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Hi my name is Kyla I am 33 years old single mother of 1 boy 9 yrs old. I was treated for epilepsy since I was 14 months old and dianosed with CM 1 when I was 17 years old. I had my 1st surgery Sept. 14, 2001 and than experienced a spinal fluid leak. In had a 22nd opinion and went to Loyola University Hospital for my 22nd CM repair surgery on Dec. 28th 2001. I felt great for about 9 years aside from headaches every so often but nothing major. As of 2010 everything came back, migraines, back ackes between shoulder blades and my lower back, tingling and numbness in both hands and feet to where is lose feeling in my body and fall to the floor in excruciating pain. I now have scoliosis and my migraines are multiple times daily, back pains so bad the pain shoots down my legs even shoot up my side to my left or right side of my neck. Dizziness and nausea continuously, ringing in my beard and vision has become blurry like a glossy film over them at times. Days where I can hardly get out of bed without my son's help, I also have Torticollis now and just found out the Chiari has moved down to C7 and still NOTHING WAS DONE the DR's blame it on my CM. I also have a positive hemocromotosis yet my I have to go in for iron infusions every few months cuz my iron is ridiculously low. I just had an MRI on my back FINALLY after all these years and I found out I have SEVERE LUMBAR DDD (Deteriorating Disc Disease) I have yet to see the spine specialist and surgeon but my sister had the same surgery I did and she only had 1 surgery and is perfectly fine aside from migraines. I'm scared n lost and don't know what to expect. Does anyone else have anything like this?
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