Heel Cord Surgery: Apparently we were MISLED.

Here parents of children with Cerebral Palsy can post questions about caring for their child and get advice on special needs and care.

Moderators: Tmagic650, Lori-ann

MichealsMom
Posts: 3
Joined: Tue Jul 28, 2009 11:08 am

Heel Cord Surgery: Apparently we were MISLED.

Postby MichealsMom » Tue Jul 28, 2009 12:09 pm

I have a almost 7 (next month) year old, Micheal, with right hemiparietal spastic CP.

When he was born at 24 weeks gestation with a grade IV (the worst) IVH (bleed in his brain), we were told that IF he lived, he would NEVER walk and would most probably be mentally challenged. I told them they were full of it.

And they were. He has never had to use a wheelchair. After much insistence by doctors and therapists, we ordered a walker when he was 2. He began walking without it the week before it arrived, and he has never used it. He is not mentally challenged; in fact, he is ahead of his grade level academically. He speaks clearly and was discharged from speech therapy years ago because the therapist said we were wasting everyone's time and money-he was ahead of his age level in every way.

Still, we have had to fight constantly to keep him in regular classes; the school that he attends likes to stick all students with an IEP in a separate class, regardless of their needs.


Basically, he has very mild problems with his right hand (goes into high tone when excited), but had serious problems with his right leg-walked on his toes, couldn't put his foot flat voluntarily, tended to compensate for his DAFOs by bending his knee, abducting his thigh, ect.

He could walk, but after botox and serial casting failed-he was just too tight, and started having skin breakdown from cast pressure points-and a stint without his DAFOs, because of skin injuries from casting-we were about out of options. We couldn't put on his right DAFO anymore because he was too tight and it caused skin breakdown.

SO although he was walking, he was ALWAYS on his toe, getting tighter and tighter, falling frequently, and was going through a pair of shoes every other week by wearing the toe completely out (the least of our problems).

So, we were talked into heel cord lengthening. The Doctor made it sound like a Godsend. He implied that Micheal would not even need braces afterward-he said he was one of the most perfect candidates he had seen in his entire career. We checked on the Doctor-he did his internship at Harvard and has been practising for 30 years. If he was confident, then so were we!

We were told that if he did it at the beginning of the summer, it would not affect school at all. He would be recovered for the most part by the time school let back in.

He had the surgery the week that school let out. The doctor went ahead and released his hamstring as well. He was in a cast up to his thigh for two weeks-a walking cast, which he was up and walking on after 4 days...this was what his Dr. wanted him to do, but did not expect it so soon...He was was amazed at his moxie.

Then the cast came off, and he hasn't taken a step on his right foot since.

He just CAN'T walk on it. Period. He takes a step and falls flat on his face. We went back to the doctor 2 weeks ago, and he told us he was confident that he would be walking by the time school let back in, so there was no need to contact the school board to re-evaluate his IEP. He assured us this was normal...at the time I didn't think to ask, if it's normal, why weren't we told to expect it?

We asked the doctor about a knee brace, since he is once again bending his knee and abducting to compensate for his right foot-JUST LIKE BEFORE. He told us we didn't need one-we should let him do it himself. His therapist got an ironic chuckle out of that one...yeah, right. If he was going to do it himself, he'd be doing it. Micheal is not the kind of kid to sit around when he could be RUNNING around.

When we showed him how Micheal cannot walk, he suggested we give him something for anxiety...he "SHOULD" be able to walk, so any problem he is having must be in his head.

When I explained to him that, 3 months ago, my child could walk, run, jump, swim-although he looked funny doing it, he could get around-I teared up. And he told me I had no need to worry. He'd be walking in another week or two.

Since then, there has been no change. Despite the fact that Micheal spends hours each day trying to walk with me, my husband, our mothers-whoever is around-encouraging him and trying to help-it is absolutely not happening.

We go to see him again on Thursday. we now have a little more than a week until school lets back in and I am scrambling to get his IEP modified to include accommodations for a walker. What walker? The same one that he NEVER used before. Thank God the height was adjustable, because we were sent home without a prescription for a walker, a wheelchair, or even a set of DAFOs. We were told he would need NONE of it.

He uses the walker basically as one would use crutches-as a way to put some the weight of his right leg on his hands. He also uses it to catch himself when he tries actually walking, since he falls every time. I hate to take the chance of him becoming dependent on it, but it was either that, a wheelchair, or I carry him everywhere.

Around the house, he crawls a lot to get where he is going, as it's easier than dealing with the walker. It is horrible for us to watch a 7 year old-who was functional and totally independednt 3 months ago-crawling on the ground.

Today, as we were struggling to get him and his walker up our front steps and onto our porch, he asked me why we got him surgery. He started crying and said he had no idea it was going to be like this; He told me how he misses walking and playing and doing the things he used to do. It just about brought me to my knees. I told him I feel the same way, and I am so sorry, If I had known, I would never, ever have decided to do this.

He's upset that he will have to use the walker at school-what will his friends think, but mostly-how will he carry his lunch tray or other things while holding onto the walker?

I told him I don't know, since there is nothing in his IEP about him needing ANY kind of assistance with ANY of it. That will change when we have and emergency meeting next week.

I used to wake up every day around 7 when Micheal would climb into bed with me, thankful for our blessings, thankful that Micheal could do so much, thankful that he had beaten so many odds. Now I wake up, on the days when he beats the alarm clock, full of regret, to him on his hands and knees at the edge of the bed, asking me to help him in.

His leg looks exactly like it did before-only it's useless.

I feel like I have made the worst mistake of my life, and our family has lost so much joy and happiness because of it.

Is this normal? Were we just not informed to begin with? Or is something horribly wrong and the doctor is trying to evade admitting his mistake?

Has anyone been through this? Will my little boy walk again? I'm starting to worry that he won't.

I'm sorry for the long post, I just wanted to include all the info, in case someone out there has been through the same thing and recognizes it.

LizinTX
Posts: 40
Joined: Wed Mar 11, 2009 6:20 am
Location: Texas

Postby LizinTX » Thu Jul 30, 2009 8:34 am

Oh Honey, that sounds awful!!! I would be pissed (pardon the language). I would insist on DAFO's at the next doc visit. If you think that would help him stablize that leg, or I would find another doc who would order them. That is just crazy. I had a doc (had being the operative word here) that also told me that Sarah didn't need braces on her legs, that she just needed to get around other kids and she would learn how to walk right by watching them. I kid you not, that is what he said.

Needless to say we have a different doc, and she does have an AFO on her left leg, and without it she still walks on her toes. <shrugs>

(((Hugs))) to you and your son, that must be so frustrating for both of you.
Mom to Jacob (13) Type 1 Diabetic, Sarah (10) CP, and proud wife of Dan.

philbooks
Posts: 1
Joined: Tue Aug 25, 2009 2:57 pm

BEING TOLD YOU HAVE NO HOPE IT IS A LYE

Postby philbooks » Tue Aug 25, 2009 3:46 pm

HI. I AM PHILIP MEADOWS:
BACK IN 1965 I ALSO, WAS BORN WITH CEREBRAL PALSY. I ALSO HAVE HAD THE HEEL CORDS LENGTHENED. I TOO WAS DIAGNOSED AT 2&1/2 WITH CEREBRAL PALSY. AT THAT TIME MY MOM AND DAD WERE TOLD TO PUT ME IN A INSTITUTION. AND TO FORGET ALL ABOUT ME. BUT, MY MOM SAID NO. THANK GOD. i TOO WENT THROUGH THE IEP. AFTER WE KNEW WHAT I HAD I THEN WENT TO THE UNITED CEREBRAL PALSY CENTER IN NORMAN OKLAHOMA. FROM AGE 2&1/2 TO ALMOST 6 YEARS OF AGE. I WOULD BE TAKEN ON SUNDAY NIGHT, AND PICKED UP ON FRIDAY AFTERNOON. VERY HARD EMOTIONLY.

AT THIS TIME IN MY LIFE AT THE AGE OF 44. I FIND MY SELF LIVVING IN MY OWN HOME, WHICH I RENT.
HAVE A PART TIME JOB. BUT, NOW I DRIVE MY OWN CAR, COME AND GO, AS I PLEASE.

I TOO WAS MADE FUN OF FOR THE WAY I TALK. AND CALLED A CRIPELED, YES IT HURT A LOT.

JUST BREMBER JESUS TOLD US "I CAN DO ALL THINGS THROUGH HIM WHO IS OUR STRENGTH. YES I KNOW WE THINK WE MUST DO IT OURSELVES. BUT UNTIL WE LEARN TO TRUST HIM IN ALL THINGS WE CAN ONLY FAIL.

User avatar
admin
Site Admin
Posts: 98
Joined: Wed May 10, 2006 2:18 pm

Postby admin » Wed Aug 26, 2009 8:36 am

Hi MichealsMom,
I too had the same surgery when I was younger. I did benefit quite a bit from the surgery. It did take me a while, don't remember quite how long, to begin walking again. Part of it has to do with the surgery itself and the other part has to do with the loss of muscle from being casted. Can I ask a couple questions?

How long was he in a cast after the surgery?

How long has it been since he has been out of the cast?

-Mike
admin@cerebralpalsyforum.net

millerjacob41
Posts: 1
Joined: Mon Aug 09, 2010 12:55 pm

Re: Heel Cord Surgery: Apparently we were MISLED.

Postby millerjacob41 » Mon Aug 09, 2010 4:07 pm

You really need a vaccine for that virus or something. This could prevent your children from being infected by those viruses. Try this and you will surely get a good health of it.
Last edited by millerjacob41 on Tue Aug 17, 2010 5:14 am, edited 1 time in total.

Acero
Posts: 2
Joined: Mon Aug 16, 2010 10:57 pm

Re: Heel Cord Surgery: Apparently we were MISLED.

Postby Acero » Mon Aug 16, 2010 11:02 pm

We are sorry to hear that he is in the tight and hard situation. Fortunately, he won't need to sit on a wheelchair. I think a miracle did happened.
online wheelchair

Devon
Posts: 4
Joined: Mon Jul 27, 2009 4:02 pm

Re: Heel Cord Surgery: Apparently we were MISLED.

Postby Devon » Wed Oct 13, 2010 11:38 pm

There is always hope. Never give up and never give in. Question what you are told and do your research. There is a lot of people who want and can help. Even taking better supplements like Stemgevity or seeing the video on the Stemgevity.com website under testimonials can open up avenues. The News Show - 60 minuets in New Zealand is a wonderful example of what can happen. Good luck and God bless.

avdul123a
Posts: 1
Joined: Sat May 21, 2011 2:06 am

Re: Heel Cord Surgery: Apparently we were MISLED.

Postby avdul123a » Sat May 21, 2011 2:15 am

In Louisiana, there are special procedures which must be followed in medical malpractice cases. For example, in Louisiana, a claim must be filed with the State before a lawsuit can be filed. This claim is then reviewed by a panel of three Louisiana doctors, who give an opinion about whether any health care provider committed malpractice.Only after the panel has reached its decision can a lawsuit be filed. There are many complicated details to this Louisiana panel procedure, and many traps for the inexperienced Louisiana attorney

wilsonjohn
Posts: 11
Joined: Sat Jul 02, 2011 12:16 pm

Re: Heel Cord Surgery: Apparently we were MISLED.

Postby wilsonjohn » Sat Jul 02, 2011 12:24 pm

Thanks for taking the time to discuss this, I feel strongly about information and love learning more on this. If possible, as you gain expertise, It is extremely helpful for me. would you mind updating your blog with more information?

arnob123
Posts: 5
Joined: Sun Aug 28, 2011 2:02 am

Re: Heel Cord Surgery: Apparently we were MISLED.

Postby arnob123 » Sun Aug 28, 2011 2:39 am

Not all physicians and physical therapists agree about heel cord releases. Some don't recommend them at all, citing the temporary nature of the correction in a progressive disease, the risk of interfering with walking ability, the apparently similar effectiveness of corticosteroid medications in prolonging walking, surgical risks, and the less than graceful gait provided by AFOs or KAFOs.

Families can have similar objections to surgery. And boys with DMD, as they reach their teen years, may find the prospect of zipping around school in a power wheelchair more attractive than labored ambulation with braces.

Some experts recommend heel cord tenotomy only as part of a larger surgical procedure, such as transferring a tendon from the back to the front of the foot (tendon transfer procedure) so the child can better lift his foot off the ground; or as part of a "triple release" procedure, in which contracted tissue at the hips, knees and ankles is released at the same time (see illustration).

Some surgeons, such as Neil Green at Vanderbilt University Medical Center in Nashville, Tenn., object to heel cord tenotomies without simultaneous releases in the upper leg. Green, director of the Pediatric Orthopaedic Section at Vanderbilt, has been associated with the MDA clinic at Vanderbilt for many years. "Heel cord lengthening, if it's done, must be done in conjunction with other muscle releases about the hips to allow the legs to be straightened enough to be put into braces," Green says. "It should be part of an overall program to decrease contractures of the hips, knees and ankles at the same time. If someone operates on a child with muscular dystrophy and does nothing but lengthen the heel cords, the child will stop walking, almost certainly."
Kissel says he understands such objections to isolated heel cord tenotomies but he's skeptical of rules applied to everyone.

"Clearly, there are boys that can do well just getting the ankles released. Some boys get such severe ankle contractures, while some get iliotibial band contractures," he says, referring to a band of fibrous tissue that goes from the hip down the side of the leg and can cause problems when it tightens

JackieJude
Posts: 2
Joined: Wed Oct 12, 2011 7:52 pm

Re: Heel Cord Surgery: Apparently we were MISLED.

Postby JackieJude » Wed Oct 12, 2011 8:35 pm

Hello,

I am 24 years old and i have CP (mild, Im diplegic but my left side is affect worse) I have had three achilles tendon releases, mostly when I was younger and 1 when I was 20. I was in a cast for 6 weeks and was just praying for the day when the cast came off, I was in college miles away from my family and lived in an apt with stairs. When the cats came off it was a n nightmare. There were times I had to crawl up the stairs or once the pain was so bad i got to the top and crawled into a ball in tears until one of my roommates came home and found me. They point to my story is that recovery from surgery is extremely painful and the fear can be debilitating, I was an adult who was studying OT and it was almost too much for me to bear. Please don't blame yourself, achilles lengthening are extremely successful and helped many children, I would not be where i was today if my parents didn't make those difficult decisions. On top of achilles a hamstring release is also very difficult to recover from. You wake up and all of a sudden you feel like you have a new body and that can be extremely overwhelming I would suggest looking into all aspects. Try a psychologist to work through his sadness and fear, I am not saying your son is making anything up, I understand the fear of walking because it elicits so much pain. Also he may be feeling a lot of pressure to walk and getting overwhelmed, try step by step work on tolerating independent standing first. Use his favorite activities on a tabletop where he has to stand and try intermitted standing (stand 1 minute sit 1 minute) and try and progress, have a chair right near him so he knows he is safe and in control. The more you can tolerating independently standing the more you can increase your ability to walk. The second possibility is they cut the muscle to much, when my dr explained me the surgery as an adult he said the either cut a slit into one side of the tendon or both, there is a possibility they cut too much, demand an MRI of the muscle to see how it is repairing. With CP anxiety increases the symptoms reassure him that this is not his fault and you are not upset that he is not walking. Stay calm, even if they did over-cut it doesn't mean it won't heal it just means its going to take a while. Things will be ok, I promise I have been there more times than I could count and I made it through just fine. This is not your fault, through everything I never once thought if blaming my parents, because if it was for there ferocity in my treatment I would not be me