Can someone help me because my doctors can't!
 

Hey there!

I've never posted any threads before but I am looking for some information on my conditions. (i posted this same thing in the newcomers place but I figured this would be a better place to post it)

First of all, I have just been disgnosed with Chiari Malformation type I. I've done a bunch of research so I have a good idea of whats going on but now it looks like surgery might be the only option and thats what makes me nervous. I have an 11mm protrousion as far as my chiari goes and my syrnix went from 8mm long and 2mm wide to 2cm long by 3mm wide in 5 months. I have a neurologist appointment to find out exactly what this means in a month but the only information regarding an average central canal said that on average it is 13mm wide. HOWEVER it also says that if fluid fills this (where the syrnix is) that it can cause damage or even destroy the nerves that are in there. ACK! According to my doctor, it doesn't matter if it goes up and down the spine, as long as it doesn't widen but that contradicts the research I've done. Anyone out there with information about this?

The second thing I have a question about it that during my last MRI I found out that i have developed a kink in my brain stem. I can't seem to find out what times means or what problems this can cause. The only information I can find was on ONE source regarding a brain stem kink and it say that it can be potentially fatal if not corrected. IS THIS RIGHT?! All my doctor said was "ha, you have a kinky brain stem. Thats funny!" And yes, I am serious! These are the kind of doctors I have to work with here! HELP ME PLEASE!

So, I was wondering if anyone out there has any information about this they can give me. My doctor has told me that I can't do push-ups, sit-ups, run, jump, squat, lift more than 20 lbs or be on my feet for more than 30 minutes. I was also was wondering are these just precautions or can these things really make my condition worse. I am in the military so I figured maybe they were just over reacting but if anyone has any information regarding anything I would really appriciate it! Or even if someone has a similar experiance they would like to share, ANY INFORMATION AT ALL IS WELOME PLEASE!!! I want to be able to get this taken care of and if all I have access to is the doctors they have been giving me, I have a feeling it will be a LONG time before things get fixed. Thanks for your help!!!

Response
 

This is my first time on this site too. I was also diagnosed with a Chiari Malformation type 1 and syringomyelia. My syringomyelia is big...from the base of my skull to the bottom of my shoulder blades.

I have no idea as to whether it matters if the syrinx goes up or down or side to side. I just know it's not really ideal to have one. Let me say this to you, though, the military wouldn't take me because they found out I had this.

Also, I have had the surgery that you were talking about. It's not as scary as it seems. It hurts like heck, though and will put you down for a few days, depending on your pain tolerance. I don't know what kind of symptoms you have been having, but I had some pretty severe ones that the surgery really helped. They aren't GONE, but they are significantly better. Have the surgery done as soon as you can, because it will start helping that much faster.

Don't know about the kinky brain stem thing. Sorry your doctor doesn't have much compassion as far as his joke telling goes.

My doctor didn't give me restrictions except to be careful with blows to the head and neck. Other than that, I wasn't given any restrictions, so I don't know about that. Get a second opinion.

And there is no "cure". They can't exactly move your brain, so you're always going to have this. But they can relieve symptoms and ultimately help the issue. The surgery was great for me...I have an awesome scar and a better life since I had it done.

If you have other questions I might be able to answer, let me know.

Good luck and God bless.

I have never heard of a brain stem kink. However do have chiari. I had to do a lot of research on my own to get it all figured out. On my MRI I found "basilar invagination". This is when the top vertebra move up and press on the brain stem. It can be fatal. Try looking at your MRI again and see if you find that on it.
If you do you might want to research it further since I really didn't give you a great description.
Kim