Jan 22, 2013

On Wednesday the 30th, my pain dr. will be performing a bilateral lumbar sympathetic block on me. 🙂  This will be the first time in his career he’s ever done one for both feet, so it will be two procedures back to back.  He’ll block the sympathetic nerves on the left side of my spine, then on the right.  I haven’t had an LSB since April of 2011…since having the flu, though, my feet and hands aren’t doing well, so he wants to do a block with ketamine and clonidine to calm down the CRPS pain in my feet.

Guess what?  

Lord willing, I’ll be heading to Cincinnati, Ohio soon!!  Maybe even as early as next month! 😉  This past Friday, I talked a lot with my pain dr. about what EDS clinic to go to, and he highly praises Cincinnati Children’s Hospital which is one of the top three children’s hospitals in the nation.  My neurologist thinks it’s now best for me to go out of state and see an EDS specialists since Ehlers-Danlos Syndrome is so rare.  She’s been reading papers and papers about the neurological manifestations of EDS which could very well be what’s causing my leg weakness, headaches, and eyelid droop.  If/when I head to Cincy, my pain dr. wants me to also go to CCHMC’s pain clinic.  And, I hope I can also get help for POTS.  So I have no idea yet how long I’ll be there!

But this will without a doubt be a great and exciting adventure! :o)  And I look forward to finally getting an answer for all these symptoms!

Post written byKerissa

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