Hello all,
I was diagnosed with CM1 and syringomyelia in November of 2012. Had a decompression in December 2012, another with separation of cerebellar tonsils in June 2013, and yet another in August of 2013, when a shunt was placed in my thoracic spinal cord. Through all of this my syrinx just doesn't seem to be responding. The last surgery left me extremely weak, and the syrinx caused bilateral foot drop. I also developed blood clots in my right lung and leg as a result from not being able to move well. I used a walker for 4 months, then 2 canes for about 2 months and am just now able to walk short distances with no assistance - but must wear an AFO on both ankles and use canes when going up or down stairs. I've had about 3.5 months of physical therapy total since August, and just when I start to get stronger I get bad news from my NS. The syrinx is now headed towards my brain stem, so my NS wants to do another surgery ASAP to remove tissue around the brain stem, so my breathing and swallowing don't become affected.
Has anyone else had this much trouble, or does my body just hate me? My surgeon seems to be following all of the correct procedures to get this syrinx to shrink down, but nothing is working. I'm so reluctant to have yet another surgery, but don't want to take any chances with my breathing and swallowing. I'm seeing a hematologist next month to see if I'm still at risk for blood clots, and as soon as they say it's clear, I'll be scheduled for surgery. If anyone has had a similar experience, I would love to hear about it.
Thanks!