Thursday, May 19, 2011

SDR in our future?

Ben had his 3-month botox follow-up with his physiatrist today. We've done botox twice now (mainly in his hamstrings). Botox has pretty much immediate effect for him, but unfortunately in tthe 2 times we've done it, the effects have only lasted about 4-6 weeks...nowhere near the 90 days we'd like to see.

So...Ben was nice and tight again today when she saw him. I, of course, was not surprised as we've been dealing with his tightness since about early April.

I WAS surprised by the discussion we ended up having. You see, Ben's physiatrist is extremely conservative. We've known this since the get-go and had planned to see some other experts early in 2012 to get additional opinions on what the best course of action would be for Ben. Basically, there are 2 options: continue rounds of botox followed by serial casting in an effort to delay any surgery for as long as possible OR do some sort of surgery now (like a selective dorsal rhizotomy) due to his extreme tightness., she actually stated that Ben is an excellent candidate for an SDR. She is going to refer him to another team at a children's hospital to see what their opinion is, but she's really thinking that an SDR would be a great option for Ben.

I couldn't believe it. I think my husband and I are a bit on the aggressive-side and to hear these words from a CONSERVATIVE doctor pretty much convinced me that an SDR is in Ben's future....likely in January 2012.

I am scared-to-death and excited-beyond-measure all at the same time tonight. I feel like we've just been spinning our wheels for the last year and now I feel like maybe there's a light at the end our tunnel.

Let the research begin!

(For information on Selective Dorsal Rhizotomies, check out this page from Gillette Children's Hospital.)


  1. Amazing, exciting, and terrifying all at once! I can't wait to hear how this progresses!

  2. I agree with your first commenter - exciting and terrifying all at once!! This surgery scares me and yet the potential relief it brings is so amazing . . . and by the way, I have a friend, an adult with Type I diatbetes and a lot of crazy health issues that follow, who just had SDR to deal with a pain issue and I think she is really pleased with the results. I'll check with her and follow up with you. So how are the canes these days?

  3. Hopeful and scary at the same time. By the way we are ordering the Zippie Zone. We tested the Areo Z and decided the Zippie was best.

  4. Cary, I just posted your paintings on my blog, there is a lot of glare because they are still very wet. Please let me know if you notice anything obviously wrong,I did paint them fairly quickly so you could have them on time! Thank you again, I soo enjoy painting your little guys. Though we never officially met, I feel as though I know them. hahah you are twice blessed!

  5. How exciting and scary. Will be praying for you all.