lesliekay’s AchillesBlog

Lesliekay, I hope our posts can be of some help for your son, since his condition seems extremely difficult for a young boy who loves sports. Please do keep us posted.
Manny

If you guys have facebook, you can email me at my email address glsmith2001@comcast.net with your facebook name and you can see how he’s progressing.

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I haven’t updated in a while, but I still read all the replies. Please keep pushing. My mom and I were diagnosed with a muscular dystrophy called, Charcot-Marie Tooth disease. It affects the muscles, tendons, and ligaments below the knee. Mine are extremely tight and I have small calf muscles. I have a very high arch, small and narrow foot. It doesn’t affect me any as I’m not an athlete. It doesn’t hurt and mine wasn’t as severe as my mom’s. She did go have calf implants to improve the look of her legs because they were so tiny. I suspect Ethan has some form of it as it is genetic, but not all the characteristics. He has a huge amount of other issues. His toe surgery did not go as well as I had hoped, it’s still growing under his other toes (it’s been over a year), the next step is more invasive and resetting the bones and that’s something we are not prepared to do at this point.

He is getting stronger in his upper legs which helps the lower legs, but he is still very very tight. I can’t imagine where he would be if we didn’t have it done. I am very concerned about his puberty growth spurt. We must rest him for month

Smlwoman- you are on the right track. Knowledge is power but be careful how you take that knowledge with you to the doctor. I have found from experience if you say things like “I found this on the internet” they shut everything you say after that out and don’t give you credibility to what you are telling them.

Take your knowledge and ask questions. Ask until you understand completely why they think he needs the surgery etc.

After reading your post, I tend to agree your son could benefit from help. The hard part will be as a mother being confident you are getting him the RIGHT help.

Second opinions are always good. Sometimes it’s better to not tell them what you know because it can bias their diagnosis.

I’ve had fibromyalgia for over 20 years. It got to the point every time I mentioned that in my history, the doctors quit looking further for the reason behind my health complaints.

The other issue that doesn’t help is our insurance sometimes. The new rules don’t pay doctors unless they follow the diagnostic courses the insurance company dictates which cost us time and money.

I had to do three months of therapy a

Hi, I just finished reading your blog. No recent updates. I hope and pray everything is ok. My son is 9 and severe ADHD. You and your son have done so much work and experienced setbacks. I’m torn between surgery and none. My son is so tight his butt sticks out and he can not stand up straight with his heels on the floor. I have been telling Drs. And therapists since he was 3 that his knees are knocked, and he toe walks. They kept telling me he is just like that, Shriners even laughed at me, and I felt like a hypochondriac. Therapists said he just has a quick step return. He is also avid sports player. Now 6 years later he roller skates bent over and walks slightly bent over. He was also a W sitter and had low muscle strength in his lower body. I kept telling Drs something is not right. Now I’m searching the internet because his pediatrician says he has tight Achilles’ tendons. I’m wondering with all your setbacks if you had it to do over would you have waited until he was older to do the surgery or if you think he has adjusted so well because he is so young? Sincerely another mother like you trying to make the best decision for our

I found your post comments while searching Google. It is very relevant information. Regularly I do not make posts on blogs, but I have to say that this posting really forced me to do so. Really awesome post. Really fantastic and I will be coming back for more information at your site and revisit it! Knee Specialists Thank you.

We have had a couple of similarly situated parents here, as well as a few teens or twenty-somethings telling their own stories. kevin’sMom is close to one ID, and Suzanna is close to another - though I’m not sure either is close enough for a computer!
My FIL had the same problem ~80 years ago, and got a much simpler surgical fix, both sides at once. They just surgically ruptured his ATs, immobilized his ankles at “neutral” - not the usual toe down “equinus” position - and let his body connect the two severed AT ends while he was immobilized and NWB (in a wheelchair, I assume). He went on to serve in the Canadian Air Force in WWII and lead a long and active life, though his main sport was golf BH the time I met him.
I don’t get a vote on this, but I’d vote for two surgeries at once. Lots of youngsters are scary on crutches, and vulnerable in a cast, and impatient as all get out. Around a month post-op he should be padding around in two boots, and walking slowly in shoes around 2 months post-op. By about 3 months he’ll be moving past the risk of rerupture, and then every week should be better and more normal than the last. Adding a

My son is 10 years old and an avid (obsessed) basketball player. Due to his tight Achilles Tendons and Gastroc muscles, he has always been a toe walker and experienced pain. He has always “powered through” for the sake of not wanting to sit out on any game. We were always told by pediatricians when he was younger, he would outgrow it.

Now, at age 10, 3 specialists (including pediatric orthropedic and 2 foot & ankle specialists) have evaluated him and have told us the Z-Plasty Achilles Lengthening surgery is the only option that will be effective on Dylan.

We have done PT (which brought his heel down when barefoot, but completely stiffens the leg in the process), he sleeps in a night splint, and we have already been told serial casting will be ineffective due to his level of tightness. I know if we do not do the surgery, he faces injuries from his ankles up in the future.

My head and my heart know that I have to take my extremely active child off the court for the better of his future and to hopefully remove his pain as well.
He is horrified by the idea and devastated (he is not an indoor gaming kid - he only wants to

I would love to hear an update as well. My 4 year old is scheduled to have achilles lengthening surgery in three weeks, and it would be great to talk with other parents who have a had their children experience this. I especially would like some advice about the recovery period. you can reach out to me directly at jennastoltz @ gmail. Thanks!

Do you have an update??? My son is 4 and only walks on his tip toes. I am hearing a lot about the surgery, not sure if we will do it.

what type of brace did you use. what is the frog togg thing that you write about to cool the feet?

THANKS
Becky

my heart goes out to you. this surgery was performed on me in the 1960s and i was profoundly and permanently crippled. i never recovered. better to have walked on my toes than the difficult life i have lived as a disabled person. i hope with all my heart it turns out better for your son. but i would urge you to avoid any more surgery.

Great article i’m glad to found it.

Normal DF is 15+ degrees past neutral, FWIW. More does no harm EXCEPT that it can be the symptom of a too-long AT-&-calf.

I’d assume that AT-lengthening surgery could be repeated ’til it works. That’s nobody’s first choice, but it sounds better than limping toes-out forever.

Recovery from AT surgery on ONE leg is way nicer than TWO.

When my 89-yo FIL was a boy, he walked on his toes, and got successful surgery on both ATs to let them lengthen. (I say “let them lengthen” because I think it’s essentially surgery to cut them apart but NOT to stitch the ends back together, followed by “non-op” rehab, letting natural healing rebuild ATs that are longer than the originals. I’m guessing that the initial immobilization is NOT done in ballerina/equinus/DF position, but closer to “neutral” position.

He recovered fine, and went on to lead a long and athletic and active life, not over yet. He’s got problems now at 89, but his ATs aren’t on the list.

Thanks for the blog posts! I have a 13 year old daughter that is very active in sports and because she was a toe walker ( I was told she would grow out of it) she has very tight tendons. She recently severly injured her ankle and now needs surgery to fix so the Dr is planning to do the tendon surgery at the same time. People tell my I am crazy for doing something so invasive but she has a lot of pain associated with the tight tendons. We hope that this will fix her ankle and help with all her knee and hip pain. Best of luck to your little guy I am sorry we waited so long!

My son (who is 7 years olf) actually had the surgery on both ankles and he was in 2 boots but did not cause any pain to him. He was in his comfort zone with them on because they provided the extra support. When he was cleared to have them off, was a huge change for him and that is where he struggled the most. Please let me know if you have anymore questions. I will be glad to answer them

Hi, my name is Natalie, I’m 16 years old. I am interested in this blog because of a health project I am doing for my school. I injured my Achilles tendon in April of this year during a soccer game and it still hasn’t healed. The doctors aren’t sure what’s wrong with it but I have had two MRIs, one boot and have been through physical therapy. I have found your blog very helpful and I was wondering if you were in a boot and if it helped you or not. When the doctor I was seeing put me in a boot and it caused more pain than I originally had and this is what my entire project is based off of. Thank you and I hope you have a good day!

Good luck!

Thank you for your concern Karen I just posted a new blog

Hi LeslieKay

How are you and Ethan doing? I see from your last post he was to have a follow up at the end of November, how did he get on?

Karen

I’m glad it sounds like he is make more positive progress than your last blog entry. And I hope that it keeps getting better. Keep everyone posted.

Unfortunately for Ethan, when we bend our knees while standing, we have to simultaneously dorsiflex our ankle to keep our foot flat on the floor/ground. So if Ethan’s right hamstring is so tight that he can’t straighten his right knee completely, he needs even more ankle flexion (=calf-and-AT length) than if he could.

Mind you, MANY people — especially MALES — have trouble sitting on a floor, back straight and knees straight. When I was a kid, I could stand straight-kneed and touch my toes or even touch the floor below my toes, but I couldn’t sit like that. (I had two older sisters who both found it silly easy, but not me.) That particular inflexibility never seemed to hurt me in sports or walking, but it was there.

If Ethan now has either fair right-calf strength OR a relative freedom from pain in the right leg, I think he should be able to walk with his right foot straight, just by lifting his right heel off the ground/floor a bit earlier than others.

Have you tried adding some skinny heel lifts to his shoes, until he can walk straight? I do know you want to lengthen his calf-and-AT, but if it’s so hard now that he’s c

I very sorry, but I would listen to nutkin. Get a second opinion and make sure you have a good relationship with your Therapist.

Hi
I was really sorry to hear about Ethan, that must be quite a shock to both of you and discouraging. I really encourage you to seek another opinion, and if you aren’t happy with the way in which your PT is working alongside you then I found it was a good idea to look for someone who will. I did find it was really important to make it clear to people I had to work with long term as to what I needed and therefore what I expected from them i.e. clear instructions, review dates to analyse progress that sort of thing. I remember when my leg finally came out of the moonboot and the PT was able to measure the movement in my ankle he was okish with it, but helping reduce the scar tissue in the ankle area helped it even more. I think the only thing I say is hang in there, find someone who is going to support you and Ethan and provide the kind of medical assistance he needs to come right. It is a long road to fix an Achilles lengthening and you need all the support you can get.

Take care and best of luck, Karen

Just a matter of perspective and/or frame of reference. Pulling your toes “up”, is the same as flexing your knee “down” (typically when standing). I’ve heard dorsi-flexion describe as either “up” or “down”, depending on how the flexion is being applied.

They can’t get him back to neutral nor can they get him to flex upwards.

LK, when you wrote “They took measurements and could only get him to 6 degrees below neutral on his right foot and 4 degrees below neutral on his left.”, did you mean 6 degrees and 4 degrees ABOVE neutral? If not, I’ve got something backwards.

Ditto on the pool - it really helps loosen the ankle area and build confidence!

I am so relieved that he still could progress with the aid of PT. The PA was about 50% on Ethan’s tighteness being physical or if it’s his subconcious protecting his tendons by resisting against the PA flexing his feet upwards. He said that through PT will help Ethan either loosen up physically or teach him to trust his new flexibility. Also, PT hopefully help his gait. Our first PT is Monday.

Hi
Sorry to hear that the tightness is a big issue for him still. I argee with the above comment about PT, I found that once I started PT I moved forward in the recovery path. Did the doctor say why he thought the tightness was still there? Did he suggest swimming, as I found it really helped to get some movement in the ankle area without putting pressure on it. Also water walking, backwards, forwards and sideways. You do need to get the ok of the PT to do this, as they may or may not want that much movement in the leg. I hope you have some success with the PT
Karen

I really hope so. I have one his age and you just don’t want to see your kids struggle. I hope the PT gets through to him. I’m sure they will.

I suspect the PT will do some magic. We all hope so!

Hi

How did Ethan get on at the doctor’s?

Karen

Hi
I am sure there will be a solution for you. I had my op in Sept last year and I would honestly say it has only been in the last 3 months that the Achilles area looks normal, but I have been walking for quite some time. My point is, is this is going to take a while. I found I had to go quite slow with walking as otherwise I tended to revert to a walking position that would reduce the pain, rather than being a good walking position. I did find swimming was great, you do need guidance from your PT as to what strokes you can and cannot do, but I found that after each swimming session I got more and more freedom in my ankle area. I also walk in the sneakers/trainers that my surgeon and PT approved as this helps me alot. Hope all goes well, let me know how you get on.
Karen

@nutkin - that would very well make sense. The PA at our last visit said that Ethan’s tendon area felt thick in places. I kinda think Ethan’s mind is trying protect his injury. And I also agree with you. Ethan does not know how to walk properly. He does need to be retrained how to walk and that is another reason that I am anxious to start some form of PT. The nurse suggested that the PA will give us stretches to preform at home. We shall see.

@normofthenorth - thank you so much for your insight and knowledge. He walked in his Air Boots with no crutches for 4 weeks prior to 9/12. Took him 1 week to get used to them and by week 3, he was playing soccer in them. He was so excited to get them off after 10 weeks of being “confined” and for him to complain of pain and risk being put back in the boot, really means that his pain is unbearable to walk properly. I have a friend that is an Orthopedic PA and I was finally able to see him this weekend. He checked Ethan out and said that he would get him checked out immediately, he would recomment PT, and that the right leg (the one Ethan is dragging) felt loose (which is good), but the left leg felt tight). I asked why our doctor hasn’t ordered PT and he said that kids usually “bounce back” so quickly, that no PT is needed, but if the child is having trouble as Ethan is, he would put him in PT. We will know more Wednesday when we go back to our PA. I have to acknowledge Optum Orthopedics. I had to leave messages with both the appointment clerk and the nurse and I received a call from both of them within 3 hours.

Hi LeslieKay

Good to be getting checked it checked at the doctors. I found I had quite a large build up of scar tissue after this op, and the PT had to do deep tissue massages in my ankle area for quite a while to ensure I could keep up my mobility. He also gave me a lot of exercises to train my foot to walk properly, frustrating at first, but it does get there. Hope all goes well and you come away with a solution.
Karen

LK, I’m not clear on how long he was walking FWB (no crutches) while still immobilized in a cast or boot. My fave protocol is fast but it still spends 4 whole weeks in that phase. I wouldn’t skip it or skimp on it.

At this stage, we’re all hoping for the best. Get it checked out and do what’s best. Limping asymmetrically — with one short stride but toes straight ahead — does no harm. But rolling over a foot that’s splayed out to the side as you describe is a Bad Thing in a few ways and should be discouraged.

Hi there,
really hope it isn’t a setback and hala is right!

I’m sure your good fortune isn’t running out! Once I started walking, I was often tempted to walk like that as the excess scar tissuewas not yet broken down so normal walking was painful. I’m sure the PT can help with some exercises and massage. Good luck!

Hi Lesliekay
I saw your last post and felt really happy for you and your son. I had my right achilles lengthened in September last year and while the recovery is a long journey I am so glad I had it done.
I see he is at the partial weight bearing stage, I imagine he thinks it is total freedom compared to non weight bearing. How is the swelling and pain? One of the things I started to do a lot of when I was transfered into the boot was to start taking my leg out of the boot, and making sure I was seated somewhere safe, so not to risk putting weight on the leg, I would give the leg and foot a rub with my hands, brushes whatever I could find to help bring back the normal sensation to the leg. The key with this stage is not to think you are unbreakable and to try and do too much, so no superman acts of flight on crutches
Hope his recovery continues to go well

Karen

Hi Jarvis
I had my Achilles lengthened in Sept last year. I will point out that I have being have leg issues for quite sometime and so have a number of things wrong with my right leg, in addition to the Achilles, so some of my timeframes will seem quite long.

I had my right leg operated on, and through keyhole surgery the surgeon made three incisions into my Achilles, from what I recall they are about 1.5inch apart and went about halfway through the Achilles. I was then placed into a plastercast for 2 weeks and then a fibreglass cast for 6 weeks. Tips: Get a wheelchair, he will love going about in that - He will probably need to keep the leg elavated for a while so you can get extensions to add to the wheelchair to help with this. The pain for the first two weeks was not great, had a lot of heel pain. My doctor was able to help me here and gave me some medication directed soley at that. If he goes into a fibreglass cast stay away from the heater - fibreglass is a conductor of heat and it does and will burn.
After the fibreglass cast came off I was placed into a moonboot and I had to wear this for ages - mainly because of some

Hi There my Son is 7 years old and has also just been advised that his Achilles needs to be Lengthened. I am trying to find out if someone has had the operation and how it affected there Future.. because my son is really good at sport and not sure if he will ever be able to play again

2 things: (1) Try squishy soft footbeds inside the boot for comfort, and (2) Check out bit.ly/UWOProtocol and try not to let Ethan’s Doc take him much slower, ’cause there’s no benefit according to the best studies.

Hang in there!