Tenotomy experience

The parent's of clubfoot child shared their experience on their child's tenotomy.I've extracted this info from the nosurgery4clubfoot at Yahoo health forum.You may join the group too.Very informative and active forum.

Lisa- Our daughter Avery (RCF) had her tenotomy at 6 months of age a few
weeks ago. They used the cream (applied an hour before), and we gave
her Tylenol. We wavered on staying in the room, but decided to and
were very glad we did. Honestly, I think we would've regretted not
being there for our little one. It was VERY fast and all over quickly. AFTER they cut the Achilles
they gave her a lidocane shot directly into the site, and she was
feeling less pain soon after. They let us cuddle with her for a
while, then put her holding cast on after she was well comforted.

Korinne-My husband and I were both in the room for it...Dr. Morcuende did it, while Dr. P held my son's foot. My husband actually watched as they cut, I just looked into my baby's tear filled eyes...it was hard, but soooo worth it.

Amber -The tenotomy isn't that bad. They used a cream on Brody's heel. I held him and my hubby was in the room too. He cried more getting his casts on than during the surgery. Honestly they only poke a scalpel into his heel and I think I saw one drop of blood. I was a WRECK going in but then when it was over I thought "wow, that was nothing"! The incision is this long --- We take our son to UVA so it was the Dr, my husband, me, a nurse and a resident in the room.

Jocelyn - My son has his heel cord cut at 8 weeks old. He slept through the whole thing! They didn't even need use any anesthesia, and he was only out of my arms for 20 minutes. I would have loved to be in the room holding him, but that wasn't an option for us. He experienced a little bit of spotting but it didn't bother him at all. he was immediately lifting his legs and kicking away!

Ana Teixeira-Yeah, according to Dr. P technique, it is not necessary to be in a surgery
room with general anesthesia. I could hold my baby and we couldn't believe
he even slept during the procedure! Don't worry it is very simple and the babies don't feel any pain or
uncomfortable.

Tovey - We had Jack's tenotomy done in Iowa with Dr. P. Dr. M. actually did the procedure, but Dr. P was there too. I elected to not be in the room since it is hard to see Jack cry and I also had my other two little ones with me. My husband stayed with Jack and he said it wasn't a big deal. I believe they used a cream, but I'm not positive. Jack didn't cry when they did the tenotomy, but he cryed when they put on the betadine. He cryed less during the tenotomy then he did every cast change. I seems a little scary, but it is quick and not so bad:)

My experience?
It was done in Paed Operation Theater, HKL . I remember it was Monday and first case in the morning.It was like sending Dania to big operation. Doctor do not really explain what is tenotomy but they've only explained that they are going to cut the stubborn tendon. I was so sad because Dania need to fast before and after the procedure. She fast about 4 hours before & after the procedure and she cried for milk.After the surgery, u know what the Ortho Surgeon Consultant told me? 'Actually Dania's feet is not ready for tenotomy. But we shall see what we can do to help her'...huh?

Good News for HoneyD and all of us

I've met this lady, HoneyD virtually in one of the local forum community.
Her cute little Adam had BCF and has gone few serial of casting at one of the private Hospital in JB.

In July, she sent me 2 photos of Adam's feet and she also sent these 2 photos to Dr Ponseti.


So, I suggested her to see Prof Sharaf and she did.
After few months, now Adam's feet is already corrected.




[All photos are courtesy and given permission to published by HoneyD]

I'm very very happy for Adam and his parents.
Atleast, they are not suffering longer time like us.
Ponseti Method has able to make one life to walk as normal child...:)

To HoneyD, thank you for believing me and we should not stop here.
To Prof Sharaf, thank you for helping us.Maybe you should publish this method in the newspaper.So that others will know and appreciate.I will continue my part to bring the awareness virtually.

Ponseti Method has brought me to many friendly and helpful friends.

New Ponseti Certified Doctor at Neighbourhood

Proudly announce that :-

Singaporean's Ponseti Certified Doctor

Dr. Kevin Lim
Dept. of Orthopaedic Surgery
KK Women’s and Children’s Hospital
Singapore 229899
www.kkh.com.sg
Phone 65 6394 2171
kevin.lim.BL@kkh.com.sg
milnivek@pacific.net.sg


Malaysia ku Boleh!!!!

p/s: Author still prefers to go to Bangkok, currency still cheaper & treatment guaranteed..

Ponseti's clubfoot patients get off on right foot - an article from Iowa City Press

Three-year-old Logan Maloney is "very much a mover."

He likes to play soccer in the front yard daily and runs around as much as he can, said his mother, Kerry, of Palatine, Ill.

"We're outside pretty much until it gets freezing out there," she said.

This energetic mobility wasn't always possible. Logan was born with clubfoot, characterized by a deformity of the foot that causes it to turn inward.

At 7 days old, the Maloneys brought Logan to University Hospitals to see Dr. Ignacio Ponseti, a world-renowned expert on clubfoot and the inventor of a non-surgical way called the Ponseti technique to treat the condition through gentle manipulations and plaster casts.

Ponseti's young patients returned Saturday, showing off their treated feet by running happily around the UI Recreation Building during the fifth annual Ponseti Clubfoot Races.

"It's very pleasant to see all these children and their families," Ponseti said. "It's quite an accomplishment ... such good results."

The races also are the final event of the two-day symposium "Treatment of Congenital Clubfoot -- The Ponseti Technique" for orthopaedic surgeons. Clubfoot appears in about one in 1,000 births in the United States.

"It's awesome. It just makes you cry," Kerry Maloney said about watching the children race down the track to Ponseti and his wife, Helena.

"It really does happen," she said. "He's the best."

Paula Holland's 4-year-old son, Logan, had a new set of green casts on his feet during Saturday's races because he went into a relapse in July. That didn't stop him, however, from running with the rest.

When Logan Holland saw Dr. Ponseti for the first time when he was 6 months old -- the fourth doctor to work to treat his clubfoot -- Ponseti said it was the worst case he'd seen in 25 years, said Paula Holland, of Bryan, Texas.

"We knew that he may have a relapse," she said.

Holland said she has complete faith in Ponseti and his method.

"What other doctors couldn't do in 22 weeks, Dr. Ponseti did in four," she said. "When you have the right doctor doing the right thing, and he loves the children as much as you do, it's just amazing."

"He has God's hands," she said. "God literally gave his hands to Dr. Ponseti to use."

Eid Mubarak

Dear Muslim Clubfoot supporters,

Salam AiDiLFitri to all of you and hopefully we have find our long lost soul during Ramadhan and re-gain our true sipirt of ourselves, Amin!

This is the very first time for Dania celebrating Aidilfitri without her cast!!Wuhuuuu...photo attached was during last year Aidilfitri...:)

Last year, she is still in casting [after 2nd surgery] and personally I thought that Dania will still be in casting and no idea the casting will be ended this soon..Now she is in Mitchell shoe 10-12 hours at night time...

Thank you to all my nosurgery4clubfoot circle of friends who actually lead us to Dr Ponseti,Dr Dobbs and of course Dr Amnuay.

This weekend will be the Ponseti Symphosium at Iowa, I've doubt there is representative from Malaysia [yelahkan Raya time]... hmm...maybe I'm wrong..anyway they don't bother to spread this method sincerely...[so sad!!]

-Ina & Dania

From my eyes

I was about to write the different between Original Ponseti Method [O.P.M] vs Malaysian own Ponseti [I referring to what Dania has gone through] long time ago..I may add more as at when I remember..

1. O.P.M - casting could only takes not more than 7 times but in Dania case, I think it is more than 15 times. huh? Through Ponseti websites, casting more than 7 times is a signal that the treatment is in fault...Hulalala...The treatment can be shortened by changing the plaster casts every five days....in HKL, the casting change every 2 weeks...

2. O.P.M - you can only removed the cast about an hour before new cast applied but in Dania case, we need to do it at home before we reach Hospital.

3. O.P.M - the infant should not be in struggling mode to ensure the casting is well applied but in Dania's case or even her friends, crying out loud like no body business.In Bangkok, Dania was put on sleep during the manupulation to ensure the Ponseti casting method is well applied.

4.O.P.M - Surgeons with limited experience in the treatment of clubfoot should not attempt to correct the deformity. They may succeed in correcting mild clubfeet, but the severe cases require experienced hands. But in Dania's case, in HKL there is none of them is Ponseti certified and no wonder they can't help that much. In HKL, the check up is done by the Medical Officer [MO] but the casting is applied by the so call orthopedic specialist...hmm I'm so speechless...I still keep some of Dania's cast at home since the cast can easily slipped off.Hmm, no wonder!!

5. O.P.M - In order to prevent relapse after following the casting process, the child will be fitted with a splint consisting of a bar with high top, open-toed shoes.The child will need to wear this splint full-time for the first 2-3 months and then at night for 2-4 years. In HKL, we saw a lots of clubfoot kids wearing Dennis Brown shoe without a bar and they wear the shoe as walking shoe!!!!! Dania could be one of them but we were lucky, Dr Ponseti direct us to the right person.

So parents out there, please visit Ponseti International website to understand more on this method and Good Luck!!

Malaysia Boleh!

Last Tuesday, we went to HKL [again!] for Dania's premature progress check up. Bilik No 10 , we waited about 30 mins before our turn. The paed was a Indian/Sikh Lady,very warm and friendly. Very soft spoken but Dania's trauma started when the paed tried to talk to me.The Paed asked about her clubfoot feet.

Paed : How's her clubfoot problem, mem?
Me : Yeah, corrected and we got it done in Bangkok but not here..;p
Paed : Oh, You went to Bangkok? Their treatment is good?
Me : Much better and you wont get it done fast in Malaysia.
Paed : Oh ok...as long as her feet is corrected kan..[smile]..
Me : Yeah, you are right . [The option is only applicable for those can afford, Doc.What happen for those who can't afford?The HKL paed Orthopedics is still sleeping, can u wake them up?Hmm I don't think Prof Sharaf can take them all]

Oh ya I met one of the lady who was used to make Dania's splint, and show her Dania's feet [proudly].Yes, she still remember us..:)

Malaysia ku Boleh!!

Update

Hari ini saya rasa terharu seorang ibu berterima kasih dengan saya kerana menemukan beliau dengan doctor yang pakar dlm Ponseti method ini di HUKM. Walaupon masih didalam progress, tetapi baliau sudah nampak keberkesanan dan kaki anak anak beliau nampak banyak perubahan dari cara Ponseti tersebut.Saya bersyukur kerana usaha saya yang sehalus kuman ini dapat membantu beliau dan keluarga. At least, beliau tidak mengalami apa yang kami telah alami di HKL.Saya masih lagi marah atas apa yang berlaku tapi marah saya semakin reda.

Malay translation

I'm trying to translate some of this Ponseti Method info to local language...a big challenge to me..I will find time to translate..be patience..:)

Tippie MBA Students Help Spread the Word about Ponseti Clubfoot Treatment

Release: May 15, 2008

A group of Tippie MBA marketing students has spent the last year looking for ways to market the Ponseti method of treating children with clubfoot. They found that good news doesn't always travel fast.

Despite 50 years of success, many physicians in the United States are still not fully aware of, or even practicing, the revolutionary nonsurgical treatment developed by University of Iowa Health Care's Dr. Ignacio Ponseti. A marketing report compiled by the Tippie students over the past year said this lack of awareness comes despite the fact that the Ponseti method has been declared the standard of care for clubfoot by major U.S. health care professional organizations.

"There's still such a low rate of occurrence of clubfoot, with only about 5,000 children born each year in the United States with the condition, that doctors don't see patients very often," said Amber Fourcault, a second-year full-time MBA student and a member of the group. "Quite often, we heard from doctors that they see only two or three clubfoot cases every five years."

The report was commissioned by the University of Iowa-based Ponseti International Association as part of its effort to increase awareness and usage of the Ponseti method, first developed more than 50 years ago by the professor of orthopaedics at the UI Carver College of Medicine. His method involves gentle, manual manipulation of the child's foot and application of toe-to-groin plaster casts. The casts are changed weekly after a clinician manipulates softened foot ligaments to gradually achieve near-normal muscle and bone alignment.

Five Tippie MBA students -- Fourcault, Adnan Fazal, Emily Gander, Brandi Gibbs and Su Zhang -- worked on the marketing plan during the past year as part of a marketing class taught by John Murry, professor of marketing in the Tippie College of Business. The students came to their recommendations after talking with hundreds of orthopedists, obstetricians-gynecologists and family practice physicians across the United States, as well as in India and China.

In their report, the students suggested the Ponseti International Association take steps to better manage the information flow regarding the method to improve awareness and reduce confusion.

"We suggest they make Ponseti a brand, to manage it and control it and establish a presence that would make them the authority on the Ponseti method," said Fourcault.

One easy and inexpensive step would be to establish a comprehensive Web site about Ponseti, and market it is as the authoritative source of information about the method. The Web site would eventually replace pamphlets and other printed materials that the students discovered don't always get to the doctors or the patients.

"Print materials are an ineffective use of resources," said Fourcault. "Electronic material is easy to send and update, and it doesn't cost much money."

During their research, the students found physicians who said they used the Ponseti method, but in fact were not, or were using modified versions. Fourcault said the doctors weren't maliciously trying to trade on the Ponseti name, but simply didn't realize they weren't doing the Ponseti method as it was developed by Dr. Ponseti.

"Many of these doctors treat so few patients that they've forgotten some of the details, or they added steps that aren't a part of Dr. Ponseti's method," Fourcault said. "The problem is that if they say they're using the Ponseti method but they're not, and it doesn't work, then that reflects badly on Ponseti."

The students recommended that once the brand is established, the association should publicize it at national medical conferences, publish a Ponseti newsletter, and create a network of Ponseti-qualified physicians to promote the method.

The Ponseti International Associate has already taken steps to build the Ponseti brand. A Web presence was established in 2007 at www.ponseti.info, and the first-ever international conference of Ponseti practitioners was held in Iowa City. A second international conference is planned for 2009.

Jose Morcuende, M.D., associate professor of orthopaedics in the UI Carver College of Medicine and president of the Ponseti Association, said board members appreciated the group's work and ideas.

"They did a great job of looking at things from the perspective of the business side, not physicians, and they identified areas we have to work on to make the Ponseti name more widespread," said Morcuende. "They also identified that we have to use different programs and different messages in different countries."

He said the report shows the association must do more to correct misconceptions about the Ponseti method (for instance, that the treatment lasts for years; in fact, it is usually only three to six weeks for the correction of the foot by casting, followed by a simple, comfortable nightbrace for two to three years to prevent relapses). The report also suggested the association look for new ways to introduce the method to China and India, where clubfoot patients are seen as social pariahs and little is done to help them lead a normal life.

"Clubfoot can be eradicated around the world in 10 years if we had the resources to implement the programs," he said. "This report will help us find new ways to get the word out."

Source: UI News Services
Writer: Tom Snee
Contact: Tom Snee
UI News Services
319-384-0010

Ponseti Method

"Parents of infants born with clubfeet may be reassured that their baby, if otherwise normal, when treated by expert hands will have normal looking feet with normal function for all practical purposes. The well treated clubfoot is no handicap and is fully compatible with normal, active life." Ignacio Ponseti, M.D.

The majority of clubfeet can be corrected in infancy in about six to eight weeks with the proper gentle manipulations and plaster casts. The treatment is based on a sound understanding of the functional anatomy of the foot and of the biological response of muscles, ligaments and bone to corrective position changes gradually obtained by manipulation and casting.

Less than 5% of infants born with clubfeet may have very severe, short, plump feet with stiff ligaments, unyielding to stretching with a deep transverse skin fold across the sole of the foot and another crease above the heel. These babies require special treatment and may need surgical correction. The results are better if bone and joint surgery can be avoided altogether. Surgery in the clubfoot is invariably followed by scarring, stiffness and muscle weakness which becomes more severe and disabling after adolescence.

The treatment should begin in the first week or two of life in order to take advantage of the favorable elasticity of the tissues forming the ligaments joint capsules and tendons. With our treatment these structures are stretched with weekly, gentle manipulations. A plaster cast is applied after each weekly session to retain the degree of correction obtained and to soften the ligaments. Thereby, the displaced bones are gradually brought into the correct alignment.

Five to seven plaster casts extending from the toes to the upper thigh with the knees at right angle should be sufficient to correct the clubfoot deformity. Even the very stiff feet require no more than 8 or 9 plaster casts to obtain maximum correction. Before applying the last plaster cast which is to be worn for three weeks, the Achilles tendon is often cut in an office procedure to complete the correction of the foot. By the time the cast is removed the tendon has regenerated to a proper length. After two months of treatment the foot should appear overcorrected. Recently we found that the treatment can be shortened by changing the plaster casts every five days.

Following correction the clubfoot deformity tends to relapse. To prevent relapses, when the last plaster cast is removed a splint must be worn full-time for two to three months and thereafter at night for 3-4 years. The splint consists of a bar (the length of which is the distance between the baby's shoulders) with high top open-toed shoes attached at the ends of the bar in about 70 degrees of external rotation. A strip of plastizote must be glued inside the counter of the shoe above the baby's heel to prevent the shoes from slipping off. The baby may feel uncomfortable at first when trying to alternatively kick the legs. However, the baby soon learns to kick both legs simultaneously and feels comfortable. In children with only one clubfoot, the shoe for the normal foot is fixed on the bar in 40 degrees of external rotation. During the daytime the children wear regular shoes. Shoes attached to the bar often cause pressure blisters and sores. To prevent such distressing problems, we have devised a new foot and ankle abduction orthosis that holds the foot firmly and comfortably in place, causing no sores.

Since the surgeon can feel with his fingers the position of the bones and the degree of correction, X-rays of the feet are not necessary except in complex cases.

When the deformity relapses in spite of proper splinting a simple operation may be needed when the child is over two years of age. The operation consists in transferring the anterior tibial tendon to the third cuneiform.

Poor results of cast and manipulative treatments of clubfeet in many clinics indicate that the attempts at correction have been inadequate because the techniques used are flawed. Without a thorough understanding of the anatomy and kinematics of the normal foot and of the deviation of the bones in the clubfoot, the deformity is difficult to correct. Poorly conducted manipulations and casting will further compound the clubfoot deformity rather than correct it making treatment difficult or impossible.

Surgeons with limited experience in the treatment of clubfoot should not attempt to correct the deformity. They may succeed in correcting mild clubfeet, but the severe cases require experienced hands. Referral to a center with expertise in the non-surgical correction of clubfoot should be sought before considering surgery.

Dear Malaysian readers,

If you can afford, I would advise you to go straight to Dr Amnuay Jirasirikul at Bumrungrad Hospital, Bangkok as he is a certified Ponseti Method doctor.He is strongly recommended by Dr Ponseti himself.Full non-US based doctor list can be browsed here.

But if you think that you want to give our local doctors a chance to prove their skills, all you need to do is to bring along a referral letter from the current doctor and contact any of the Paed Orthopedic below. I got this list from Prof Sharaf.


abdrazak@kb.usm.my, Dr Abd Razak Sulaiman HUSM
abdrazak_muhamad@yahoo.com, Dr Abd Razak HKL
ahmadtajuddin@yahoo.com, Dr Ahmad Tajuddin HKT
atiqahsuzanna@yahoo.com.my, Dr Atiqah HKT
azliukm@yahoo.com, Dr Azli HKL
bobpenafort@yahoo.com, Dr Robert DSH
burza92@yahoo.co.uk, Dr Burhan Hosp Ampang
drhalimrashid@yahoo.com, Dr Abd Halim HUKM
drmuhammadafif@yahoo.com, Dr Afif HKL
ismailmu@kb.usm.my, Dr Ismail HUSM
kamariahnor@yahoo.com, Dr Kamariah HKL
joharishikin@yahoo.com, Dr Shikin HKL
rahata@fmhs.unimas.my, Dr Hata Sarawak GH
sawaik@hotmail.com, Dr Saw Aik UH
shukrimi72@yahoo.com, Dr Shukrimi Hosp Kuantan
ssenkl@hotmail.com, Dr Sengupta UH
sumei_y@yahoo.com, Dr Yong Su Mei UH
yaacobas@yahoo.com, Dr Yaacob Hosp Seberang Jaya
zulpeadortho@yahoo.com Dr Zul Osman HKL
sharaf@mail.hukm.ukm.my Dr Sharaf HUKM

Please bear in mind, none of the Doctors listed as above is a certified Ponseti Method Doctor, but we hope someday, one of them will.

Anyway, whenever you have doubt with the treatment given, you can always email to Dr Ponseti at ignacio-ponseti@uiowa.edu for his opinion and do not forget to attach the patient's clubfoot photo.

Facts

What is Clubfoot?
Clubfoot, or talipes equinovarus, is a treatable birth defect that affects approximately 150,000-200,000 children each year. When clubfoot occurs the foot is twisted inward and down, and this condition occurs during development in the womb. Physicians have observed that fetuses that develop clubfoot start with a normal foot and then the foot begins to turn inward around the third month. Most children born with clubfoot are not missing any bones, muscles, or connective tissue. It is a congenital condition, meaning that when it occurs it is always present at birth. It is one of the most common congenital deformities. One or both feet may be affected and the affected feet can range from relatively flexible to stiff and rigid. The condition is not painful for the new born, though when a child gets to walking age, walking with an uncorrected clubfoot can be very painful and difficult, if not impossible.

When will you know?
Parents will know at birth if their child has clubfoot because the foot will be twisted inward. Some cases are diagnosed during a routine ultrasound. If you are wondering if your child has clubfoot, contact a physician who has experience in diagnosing this condition (not all pediatricians know how to diagnose clubfoot).

Malaysia's fact (shared by Prof Sharaf of HUKM)
Boo NY, Ong LC.
Department of Pediatrics, Faculty of Medicine, National University of Malaysia.
A study was carried out on 8,369 neonates delivered in the Maternity Hospital, Kuala Lumpur over a period of four months. Forty-nine neonates (5.6 per 1000 livebirths) had congenital talipes. The incidence of congenital talipes equinovarus (CTEV) was 4.5 per 1000 livebirths while that of congenital talipes calcaneovalgus (CTCV) was 1.3 per 1000 livebirths. 6/11 (54.5%) of the CTCV was unilateral, the ratio of right to left feet involvement being 1:1. Only 12/38 (31.5%) of the CTEV were unilateral, the ratio of right to left feet involvement being 1:2. Congenital talipes was significantly more common in the low birthweight neonates (p less than 0.001). However, the condition was not significantly more common in neonates with breech presentation nor in those born to primigravida mothers. Our data suggested that multifactorial genetic background as the most likely underlying cause of congenital talipes in Malaysian neonates.


Residual deformity following surgical treatment of congenital talipes equinovarus.
Simbak N, Razak M.
Universiti Sains Malaysia, Kelantan.
A study was carried out on 24 patients (36 clubfeet) surgically treated at the Orthopaedic Department National University of Malaysia, Kuala Lumpur, over a period of four and half years. Nine feet underwent posterior release, 24 feet underwent posteromedial release combined with Evan's procedure. The overall operative result was 63.3% good, 9.5% fairly and 27.2% poor. Patients who underwent surgery between 3 to 12 months showed a high percentage of good results (66.7%). Metatarsal adduction was found to be the commonest residual deformity (63.9%), followed by heel varus (11.1%), cavus (11.1%) and equinus (5.6%). Inadequacy of primary surgery and post operative period of immobilization resulted in a significant high failure rate.

What does Dr Ponseti thinks on the surgery?
Ignacio Ponseti, MDDepartment of Orthopaedic Surgery, University of Iowa Hospitals and Clinics
Surgery does not "cure" clubfoot. It improves the appearance of the foot but diminished the strength of the muscles in the foot and leg, causes stiffness in the second and third decade of life, if not earlier, limits the motions of the foot joints, and the foot becomes often painful at midlife. Surgery does not prevent the recurrence of the deformity in a number of cases. To my knowledge not followup studies of operated patients older than 16 years of age has been published to date. Therefore, orthopaedic surgeons are ignorant of the results of their surgeries.
Foot and ankle surgeons, however, who treat adult patients have noticed that those surgically treated for congenital clubfoot in infancy have weak, stiff and often very painful feet.

The objectives

Dear readers,

Thank you for your visit.
This blog is dedicated to the parents of the babies & children born with clubfoot, was a clubfoot's patient, and clubfoot's supporters. This blog is also for the public who are able to contribute in terms of ideas, opinion, experiences, motivation to us.Feedback are welcome. However, please bear in mind that every comments are viewed by others as well.

For a start, as a parent of unilateral clubfoot baby, I would like to inform to all parents that this deformity is able to be corrected WITHOUT surgery(s). Please seek for early treatment once it is detected from the expertise, the real one. If possible, find the certified Ponseti method doctor. You can't find anyone in Malaysia YET, but we hope to have at least one soon.