Why am I writing this blog?

I'm creating this blog as a way to keep family and friends updated on Suchitra's selective dorsal rhizotomy (SDR) surgery and rehabilitation.  Her surgery date is August 29, 2012 at Gillette Children's Specialty Healthcare in St. Paul, Minnesota.  We will be flying from Portland to Minneapolis/St. Paul on August 27. We plan to return on September 30, 2012.

Here is some background on SDR. It's a neurosurgery that is done to relieve symptoms of spastic diplegia, which is the type of cerebral palsy Suchitra has.  (Spastic refers to the muscle tightness or "tone" and diplegia refers to the fact that only her legs are affected, not her arms.)  Research over the past couple decades has shown SDR to be safe and effective.  In this surgery, an incision is made in the spinal cord through the back, and the nerves that cause spasticity are isolated and then cut.  There will be enough healthy nerves left to allow her muscles to function normally without the spasticity.  However, her muscles will be much weaker, and she will have to relearn all of her motor skills, including normal movement and daily tasks, during an intensive recovery period.  This is why we will have to stay at the hospital for four weeks after the surgery.

While there are several hospitals nationally that specialize in SDR, Gillette is one of the best, especially for their rehab program.  We traveled there at the end of June for an evaluation.  After examining Suchitra, a team of doctors including a neurosurgeon, an orthopedic surgeon, and a physiatrist told us that she would be an excellent candidate for the surgery.  We had a long discussion about the risks, benefits, and potential outcomes.  Obviously there are no guarantees with any medical procedure, but I feel like we're making the right choice with the best chance of improvement for Suchitra.  One thing that is kind of cool is that on Gillette's website and some others, you can see before-and-after videos of kids who have had SDR.  While the degree of improvement depends on how severely affected the child was before the surgery, for many kids the difference is quite noticeable.

While we are there, I'll be staying right in the hospital room with Suchitra and helping out during her recovery.  She shouldn't fall too far behind in school because Gillette has a teacher that works with the kids who are patients there.  Most of the time will be spent in physical and occupational therapy.  Gillette's approach is to start with the most basic motor skills, e.g. rolling over and sitting up, and then progressing to more complex skills as each is mastered.

Once we return home to Portland, Suchitra will have to do physical therapy five days a week for at least a month, then tapering down to three and two days per week afterward for probably a year.  This is a lot more physical therapy than we do now so it will definitely have a big impact on our lives.  The doctors also said that we will need to return in a year or so as she will very likely need orthopedic surgery to correct muscles and bones that have been pulled out of position by the spasticity.  If we did not do SDR, she would probably have to have multiple rounds of orthopedic surgery, possibly up to 15 surgeries.  So doing SDR now will avoid having to undergo a lot more surgery later on.

My impression is that the main benefits we should eventually see for her are a steadier, more normalized gait and less effort to take each step, so much better endurance.  At the evaluation, Gillette measured Suchitra's oxygen consumption level and found that she uses 3.8 times the amount of oxygen that a non-disabled person uses to walk.  This means that for her, walking is like taking the stairs two at a time would be for us.  After SDR, her oxygen consumption should go down 30% and after further orthopedic surgery, it could go down 50%.  The surgery will also help avoid increasing pain and decreasing function as she gets older.

I am optimistic that Suchitra will work hard with a good attitude as she does during her physical therapy sessions here at home.  She's very excited about the surgery and realizes it could make a big difference for her.

If anyone feels inclined to send mail, she would love it!  The address is:

Suchitra Goracke
Rehabilitation Unit
Gillette Children's Specialty Healthcare
200 University Ave. E.
St. Paul, MN  55101

If you have any questions, let me know and I'll do my best to answer them!  Thanks for reading and following our journey!