I am new to the group after desperately seeking some shared experience. This is my first post and I apologize for the length. was released a week ago from the EMU at Hopkins. Has anyone else experienced these? What a wild ride. I have a 7mm Chiari type 1 with lots of symptoms and many doctors thinking I have conversion disorder. I was first hospitized at Howard County General for strnage rocking when I walked, extreme balance issues, unilateral right side weakness, speech issues, memory disturbances, not responding to hot/cold temps on right leg, foot numbness with right foot not working and a constant headache on the top of my head. I wa s diagnosed with 2 herniated disks in my neck (c5/c6), a herniated disc in my mid and lower back, 2 pinched nerves, scoliosis, and degenerative disc disease. Also, due to an MRI, it was discovered that e had a 7mm Chiari type 1 malformation. The neurosurgeon immediately wanted to operate on the chiai malformation or the c5/c6 discs.
However, my neurologist introduced doubt and an opportunity opened up to be transferred to Hopkins in Baltimore for a second opinion. I was transferred to Hopkins for a second opinion becuase there was doubt that my Chiari coil be responsible for my awkward gait, unilateral right side weakness and speech issues. The doctors at Hopkins all agreed, after many more tests, another lumbar puncture, repeat MRIs, etc that because they couldn't find a cause ( and my chiari malformation was too small and there was enough room and not enought spinal cord compression or enpugh interrupted spinal cord fluid flow) that I must have conversion disorder. That was my first lovely interview by a psychologist.
Apparently, I passed his test because I was released with no diagnosis. I had 42 pt, ot, and speech therapy appts ( which the team at Hopkins decided would cure me). In fact my symptoms increased with new symptoms. I started having extreme temporal and back of the head headaches, eye pain, visual disturbances, extreme dizziness leading me to falls and necessary isolation, heightened sensory overload, worse balance issues, and periods of blanking out. Based uoon speech assessment, my executive planning and executive functuoning abilities are greatly affected with limited cognitive endurance which affects my physical abilities as well.
Then while at church I suffered my first "seizure". 911 was called and I was averaging 5 per day lasting anywhere from 10 minutes to 30 minutes with post dictal unresponsiveness from 10 mins to hours. I had repeat MRIs , another lumbar puncture, lots of blood work, and emgs lasting 2 hours while I seized the entire time. I was transferred to Hopkins EMU and was told that these are stressed related....in fact all of my symptoms are conversion disorder with the root cause being my need for attention. So, 5 psychiatrists later, all at Hopkins, asking me about very personal things, claimed that all of this is a need for attention and to ignore me. As part of my therapy, I suppose, I was released from the hospital without any staff assistance. Fortunately, I was at least in a wheelchair, which I requested because I didn't feel safe, because while I was waiting for my husband, I had another episode and was readmitted as a Jane Doe into the emergency room.
Now, We have returned to the original neurosurgeon, Dr Jamaris, who wanted to operate in the first place. He ordered another type of MRI post fossa/ Chiari CSF compressions and a discogram for my vertebrae and sspinal cord issues. We are waiting for him to get back to us. Since, I saw a doctor, Dr Lee at EETNA, wanting to rule out inner ear issues, that assured me this is all probably related to Chiari more than my discs, that I am having real symptoms, they are not in my head, and that I am not trying to seek attention or unable to handle stress. This has been a wild ride with lots of additional challenges because I have two small children. We have faith in the Lord that there will be resolution. We are relying upon Him for daily survival. I apologize for the length, but it does feel good to get it out.