A Sad AnswerFor those of you who know about my stange symptoms and those of you who don't.. *sigh* I think you all need to know the result. But before we get into the details lets catch everyones attention so they'll actually read this. I'm having brain surgey on December 10th.
For the past 6 months I haven't been able to feel half of my boy, teh whole left side. It feels like it's asleep, freezing/burni
ng, pins and needles,tingli
ng, itching, and an all around nussance - all the time. 24/7 it doesn't stop hurting, and I can't sleep. I have less strength in the left arm and leg and my muscles will orcasionally go dead. For 6 months (well, really a year since that is when weird things started happening) we have been going to the odctor to try and figure out what is going. I had a conductive nerve study and EMG done which came back normal. I had blood tests done including an ANA test which tests for auto imune diseses which came back extremely positive, though they don't think I have and auto imune disease. I went to a nerologist who siad she had no clue what was wrong with me and referred me for an MRI. I had my MRI done and later that day went to see a Rhematologist (to check out the autoimune thing) and by the time we got there she had the results of my MRI. That was on October 5th.
The Rhematologist told us that I have a Chari Malformation. I didn't actualluy find out what that meant until last friday when I got to see a Nerosurgeon. Basically its a malformation in my skull that I've had since birth. Parts of my brian, specifically my cerrebellum developed too small, my skull developed too small around it, and then my brain/cerebell
um grew and had no place to go, so where did it go - down and out of my skull and squishing my brainstem. The cerebral also cant flow properly and is being displaced into my spine. I have fluid from my brian in my spine and thats why I can't feel my body - I say it on the MRI pictures.
I saw another Nerosurgeon on Wednesday the 21st for a second opinion. He said the only treament is surgery, also that is is 100% sucessful, in that it may take more than one surgery but it will be fixed. He noticed that I've lost certain reflexs and that I've visibly lost muscle mass in my left hand and most likely other parts of my body as well. He said I could die in 10 yrs if it wasn't treated, and if it wasn't treated quickly I could lose more muscle mass and strength, become paralyzed, and lose the ability to swallow.
I... I don't know what to say anymore about this right now. i just thought people should know. As of right now I'm having surgery on Dec 10th but it may change. so, please keep me in your prayers :-)
A Sad AnswerFor those of you who know about my stange symptoms and those of you who don't.. *sigh* I think you all need to know the result. But before we get into the details lets catch everyones attention so they'll actually read this. I'm having brain surgey on December 10th.
For the past 6 months I haven't been able to feel half of my boy, teh whole left side. It feels like it's asleep, freezing/burni
ng, pins and needles,tingli
ng, itching, and an all around nussance - all the time. 24/7 it doesn't stop hurting, and I can't sleep. I have less strength in the left arm and leg and my muscles will orcasionally go dead. For 6 months (well, really a year since that is when weird things started happening) we have been going to the odctor to try and figure out what is going. I had a conductive nerve study and EMG done which came back normal. I had blood tests done including an ANA test which tests for auto imune diseses which came back extremely positive, though they don't think I have and auto imune disease. I went to a nerologist who siad she had no clue what was wrong with me and referred me for an MRI. I had my MRI done and later that day went to see a Rhematologist (to check out the autoimune thing) and by the time we got there she had the results of my MRI. That was on October 5th.
The Rhematologist told us that I have a Chari Malformation. I didn't actualluy find out what that meant until last friday when I got to see a Nerosurgeon. Basically its a malformation in my skull that I've had since birth. Parts of my brian, specifically my cerrebellum developed too small, my skull developed too small around it, and then my brain/cerebell
um grew and had no place to go, so where did it go - down and out of my skull and squishing my brainstem. The cerebral also cant flow properly and is being displaced into my spine. I have fluid from my brian in my spine and thats why I can't feel my body - I say it on the MRI pictures.
I saw another Nerosurgeon on Wednesday the 21st for a second opinion. He said the only treament is surgery, also that is is 100% sucessful, in that it may take more than one surgery but it will be fixed. He noticed that I've lost certain reflexs and that I've visibly lost muscle mass in my left hand and most likely other parts of my body as well. He said I could die in 10 yrs if it wasn't treated, and if it wasn't treated quickly I could lose more muscle mass and strength, become paralyzed, and lose the ability to swallow.
I... I don't know what to say anymore about this right now. i just thought people should know. As of right now I'm having surgery on Dec 10th but it may change. so, please keep me in your prayers :-)