This video just brings tears to my eyes because it relates very much to the situation I'm in now. Nearly everyone I talk to has a negative view of a rhizotomy. I can't help but to worry about my son needing more orthopedic/muscular surgeries if an SDR isn't done. It's so hard to know what is best and to fight just to have a decent evaluation done.
I was one of the first people to ever have this surgery. I was young when I had it but old enough to remember what I went through. I wonder sometimes if it was the right thing to do but I know that it was the right thing to do. I had an amazing doctor. With the surgery I was able to do so much. I got to participate in sport and dance. None of which I would have been able to do without the SDR. I hope your son is doing well.
We've been through all of this with our son who is 5 now. He had SDR June 2007 after doing all you've done with Ryan. The botox stopped working, casting was horrible, afo's etc. We went to Dr. Park and wished we ever doubted doing this. He's doing great, but still has issues. Now in Kindergarten, we're scared to death of public school therapists! Check out his vids on our page.
Hi, I watched your video and was wondering if you could give me and my sister some more information...please. Dr. Park is going to perform the rhizotomy surgery on my nephew in about 6 weeks. When my sister was pregnant her baby was diagnosed with hydrocephalus..he had a shunt put in. He is one of the smartest children I have ever met, but he has some problems walking. He walks up on his toes and has been diagnosed with the spasticity(sp) we are very scared. Lynnette
Thank you for spreading the word about SDR. I'm a 40 year old with spastic diplegic CP. Dr Park performed the procedure, I am now 7 weeks post op and will say that I wish I could have had this done when I was young. It has loosened my legs and thighs and I have been doing PT to rebuild strength. I believe that if this would have been available when I was little I probably would not have the deformity in my lower right leg. I believe the sooner one has SDR the better off they will be.
I hope you are continuing to recover. :) I had never heard of an SDR or Dr Park if it were not for other parents from and internet group CPParents. It sounds so scary I remember wanting to know as much as possible. Ryan is now 11 and I still think it helped him greatly and he had it at 4. I often wonder where he would be if he had it earlier.
The name of the medication you're probably thinking of is Baclofen, which works the same way as gamma-amino-butyric acid, the amino acid that controls muscle tone and which the damaged nerves to the spastic muscles can't absorb naturally.
My parents were told SDR wasn't an option for me, so I suffered deformities that caused Dr. Park to tell me recently I wasn't a candidate. After steady breakdown I'm having SDR done by a different surgeon followed by ortho surgery. Risky, but needed.
My husband has HSP and would really benefit off SDR but was told he is to old, now 48, Is there any other doctor but DR. Park who performs this surgery on adults. ????
@Ilonka111 Sorry to just get back on here after a while. I think that for an older person they might reserve the surgery mainly for caregiving... or that is the reason that I've been told as a reason. Say for example someone is so spastic its hard for them to get dressed or in a chair. But literally its been years since I've spoken with a doctor about how an adult could have the surgery. Sorry to not be much help. :(
And just to let you know...I don't hold any grudge against my parents for choosing to have my heel cords cut. Like you said it was the best information they had at the time.
Thank god they have this surgery now. You are right and SDR is awesome. Compared to cutting heelcords which I had done as a kid SDR is a piece of cake. It makes me mad that some people still encourage parents to get lenthening because they are not open to SDR. Dr. Park and the staff are wonderful.
It is truly amazing the freedom the surgery gives kids and some adults..just basic, simple things most people take for granted is what we wanted, needed and anything else was sort of extra I thought. I hope options for CP kids and adults keep getting better.
@ilvsockmonkeys I had DSR when I was 5 I 'm so glad I was able to have the procedure it increased my mobilty and decreased my spasticity, but I've had to have other surgeries. As many of you know spasticity can increase over time or w/ age. I'm now in my early 20's I've had bilateral hamstring/ cord releases, femure ostiotimies, knee surgery and 2 spinal fusions. All of this still had to be done even though the doctor's consider my spastic diplegia form of cp to be mild. SDR's not a "cure all"
@sarah18065 My son is now 13 and he sounds medically similar to you. At 10 he had his first bone surgery, the derotation and then foot surgery. He had a lengthening done at the same time too. The SDR saved him from all the endless Botox treatments I will guess he would have had over the years. Now at 14, we are looking at the knee surgery, a small plate and pins to pull his knee cap down on his left leg. I worry about his spine down the road honestly, but he is still good now.
Continuing - and he should have been in some kind of bouncing device. Anyway his hips are out of socket because his hips didn't develop due to lack of usage. Experts don't know everything.
Some surgeons want to break Jake's thighs so he will be easier to clean (he gets really stiff in a ball) and others say absolutely not. It's hard to know whats best but usually parents have the best instinct.
Surgery is needed sometimes but I think everything should be tried first. Maybe they could try Botox shots for Jake's little legs (adductors) instead? Even if he is not walking, it would still loosen the tightness. Its so hard to know what decision to make and the doctors make it sound like you have to do it yesterday. :/
Right now he is taking a medication (the name escapes me at the moment) and I think that is helping. I really think the therapists missed the boat on Jake's hip development. They put him in a stander.
HOW did I miss this vid? You're a really good mom and I admire you for taking the initiative and having the courage to make the decisions for what is best for your son.
In a way, by being a military family, the constant moving has given us the opportunity to get different opinions from doctors, therapists and other parents. We have seen both good and bad results from surgeries. Its amazing to see how doctors react when you tell them no, or tell them you want another opinion. :P
Ryan and I need to get together and make some videos! He's taking on steps and staris now eh? Yup, the kid is learning to fly.. with or without watching my stunts! ahaha.. he's unstoppable!
You're making good decisions. They've made so many advances in medicine just in the last quarter century, it's amazing. I had to have my major tendons cut in my legs to release my spasms after they'd dislocated my left hip and were dislocating my other hip and knees. I'm glad he won't have to go through that!
Truly tendon and muscle releases are needed and unfortunately the only option in some situations. I can only try to imagine the pain of your recovery. One of my "things" is why advances in medicine is lagging so far behind, IMO, for people with disabilities in comparison to other stuff that is more popular like heart attacks, cervical cancer, etc. *being sarcastic*
This video just brings tears to my eyes because it relates very much to the situation I'm in now. Nearly everyone I talk to has a negative view of a rhizotomy. I can't help but to worry about my son needing more orthopedic/muscular surgeries if an SDR isn't done. It's so hard to know what is best and to fight just to have a decent evaluation done.
JSHANAK 9 months ago
I was one of the first people to ever have this surgery. I was young when I had it but old enough to remember what I went through. I wonder sometimes if it was the right thing to do but I know that it was the right thing to do. I had an amazing doctor. With the surgery I was able to do so much. I got to participate in sport and dance. None of which I would have been able to do without the SDR. I hope your son is doing well.
stephanieadlerm 2 years ago
We've been through all of this with our son who is 5 now. He had SDR June 2007 after doing all you've done with Ryan. The botox stopped working, casting was horrible, afo's etc. We went to Dr. Park and wished we ever doubted doing this. He's doing great, but still has issues. Now in Kindergarten, we're scared to death of public school therapists! Check out his vids on our page.
thefavilles 3 years ago
Hi, I watched your video and was wondering if you could give me and my sister some more information...please. Dr. Park is going to perform the rhizotomy surgery on my nephew in about 6 weeks. When my sister was pregnant her baby was diagnosed with hydrocephalus..he had a shunt put in. He is one of the smartest children I have ever met, but he has some problems walking. He walks up on his toes and has been diagnosed with the spasticity(sp) we are very scared. Lynnette
Bladekaguya 3 years ago
@Bladekaguya Sorry to just see this. I havent logged on in such a long time. I hope your nephew is doing very well post surgery :)
ilvsockmonkeys 11 months ago
Thank you for spreading the word about SDR. I'm a 40 year old with spastic diplegic CP. Dr Park performed the procedure, I am now 7 weeks post op and will say that I wish I could have had this done when I was young. It has loosened my legs and thighs and I have been doing PT to rebuild strength. I believe that if this would have been available when I was little I probably would not have the deformity in my lower right leg. I believe the sooner one has SDR the better off they will be.
mikemax66 3 years ago
I hope you are continuing to recover. :) I had never heard of an SDR or Dr Park if it were not for other parents from and internet group CPParents. It sounds so scary I remember wanting to know as much as possible. Ryan is now 11 and I still think it helped him greatly and he had it at 4. I often wonder where he would be if he had it earlier.
ilvsockmonkeys 3 years ago
The name of the medication you're probably thinking of is Baclofen, which works the same way as gamma-amino-butyric acid, the amino acid that controls muscle tone and which the damaged nerves to the spastic muscles can't absorb naturally.
My parents were told SDR wasn't an option for me, so I suffered deformities that caused Dr. Park to tell me recently I wasn't a candidate. After steady breakdown I'm having SDR done by a different surgeon followed by ortho surgery. Risky, but needed.
kikodawgz 3 years ago
My husband has HSP and would really benefit off SDR but was told he is to old, now 48, Is there any other doctor but DR. Park who performs this surgery on adults. ????
Ilonka111 2 years ago
@Ilonka111 Sorry to just get back on here after a while. I think that for an older person they might reserve the surgery mainly for caregiving... or that is the reason that I've been told as a reason. Say for example someone is so spastic its hard for them to get dressed or in a chair. But literally its been years since I've spoken with a doctor about how an adult could have the surgery. Sorry to not be much help. :(
ilvsockmonkeys 11 months ago
And just to let you know...I don't hold any grudge against my parents for choosing to have my heel cords cut. Like you said it was the best information they had at the time.
massagejoedallas 3 years ago
Thank god they have this surgery now. You are right and SDR is awesome. Compared to cutting heelcords which I had done as a kid SDR is a piece of cake. It makes me mad that some people still encourage parents to get lenthening because they are not open to SDR. Dr. Park and the staff are wonderful.
massagejoedallas 3 years ago
thanks for this video ,my son was born premature, at age 4 he had dorsal done and by the time the month was over he could sit up alone.
he is 16 now never could walk but he felt hunger ,could open hand,talk more words by the time a yearpassed and this in itself was great.
MAGICIAN1973 4 years ago
It is truly amazing the freedom the surgery gives kids and some adults..just basic, simple things most people take for granted is what we wanted, needed and anything else was sort of extra I thought. I hope options for CP kids and adults keep getting better.
ilvsockmonkeys 4 years ago
@ilvsockmonkeys I had DSR when I was 5 I 'm so glad I was able to have the procedure it increased my mobilty and decreased my spasticity, but I've had to have other surgeries. As many of you know spasticity can increase over time or w/ age. I'm now in my early 20's I've had bilateral hamstring/ cord releases, femure ostiotimies, knee surgery and 2 spinal fusions. All of this still had to be done even though the doctor's consider my spastic diplegia form of cp to be mild. SDR's not a "cure all"
sarah18065 11 months ago
@sarah18065 My son is now 13 and he sounds medically similar to you. At 10 he had his first bone surgery, the derotation and then foot surgery. He had a lengthening done at the same time too. The SDR saved him from all the endless Botox treatments I will guess he would have had over the years. Now at 14, we are looking at the knee surgery, a small plate and pins to pull his knee cap down on his left leg. I worry about his spine down the road honestly, but he is still good now.
ilvsockmonkeys 11 months ago
Continuing - and he should have been in some kind of bouncing device. Anyway his hips are out of socket because his hips didn't develop due to lack of usage. Experts don't know everything.
Tahllulah 5 years ago
Some surgeons want to break Jake's thighs so he will be easier to clean (he gets really stiff in a ball) and others say absolutely not. It's hard to know whats best but usually parents have the best instinct.
Tahllulah 5 years ago
Surgery is needed sometimes but I think everything should be tried first. Maybe they could try Botox shots for Jake's little legs (adductors) instead? Even if he is not walking, it would still loosen the tightness. Its so hard to know what decision to make and the doctors make it sound like you have to do it yesterday. :/
ilvsockmonkeys 5 years ago
Right now he is taking a medication (the name escapes me at the moment) and I think that is helping. I really think the therapists missed the boat on Jake's hip development. They put him in a stander.
Tahllulah 5 years ago
HOW did I miss this vid? You're a really good mom and I admire you for taking the initiative and having the courage to make the decisions for what is best for your son.
Tahllulah 5 years ago
In a way, by being a military family, the constant moving has given us the opportunity to get different opinions from doctors, therapists and other parents. We have seen both good and bad results from surgeries. Its amazing to see how doctors react when you tell them no, or tell them you want another opinion. :P
ilvsockmonkeys 5 years ago
Yeah, that would be somewhat of a blessing. I know doctors are so often SO CERTAIN about what to do. That makes me nervous..
Tahllulah 5 years ago
This is a really good video thanks for making it. :)) You are making good choices! :-))
wheels105 5 years ago
Thanks for your kind words. Its always encouraging to hear.
ilvsockmonkeys 5 years ago
Ryan and I need to get together and make some videos! He's taking on steps and staris now eh? Yup, the kid is learning to fly.. with or without watching my stunts! ahaha.. he's unstoppable!
~FWz~
FreeWingz 5 years ago
Yeah, there is no telling what he does when I'm NOT around! *shh* Its all good (:
ilvsockmonkeys 5 years ago
You're making good decisions. They've made so many advances in medicine just in the last quarter century, it's amazing. I had to have my major tendons cut in my legs to release my spasms after they'd dislocated my left hip and were dislocating my other hip and knees. I'm glad he won't have to go through that!
CoquiDave 5 years ago
Truly tendon and muscle releases are needed and unfortunately the only option in some situations. I can only try to imagine the pain of your recovery. One of my "things" is why advances in medicine is lagging so far behind, IMO, for people with disabilities in comparison to other stuff that is more popular like heart attacks, cervical cancer, etc. *being sarcastic*
ilvsockmonkeys 5 years ago