second rhizotomy??

[WorkinMom]

Hi Everyone,

Been missing for a while now. Just been in a funk I guess. Hope everyone is doing well.
Drew got his back braces a couple weeks ago and things have been so-so. Not the greatest but not that bad either. Went to the clinic yesterday and get this he only has a 18 degree curve?!!! Where did I get a 50? I swear it was written on the script. The differences in the xrays they took yesterday and the ones I had seen from the hospital - I would swear they are of different people. He did have his brace on yesterday but still the difference was majorly significant. So I am relieved about the scoliosis.
Now the major concern is increasing tone. We have an idea the brace holding him in a different position is increasing his lower extremety tone issues. His feet are an absolute painful blistered mess. And his left thigh is a hard knot of spasm that is painful to the touch. He can hardly wear his AFOs and even without the AFOs we are coming home from school with new blisters.
Yesterday the orthopedic surgeon suggested we discuss a second SDR with a neurosurgeon. Of course the neuro who did the first SDR and the baclofen pump implant is no longer on my acceptable list that I want cutting on Drew. Never ever ever again! (remember the overdosing and return to hospital - and shortly after original SDR clonus returned) So I am in the process of trying to discuss this with Dr Parks. I know it is supposedly a one time operation. The thought of weakening his spine even more is almost too much to even consider but something has to be done for his comfort. The ortho suggested increase in the baclofen but once I told her of how he leans (without the back brace) then she better understood my refusal.
We are also going to try and get a full powered wheelchair. We are going to be 2 years early in requesting one but ortho feels she can justify it with the breakdown of his feet. Drew's tone is so dynamic that even when he propels himself with the power assist wheels his tone kicks in and his legs and feet go into extention even his buttocks contract and his in popping up and down. Without this we are thinking possibly it could help the feet. Who knows.
Any advise on a 2nd SDR? Anyone ever heard of it? And what do you think of invading the spine for a 3rd!!! time?
Jennifer

[RathyKay]

(((Hugs))) This is out of my league. I'm glad to hear his scoliosis is sooo much better with the brace! At least that's off your list of worries. I'm sorry your list is getting longer, though. (((Hugs))) to you both.

[grace]

Glad you decided to rejoin us and not to stay away in frustration. So thrilled that Drew's back was not as bad as first expected. whew. I'm sure trying to keep the back straight is calling in a whole lot of lesser used muscles and the added work is making it harder on them. Personally, while I don't know your own situation, i'd wait for a bit before deciding whether or not Drew can improve this one to some extent on his own. I'm thinking I'd treat it like a growth spurt, you don't react during it when everything seems to be going downhill but when it is over and the body has had time to compensate but is not able to do more than what you see and still needs help so you go for external intervention. Drew's body is doing a lot of growing/stretching right now...what do you think?

anyway, hugs as always,

[Tracy Sheppard]

Jennifer, I am glad to hear that the brace is helping. I know nothing about the rhizotomy issue. Just wanted to send you some hugs and hope you find the answers you are looking for. Hugs to Drew

[Donna Thomson]

Hi Jennifer,
Oh, my heart sinks to hear you are having to contemplate another surgery. My advice would be to call up the rhizotomy centres around the US and Canada or email them and ask if anyone has had two. Ask your doctor to write a formal request to contact (they will contact you) other parents who have gone through two. At least maybe you will have some stories to hear.

Good luck and prayers, Donna

[lorilou]

Hi Jennifer -
I do not think that you can have a 2nd SDR surgery. I was really surprised to read that an ortho surgeon would even mention it.

Noah had his SDR in St Louis with Dr Park. Unless something has changed recently I know that Dr Park would never redo an SDR - whether or not he did the original surgery.

Are you sure that Drew is dealing with just spasticity? Does he have dystonia? SDR does not affect dystonia and in some cases people have thought it got worse after surgery (maybe because the spasticity is gone/reduced).

Noah's rehab doctors brings up the pump everytime we see her. At this point I always say "no". We've put him thru enough -- SDR and two ortho surgeries. Noah has a lot of dystonia which is tough to treat.

Noah had a manual wheelchair evaluation last week. He tried out Ti Lite chairs -- they are so nice. His manual chair is his backup chair since he uses his powerchair the majority of the time. The Ti Lite rep commented on how nice he sat in the chair until he tried to propel -- his legs then go straight out in front of him.

Sorry I don't have any real advice for you. But know that we're all here listening and you don't go thru any of this alone.

[WorkinMom]

Lori - I feel like an idiot asking this question but can you explain dystonia? The ortho knows the SDR is a one time surgery but I think she is at a loss as to what to do as well. He has just went down hill so quickly. I remember a couple years ago an orthotist was amazed how good Drew's feet looked and made a comment about someone really taking good care of his feet. I thought it was an odd comment cause I was like well I wash & dry and trim his toenails, big woop. Well now I know what he meant. His feet are pitiful.
The wheelchair vendor we use came Thursday and we had a lengthy discussion about life in general (he also has 2 special needs sons) and he said so many parents just don't realize what gravity does to these kids as they grow and age and that he thinks there needs to be a global chart of maturing with cp as they have with the typical child and their development. I commented that so many kids are different with cp conditions and he said he'd been doing wheelchair vending for over 15 years and sees cases like Drew's time and time again. It really worries me because this changes my whole visualzation/expectation of what I have always predicted Drew's future. The ortho said she was sure he has several years of growth still left in him. That between the ages of 16 and 21 male spines continue to grow.
Sorry I'm rambling now. Trying to keep my head above water here. ;)
Thanks for the responses ladies
Jennifer

[khfernandez]

Dystonia, unlike hypertonia, is usually positional. For instance, turning the head to the right causes the left arm to stiffen. Also, there can be facial grimacing, drooling, cramping.
Kim

[lorilou]

Noah's rehab doctor tells the residents that Noah is the "poster boy" for dystonia. She loves to bring them in and have them try to figure him out.

At rest Noah has pretty much zero tone. He has been known to have better range than his NDA triplet sister. (This however does change based on growth, etc.). But the very second he starts to do anything -- talk, eat, drive his wheelchair, etc...the tone kicks in.

Before Noah's SDR and ortho surgery his legs were very tight and he scissored horribly. But that has never returned - but we're left with pretty serious dystonia.

Dr Albright is supposed to be the "guru" of dystonia -- he's in Milwaukee I think. He's been doing studies trying to figure out the best treatment. I'd like to take Noah to see him someday.

Hope that helps...

[WorkinMom]

That fits Drew perfectly. I was always told it was called Dynamic tone- meaning it kicks in when in motion.
Thanks
Jennifer

[lorilou]

Dynamic tone = dystonia.

The problems is that not very many people understand or even recognize dystonia. And they sure don't now how to treat it in children.

Did Drew's pump help? Noah's rehab doctor thinks that it is very helpful with dystonia but I won't even consider it at this time. Maybe when he's done growing????

[WorkinMom]

Drew's pump did/does help but his underlying weakness in his trunk keeps us from increasing the dosage enough to really help his tone in the lower. Even though they say it doesn't effect the upper body and that it all depends on where the catheter is placed - it does make a difference in the upper body as well. I honestly and truely believe the pump is not such a good thing for kids like Drew (with the dynamic tone) When at rest he is very floppy and has almost normal range of motion in all aspects (other than painful knees) but once he moves - forget it - lower body is still stiff as ever. So I don't see how the rehab doc thinks it is good. Too much baclofen for when he is not in motion (which isn't alot anymore) We're now dealing with the scoliosis since pump implant (back braces 23 hours a day)
I totally agree - dynamic tone/dystonia is very difficult to treat and/or control.

Jennifer

[mumtosarahlou]

Sarah also has dystonia. It's not that noticable when she is lying down but put her on her feet and she becomes as crooked as a pretzel! At her recent ortho appt her ortho suggested the baclofen pump--i asked about possible scoliosis from it and he said it does not cause scoliosis and the kids who do get it were going to get it anyway. Then we met with the physiatrist(who works with him) and I told her what the ortho said. She disagreed and said it could bring on the scoliosis.
Anyway, just wanted to show the differing opinions of 2 docs who work together at Children's Hospital Boston.

[WorkinMom]

I'm glad the physiatrist was honest enough to differ with the ortho. No one will ever change my opinion on the pump bringing it on much quicker. Maybe not "cause" it per say but sure has an impact on it.
Jennifer

[mpalmer118]

Have any of your kids with dystonia tried a medication containing l-dopa? Rachel does not have CP but she does have dystonia. As everyone here knows Rachel has responded really well to sinemet, which is carb/levo.

Another mother whose son has cp started the medication the same time as Rachel. He was wheelchair bound and now is able to walk with just AFO's. He has CP and dopa responsive dystonia. It is not a cure for CP, but it may help the dystonia. You don't know unless you try.

[mumtosarahlou]

I will ask about it-thanks!!!!