I have severe CP 95% use crutches to get around on. I'm older adult that has trouble with my right foot real tight heal cord. When my shoe is off I feel less sure standing on it toe touching it buckles. I'm thinking I might need to get heal cord release to help. My years of habit walking do you think such surgery would effect my knee and hip? Seems like if repair isn't perfect puts more pressure on other areas. Has anyone done Heal cord release how long in cast? How long in bed? Thanks
I lost both legs as a baby. I'm 45 now and have a severe illiotibial tightness. Gotta have surgery to lengthen it in March. It's bad. When I lay on my back, my knee disarticulation stump sticks up in the air like 40 percent in air. Therapy didn't work. So I guess they will cut the band in several places from hip to end of demure bone. Dr says what I'm going through is like what color patients goes through. Not much muscle in stump so they will do the it band. And free it from scar tissue too... God bless ya....
I have cp as well and was recently diagnosed with flat back syndrome which means I lack the natural curvature in the spine therefore giving me a pinched forward posture.Do any of you have this as a result of cp? I was told I will eventually need a complex spine surgery to correct it. I also need another spine surgery because I have a torn disk that is pinching on my nerve. I am super scared. If anyone has gone through this please share God Bless ❤️.
Hey Jentry I've got spastic quadriplegia and I am also CP. I've also had a lot of botox in my legs, left hand and in my back. I also have had surgery to fix both my hips and a surgery very similar to yours where they also straightened my big toe. Your videos are really amazing and I hope everything goes well in the future. All the best!
I had Botox too! and I did my Biochemistry Senior Thesis on how it is used in treatment of cerebral palsy. If you are interested, I could send you the thesis and powerpoint that explains how it work. I also had surgery when I was 12 to lengthen the quads, hamstring, and calve muscles bilaterally. The procedure was done at Shriner's Hospital as well (Springfield, MA).
38-year-old spastic diplegic male here, and by coincidence I was actually part of the FDA Medical Trials for Botox back around my Middle School days! I had them generally in my front and back calf muscles (although there might have been a round to help my thigh/hip area, but it's been a while to recall.) I found them to be helpful in a short-to-medium term basis, 6-8 months for the first 2, less than 4 months for the latter 2 - Botox Injections lessen depending on the physical amount of liquid injected, if it's multiple time in the same muscle/tendon/etc, and amounts of procedures done. It's something I'm considering looking back into, as it's been 15 years since my last round, and as my "physical nature" has worsened a considerable degree since the last round and it's time to start “fighting back" in new/old ways. The main issue that I find interesting in terms of surgeries in my generation (“Generation X”) vs younger friends such as Ys/Millennials & Zs… not “Generation Zombie”, although that brings up the fascinating idea of a Zombie with Cerebral Palsy: could pre-Zombie Spasticity actually *lessen* upon transformation to a one-sided hemiplegic-type shuffling gait brain-eating creature? (…and if not, can a Disabled Zombie gain access to the Affordable Care Act and various treatment options? ;-) I’ve had approximately 11 surgeries, with multiple “procedures” during each, starting from the age of 18 months to my last major one on December 21st, 1999 (yes, my last surgery was in the LAST MILLENNIUM!! :-) and generally took a “Surgery/Physical Rehab/PT & OT and numerous therapy options between Surgeries” approach while my younger friends have started in reverse with intense physical therapy, less invasive procedures such as Braces and other Orthotic Devices, Botox, “single procedure” surgeries, pharmaceuticals such as Baclofen, Valium and other musical relaxants. Is it a better medical plan rather attacking a singular physical problem then repeating? I imagine so, since the Medical Establishment as switched to the former. Fantastic, open & honest video! I plan to be checking out the rest of yours over the rest of the week. Best, ~Ian
Thanks for sharing your stories involving surgeries and procedures, Ian! I definitely agree with what you're saying about treating CP and the differences between older and newer generations; many of the younger people I've spoken to have primarily only participated in physical, as well as other types of therapy. It raises a good question about whether or not invasive procedures, such as Botox, are more effective or less effective than simply training the body to naturally move differently (like physical therapy). Thanks for you feedback!
I strongly recommend that anyone thinking about getting surgery at Shriner's pursue getting a second opinion from a non-teaching hospital first. I had several surgeries at Shriner's, one which resulted in a leg infection that almost cost me my left leg. The reason for the infection? One of the student nurses got repulsed by the amount of blood when she started taking off one of my bandages, so she just left it on as is for the next nurse to handle. During another surgery, I caught a bug the night before the surgery and was vomiting the day of the surgery. Like the young lady in the video, the staff chalked it up to me being nervous and a wimp. To Shriner's credit, I finally got to talk to a doctor who postponed the surgery. Finally, during yet another surgery where they operated on both of my hips, my left side was taking munch longer to heal than my right. I asked a doctor why that was, and he explained that they did different procedures on each hip to teach the students the different ways the surgery could be accomplished. He also stated that it was typical for one procedure to take longer to heal than the other... when I protested asking why on earth they would perform the procedure that took longer to heal, he simply said, 'Well, we are a teaching hospital after all.'.... Don't get me wrong, Shriner's does some great work. That said, before getting any procedure done there it is important to fully understand that they are a teaching hospital, which means that young, inexperienced doctor's are ultimately doing the work which is NOT the same as having an experienced surgeon doing the procedure. They'll tell you that the care is just as good because experienced doctors are supervising the procedure. My experience says otherwise. Sorry for the long post... Jentry's comments about having nerve damage after surgery and being called a wimp just struck a chord with me.
I also have CP( spastic) I'm 22. I also had botox in the same areas. it was also ineffective for me after a while. I stopped PT and wearing DAFOs when I was about 15. I felt it was not a long lasting treatment. Anyway in 2003 I had a femoral osteotomy(right side) at the same time a adductor lengthening (right),hamstring lengthening(left). my knees are really bad right now, so their suggesting another hamstring lengthening. because I had everything done at once last time, I was in a body cast. so I don't really know what to expect with this procure any tips?
Thank you! I have CP on my right side and as I get older, it's getting hard to make it up and down stairs on the left side, especially in the subway here in NYC. So I have become sort of aware of my CP and glad for people that say things (like one guy in the subway), "It's o.k., we all have something." I had surgery on my leg when I was 4 and on my arm when I was 5 to stop my hand and foot from twisting out, so I have long scars, even being 50. Lately I've started watching videos like yours and if there is anything I can do to help, let me know. Below is a youtube video from someone else with CP, maybe you've seen it, but it really says something to me. Cerebral Palsy.... my story :)
Wow, thanks for sharing. I have had 10 operations on my legs. 7 on my right and 3 on my left. So, I understand some of what you say. Your's sounds so worst than mine.
Hey Jentry! Great video. I had 2 ortho surgeries as a kid on my left hip and both achilles and inside of ankles. I'm about to have a surgery in April called PERCS to lengthen the hamstrings and you end up bearing full body weight the next day. Also , I had SDR surgery with Dr. T.S. Park in St. Louis where they get rid of spasticity. Check that one out. I think it might help you a lot. It got rid of most if not all of my spasticity.
I have spastic hemiplegia cerebral palsy, affecting my right arm specifically.
I have severe CP 95% use crutches to get around on. I'm older adult that has trouble with my right foot real tight heal cord. When my shoe is off I feel less sure standing on it toe touching it buckles. I'm thinking I might need to get heal cord release to help. My years of habit walking do you think such surgery would effect my knee and hip? Seems like if repair isn't perfect puts more pressure on other areas. Has anyone done Heal cord release how long in cast? How long in bed? Thanks
I lost both legs as a baby. I'm 45 now and have a severe illiotibial tightness. Gotta have surgery to lengthen it in March. It's bad. When I lay on my back, my knee disarticulation stump sticks up in the air like 40 percent in air. Therapy didn't work. So I guess they will cut the band in several places from hip to end of demure bone. Dr says what I'm going through is like what color patients goes through. Not much muscle in stump so they will do the it band. And free it from scar tissue too... God bless ya....
I have cp as well and was recently diagnosed with flat back syndrome which means I lack the natural curvature in the spine therefore giving me a pinched forward posture.Do any of you have this as a result of cp? I was told I will eventually need a complex spine surgery to correct it. I also need another spine surgery because I have a torn disk that is pinching on my nerve. I am super scared. If anyone has gone through this please share God Bless ❤️.
Hey Jentry I've got spastic quadriplegia and I am also CP. I've also had a lot of botox in my legs, left hand and in my back. I also have had surgery to fix both my hips and a surgery very similar to yours where they also straightened my big toe. Your videos are really amazing and I hope everything goes well in the future. All the best!
I had Botox too! and I did my Biochemistry Senior Thesis on how it is used in treatment of cerebral palsy. If you are interested, I could send you the thesis and powerpoint that explains how it work. I also had surgery when I was 12 to lengthen the quads, hamstring, and calve muscles bilaterally. The procedure was done at Shriner's Hospital as well (Springfield, MA).
38-year-old spastic diplegic male here, and by coincidence I was actually part of the FDA Medical Trials for Botox back around my Middle School days! I had them generally in my front and back calf muscles (although there might have been a round to help my thigh/hip area, but it's been a while to recall.) I found them to be helpful in a short-to-medium term basis, 6-8 months for the first 2, less than 4 months for the latter 2 - Botox Injections lessen depending on the physical amount of liquid injected, if it's multiple time in the same muscle/tendon/etc, and amounts of procedures done. It's something I'm considering looking back into, as it's been 15 years since my last round, and as my "physical nature" has worsened a considerable degree since the last round and it's time to start “fighting back" in new/old ways.
The main issue that I find interesting in terms of surgeries in my generation (“Generation X”) vs younger friends such as Ys/Millennials & Zs… not “Generation Zombie”, although that brings up the fascinating idea of a Zombie with Cerebral Palsy: could pre-Zombie Spasticity actually *lessen* upon transformation to a one-sided hemiplegic-type shuffling gait brain-eating creature? (…and if not, can a Disabled Zombie gain access to the Affordable Care Act and various treatment options? ;-) I’ve had approximately 11 surgeries, with multiple “procedures” during each, starting from the age of 18 months to my last major one on December 21st, 1999 (yes, my last surgery was in the LAST MILLENNIUM!! :-) and generally took a “Surgery/Physical Rehab/PT & OT and numerous therapy options between Surgeries” approach while my younger friends have started in reverse with intense physical therapy, less invasive procedures such as Braces and other Orthotic Devices, Botox, “single procedure” surgeries, pharmaceuticals such as Baclofen, Valium and other musical relaxants. Is it a better medical plan rather attacking a singular physical problem then repeating? I imagine so, since the Medical Establishment as switched to the former.
Fantastic, open & honest video! I plan to be checking out the rest of yours over the rest of the week.
Best,
~Ian
Thanks for sharing your stories involving surgeries and procedures, Ian! I definitely agree with what you're saying about treating CP and the differences between older and newer generations; many of the younger people I've spoken to have primarily only participated in physical, as well as other types of therapy. It raises a good question about whether or not invasive procedures, such as Botox, are more effective or less effective than simply training the body to naturally move differently (like physical therapy). Thanks for you feedback!
This video helps. My son has mild CP and had tendon release surgery. We were close to trying botox but we were told that dosage gets higher in time.
I strongly recommend that anyone thinking about getting surgery at Shriner's pursue getting a second opinion from a non-teaching hospital first. I had several surgeries at Shriner's, one which resulted in a leg infection that almost cost me my left leg. The reason for the infection? One of the student nurses got repulsed by the amount of blood when she started taking off one of my bandages, so she just left it on as is for the next nurse to handle. During another surgery, I caught a bug the night before the surgery and was vomiting the day of the surgery. Like the young lady in the video, the staff chalked it up to me being nervous and a wimp. To Shriner's credit, I finally got to talk to a doctor who postponed the surgery. Finally, during yet another surgery where they operated on both of my hips, my left side was taking munch longer to heal than my right. I asked a doctor why that was, and he explained that they did different procedures on each hip to teach the students the different ways the surgery could be accomplished. He also stated that it was typical for one procedure to take longer to heal than the other... when I protested asking why on earth they would perform the procedure that took longer to heal, he simply said, 'Well, we are a teaching hospital after all.'....
Don't get me wrong, Shriner's does some great work. That said, before getting any procedure done there it is important to fully understand that they are a teaching hospital, which means that young, inexperienced doctor's are ultimately doing the work which is NOT the same as having an experienced surgeon doing the procedure. They'll tell you that the care is just as good because experienced doctors are supervising the procedure. My experience says otherwise. Sorry for the long post... Jentry's comments about having nerve damage after surgery and being called a wimp just struck a chord with me.
You are amazing !
Wow - I thought I was tough! You are amazing! Thanks for sharing this, Jentry! Hope school is going well for you.
I would love to read your thesis! Thanks!
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I also have CP( spastic) I'm 22. I also had botox in the same areas. it was also ineffective for me after a while. I stopped PT and wearing DAFOs when I was about 15. I felt it was not a long lasting treatment. Anyway in 2003 I had a femoral osteotomy(right side) at the same time a adductor lengthening (right),hamstring lengthening(left).
my knees are really bad right now, so their suggesting another hamstring lengthening. because I had everything done at once last time, I was in a body cast. so I don't really know what to expect with this procure any tips?
Thank you! I have CP on my right side and as I get older, it's getting hard to make it up and down stairs on the left side, especially in the subway here in NYC. So I have become sort of aware of my CP and glad for people that say things (like one guy in the subway), "It's o.k., we all have something." I had surgery on my leg when I was 4 and on my arm when I was 5 to stop my hand and foot from twisting out, so I have long scars, even being 50. Lately I've started watching videos like yours and if there is anything I can do to help, let me know. Below is a youtube video from someone else with CP, maybe you've seen it, but it really says something to me.
Cerebral Palsy.... my story :)
thanks!
You should try hyperbaric chamber. It helped me.
I have CP and my doctor says I might have to get Botox but I never had any Surgeries for my CP but I am getting leg braces
I have CP to SDR really helped me it"s only for people with CP. I wasn't supposed do nothing and I'm 19 now and I someday want to be a writer.
Wow, thanks for sharing. I have had 10 operations on my legs. 7 on my right and 3 on my left. So, I understand some of what you say. Your's sounds so worst than mine.
My cp was dupont in de now i see someone at u penn
Hey Jentry! Great video. I had 2 ortho surgeries as a kid on my left hip and both achilles and inside of ankles. I'm about to have a surgery in April called PERCS to lengthen the hamstrings and you end up bearing full body weight the next day. Also , I had SDR surgery with Dr. T.S. Park in St. Louis where they get rid of spasticity. Check that one out. I think it might help you a lot. It got rid of most if not all of my spasticity.
My CP might be worst than yours, but I never had any sugeries! You can talk great and very cute!
Love it! Ill try to make a video response for sure :D I have Spastic Diplegia also.
hey Jentry, its James McMillen, i hope you remember me. i'm sorry for everything, but i recommended My girlfriend to your channel