using natural treatment. I will refer you to the doctors doings this if your interested.
Just seen your video , you describe my condition down to a tee , I've been waiting 9 months for an I.T.B. Pump , can't wait anymore , my spasms are doing my head in ! . Great videos , keep up the good work .
@bigfatdad46 Oh man, I really feel for you. I remember what that was like. I had to fight to get mine asap. It is crazy how much of a waiting list there is.
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. :(
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!
@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!
@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'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.
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.
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.
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.
@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.
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
Lindsay1814 1 week ago
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.
honkytonk2010 1 month ago in playlist More videos from blackpearlv6
btw i had heard of a b pump but i had no idea it was inside u thanx 4 sharing
3223karmatime 1 month ago
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...
3223karmatime 1 month ago
Wow never heard of a Baclofen Pump. Honestly I will never get one no matter how bad my spasms will be cuz that looks weird bro. At some point i like my spasms, feels better when my legs are moving. It also help transfer to my SUV a lot easier. I even stop taking baclofen pills and im totaly fine with out it.
Andruha7 1 month ago
I ams so glad that I found your video and the way you explained everything was great. I am scheduled to have one inserted next month because of severe spasms but I am not nervouse any more. Good luck to you and thanks for lowering my anxiety.,
RTylia 2 months ago
I've had my pump for a month now , still needs adjusting . Would like to know if you do any exercises/stretches especially abdominal work , if so , does the pump get in the way ? ,
bigfatdad46 2 months ago
@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.
blackpearlv6 2 months ago
Have had my Baclofen pump two weeks now , difference in my body is amazing , spasms are completely gone now . Just having to get used to my "new " legs ! . So glad I had op done , worth the wait ! .
bigfatdad46 2 months ago
I know personal testimonies of people healed of deafness & paralysis using natural treatment. I will refer you to the doctors doings this if your interested.
charukrsnadasa 3 months ago
Further to my comments 5 days ago , I am now scheduled for my pump on 23rd Nov , can't wait to get rid pof the spasms !
bigfatdad46 3 months ago
Just seen your video , you describe my condition down to a tee , I've been waiting 9 months for an I.T.B. Pump , can't wait anymore , my spasms are doing my head in ! . Great videos , keep up the good work .
bigfatdad46 3 months ago in playlist More videos from blackpearlv6
@bigfatdad46 Oh man, I really feel for you. I remember what that was like. I had to fight to get mine asap. It is crazy how much of a waiting list there is.
blackpearlv6 3 months ago
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. :(
momonweelz 4 months ago
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!
Lithinar81 5 months ago
@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!
blackpearlv6 4 months ago
@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.
MrJazzeman 3 months ago
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.
MySpinalInjury 5 months ago
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.
millserd 6 months ago
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.
GaBoYnFla 6 months ago
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.
GaBoYnFla 6 months ago
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.
Deepin210 6 months ago
sorry I'm just curious feel free to answer these questions:
what material is the pump made out of inside of your belly?
how long does it last until they refill it?
if you fell on your stomach, would the pump break or do damage to you?
also I hope you get the best out of your life with this disability :)
~Florida
1ds2ds3ds 6 months ago
@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.
blackpearlv6 6 months ago
congrats my friend, i hope you have better life.
paraplegicfoot 6 months ago