confused about new findings

[mommaof2aspies]

Hi.. So today I went to see a physical therapist bc in the last few weeks my muscles have started to become very tight and also hard for me to walk or stand up straight. Also started having spasms on the left side of my head I was diagnosed with chiari 8 yrs ago & scoliosis 16 yrs ago and seizures 3 yrs ago so needless to say my health has slowly deterated since since I was 18.  
Anyways at physical therapy today my therapist was shocked by what he found he said places that was was being affected don't affect women and when he put pressure on one spot on my lower back my whole had a tingling sensation and went numb. So he stopped with that and also my left side where all my pain is daily but when he was on me I has no sensation not even on the bottom of my foot. Help does anyone know what any of this may or may not mean?

[huskys2]

I understand it can hard to find a Dr But always make sure that you see a Dr that has been  working with Chiari they are the only ones that can help you.  I know it makes it even harder when you put the medicaid in there but do a lot of research. Above all you have to be advocate for yourself. I know before I had my surgery it was so hard to get anybody to listen to me and understand how much pain I had even just laughing my disorder had taken over my life. I am just know starting to get it back. I still have migrains like today, but still gtreatfull that is all I pray that I dont have to have any more surgery but I would if I had to as long as I could have same Dr.

[selmaS]

  U may want to consider the clinical trials....here is a link to them....http://www.ninds.nih.gov/disorders/chiari/chiari.htm

Check it out.....the only way I know u can get help out of state would be to appeal ur case to ur  ins to allow u to go outside and they cover u......it is worth trying,.

[mommaof2aspies]

To answer your question I have never had surgery and it was never suggested until about 2 yrs ago when I was rushed to the hospital from work and an ER was told I had Chiari. In my area not many doctors know of this and the ones who do don't take medicaid. So I've be stuck. Ive researched and I've explained till I'm blue in the face to so many people what this is and everyone just stares. Lol But I'm at a point where I'm getting worse and no use to my family and I have 2 children who are special needs kids and they need me.

[selmaS]

  Hi...can u refresh my chiari brain did u have surgery for ur chiari?

When was ur last MRI? of the brain, cervical spine, thoracic spine, lumbar spine?

Since u were dx'd with chiari have u been monitored by a chiari specialist?

Compression of the brain stem can affect nerves that will allow us to feel in different areas of our body or not feel as the case may be...and depending how  long a nerve is pinched will depend if it comes back....so u need to have this addressed.

    "selma"

[Rylanesmom]

I am very tight as well and can not walk most mornings until meds kick in.  I hope surgery will improve this.