After decompression 12/02/11, I did not have any type of physical therapy. I had muscle weakness before decompression and off and on after, but lately it seems to be worse. I also have hyperflexia of my reflexes. They are super jumpy! Lol. Anyway, I found that since surgery I feel like my joints are weak also. I am not sure how to explain it. Sorta like when I walk, my knees feel like they are barely being held together. I am having a rough time tonight with thinking straight, so please bare with me. This past week I have had a strange sensation in both of my shoulders. It feels like the muscle isn't going to hold them in place much longer. Like it could dislocate at any given moment. So, this evening I went opened my bedroom window and it was like I had lifted 200 lbs. The pain started immediately and I am still having muscle spasms in my shoulder, down my arm and into my hand. I know that not everything is Chiari related, I am just curious if any of you have experienced this amount of weakness. It is crazy! I hate to call my PCP, I see her at the end of the month and I am going to be sure to talk to her about it. I am going to request physical therapy also. I need help getting my muscles back!
I know some people are diagnosed with Ehlers-Danlos also. I don't think that is what is going on in my case. I am just curious how many other Chiarians on here have that dx too.
I have a hard time with weakness in my arms and legs but nothing like you are describing. They often feel like jelly but the muscles are tight and hard as wood. Do you have any muscle relaxers for the spasms? Physical therapy might help you just have to be careful not to do anything that puts strain on your neck. It wouldn't hurt to get tested for ED to rule it out if your insurence would cover it. I hope you start to feel better.
I do have muscle weakness however it is on one side. I often get muscle spasms in the arms and back. I finally said some to my worthless neurlolgist yesterday. Whom thinks that all I've had is migraines and none of my headaches and quirks had anything to do with Chiari, now and before the surgery.
I was surprised that he took concern to this and he did the squeeze my fingers test. NOW he wants a mri. He says a pinched nerve in the neck pay be causing this. BUT like I said...he doesn't believe in Chairi. (I just realized this yesterday and he is fired, lol),
Glad to hear you fired him! I know the feeling, like most of us on here. It makes no sense to me why they don't consider it an issue. I'd love for all of us to walk into his office and say...OK, if it is not Chiari that we all have...What is it? Lol. I'd love to see the look on his face.
Jen Heller said:
I do have muscle weakness however it is on one side. I often get muscle spasms in the arms and back. I finally said some to my worthless neurlolgist yesterday. Whom thinks that all I've had is migraines and none of my headaches and quirks had anything to do with Chiari, now and before the surgery.
I was surprised that he took concern to this and he did the squeeze my fingers test. NOW he wants a mri. He says a pinched nerve in the neck pay be causing this. BUT like I said...he doesn't believe in Chairi. (I just realized this yesterday and he is fired, lol),
Thanks for the replies. I have my appt with the new NS and a flow study (FINALLY) on the 22nd and then I see my PCP on the 23rd. I am going to mention ED to both and see what they think. I am leaning more towards it being weak in general, but I'd like their opinions. It's just weird for me to be like this. BC (before Chiari) I was very strong and I would love to regain at least some of that strength. Hopefully, my PCP will schedule PT. I think it would definitely help some. Hope everyone is doing well today :) I actually am having a good day! After about a month of headaches every single day...I woke up without one today! It is almost unbelievable. Lol, so I am trying to get some things done before it decides to hit me.