Just wanted to give a heads up on doing physical therapy. My pcp suggested it because my stamina remained so bad...
So I started, and everything seemed to go all right at first...I'd get little twinges here and there, but thought that was from using my muscles. This was arm strengthening exercises, and they even had me starting to do modified push ups! Suddenly last week I started getting dizzy again, like everyday. Something I had not felt in quite a while...I left out the modified push ups and it still aggravated everything.
Just be sure that if you are doing PT, do nothing strenuous. My PT guys didn't know much about Chiari, and just tried what they thought would help. I think stretching, and balance stuff would be fine. I hope this passes, it's tough to take right when I was getting the go ahead to look for work!
It would help if we got more direction from our physicians as we go through the recovery phase. It like we do it on our own...the information is so lacking on what we are supposed to do to get back to life!
Ugh, I'm so sorry you had to go through that. I really think we should be advocates for ourselves - researching what we can and cannot do, understanding the anatomy behind our illness... If we don't, no one else will. Especially not people who don't deal with Chiari on a daily basis! I have a friend who is a yoga instructor and she was trying to get me to do several poses that involve moving the neck or bending over. No way!! I know she was just trying to help but I know my body would collapse trying to do those moves! So I just use the resistance bands my husband bought me and they seem to be helping keep my muscles strong and stretchy. :)
Oh my gosh, I totally agree. When I got diagnosed with Chiari (by an emergency room doc - confirmed by a NL later) my primary care doc had no idea what it was. I was the one who printed out a ton of material for her so she could take my new diagnosis into account. After that, she started researching it on her own and was shocked - if she had known about Chiari, she would have suggested an MRI years ago. There are so many rare diseases, it's hard for doctors to keep up with all of them. Still, if a doctor KNOWS his/her patient has a rare disease, it should be their job to make themselves familiar with it.
Emmaline said:
I did some looking up today trying to find just that...something that would have told me it wouldn't be a good idea. I could fine nothing on any of the major Chiari web sites on after care...no restrictions were listed after the traditional 2 week healing period.
The only place I found warnings were on forums! What is wrong with this picture? Our own doctors don't know what their doing to us. I'm so upset by this...if I've done any lasting damage, I'm not sure how I would handle it.