Gait analysis clinic

"This is not as fun as it looks."

Earlier this week Alex went to Mayo for a gait analysis clinic. It was a LONG day. "LOTS of appointments," he kept saying.

The big one was the actual gait lab, which involved four adults (not including me) working to make Alex the bionic boy for a few minutes. After taking lots of measurements where he tried to stretch, extend, and bend as far as he could, they began attaching microphones to his legs and little silver balls all over his body, but especially his legs. Cords were attached to the microphones, and when he moved a leg, the computer registered the strength of the movement in a variety of muscles. By the time has was all "hooked up," they picked him up and asked him to walk (with support on each side). He would walk two second, then one of the silver balls would pop off (because he is scissoring so badly all this electronic gear is getting bumped). They would redo, set him up to walk, and we'd get two-four seconds, and boom--stop, lost a ball, or lost the signal on this microphone, etc.. I honestly thought it was a bit touch and go, because Alex was getting tired, and they were having a hard time getting the readings they needed. In the end, they said they didn't get everything they wanted, but they got what they needed. Then they took bionic gear off Alex, and asked him to walk (with one person support) for videotape. He did better on that. So, two hours after we started there, we were off....

Reattaching electrogear in the walking....

After lunch, we went to "Mayo 16 East" for appointments with the social worker, his PM&R doctor, and an assessing PT. Oh, and a pelvic xray. The xray was short, but the appointments were all an hour long. Alex tends to be very good at these appts, but he was really flaming out by the end of this day.

Anyway, our PM&R doctor spoke to us more about the selective dorsal rhizotomy, and if I get anything wrong here, blame me, not her. The way it is done at Mayo is that these surgeries occur on Fridays, and total going into surgery and back in recovery time is about 4-5 hours. The surgery involves going into the spine and isolating nerves that send messages to legs. They want to cut the nervelets that send the spastic messages. They also cur sensory nerves, not motor (?) nerves. They test each nervelet as they do this. They do not cut more than 70% of the nervelets--and in general, as few as they can. But even if an area has 100% spasticity, they only cut 70%. After that point, it is very hard for a person to recover strength. You can read about selective dorsal rhizotomy in great detail at the St. Louis Children's Hospital -- pictures and everything.

She said he would initially seem much worse--kids who have this done are very "floppy." The initial recovery is to mend the spine, but she said they do light physical therapy the day after surgery (very light). And epidural is helping a lot Saturday and Sunday. Monday, barring complications, we go into a 3 HOURS OF REHAB routine 5 days a week for two weeks. Weekends are off. Then we get busted loose and we continue 5 days a week PT at home through Winona rehab services...although 45 minute sessions then. She said the daily PT (except weekends) is to be expected for the first three months, and the full effect of the rhizotomy would not be seen for a year.

In terms of surgery recovery, this is shorter than the rhizotomy that is done at Gillette (6 week in hospital recovery). She explained why and the pros and cons of each procedure, and I could see a great debate among medical professionals about which to do (she explained them very objectively, I must say). We asked if she was confident with the results she sees at Mayo, and she said absolutely.

They have not decided to do this yet. March 20, the doctors there meet to discuss whether he is a candidate for the procedure. (Basically, if he is too dystonic--that is, he has too much mixed tone--this will not help and will make things worse.) The assessing PT was friendly but concerned that he has very low tone in his trunk. She volunteered that she was seeing him at the end of a long day, never a good time to make assessments, and said she would check the video that the gait lab produced. We also talked about how this has been an issue since we adopted him, but despite appearances, he has made real improvements. So on March 20, the PM&R doctor said she would call us and let us know what the medical staff decided. And then would ask us whether we wanted to proceed. If we say yes, we get to visit Mayo A LOT in the next few weeks for pre-op procedures and another MRI. Surgery would be on a Friday in May; we would hope for May 2, but we are not guaranteed that date, as these things are difficult to schedule. After the surgery, one of us will stay with Alex in Rochester for 2.5 weeks.

They are all talking like it will be worth it in the long run. The advantages of this surgery for Alex is that it will help prevent (more) muscle contractures, decrease spasticity pain, and give him a better shot at walking well in a walker (when Jerry raised walking with crutches/canes, she said she didn't really see that in his future, which doesn't surprise me). And so, we wait. We're depending on the doctors here to make a good decision about whether this works for Alex or not. If he is not a candidate, we're back to Botox injections and maybe a baclofen pump (a move they and we are not thrilled about perusing).

If you want to see more of the gait lab, see the video below.
--Susan

Medical updates

Hi everyone, Susan here.

We wanted to update people on a number of medical realities for Alex. We decided mid-summer to switch Alex's care from Gillette to the Mayo Clinic. Alex's PM&R doctor was leaving Gillette, we were burned a few too many times by their bureaucracy, and the length of the trip was wearing us out. We investigated Mayo with some caution, because even though Mayo has a deserved international reputation for excellence, that doesn't mean they are the best at everything (shh, don't tell them :-) ). We were bracing to stick it out with Gillette if it was better for Alex. But we needed to explore Mayo as a possibility.

Well, short version is we're really pleased. We were set up with a neurologist, Dr. Bodensteiner, and he has referred us to other physicians within Mayo. Appointments were set up very quickly, and they have a tentative plan for Alex going forward.

 1. First, Alex had an MRI...something that would have been in his future soon at Gillette as well. The idea was to look at the brain damage (CP assumes that) and try to measure his possibilities for improvement. He has significant brain damage in the area that controls mobility, and he said that's not surprising, because that part of the brain is developing at 30-34 weeks gestation and Alex has born at 31 weeks. It points to some kind of traumatic premature birth and a lack of oxygen and/or blood flow for a time. The mild surprise was that Alex has no cognitive brain damage, at least none visible through an MRI. As the doctor said, that is very encouraging for his future development. The other surprise was that Alex has some brain damage in an area called the pons...which controls movements of the mouth (speaking, chewing, swallowing, etc.). He said it was consistent with being severely dehydrated and then too quickly rehydrated after birth. It's an after birth sort of injury, not related to CP. It doesn't seem to effect him much if at all, which is good.

2. The Mayo PM&R team want to move Alex toward a possible rhizotomy, probably in June 2014. They are not sure he is a candidate for it, but they think it is the best possible way to address his spasticity issues, since the Phenol and botox are not having the effects any of the docs (at Mayo or Gillette) would like. He's also on Baclofen now, and its questionable how much of an impact it is making. Everyone there is resisting the idea of a Baclofen pump, which is fine by me. But he needs to go through a few assessments before the decision to do the rhizotomy is cast in stone. Basically, they want to see that he isn't too dystonic, because the surgery doesn't address that.

The way I understand it, the surgery isolates the nerves that deliver the faulty brain message to go spastic in certain places, and those nerves are cut. It's all day major surgery, and the rehab time at Mayo is three week in hospital/rehab center. You basically relearn everything from the waist down. You can see it isn't something done lightly. But beyond Alex not making progress walking, the spasticity is such that it could really harm his hips--he already has some dysplasia from the spasticity.

Also, I'm no expert, but I have heard there is a window for this surgery, and Alex is in it now. So while it would be great to delay this until he is considerably older, that won't work.

We're very happy with the way Mayo is listening to us but also taking initiative and offering a plan and how to get there. We always liked and appreciated the doctors at Gillette, but everything has been so much easier to get in place here at Mayo...and we've been very impressed with the doctors here too.

Did I mention our PM&R doctor adopted a child from Russia? :)

So: sometime in the next 4-6 weeks Alex will get Phenol and Botox again to do a gait analysis with his tone "quieted down," to see if he is a candidate for a rhizotomy. The decision will be made after a big pow wow of doctors across disciplines examine Alex (a spasticity clinic).

A lot of serious things going on, but all mixed with hope.