Chiari Malformation Complex 1. Why are my symptoms worse?

Hi I had 2 CM repair surgeries in 2001 when I was 17 yrs old. My CM has progressed rapidly within the last few years especially this past 2 years. I now have tortilcollis, scoliosis, migraines Daily that last for days to weeks at a time. Half the time I can't get out of bed or I have fallen down the stairs due to my legs giving out. I'm a single mom of a 9 yr old boy who is extremely helpful with me thank God. They tried me on multiple pain, nerve and migraine meds but now I have severe LUMBAR DDD. But the Neuro surgeon refuses to do a 323rd surgery on my head and I'm still waiting to see if the spinal surgeon and specialist wants to do back surgery. I also had my 1st two vertibrae removed during surgery and the CM has progressed rapidly down to C7. Idk any other advise for u other than good luck and I was told once u have CM u never get rid of it even with surgery. The surgery just makes more space and relieves the pressure. Good luck hun. Keep positive.

Hi I had 2 CM repair surgeries in 2001 when I was 17 yrs old. My CM has progressed rapidly within the last few years especially this past 2 years. I now have tortilcollis, scoliosis, migraines Daily that last for days to weeks at a time. Half the time I can't get out of bed or I have fallen down the stairs due to my legs giving out. I'm a single mom of a 9 yr old boy who is extremely helpful with me thank God. They tried me on multiple pain, nerve and migraine meds but now I have severe LUMBAR DDD. But the Neuro surgeon refuses to do a 323rd surgery on my head and I'm still waiting to see if the spinal surgeon and specialist wants to do back surgery. I also had my 1st two vertibrae removed during surgery and the CM has progressed rapidly down to C7. Idk any other advise for u other than good luck and I was told once u have CM u never get rid of it even with surgery. The surgery just makes more space and relieves the pressure. Good luck hun. Keep positive.

Also my symptoms are migraines, numbness and tingling in my hands arms legs and feet, loss of balance, bad dizziness, severe pain in lower back and between shoulder blades all the time but rape silly when standing too long or laying or sitting in the wrong position too long. Nausea I blame on the migraines and pain. Very very very bad light sensitivity... I always wear my big huge bug looking sunglasses and my house is ALWAYS dark maybe a candle or 2. SWEEPING, DOING DISHES, SHAVING MY LEGS, OR JUST WASHING MY LEGS N FEET HURT.HALF THE TIME I CANT GET OUTTA BED WITHOUT MY 9YR OLD SON HELPING ME.my head in the back feels like a crawling sensation, and sharp electric shock feeling that spikes from my neck to behind my right eye and sometimes a crippling sharp pain from my right lower back hip area that shoots up to my great than to my right shoulder up to my right side of my neck.