arm coming down post Capsulodesis

[Jodi]

My daughter Bailey had the Capsulodesis 11/26. She has been out of the brace for 4 weeks. We have seen some great results. She now has some supination. She can reach up almost straight up in the air (could only go a little above her soulder before 110 degrees). She can reach out like how much do you love me(almost all the way couldn't do this hardly at all).

But.... New question:
She still holds her arm out. She won't touch the side of her body with it. Also she can extend her arm out straight But her elbow is very tight when she tries to bend it. She cannot bend it all the way. She now has to use her other hand to help her bpi hand touch her nose. She could do this before with just her bpi hand.

What are others experiences????? Will this elbpw bending get better and how long did it take for the arm to come down.
Thanks Jodi

[francine]

Hi Jodi,

I asked Dr. Nath a similar question and he said that for Maia it would be several or more months.

However - I'm so excited to hear about all of Bailey's new accomplishments/movements. It gives me hope for Maia.

Tell Bailey we are so proud of her!!

-francine

[Joann in PA]

Jodi, We have a similar experience. Our therapist was just commenting today that it almost seems like the front of his capsular is too tight which would make sense if the back was too loose. From all the internal rotation going on it would make sense that the front might need some stretching...however she was going to put a call into TCH since we dont want to touch the joint that they just worked on without their ok!

[christy]

Katie is a few weeks ahead of you and she still doesn't bring her arm straight down. In fact she keeps it in splinted position most of the time unless she is running or playing with something. But just sitting around or whatever she keeps it at 90/90.

She was beding her elbow well at first but it seems that she has developed a problem with the bicep tendon and is having pain and progress of elbow bending is slowing way down.

Dr. Nath told us in general weakness and stiffness could be expected for some time post caps splint removal but he did not specify time. (Katie's was her wrist that suffered the most from weakness) I know that he expects a vidoe eval at 18 weeks post surgery so he must expect to see something by then, I would think.

Our video is in about two weeks so I will let you know what he says.

[Jodi]

Thank you for your replies! I forgot to mention that she was splinted straight out to the side. Dr. Nath was worried about her bicept contracture but wanted to give it more time. Her therapist thinks that she is having difficulty bending her elbow because her tricepts seem to have shortened.
About the over the head thing Dr Nath told us that the capsulodesis would VERY LIKELY help with this. He explained that her Humerous had slipped down and that this was preventing her from being able to lift it any higher. We could lift it straight up. She just couldn't do it actively. He said it was really not a dislocation because her socket had not formed right which he said is the way it is for erbs kids. He explained how the socket is flat when a baby is born and that their movement is what creates the socket.
Again thanks Jodi

[christy]

Katie doesn't go "straight up" she goes goes up and out to the side. She doesn't seem to be going much higher than before the sugery but then again it is still early. BUT she never did the out to the side before--like I love you thiiiiiiis much or like an airplane so that is a great thing for her. If she hold on to something she can swing her arm behind her head though..it sorta looks more like she doesn't have the strength to go up high yet alone as range is okay.

Did Dr. Nath or Shenaq splint her to the side? Katie's is like Maia's--out to the side at 90 and bent at the elbow at 90, which we are warming and taking out straight for the last couple of weeks.

Also he told us that for katie the elbow thing was due to the tricep weakness and the biceps overpowering. Sheesh--first we had no biceps for over a year, she has mod and has the tricep released because it is too tight and now the bicep is too tight. AHHHHHHHHHHHH

thanks, that felt pretty good.

[TNT1999]

Hi, Jodi. Nicole had the Caps 2 wks after Bailey. It's wonderful to read about all the great results that Bailey has already gotten. Hopefully, we'll get the same results too in time. Nicole doesn't bring her arm all the way down to her side yet either. She used to hold her arm by her side most of the time prior to the Mod Quad last March. I don't think she'd really even held it down by her side again in the period b/w the MQ and Caps. It just looks a little different now b/c she holds her hand in neutral instead of pronated.

Nicole's elbow-bending abilities are pretty much where they were pre-op. The only difference we've noticed is that she's starting to use her arm bent a little more functionally than she did prior to the Caps. For example, whenever Nicole used her L arm/hand to assist with a 2-handed task, she usually held her arm locked in a straight position. Shortly before the Caps, she just started to occasionally keep her L elbow bent while using the L arm/hand as an assist. Now, she seems to be assisting in this manner (elbow bent) a little more -- which is good b/c it's more functional than keeping your elbow locked. I hope this makes sense. I guess I'm not too good at explaining things like that.

Thanks for sharing the good news and I hope our girls continue to progress well. Take care. -Tina )

[TNT1999]

Hi, Jennifer. It's still too early for us to see an increase in range overhead b/c Nicole's arm definitely has some temp. weakness. She does seem to be using her back less for compensating now than she did pre-Caps though, so there's a plus.

I wanted to tell you though that a dislocation isn't always seen in an xray. I don't want to worry you, but you might need to have an MRI done in order to more conclusively rule out a dislocation. There's also another test called a CT Scan which is similar. Peyton might be too young for that test still though depending on what the dr. says. I know that Dr. Waters wrote up a paper and recommended the MRI for under 5 years and the CT Scan for 5+. I haven't seen anything written up by TCH yet on the subject though. I hope this helps. BTW, Nicole's MRI indicated a subluxation / partial dislocation which agreed with Dr. Nath's physical exam. -Tina

[Jodi]

Yes it was Dr. Nath that had her splinted staight out to the side. He didn't want her contracture to get any worse. And he wanted to give it more time to improve. He is trying to avoid the bicep lengthing. She also had her pec released again. She had a total pec release last year when she had the Mod Quad but some fibers had grown back together. Dr. Nath said that he has only seen this a handful of times. I don't know if this influenced the decision about the splint.
Thanks for the replies!!!
Jodi