ADVICE NEEDED! Heel Cord Lengthening Benefits

Real Moms Sharing Their Experiences and Advice

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Question:My little girl has Right Hemiplegic Cerebral Palsy and at a recent appointment with her Developmental Pediatrician the topic of Heel Cord lengthening was brought up briefly by the Dr. She suggested that this would be beneficial for my daughter in the future. I am just looking for opinions/views or advice from those who have knowledge or have had this procedure done. Is it worth putting my child through this in the future .. etc etc ? Thank you

Answers:

• Sarah G: My son has left hemi cp. Heel cord had been brought up a lot. And I chose to seek a second opinion at Mayo as once you do heel cord legnthaning at a young age it’s hard if they need something as a teen. We chose to do a gastroc recession and it made huge improvements. He now still has a full heel cord to work with when they need to lengthen at a older age. Feel free to PM me if more questions. My guy was 5.5 when he has the gastroc recession

  
•  Jena T: We choose a bilateral tendon transfers instead. And a dorsal Rhizotomy. These were right for our son. After both he was able to walk.

  
  In making a decision, I would suggest considering the following…
  – What do we hope this surgery accomplish?
  – Will this decrease pain/muscle spasms?
  – Is ability to walk a possibility?
  – Are there less invasive options?
  – What happens if we choose not to do this?
  – Will a second opinion be beneficial?Then trust your instincts.
• April B: My son had it done at 14 best thing we ever done gave him more range and motion but I wouldn’t have it done unless you go to shriners hospital they are the best with anything orthopedic and no cost
• Shannon P:  I would strongly recommend it. My daughter had this done in 2009 and it’s not as bad as one would think! My daughter had to stay over night because of her O2 stats but she never complained about pain and was a rock star! She is 16 and has only had this done once. We are very good about making sure she has well fitting AFO’s
• Sarah R: Our daughter had tight heal cords and could not, even in her sleep get to 70* let alone neutral. We did 1 injection of Botox and “Movement Lesson” and she could go flat footed. I know all kids are different hope this helps.
  Www.moventlesson.com
• Bethanne G: My husband has left side hemiplasia. He had the surgery when he was around 6. It worked well for him and they saw alot more progress in his wslkjng. He still needs a drop foot brace and orthotics but has really good results overall.
• Kim V: had it done to my son at age of 6, best thing ever, had it at CHOP in Philly BEST thing:) not easy but well worth it. both legs
• Beth M: My daughter had it done this past November and was in a cast for about 6-7 weeks after. I was worried the cast would bother her because she is severely developmentally delayed, gets very anxious at times, etc. but it didn’t seem to bother her. She has been putting weight for the first time on that leg/foot now and does much better in her gait trainer and stander. We tried Botox a couple of years before doing it but it didn’t seem to help. The surgery was pretty quick and I would definitely recommend it. Prayers for you to make a decision you’re comfortable with!
• Shiveta S: Is it going to be a muscle/ tendon cutting procedure known as Z-plasty??
  If yes, then don’t go for it.
  Why..? I”l tell u…
  1. It’s painful very very painful after the surgery is done.
  2. Patient is bound to bed for days.
  3. There is pronounced muscle weakness in the already weakened concerned muscle
  4. Physiotherapy becomes too slow as there is pain n weakness
  5. Overall recovery is delayed.NOW. instead opt for ultrasound guided myobloc along with PERCUTANEOUS MYOFACIAL RELEASE (PMFR) PROCEDURE because..
  1. There are no cuts n stitches
  2. Ur girl will be discharged after 12-13 hours
  3. Very little or no pain will be there.
  4. Patient is mobile on the next day and can rejoin physiotherapy ( which is must after all procedures)
  5. Ultra fast recovery will be there with fantastic results.
  Since your girl is in growing phase, muscle/tendon cutting will not help.
  P.S. I am a practising stroke, cerebral palsy physiotherapist and have treated and compared muscle lengthening surgeries patients and PMFR cases since last 4 years and believe me the results of latter are astounding.
  Rest is your discretion:-) best wishes for u
• Beth D: I had my left heel cord lengthened in 1969 when I was 7. I am now 52. The surgery was a success and not an issue for me at all – except spending the summer in a cast and on crutches! I still walk with a limp and am pigeoned toed but I do not walk on my toes like I did! The issue I am facing now is back pain – I have a curve in my spine and worked over 25 years as a manager of a fast food restaurant so was on my feet for 10 hours a day. Any other ” older” CP sufferers out there with any advice?! There are days I can barely stand up.
• Rachel L: Our neighbor’s son has had this procedure done three or four times now (he’s 16 and I think they started at 5 or 6). He was wheelchair bound and now walks the dogs and has no problem schlepping his bookbag around the high school. I’d say it was a resounding success for him (but painful and a slow recovery).
• Aimee H: My sons have severe hypertonia and we struggle with heel cord tightness. Right now we are doing Botox which is helping immensely. My fear with surgery is that it is permanent. Does your child have orthotics or splints to wear at night to help,with the stretch? This coupled with Botox is usually the first line of defense. Next would be Botox with serial casting. Surgery should be the last option.
• Anna G: My son went thru it at 17 they did the heel and ankles. Had to have more done at 23. Both feet at the same time. 8 weeks in cast and 6 weeks of therapy both times. Cast was removed, stitches out at 3 weeks, cast removed again at 6 weeks and off at 8 weeks.
  The surgery went well and the results are good. My son has very tight and skinny legs and so he walks stiff legged. Looks like another surgery will be needed in his future. But only because of of gait and his disability.
• Debra G: I had this done twice as a child at Shriners in Spokane. My muscle tone is just too tight. But for others it isn’t too bad of a surgery. I was in the hospital over night and other than having a cast on it wasn’t that bad.
• Ravyn D: My daughter had it done when she was 4 years old. She was in a cast in a sitting position for 6 weeks. she had it done in Nov. but she did not walk until the following Aug. She had very tight hamstrings and during recovery time had lots of cramps in her legs. Also she could not sit up unsupported until she could walk. I am not trying to scare you just give you the facts. If I had to I would do it again. Good luck
• Lynn Allison Usually pt would lengthen the hamstrings and have her put her heels down….but seek a second opinion.
• Lisa S: We did our daughters when she was 7 best thing we ever did.. The first night was rough.. But after that was so much better.. A quick note.. Because we did the surgery on her heel cords.. Now her hamstrings are getting worse.. So keep that in mind when you decide.. smile emoticon
• Neale S: Selective dorsal rhizotomy. St. Louis children’s hospital.
• Carolyn H: My daughter had the surgery done when she was younger, she is now 18 years old, she has right sided weakness, Eplisey, and hydrocephalus,
  with a VA Shunt. The surgery was a success.
• Kim M: my sister had this done WOW did it help her

  ADVICE NEEDED for Special Mom shared from Facebook post #psnmo952