Hello All!
I am new to the group and would like to get to know you all better.
I am 28 years old, and have multiple health issues. I was diagnosed with MS 3 years ago, Arnold Chiari Malformation 2 years ago, Ankylosing Spondylitis 5 years ago along with Cervical Spondylosis, fused vertebra from the SI Joint to the lumbar spine, degenerative disc disease, osteoporosis and osteoarthritis, Occipital Neuropathy and Carpal Tunnel Syndrome. So, basically a myriad of horrible things.
I went un-diagnosed for over 10 years with neuro symptoms before finding a doctor that finally recognized Chiari. By the time I saw a neurosurgeon he told me it was a surprise that I hadn't already died from the heart problems the Chiari had caused as my blood pressure was well in to the 200's and I had chronic taccycardia that caused me to have a resting heart rate of 180-200 every day and caused severe angina and shortness of breath. I had a craniectomey and C1-C3 laminectomy with a fascia graft from my left leg. I had no CSF moving from spine to brain and developed hydrocephalus. Immediately after the surgery most of my heart problems got better. However, a lot of symptoms have never gone away. My neurologist liked to say "You'll never be normal, but I'm going to make you as close to normal as I can". He was a great surgeon but after having CM for so long it is not surprising a lot of symptoms didn't get better.
The migraines and status migraines are horrible, and the fused vertebra in my spine combined with my other issues- particularly the autoimmune issues- have caused severe chronic pain. I lost the ability to walk last year which has really put a strain on me and my family. Losing my job as a result of my disabilities made the strain worse. I am on some pretty serious pain medicines but have not achieved the level of relief I hoped for, and have had more surgeries than I can count, and more scheduled for next month but I have been putting of the back surgery I need because I have a six year old daughter and a seven year old son that I need to take care of. I don't have any support from friends or family besides my husband, but he has to work a lot to pay rent and attempt to afford my medications, so that aspect has been really difficult.
I suppose the bright side is that I have so much experience with various illnesses, medications, procedures, etc. that I can offer advice on various topics
I look forward to getting to know you all!
Blessed Be
ChiariGirl84