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Re: Gait problems. <fwd>

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On the contrary, before I had both my achilles tendons lengthened age

11 and 12, I could not lower my heels to the floor. After the ops I

could.

Also, now, if I am very tired or the pain is my feet is particularly

bad, I tend to toe-walk, or walk on the outsides of my feet. Gives me a

very odd gait!!!

Nina

Bristol, UK

--- Begin Forwarded Message ---

Date: Thu, 15 Jul 2004 16:25:38 -0500

Subject: Re: Gait problems.

Sender: Brande

To: tetheredspinalcord

Reply-To: tetheredspinalcord

Message-ID: <0c3f01c46ab2$47233870$6501a8c0@Brande>

I don't think it is either, generally speaking, that is.

Maybe it is because he was just off of it for soo long.

Me :)

Nebraska, USA

mymocha@...

son can't put his heel down much less bear weight on this foot. Is this

common with a broken bone or is this a complication from spina bifida?

Not Medical Advice. We Are Not Doctors.

Need help with the list? Email kathy@...,michelle@...,

rick@...

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Hi Nina,

Can you give me some info on the heel cord lengthening surgery that you

mentioned. My sons orthopedic surgeon has mentioned my son may have to have

this surgery. (We go for an MRI next week to see if any of the foot issues

might be associated with a retether.)

The way the dr. talked this was a pretty routine surgery and he would be in a

cast for a few weeks. Did you have surgery on both legs at the same time? Any

info you can give would be very much appreciated. I am completely in the dark

and my son is so confused on why he can't run and walk like he did several

months ago. I'm praying that it is because he was off of his foot for so long

and not retethered.

In a message dated 7/16/2004 3:39:52 AM Eastern Daylight Time, Nina Bunton

writes:

>On the contrary, before I had both my achilles tendons lengthened age

>11 and 12, I could not lower my heels to the floor. After the ops I

>could.

>

>Also, now, if I am very tired or the pain is my feet is particularly

>bad, I tend to toe-walk, or walk on the outsides of my feet. Gives me a

>very odd gait!!!

>

>Nina

>Bristol, UK

>

>--- Begin Forwarded Message ---

>

>Date: Thu, 15 Jul 2004 16:25:38 -0500

>

>Subject: Re: Gait problems.

>Sender: Brande

>To: tetheredspinalcord

>Reply-To: tetheredspinalcord

>Message-ID: <0c3f01c46ab2$47233870$6501a8c0@Brande>

>

>

>I don't think it is either, generally speaking, that is.

>

>Maybe it is because he was just off of it for soo long.

>

>Me :)

>Nebraska, USA

>mymocha@...

>

>son can't put his heel down much less bear weight on this foot.  Is this

>common with a broken bone or is this a complication from spina bifida?

>

>

>

>

>

>Not Medical Advice. We Are Not Doctors.

>Need help with the list? Email

kathy@...,michelle@..., rick@...        

                   

>

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Guest guest

I also walk funny. Before my first untethering, I

walked like a duck because my one leg was shorter than

the other. Now, when I'm tired, like Nina, I walk on

the outsides of my feet. I can't wear anyone else's

shoes because they feel so weird to me. Mine wear the

way I walk, and everyone else's shoes have a much

higher outer edge than my shoes do!

It very well could be a spastic muscle causing his

foot issues. If it hurts really bad, I'd go to an

orthopedic specialist.

--- Nina Bunton wrote:

> On the contrary, before I had both my achilles

> tendons lengthened age

> 11 and 12, I could not lower my heels to the floor.

> After the ops I

> could.

>

> Also, now, if I am very tired or the pain is my feet

> is particularly

> bad, I tend to toe-walk, or walk on the outsides of

> my feet. Gives me a

> very odd gait!!!

>

> Nina

> Bristol, UK

>

>

> son can't put his heel down much less bear weight on

> this foot. Is this

> common with a broken bone or is this a complication

> from spina bifida?

>

__________________________________________________

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Guest guest

Joking here, in our family we have relatively short legs anyway

(nothing to do with TCS or achondroplasia, just genetically and

inherited shortness!), and my dad always joked that he and I have

" duck's disease "

Now with the TCS, I have " crooked legs duck's disease!!! " - oh well -

it made me laugh :) (and I need that right now...)

Nina

--- Begin Forwarded Message ---

Date: Fri, 16 Jul 2004 06:39:42 -0700 (PDT)

Subject: Re: Gait problems. <fwd>

Sender: Weaver

To: tetheredspinalcord

Reply-To: tetheredspinalcord

Message-ID:

I also walk funny. Before my first untethering, I

walked like a duck because my one leg was shorter than

the other. Now, when I'm tired, like Nina, I walk on

the outsides of my feet. I can't wear anyone else's

shoes because they feel so weird to me. Mine wear the

way I walk, and everyone else's shoes have a much

higher outer edge than my shoes do!

It very well could be a spastic muscle causing his

foot issues. If it hurts really bad, I'd go to an

orthopedic specialist.

--- Nina Bunton wrote:

> On the contrary, before I had both my achilles

> tendons lengthened age

> 11 and 12, I could not lower my heels to the floor.

> After the ops I

> could.

>

> Also, now, if I am very tired or the pain is my feet

> is particularly

> bad, I tend to toe-walk, or walk on the outsides of

> my feet. Gives me a

> very odd gait!!!

>

> Nina

> Bristol, UK

>

>

> son can't put his heel down much less bear weight on

> this foot. Is this

> common with a broken bone or is this a complication

> from spina bifida?

>

__________________________________________________

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Guest guest

Dear Kasha (I don't know if that is your propoer name!)

My left foot first started getting deformed when I was 2 and gradually

as the Achilles tendon shortened (due to the TC), the foot grew into a

blocked shape, and I could not put my heel on the floor. This went on

for 8 years, and the OP surgeon would not operate till I had nearly

stopped growing (otherwise it could happen again)

Then just as I changed schools age 11, I had the left foot done, and

the following year, the right foot (almost matching scars as well!!),

as well as toe releases on both sides. What they did (in 1977) is make

an incision on the inside of the leg, where the Achilles tendon joins

the ankle bone, and split it diagonally lengthways, and then stitch it

back together again so that it was lengthened. Both summers (1977 and

1978) I had big plaster casts on the lower legs (one each year), and in

the UK those years were the hottest of the 20th Century - not very

comfortable!!

I was given physiotherapy to do, but being a silly little kid (not

realising its value) I didn't do the exercises as much as I should and

ended up with really thick tendons, both sides. However, the R one is

relatively flexible and I can bend the ankle right down to about 45

degrees. The L side, with the more deformed foot anyway, does not bend

at all, and if I try (all these years later), still hurts if I try to

do this.

Remember that any surgery will injure the body in some way, and so your

little man shouldn't feel bad that he can't run as he used to. If he

takes it easy after the tendon surgery, he should get back his

function. That is, of course, if the spinal cord is not affecting his

feet, but that is another story that I don't know about in your case

Does this help? Hope so. Email me privately or on the list if you want

to

Regards

Nina

--- Begin Forwarded Message ---

Date: Fri, 16 Jul 2004 09:23:48 -0400

From: kasha545@...

Subject: Re: Gait problems. <fwd>

Sender: kasha545@...

To: tetheredspinalcord

Reply-To: tetheredspinalcord

Message-ID:

Hi Nina,

Can you give me some info on the heel cord lengthening surgery that you

mentioned. My sons orthopedic surgeon has mentioned my son may have to

have this surgery. (We go for an MRI next week to see if any of the

foot issues might be associated with a retether.)

The way the dr. talked this was a pretty routine surgery and he would

be in a cast for a few weeks. Did you have surgery on both legs at the

same time? Any info you can give would be very much appreciated. I am

completely in the dark and my son is so confused on why he can't run

and walk like he did several months ago. I'm praying that it is

because he was off of his foot for so long and not retethered.

In a message dated 7/16/2004 3:39:52 AM Eastern Daylight Time, Nina

Bunton writes:

>On the contrary, before I had both my achilles tendons lengthened age

>11 and 12, I could not lower my heels to the floor. After the ops I

>could.

>

>Also, now, if I am very tired or the pain is my feet is particularly

>bad, I tend to toe-walk, or walk on the outsides of my feet. Gives me a

>very odd gait!!!

>

>Nina

>Bristol, UK

>

>--- Begin Forwarded Message ---

>

>Date: Thu, 15 Jul 2004 16:25:38 -0500

>

>Subject: Re: Gait problems.

>Sender: Brande

>To: tetheredspinalcord

>Reply-To: tetheredspinalcord

>Message-ID: <0c3f01c46ab2$47233870$6501a8c0@Brande>

>

>

>I don't think it is either, generally speaking, that is.

>

>Maybe it is because he was just off of it for soo long.

>

>Me :)

>Nebraska, USA

>mymocha@...

>

>son can't put his heel down much less bear weight on this foot.  Is

this

>common with a broken bone or is this a complication from spina bifida?

>

>

>

>

>

>Not Medical Advice. We Are Not Doctors.

>Need help with the list? Email

kathy@...,michelle@..., rick@...

                           

>

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Guest guest

Jumping on as another has had the same surgery as Nina so brilliantly

describes. I have a little more to add which I thought may be useful

for you to hear.

I had my right achilles lengthened in 1986. Like Nina, I was told

that I had to wait till I had stopped growing (I was 16). A few years

ago my cousin though had his achilles lengthened, he was 10 - It

seems times have changed and the age rule no longer applies.

For the past 4 years I have had nothing but trouble with my post op

achilles. Surgeons won't touch it because it has weakened from the

previous surgery. I now have chronic tendonitis which needs permanant

pain relievers. Of course, the TC causes leg pain and I'm unsure as

to how much is caused by the tendonitis or the TC??? It's possible

that my change of gait because of the tendonitis provoked extra

issues with the TC? Questions questions

I am 34 now and I do not regret having the surgery. Like I say, I do

have pain but it is relieved by celebrex and yes, I constantly tumble

over my stupid toes...........again TC or tendonitis?

My cousin is now a 21 year old who's favourite hobbies are clubing,

getting drunk and enjoying life. His lengthening op wasn't anywhere

as successful as mine........makes me wonder about that 'fully grown'

rule. Like me, my cousin doesn't regret going for the op either. He

walks on his toes which means he goes through dozens of pairs of

shoes per year (Good job, one of his other hobbies is shopping. lol)

Good luck in exploring the oportunities for your son, if any

lengthening op has a realistic chance of eliviating the tightness and

pain - go for it!

Carey

Hove UK

> Dear Kasha (I don't know if that is your propoer name!)

>

> My left foot first started getting deformed when I was 2 and

gradually

> as the Achilles tendon shortened (due to the TC), the foot grew

into a

> blocked shape, and I could not put my heel on the floor. This went

on

> for 8 years, and the OP surgeon would not operate till I had nearly

> stopped growing (otherwise it could happen again)

>

> Then just as I changed schools age 11, I had the left foot done,

and

> the following year, the right foot (almost matching scars as

well!!),

> as well as toe releases on both sides. What they did (in 1977) is

make

> an incision on the inside of the leg, where the Achilles tendon

joins

> the ankle bone, and split it diagonally lengthways, and then stitch

it

> back together again so that it was lengthened. Both summers (1977

and

> 1978) I had big plaster casts on the lower legs (one each year),

and in

> the UK those years were the hottest of the 20th Century - not very

> comfortable!!

>

> I was given physiotherapy to do, but being a silly little kid (not

> realising its value) I didn't do the exercises as much as I should

and

> ended up with really thick tendons, both sides. However, the R one

is

> relatively flexible and I can bend the ankle right down to about 45

> degrees. The L side, with the more deformed foot anyway, does not

bend

> at all, and if I try (all these years later), still hurts if I try

to

> do this.

>

> Remember that any surgery will injure the body in some way, and so

your

> little man shouldn't feel bad that he can't run as he used to. If

he

> takes it easy after the tendon surgery, he should get back his

> function. That is, of course, if the spinal cord is not affecting

his

> feet, but that is another story that I don't know about in your case

>

> Does this help? Hope so. Email me privately or on the list if you

want

> to

>

> Regards

>

> Nina

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Guest guest

Thanks for your info Nina.

My son was born with TC and had first release surgery at 7 wks the another at 5

yrs. Both surgeries went very well but we did have issues with bladder and

bowel as to be expected. However, last year, my sons annual urology tests

showed great readings and the uro dr suggested biofeedback to re-train the

bladder muscles. It was a success!! My son is still on a timed voiding

schedule however recently he has been able to feel when he needs to go.

The issue with the feet started after a fall at school back in September. He

didn't feel the pain that you normally would with a break but had alot of

swelling. The xray showed two broken bones - 4th and 5th metatarsals. After the

bone healed, his foot developed a huge ulcer on the bottom of his foot directly

on the underside of the same area of the break. Some drs thought the cast was

removed too soon, others said it was due to decreased sensation from SB. The

ortho dr said no weight bearing on that foot at all to allow the ulcer to heal.

Two months later when the dr ok'd weight bearing, his leg was so weak that he

couldn't put weight on it. He has been going to PT for a month and we have seen

much improvement however, he still has to walk with a walker. The PT said all

of this was to be expected when someone hasn't used their leg muscles for some

time. I, myself, have never had any broken bones so I was totally unaware of

this.

Since his foot has been through so much, the ortho dr. has mentioned if the MRI

is negative the next step may be heel cord lengthening surgery. So all info is

very much appreciated.

Thanks again!

(Kasha)

In a message dated 7/16/2004 11:09:25 AM Eastern Daylight Time, Nina Bunton

writes:

>Dear Kasha (I don't know if that is your propoer name!)

>

>My left foot first started getting deformed when I was 2 and gradually

>as the Achilles tendon shortened (due to the TC), the foot grew into a

>blocked shape, and I could not put my heel on the floor. This went on

>for 8 years, and the OP surgeon would not operate till I had nearly

>stopped growing (otherwise it could happen again)

>

>Then just as I changed schools age 11, I had the left foot done, and

>the following year, the right foot (almost matching scars as well!!),

>as well as toe releases on both sides. What they did (in 1977) is make

>an incision on the inside of the leg, where the Achilles tendon joins

>the ankle bone, and split it diagonally lengthways, and then stitch it

>back together again so that it was lengthened. Both summers (1977 and

>1978) I had big plaster casts on the lower legs (one each year), and in

>the UK those years were the hottest of the 20th Century - not very

>comfortable!!

>

>I was given physiotherapy to do, but being a silly little kid (not

>realising its value) I didn't do the exercises as much as I should and

>ended up with really thick tendons, both sides. However, the R one is

>relatively flexible and I can bend the ankle right down to about 45

>degrees. The L side, with the more deformed foot anyway, does not bend

>at all, and if I try (all these years later), still hurts if I try to

>do this.

>

>Remember that any surgery will injure the body in some way, and so your

>little man shouldn't feel bad that he can't run as he used to. If he

>takes it easy after the tendon surgery, he should get back his

>function. That is, of course, if the spinal cord is not affecting his

>feet, but that is another story that I don't know about in your case

>

>Does this help? Hope so. Email me privately or on the list if you want

>to

>

>Regards

>

>Nina

>

>--- Begin Forwarded Message ---

>

>Date: Fri, 16 Jul 2004 09:23:48 -0400

>From: kasha545@...

>Subject: Re: Gait problems. <fwd>

>Sender: kasha545@...

>To: tetheredspinalcord

>Reply-To: tetheredspinalcord

>Message-ID:

>

>

>Hi Nina,

>

>Can you give me some info on the heel cord lengthening surgery that you

>mentioned.  My sons orthopedic surgeon has mentioned my son may have to

>have this surgery.  (We go for an MRI next week to see if any of the

>foot issues might be associated with a retether.)

>

>The way the dr. talked this was a pretty routine surgery and he would

>be in a cast for a few weeks.  Did you have surgery on both legs at the

>same time?  Any info you can give would be very much appreciated.  I am

>completely in the dark and my son is so confused on why he can't run

>and walk like he did several months ago.  I'm praying that it is

>because he was off of his foot for so long and not retethered.  

>

>

>In a message dated 7/16/2004 3:39:52 AM Eastern Daylight Time, Nina

>Bunton writes:

>

>>On the contrary, before I had both my achilles tendons lengthened age

>>11 and 12, I could not lower my heels to the floor. After the ops I

>>could.

>>

>>Also, now, if I am very tired or the pain is my feet is particularly

>>bad, I tend to toe-walk, or walk on the outsides of my feet. Gives me a

>>very odd gait!!!

>>

>>Nina

>>Bristol, UK

>>

>>--- Begin Forwarded Message ---

>>

>>Date: Thu, 15 Jul 2004 16:25:38 -0500

>>

>>Subject: Re: Gait problems.

>>Sender: Brande

>>To: tetheredspinalcord

>>Reply-To: tetheredspinalcord

>>Message-ID: <0c3f01c46ab2$47233870$6501a8c0@Brande>

>>

>>

>>I don't think it is either, generally speaking, that is.

>>

>>Maybe it is because he was just off of it for soo long.

>>

>>Me :)

>>Nebraska, USA

>>mymocha@...

>>

>>son can't put his heel down much less bear weight on this foot.  Is

>this

>>common with a broken bone or is this a complication from spina bifida?

>>

>>

>>

>>

>>

>>Not Medical Advice. We Are Not Doctors.

>>Need help with the list? Email

>kathy@...,michelle@..., rick@...

>                           

>>

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  • 1 month later...

From what I understand, if there are other problems that are caused by the

Tether, it is best to do a Detethering first to see if that will correct,

atleast some, of the problem. If you did it the other way around it could

lead to more Surgery.

This is a late response, sorry........how are things going now?

Me :)

Nebraska, USA

mymocha@...

>

> Can you give me some info on the heel cord lengthening surgery that you

mentioned. My sons orthopedic surgeon has mentioned my son may have to have

this surgery. (We go for an MRI next week to see if any of the foot issues

might be associated with a retether.)

>

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