Some good news!

[oops1990]

Hi all,

I thought it would be nice to share my good news with everyone, since we don't seem to see much of that on here. After 20 months of frequent visits with my NS, countless MRIs, 4 decompressions and a shunt placement in my thoracic spinal cord, my Chiari & Syringomyelia are finally responding to treatment and beginning to improve.

After my 1st and 2nd decompressions, the syrinx that had just been in the cervical region of my spinal cord grew larger and took up almost my entire spinal cord, leading to a lot of pain and leg weakness. This led my NS to a 3rd decompression and to place the shunt in my spinal cord to encourage CSF to flow. These procedures just made things even worse. I developed foot drop, my legs seemed useless as the weakness and pain increased and I began to have a lot of falls. At that time I also developed blood clots since I wasn't moving around a lot. One clot made it to a lung. Part of my lung died, I developed pneumonia and I realized that I was lucky to be alive. After over a month in the hospital for the blood clots I was allowed to go home, where I began my rehab journey. After 2 months of outpatient rehab I wasn't improving and still needed a walker to get around, couldn't go up any stairs, and could not walk for more than a few minutes. From there I transferred to an inpatient rehab facility where I worked with physical therapists for 3 hours a day, 5 days a week to learn to walk again. During those 2 months of inpatient rehab, I went from needing a walker, to needing canes, to needing nothing but my AFOs for foot drop to walk almost normally again. After all of my progress, I received some unfortunate news. The syrinx in my spinal cord was continuing to stretch my spinal cord, as well as grow upwards toward my brain stem. I needed a 4th brain surgery to halt the progress of the syrinx so I wouldn't develop worse symptoms. This 4th brain surgery just took place at the beginning of June 2014. My NS removed scar tissue left behind by the other surgeries and resected my cerebellar tonsils to make room in my head. Yesterday I had my follow up MRI and received the first piece of good news related to Chiari & Syringomyelia that I've had in almost 2 years.

My syrinx is beginning to shrink! It isn't stretching my spinal cord out as much, and there is the tiniest bit of room on either side of the syrinx that is allowing CSF to flow. I am officially free from the NS, MRIs and surgeries for the next 6 months until the NS checks on the progress of the syrinx again. Physically, I am feeling better than I have in what seems like forever. I still have occasional headaches, but come on... my head has been cut open 4 times, I can't expect too much. I still have some leg weakness too, but the syrinx is still very present in my spinal cord. But - I can walk a mile now if I want, I can climb several flights of stairs and I haven't had a fall in months! I know that my journey with Chiari will never be over, but I feel like I can finally view it in a positive light. I look forward to continue improving and getting stronger every day. As the syrinx continues to shrink, I will be able to find out what, if any, permanent damage has been done and I may get to a point where I don't need my AFOs to walk properly. In the meantime, I am so blessed and happy to finally have some good news, and nothing can take that away =)

[SarahY79]

Thank you for sharing your experience. It's a positive light at the end of a long tunnel for many of us who are at the beginning of the journey. God bless! You inspire me!

[selmaS]

  Fabulous news !!!!

Thanks for the update....and I encourage you to copy and paste this to a journal page on your profile and continue to add to it as it is great to have all your info in one place....and you can easily use it to give info to Drs as well.....

  So very happy for you <3