Discription, Dubious..Gone postal on our PT friends... I believe that says it perfect..I will never forget my 14 days of shear beat-up from my sessions after my two knee surgerys which we think my RSD began... At the time, silly me had faith in my orthopedic surgeon and went along with his recommendation... let me tell ya..I didn't sleep a wink the whole entire time worrying about the pain it caused with each daily session...

Bless you all..

kathy

Hmmm...my experience with PT was always that I ended PT at a level 9-10 on the pain scale...usually going in at a 7 or 8 (sometimes worse if I had just come from work). I started in pool therapy, which meant that the weight bearing was gradual and I had several weeks before I moved to using the bike and that was only 3 minutes to start with. It was weeks after that before I started using the treadmill and that started with only 4 minutes at a VERY slow pace.

But after every session I was given electronic stim. Initially they were giving me stim and ICE...very, very bad. After a couple of days I explained to the therapist that the ice made the pain worse so we switched to stim and heat instead. We did 15 minutes of stim and heat, and when I walked out the door I had a pain level of between 4 and 6. It only lasted for an hour or so (sometimes less) before the pain was back up to its normal level of 7 or 8. We also did an ultrasound at the beginning of every non-pool session and it seemed like that helped slightly...but I was never 100% convinced about that.

Essentially...I hated every second of PT but I honestly believe that I would not be where I am right now if I had not gone through it. But then again...the key for me was that the PT was gradual and while the therapist pushed...she never pushed too hard too fast. Even though I am not in PT anymore, I still continue to do ALL the PT exercises that I was given every day (minus the ones that require equiptment...those I do once a week at the park district fitness center). I am still in a lot of pain all the time (7-10)...but I am functioning and have gained a semblance of my life back. I don't think I would be where I am at now without the PT and pushing through the worst pain flares to reach the ultimate goal.

But everyone is different and I think they need to decide what is best for them. That's just my experience with PT.

PT program we are talking about... My reference is to the aggressive PT vs regular PT for everyday progress... The aggressive program is by far an intense, high demand program which last 3-4 hrs. a day and usually can only last for 14 days..not one day longer... Physcians use it with an RSD protocol in mind as resortation of movement, push and pull service by manual bullys... I can't walk well enough to walk a tread mill or use a bike.. they use both water but mostly land. Apples and oranges in the land of PT.... I tell ya... I, too have been other PT programs for other reasons prior to my RSD and I can tell you.. they not even comparible..

Sorry Catra121 for the confusion...

Have a good night....

Kathy

Thank you everyone for your PT stories. This is what I was looking for. I wanted to know what your experiences were. I have seen a couple of videos about intense PT programs for children with RSD. Of course, they show someone who had a complete remission after it. I attribute that partly to the fact that the videos are from the hospitals that do such treatment. I am going to try to get some info on how successful these types of treatments are.

Like I said in a previous post, we have worked hard to prevent her from having problems with range of motion. Since she has been on Neurontin and Elavil she has been able to function better. Before the Neurontin she could hardly walk even with a cane or crutches. I wonder if these intense therapies are more for regaining range of motion.

Thanks again for all of your information. If there is anything else that might help or anyone else that has a story that they would like to tell me, please continue. I will keep up with this thread.

Thanks again,

Tracy

A very highly regarded program for children with RSD is located in Waltham, MA - I believe it is called Boston Children's Hospital. The RSDSA newsletter ran an article about it last year, which will still be available on their website at RSDSA.org. There is another really good program for kids with RSD at CHOP, Children's Hospital of Pennsylvania, in Philly. I've also heard of parent's using the Mayo clinic, which I think is in Ohio.

Good luck to you and your child. I wish you the very best. XOXOX Sandy