My daughter has spastic diplegia. I am considering SDR. Can anyone give me any information?
Which doctor do you recommend?
Has anyone experience complications?
Do you see a significant decrease of spasticity?
Do you regret doing SDR?
There are many good threads on SDR on this message board. I'd look over those if I were you. We chose Dr. Parks at St. Louis Children's Hospital. He does a less invasive procedure with quicker recovery time. Our PT says it is a serious surgery and you need to go to someone who's really skillful at it. That's why we chose him.
Our son has been a much happier child since he had that surgery. Requires lots of therapy, including LOTS of home therapy, too. Need to be sure you can create the time and energy to do it.
Best of luck,
thank you for responding. I have already contacted dr park and they sent us the eval package. I have yet to speak with anyone on the phone, they just emailed us the application. I was wondering what is the appropriate age to do this surgery?
My daugther is 2 1/2 and I am wondering if I should wait couple of years or is it better to do it as soon as possible.
I believe I remember Dr. Park's people saying that 2 1/2 to 3 years was the ideal age to do the surgery. Noah had his done when he was 3.
I can't remember why--it seems that the recovery time is easier for them at that age vs. waiting til they are older. Plus, they aren't in grade school yet; so they can focus more on the therapy before they get into the longer school routine.
They will give you the head PT's email address to correspond with, and she is great at answering questions about therapy, etc. I found the correspondence with her to be very helpful, since we didn't live close enough to St. Louis to do our ongoing therapy there.
hi vanessa,my son had his SDR when he was 3 we had a lot of stress and a lot of should or shouldnt but we are very happy with our choice to do it today he is six now an attent mainstream school.
Thank you for responding. Can you tell me how your child was before SDR and what results you saw after SDR? I went to meet Dr Park and he felt she was a candidate for SDR. We also had a second opinion who also felt she was excellent for SDR.
My daughter started walking at 22 months and but still has alot of balance coordination and stamina issues. Thanks!
hi,vanessa my son could stand but not jet walk,after the op he was weak ,but about six months later he started walking with a walker,we live in cape town ,south africa ,so we have a diffrent dr. here,but he also had to be the right candidate,before the op was done,just remember the results is not seen straight away and sometimes it can be frustrating ,fikidoll
Noah sounds very similar to your child. He started walking about the same time and had the same issues. We got an estim unit for home a few months after surgery, which really helped Noah to strengthen his muscles. He used it while doing exercises, which is supposed to be the most effective way. Since he no longer had to fight the tone, he could start doing things he couldn't do before, like stepping up and off of curbs, sitting up straighter, riding a tricycle, etc. He really has come a long way. They say the more you stick with the post-op therapy, the better results you'll get. We really stuck with it, and Noah got lots of great results. He still falls a lot, but that's probably because he's doing harder things and manuevering in more complex ways than before. He gets back up mucher easier than before surgery. He has much more endurance, too. Hope this helps.
Thanks for everyone's response. We have met with Dr Park and also another doctor for second opinion and we are now convinced this a good treatment for her spasticity. We will be doing the surgery in two weeks. If anyone has any advice for pre surgery, post surgery, etc anything please let us know!!
nwmom, you mentions a estim unit, can you give me any more information on this? Also what about getting a treadmill for her afterward?
Are you doing the pre-surgery exercises? Those help a lot, too. If you need to stay at a hotel, the Parkway Hotel is connected to the hospital through walkways and is very convenient. My son got a bladder infection after surgery and none of us--not even the nurses--detected it. Noah doesn't like to express his discomfort verbally; so that added to the confusion. Anyway, be on the lookout to catch that early if you see any symptoms.
An estim unit is an electrical stimulation device, best used with a remote control to stimulate the muscles as the wearer uses them. We used it on Noah 20 min. a day while he was walking or exercising. The insurance covered it as a post-op pain reducer (that's about the only reason they'll cover it for). We got it a couple months after surgery.
We live close to our place of therapy, and they let us come there to use their treadmill.
After Noah's surgery when it was time for him to get up and move about again, I took him up to the 8th floor garden in the hospital...it is beautiful. He was very interested in the big granite ball fountain and I helped him get out of his chair to move it. He was like a rag doll--so weak from having lost his tone and not used to using just his muscles. Be prepared for this! They start to recover quickly, esp. as you do the therapy with them. There are no grocery stores within close walking distance, but there is a drug store a few blocks away one street over. There is a small health food store about 8 blocks away. Best of luck to you! Keep us posted on how it goes!
I was happy to find out that most of the pre-surgery excercise we have already been doing with her the past year at least 3x a day. I am nervous about the post-surgery excercise. It is not written as clear and does not have pictures to follow. Are they the same exercises at the pre-surgery? During the stay at St Louis, did their therapist go over all the necessary excercises we need to do at home?
Did you get to choose which estim unit to purchase or the insurance dictate that?
Sorry for all the question I am so flustered with all my concerns, it is such a big surgery but I have to remind myself to keep focus on the big picture---my daughter will be more comfortable and this will benefit her!!
We were nervous, too--once you get there, everyone is so nice and professional, and they do so many unusually nice things for the patient and family that it really helps you to feel better.
As I remember, they gave us another post-surgery booklet while we were there which had pictures in it. The therapist did go over all the exercises in a post-surgery therapy session. I took my video camera which was helpful with some of the exercises. I also sent many emails asking for help and/or clarification and always had a quick and thorough response which was very helpful. Our PT at home was the one who suggested getting an estim and she dealt with the filing of the insurance and with the ordering, too.
Hope this helps.
By the way, the St. Louis Children's Hospital cafeteria was quite good and very inexpensive. I've never been so impressed with a hospital cafeteria before!
Best of luck to your daughter--we will be sending good thoughts your way.
We are back from Dr. Park! It was such a great hospital. Dr. Park came to visit everyday except Sunday. The staff was amazing!
We have been back since last Wednesday and I am amazed at how quickly Vanessa bounced back. She was in so much pain that she needed help rolling side to side on the hospital bed and now she is crawling around everywhere and has not needed any pain killers since we left St. Louis. She took 3-4 steps yesterday and now she is taking about 10 steps. But still a slow progress. I was wondering if you remember how long it took for your kid to go back to moving around walking instead of crawling. I feel so bad for her to craw around the house when she used to jolt all over the place! Also she fell 2-3 times and I always worry she would mess up the stitches. I know Dr Park said to make sure I keep her walking and walking and walking but I am so worry she is going to hurt herself.
Also do you remember what type of braces they recommended you and why?
They told us to order pattibobs and I was wondering if that was for pronation?
So glad everything went well!
I can't remember for sure how much he walked the first week he was home, but I THINK he walked around holding someone's hand a lot at first. He did take a few steps by himself during the therapy session in St. Louis. I think he used the wheelchair a lot when we went places where he had to walk a lot for 2-3 weeks.
St. Louis believes in getting you out of braces as soon as possible to strengthen muscles. They ordered pattibobs for Noah for that reason, to use for 2 hours a day for awhile. They also wanted him in SMO's. The therapists in my area; however, have a whole different philosophy on braces. They believe the smaller braces tire kids out too much if they're not ready for them and that it doesn't make sense for them to wear them all day to school and the like, because they have to work too hard. They also believed that Noah shouldn't wear the pattibobs because they didn't keep his foot from pronating as much as a brace does. They believe that the pronation will cause his knee to hurt as he gets older, which will move up into his hip and then his back. St. Louis believes if you do enough heel raises and knee exercises a day, you can improve the pronation and nearly eliminate the problem. I have gone along with the therapists here mostly, but they have conceded on some issues and tried some things that St. Louis wanted to try, like the SMO's. I wish we lived closer to St. Louis, because I really like their way of thinking better. I have had to speak up a lot and email St. Louis for advice a lot to try and get the best possible help for Noah. Therapy is like art...everybody has their own opinion, and some people think they have the lock on the right answers!
Anyway, good luck with everything. We've been amazed and pleased at how much more he can do, with his improved physical comfort level and also with how much better he feels overall (physically and mentally) since the surgery.
Thank you for all the great information! I am so happy you are here to answer some of my concerns as I dont want to keep calling Joan and being a pain!
You mentioned you had to speak up a lot to address the best possible help for Noah. I feel like I am going through the same thing. I would love to find a way to convince her therapist to do 60 minutes 4x a week, but she is still doing only 30 mins. I wish I can be strong and demand it, instead I am at home compensating by doing therapy with her for at least an extra 1 to 1 1/2 hour. I feel like all I think, sleep and eat is therapy and ways to get her to enjoy therapy!! I wish I can just enjoy having fun with her and not worry about knee heels, side walking, hamstring stretchs blah blah! I have taken off work and each day I think of all the places we can go to get her to do her exercise in a way she won't realize that is what I am trying to do. I hope all this will pay off and I will see some results and someday in the future worry "less" about her walking and stop alway slooking at her legs and how they move! Urgh!!!
You all are going through the toughest part of it now. Hang in there...it will get better! Do you think your therapist could get some of her coworkers who needed extra money to come to your home and do some moonlighting therapy? That's what we did for awhile. You could talk to her and see if she'd be willing to ask around (she may have to do it discreetly if they're not allowed to do that!).
We went to libraries, malls, buildings downtown, churches down the street, etc. to do therapy. And when we did it at home, I'd go to yard sales to get new things to interest him for his exercises. I pretended his legs were refrigerator doors and we'd open and close them to drop the food in for the abductor exercises.
Also, Joan may could talk to your therapist about getting the extra half hour if you're hesitant to do it. I had Joan talk with my therapist a couple of times.
My therapist said to look at it like you're just trying to give your child the best baseline of strength and support they can achieve (whatever that may turn out to be) in their formative years so that they can build upon that as they get older. That helped me a lot.
Hang in there--we're all rooting for you and Vanessa and your family!
Yeah it is rough now trying to make sure we are doing all the therapy for her. Did you notice walking, balance and coordination to be better almost immediately or did it evolve slowly thoughout the months? I watched her pre surgery and post surgery walking videos and really didn't notice too much difference yet. She is still so weak and walking clumsily yet it is softer than before. But when I stretch her it is so noticeable how lose she is now compare to previously.
Joan did tell me to convince my main therapist to do 1 hour. What is frustrating is that Joan said the insurance company approve the therapy but it is up to the main PT to take the money approved and do 30 minutes or 60 minutes. They are already paid for that "block" I have requested for the main PT to do 60 minutes but she keeps telling me that it is too tiring for a 2 1/2 year old to do 60 minutes. I know my daughter can do 60 minutes because she also gets PT from the Early Intervention state program some of the days and that PT has no problem getting her to work out for 60 minutes. I have tried on my own to have her walk/bike/exercise for 60 minutes and she is fine.
I have asked the main PT to do 60 minutes about 5-6 times and she keeps telling me it is too much so I hate to be a nag and keep asking her, yet I feel so frustrated she is not listening to the protocals of the PT's for Dr Park.
Can someone teach me to grow a spine and just get the PT to do as I say?!!
I'm not good at being assertive either. But you can just explain to her that she is fine with 60 minutes for you and for the EI therapist and that you want her just just try it for a few weeks to see how she does. You can tell her that you've invested a lot of time and sacrifice into getting this surgery done, and that following the follow-up program St. Louis provides is crucial to a good outcome for Vanessa. Maybe you could tell her you'd like to speak to her supervisor about it if she is not agreeable to your request.
Do you feel more comfortable using email to talk with her? Or phone?
Is there anyone in your family who could go with you for moral support?
Those are just some ideas...I know you will figure out what works best for you in working this thing out and that you'll get it worked out just fine.
I personally always felt better when I did assert myself for Noah than times when I wasn't assertive enough on certain issues.
Keep us posted on what happens!
Hi, thanks for thinking of us.
Well the insurance therapist is sometimes doing it for 45 minutes, but luckily my daugther still has Early Intervention and they do have PT come to help us for 60 minutes. So the two combined I think we should be okay.
I have also been taking her out and getting her to walk alot.
Tonight she woke up couple of times and I am wondering if she is overtired from all the activities. I hope I am not pushing her too much (but she is having fun and I dont make it hard for her) yet I wondering if it is enough sometimes?!
Because there is a YMCA nearby and they offer a 12-4pm program in the summer where they take the kids swimming, play in the playground, do arts and craft. I am wondering if that is too much for her little body if we join AND also do therapy. It is hard being a parent and knowing what is right for our kids!
It has been a month since we have been back. Her walking is definitely less spastic so less of the scissoring gait, but she is so weak that she still walks swaggering. I hope with time it gets better. Like the PT said, before the spasticity there was nothing to lessen it, now at least it is weakness and we can work with that by making her stronger.
Most of the time she still walks toe heel (fortunately it is still flat), unless I am holding her hand or remind her to walk slowly she will go heel toe.
How are you guys doing?
Originally Posted by nwmom
I was hoping you could give us an update on how you're all doing and on whether or not you were able to get the extra therapy time.