sacrum removal physical therapy after...

lynneat

I had a castleman disease tumor. The disease gives tumors in the area cordoma tumors grow...sacrum area. I'm trying to find out what kind of Physical Therapy to do. What I'm doing doesn't help. I found a post on a chordoma site that said they had a contact for Johns Hopkins, where I had my surgery, where your PT person can contact them to find out what kind of therapy to do for this rare operation. I can't find the forum anylonger...am frustrated! and in pain! If PT will help with the muscle pain I want the right PT for this rare sugery. Muscles are tight/hard/PAINful. I can't stand but for about 10 minutes/day. I would appreciate any information you can give to me regarding this. My email is chordomasite@yahoo.com (I wanted a seperate address for forum/contact info so I don't accidently delete any emails that spam up my regular email. This is just too important. And if anyone knows what that forum/site is for chordoma is please rsvp. I hate to wake up because it means pain. So as soon as possible please respond. I know you all are in pain here and understand what I'm going through. I will so appreciate any information/help you care to pass on to me. Now I'm worried I won't be able to find THIS site again. I do take meds and my memory is bad. I wish the meds worked better. Constipation/pain meds and not enough pain meds...but if I can attack the SOURCE of the problem and get the correct PT it may help the pain. Thank you so much. Blessings to all here with this awful condition. Take care. Lynne