secondary surgery experience to share (long)

[Lisa D]

I've been gratefully lurking for the past 6-8 months, not contributing much, but asborbing A LOT as I struggled to make some important surgery decisions...and have baby #2 during the whole process. I'm in a good place now and thought I'd share some highlights of our surgery experience since I took so much from everyone else's experience.

When my daughter was 15 months I received my first Outreach magazine and I realized that the injury would not spontaneously recover as I had been told and desperately wanted to believe. We had been doing PT since week 3 and OT since 14 months. It was the first time my eyes had been opened up to the long-term consequences and I was SCARED. My daughter was continuing to gain ROM at a steady pace and her therapists weren't concerned about the pace, so neither was I.

At 18 months I sent a video to TCH and got the next shock of my life when they recommended the Mod Quad. (She did not need primary, according to Dr. Hentz whom we had seen at 3.5 months). Not only did they recommend the mod quad, but Lisa D. recommended a hands on evaluation to rule out a bilateral injury - she had seen something in the video that made her think it was a possibility. Talk about feeling like a failure in monitoring her progress!!!

After the shock wore off I quickly went into business mode, lining up second opinions, drilling her therapists, having her therapists talk to Lisa D. about what they saw etc. I got 4 opinions...all varied in terms of timing, but they all said she "could benefit" from a muscle rebalancing surgery.

We went to TCH for the hands on evaluation and decided to have them do the surgery in April. Once there we were told that they would also recommend the bicep tendon lengthening surgery. We talked a great deal about the follow-up care and decided to wait because baby #2 would come right when the critical therapy and scar massage would start. Also, I had researched and gotten opinions about the mod quad, not about the bicep surgery, so I was NOT comfortable with that at all.

We rescheduled the surgery for the end of Oct and opted to only do the Mod Quad. The surgery went really well, as did the recovery. I expected all hell to break lose, but everyone is right...kids are so amazingly resilient. My daughter was running around the halls the next day. The splint wasn't a problem either.

When the splint came off I was expecting one of those signs that we did the right thing. I've heard of kids immediately doing something that they hadn't been able to do. NOT so with us. My daughter had only been missing "end range" so we didn't see a dramatic improvement.

Then at 4 weeks of strength building (after 4 weeks of being totally splint free) I'd say we turned a corner. All of the sudden it was like she realized she had this whole other arm that she could use in a totally different way. I wasn't noticing her injury as much anymore, her movements were really fluid and her timing was nearly the same as her unaffected arm. Now at six weeks she's willingly crawling during her play (she was never a crawler...not an early walker... but an early sitter who was content to sit and not move for a good 4 months...), she is climbing monkey bars that she never could do before, she's reaching higher, she is always putting her hand on top of her head, she's wanting to try to undress herself (she's 2.5).

She does have winging... it was really bad for awhile, but now it pops back in with a gentle cue. We did Leukotape this week and the results were amazing. We may try kinesio to see which she responds better to, but so far I like the results of the Leukotape. I know they have different purposes, but I feel she could benefit from both...the leukotape to stabilize her scapula for awhile and give her muscles "memory" and the kinesio to be a gentle cue, but still give her the freedom to put it in place herself. Both ways could work in theory to achieve our end goal.

Throughout we have had GREAT therapists who have helped me understand the surgery. They have read every evaluation, report, etc. They have made their own contributions to the protocol based on specific knowledge of my daughter, and have expected more of a recovery from her then I think they originally had expected to see. They have allowed me to push them harder and harder and have actively sought out more information for themselves. They have kept me grounded when the differing opinions were getting overwhelming. We are really lucky.

As far as therapy goes now, we continue to do PT and OT once per week. After the surgery we added Aqua therapy... AMAZING results and suprisingly hard to find, and tomorrow my daughter starts gymnastics.

It has been a whirlwind, but I can now say I'm happy we did the surgery. Could we haven't gotten to this place without it? Perhaps, but this is the path we've chosen so we will never know. Does it sadden me that because of the surgery she will have lost some function that she may have gained...you bet. But as our PT says ..sometimes surgery is needed to jumpstart a recovery.

Besides the winging, the one area that hasn't come back the way we had thought was internal rotation. We are focusing on this a lot and I'll keep you posted. At this point I'd say there was a fairly significant loss. For a girl who was using this surgery to gain end range, to have her back barely in neutral for IR seems like a big loss. I'm suspecting that as she focuses on other muscle groups, this one is being "forgotten" and will come in shortly. That tends to be the way of my child.

We send a video in at the end of this month. I am NOT anticipating that they will recommend further surgeries. At her evaluation the Dr. said that her joint looked really good and she was not a candidate for CAPs. I talked a lot about this with the TCH therapy in terms of the likelihood that this would be recommended now and she thought it would be slim. Understandably, I will be very upset if it is recommended.

So that is where we are now. I'll update again after the video evaluation. Feel free to email me if you have questions or would like more specific information. My computer will be down the next few days, but should be back up and running by Monday.

Best to all.

[francine]

Lisa - thanks so much for sharing. Sounds like really good stuff is happening in your house! Congratulations! Always nice to hear a success story.

I have a suggestion.. talk to your surgeon about the internal rotation issue and also tell them what specific things you are doing in therapy for this... The reason I am saying this is because most therapists don't have experience with a posterior dislocation (as 90% of all dislocations in people are anterior and our kids mostly get posteriors) and there may be something that they should stay away from. I learned information about this pertaining to my own daughter's recovery and was very surprised and glad I got the information on time before she re-dislocated.

-francine

[Lisa D]

Thanks for the advice, I'll call tomorrow. I hadn't thought about dislocation issues.

Lisa

[admin]

Thank you SO much for your story. I am trying to hear all the different stories I can about the mod quad, as we are struggling to make the decision whether to go ahead with it. Our son did not need primary, but he seems borderline for secondary.

Thanks,
Stephanie