Hi Doodlers in blogland,
I've been thinking about Elena's worsening gait. Most days, it's bad. Feet splayed out, dragging, slow. There is a helplessness creeping up in her. So it's time.
We have two orthopaedic visits this month (different docs--time for second/third opinions), where I plan on discussing surgical options. I'm thinking way ahead here to the classic multi-level approach (hamstring lengthenings, femoral osteotomies, possible hip osteotomy, etc.). This is the worse-case scenerio, I think.
How bad is it? Anyone with experience out there? I am not necessarily pro-multiple surgeries, but I want to arm myself with information. Pros/cons?
I am also considering things like PERCS (everyone can pipe down about NJ's Dr. Nuzzo. I'm not counting him out, I just have a very difficult time believing 100% success rate with no follow-up from his patients).
I am also tentative. I think surgery is the right call, but I'm not sure which kind, or when, and how long between this and whatever is next. I plan on having Elena weigh in here too. She is scared to death of surgery (I think she'll be relieved once a procedure is over, and she'll remember it's not that bad) but I want her to have understanding of why, when, and have her agree that whatever we do (or don't do) is the best for her body.
I am particularly interested in those who have had femoral/hip osteotomies prior to puberty and then how that worked out during/afterwards. I need data!
Please comment. I value your experiences. And as always, thank you for reading!
Thursday, October 30, 2014
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12 comments:
You read Bringing Back the Sunshine, right? Her daughter just had a multiple point surgery in the spring. It sounds like she is doing pretty well, but recovery has been slow and fairly painful for all.
D is only 5 so we aren't there yet - just trying to manage alignment before it gets bad...we'll see how it goes. But frankly, a large surgery scares the h*ll out of me. I have recovered from a "simple" ACL reconstruction and know how little there is simple about it. The things that can go wrong, the impact on your body? We are going to do what we can do avoid and I suspect we will try nearly everything non-invasive/less invasive first. My current self idea plans are - change orthotics, myofasial release (rolfing - I know Stanford is doing a study that was at least fairly successful in the early stages) and SPML or PERCS before considering the bigger stuff. Of course, his needs/body will ultimately dictate what options are available to us.
I hate having to make these decisions. Best of luck to you all.
I had a hip osteotomy when I was 17, after hamstring lengthening and Achilles release. That osteotomy is the one regret I have in my life. I was not functionally ambulatory before, so the goal was mostly for pain relief, and I can't comment on how it might help with E's walking. But I will say that recovery was longer and harder than promised. The external fixator they used became infected, and I ended up hospitalized for almost two months, and bed-bound for about two more. Almost half my life later, the scar tissue still has not filled in like it was supposed to. With a lot of PT, I regained the functional mobility I had before the surgery (things like transfers and dressing), but that side is still much weaker and less stable. And it didn't have any benefit in terms of pain relief. Your experience may differ, of course, but I wish I had never begged my parents to let me have this surgery.
I had bilateral hamstring and Achilles lengthening when I was 5, and then again at 15, along with a rectus femoris transfer. I also had a left femoral osteotomy at 7, and then again at 17. The reason for the repeats wasn't so much that they didn't work the first time (they helped, tremendously), but rather that my growth from 7 to 17 messed things up more than I would have liked. I don't regret doing any of the surgeries, and I think the first time they were definitely necessary to help me walk better, and then again to realign things after I had finished growing. I do think the second osteotomy at 17 wasn't as effective as the first.
For the surgeries when I was younger, I was definitely a little nervous, but as I got older, I actually looked forward to them a little because they helped so much. My parents said after the second muscle lengthening it was the straightest they had ever seen me standing, and it felt so much better, too, without as much spasticity. It's natural to not want repeat surgeries, but for me, they definitely worked better than years of PT and Botox.
Just wanted to say i'll be thinking of you guys and I think it's great you are including her in the decision. I know many people who don't even tell a child about surgery until the night before--not our approach either! We discuss discuss discuss even though P is only 4 (almost 5).
I know surgery is not something you WANT to do and big hugs for reaching this part in the process and starting to accept it and find what will work best for her.
She will do great with you by her side to guide her and help find the surgery that will have the most benefits!
Amy, please call NBC29 and ask for Terri. You won the tickets to tonight's showing of FRANKENSTEIN at The Paramount. Can you pick up the tickets before 5:15?
Amy - The number to call to claim your tickets at NBC29 is 434-220-2900.
AMY: I HAD ACHILLES TENDON LENTHENING AT 12 NOW THE BOTOX DOC WANTS TO TREAT HAMSTRINGS MORE TO SEE IF HE CAN STRAIGHTEN MY KNEES IF THAT DOESn'T WORK THEN HE WILL REFER ME TO OTHOPEDIC SURGEON.. IT SURE DOES NOT FEEL GOOD WALKING WITH BENT KNEES AND HIGH ON TOES ALL THE TIME
MELISSA
I like the fact that you are trying to make sure Elena is involved on this decision. And yes, I would try conservative measures first (i.e. Botox, orthotic interventions, and lesser surgery first if possible). And yes, E and I are both going through very crouchy times right now. I hope all goes well for Elena. P.S. Have not had any surgeries yet save for club feet, heel spurs, and the Achilles releases. And I am 50. Been really active and a fitness freak. But staying tight even with Botox. And she's at a major growth spurt and developmental changing times.
My daughter is only 7, and is not as high functioning as Elena. She can walk in a walker but needs directional help. She had developed a definite crouch even after years of botox, etc. When she was nearly 6, she had surgery -- hamstring & adductor lengthening and a (hamstring) tendon transfer. I had dreaded surgery, but it was actually a good thing with shorter recovery time than I'd expected. Her legs are straight, and her ROM is drastically improved (particularly hamstrings). She still leans forward when she walks (tight hip flexors), but she straightens her knees as she steps. Sorry we don't yet have experience with osteotomy. I'm crossing all my fingers that we won't have to go that route in the future...
My daughter (10) who has SDCP had hip derotation and lengthening surgery in April. I don't know if osteotomy and hip de rotation are the same things, but she now has steel plates and pins in both hips. They had to do both, although only one was coming out of its socket, to put her in alignment. She also had all of her lengthening at the same time. calves, hamstrings and adductors. Prior to this she was totally great on her walker and pretty independent, although super tight and getting worse.
I won't lie. IT was pretty darn awful. 6 1/2 hours of surgery and 10 days in patient in a full body cast with both legs cast. It was bad. And it got worse. We went through months of her on heavy pain killers and being immobile. Now, with the start of school and a change of therapies, she is starting to be her sunny self again. She is in a wheelchair and is learning to walk again with her walker, but has lost all muscle. It is like starting from scratch. We did it in April because in my mind I thought that way she would be able to enjoy some of her summer. It didn't turn out that way. She missed the last month of third grade and then did day rehab 3 hours a day 5 days a week all summer. But I can see it is coming and I know that big picture, it will keep her out of a chair permanently in her adult years. But it is hard to relate that info to a child. They can't see the future and the big picture of why we did this.
Please email me if you have any other questions for me. Good luck with your decision.
Patty
Parenting Outside The Lines
Pateeg@aol.com
Parentingoutsidethelines.org
Hi Amy,
I understand you are scared. I had my hamstrings and Achilles done 3 years apart. I'm very glad I did. It gave me the ability to walk! Has Elena had pervious tendon lengthening? Are her tendons actually shortened or is it simply her alignment that is bad i.e do the muscles actually have issues or is she crouching simply out of habit when the muscles are really fine?? I think they only lengthen the tendons if the muscles/tendons have a problem. I did NOT have osteotomy but I know someone who had it done as an adult. Their doctor said an osteotomy should only be done if the bones are having actual structure issues like if Elena's hips are shifting out of their sockets. They said an osteotomy is a bad idea if the bones are fine. osteotomy is LAST resort. Only do it if you have no other options. I would NOT do multiple bone surgeries because according to my research if you do too much to bones too fast Elena could lose abilities rather than gain them. I would wait until she stops growing to do osteotomy. osteotomy recovery takes a LONG time and is VERY painful. If I were you I would try new therapies and activities that would reinforce what she learns in PT (martial arts can be adapted to Elena's needs and may help with her balance/alignment if she is interested) Then move on to simple surgery. The simpler the better depending on her needs. Definitely keep Elena involved in the process. Maybe try asking her what she would like to have the ability to do as a result of surgery i.e no pain, more flexibility. I knew at a young age that I wanted to walk further even though I hated surgery. My hamstring surgery gave me what I wanted. Ask her if the crouch bothers her and if she could think of anything that might help her. Also remember that it is likely getting colder and she still sits a lot in school so her crouch could have a very simple source and solution. How is she doing in Drama Club??? I'd love an update on that.
Looking at the pictures of Elena on your newer posts, I see Elena is crouching but really is not that bad. Have you considered Elena working out a bit to strengthen her core and legs? I have CP and if I don't exercise enough I crouch/turn my legs in because some muscles get weaker and make the CP look worse. I had tendon lengthening as well.
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