New to this group

[Guest guest]

HI, CONGRATULATIONS ON A SURGERY DATE. I TOO SUFFER FROM ANXIETY AND PANIC

ATTACKS BUT I HAVE TO SAY SINCE MY SURGERY THEY ALL BUT GONE. I AM ON KLONOPIN

AND PROZAC RIGHT NOW AND AT THE TIME OF SURGERY TOO. I AM ON A LOW DOSE NOW

THOUGH AND I THINK SOMEDAY I WILL BE OFF THEM ALTOGETHER, MAYBE EVEN THIS YEAR.

YOU NEED TO KEP TELLING YOURSELF YOU WILL BE FINE AT THE TESTS, YOU ARE IN

CONTROL OF YOURSELF. DON'T LET THE PANIC CONTROL YOU, YOU CONTROL THE PANIC. I

TOLD MYSELF THAT OVER AND OVER AND NOW I KNOW I AM IN CONTROL. IT IS A LONG ROAD

I KNOW, I HAVE HAD THESE SINCE 1990 AND THEY WERE SSOOO BAD I COULD NOT DRIVE

MY CAR, I GO ANYWHERES NOW, EVEN OUT OF TOWN ALONE, YEAH!!! YOU WILL TOO, HAVE

FAITH AND DON'T BE AFRAID TO TRY.

God Bless,

Robin, NorthEastern, NY

EDD- July 27th, 2004

IT'S A BOY!!!!!!

Mommy to:

&

(twin boys 7 1/2),

Madison, daughter, 5 years and

Wife to Pup 15 years (October 31, 1988)

Gastric Bypass Surgery-

October 18th 2002

Start-378, current- 246(pregnant)

goal 170 after baby

[Guest guest]

HI, CONGRATULATIONS ON A SURGERY DATE. I TOO SUFFER FROM ANXIETY AND PANIC

ATTACKS BUT I HAVE TO SAY SINCE MY SURGERY THEY ALL BUT GONE. I AM ON KLONOPIN

AND PROZAC RIGHT NOW AND AT THE TIME OF SURGERY TOO. I AM ON A LOW DOSE NOW

THOUGH AND I THINK SOMEDAY I WILL BE OFF THEM ALTOGETHER, MAYBE EVEN THIS YEAR.

YOU NEED TO KEP TELLING YOURSELF YOU WILL BE FINE AT THE TESTS, YOU ARE IN

CONTROL OF YOURSELF. DON'T LET THE PANIC CONTROL YOU, YOU CONTROL THE PANIC. I

TOLD MYSELF THAT OVER AND OVER AND NOW I KNOW I AM IN CONTROL. IT IS A LONG ROAD

I KNOW, I HAVE HAD THESE SINCE 1990 AND THEY WERE SSOOO BAD I COULD NOT DRIVE

MY CAR, I GO ANYWHERES NOW, EVEN OUT OF TOWN ALONE, YEAH!!! YOU WILL TOO, HAVE

FAITH AND DON'T BE AFRAID TO TRY.

God Bless,

Robin, NorthEastern, NY

EDD- July 27th, 2004

IT'S A BOY!!!!!!

Mommy to:

&

(twin boys 7 1/2),

Madison, daughter, 5 years and

Wife to Pup 15 years (October 31, 1988)

Gastric Bypass Surgery-

October 18th 2002

Start-378, current- 246(pregnant)

goal 170 after baby

[Guest guest]

Hi Robin,

I too sufer from Panic and Anxiety Attacks. I have had them since

1999 and have been on Paxil then switched to Paxil CR. I am waiting

for approval from Cigna but was curious if after surgery would I

still need the Paxil. I hope not but I do need it now!! Being in a

car was the worse and in a strange store was also a favorite.

Thanks, Carol

> HI, CONGRATULATIONS ON A SURGERY DATE. I TOO SUFFER FROM ANXIETY

AND PANIC

> ATTACKS BUT I HAVE TO SAY SINCE MY SURGERY THEY ALL BUT GONE. I AM

ON KLONOPIN

> AND PROZAC RIGHT NOW AND AT THE TIME OF SURGERY TOO. I AM ON A LOW

DOSE NOW

> THOUGH AND I THINK SOMEDAY I WILL BE OFF THEM ALTOGETHER, MAYBE

EVEN THIS YEAR.

> YOU NEED TO KEP TELLING YOURSELF YOU WILL BE FINE AT THE TESTS,

YOU ARE IN

> CONTROL OF YOURSELF. DON'T LET THE PANIC CONTROL YOU, YOU CONTROL

THE PANIC. I

> TOLD MYSELF THAT OVER AND OVER AND NOW I KNOW I AM IN CONTROL. IT

IS A LONG ROAD

> I KNOW, I HAVE HAD THESE SINCE 1990 AND THEY WERE SSOOO BAD I

COULD NOT DRIVE

> MY CAR, I GO ANYWHERES NOW, EVEN OUT OF TOWN ALONE, YEAH!!! YOU

WILL TOO, HAVE

> FAITH AND DON'T BE AFRAID TO TRY.

>

>

> God Bless,

> Robin, NorthEastern, NY

> EDD- July 27th, 2004

> IT'S A BOY!!!!!!

> Mommy to:

> &

> (twin boys 7 1/2),

> Madison, daughter, 5 years and

> Wife to Pup 15 years (October 31, 1988)

> Gastric Bypass Surgery-

> October 18th 2002

> Start-378, current- 246(pregnant)

> goal 170 after baby

>

>

>

[Guest guest]

Hi Robin,

I too sufer from Panic and Anxiety Attacks. I have had them since

1999 and have been on Paxil then switched to Paxil CR. I am waiting

for approval from Cigna but was curious if after surgery would I

still need the Paxil. I hope not but I do need it now!! Being in a

car was the worse and in a strange store was also a favorite.

Thanks, Carol

> HI, CONGRATULATIONS ON A SURGERY DATE. I TOO SUFFER FROM ANXIETY

AND PANIC

> ATTACKS BUT I HAVE TO SAY SINCE MY SURGERY THEY ALL BUT GONE. I AM

ON KLONOPIN

> AND PROZAC RIGHT NOW AND AT THE TIME OF SURGERY TOO. I AM ON A LOW

DOSE NOW

> THOUGH AND I THINK SOMEDAY I WILL BE OFF THEM ALTOGETHER, MAYBE

EVEN THIS YEAR.

> YOU NEED TO KEP TELLING YOURSELF YOU WILL BE FINE AT THE TESTS,

YOU ARE IN

> CONTROL OF YOURSELF. DON'T LET THE PANIC CONTROL YOU, YOU CONTROL

THE PANIC. I

> TOLD MYSELF THAT OVER AND OVER AND NOW I KNOW I AM IN CONTROL. IT

IS A LONG ROAD

> I KNOW, I HAVE HAD THESE SINCE 1990 AND THEY WERE SSOOO BAD I

COULD NOT DRIVE

> MY CAR, I GO ANYWHERES NOW, EVEN OUT OF TOWN ALONE, YEAH!!! YOU

WILL TOO, HAVE

> FAITH AND DON'T BE AFRAID TO TRY.

>

>

> God Bless,

> Robin, NorthEastern, NY

> EDD- July 27th, 2004

> IT'S A BOY!!!!!!

> Mommy to:

> &

> (twin boys 7 1/2),

> Madison, daughter, 5 years and

> Wife to Pup 15 years (October 31, 1988)

> Gastric Bypass Surgery-

> October 18th 2002

> Start-378, current- 246(pregnant)

> goal 170 after baby

>

>

>

[Guest guest]

Welcome, !

I hope you find this group to be as helpful as I do. I have had my

braces on since November 2003, and I just had my upper/lower/chin

surgery this past Tuesday.

I'm 30 and live in Austin, TX. Feel free to ask any questions you may

have!

>

> Hi everyone,

> I joined this group on Friday and have read with interest your posts

> over the last few days. I'm VERY early in my journey towards

> surgery...haven't even got my braces yet but thought it would be good

> to know as much as I could before I start. I'm 38 and living in

> Melbourne Australia and would like to hear of any other Melbournians

> that are members of this group.

>

>

> Melbourne

> Australia

[Guest guest]

Welcome, !

I hope you find this group to be as helpful as I do. I have had my

braces on since November 2003, and I just had my upper/lower/chin

surgery this past Tuesday.

I'm 30 and live in Austin, TX. Feel free to ask any questions you may

have!

>

> Hi everyone,

> I joined this group on Friday and have read with interest your posts

> over the last few days. I'm VERY early in my journey towards

> surgery...haven't even got my braces yet but thought it would be good

> to know as much as I could before I start. I'm 38 and living in

> Melbourne Australia and would like to hear of any other Melbournians

> that are members of this group.

>

>

> Melbourne

> Australia

[Guest guest]

Hi ,

Welcome to the group. Grace (love that name) will absolutely, positively,

without a doubt (in my opinion of course) need the DBB when she is finished

with the casting! It is my understanding that the relapse rate is 90%

without the use of the DBB and that is the last thing any of us want to see

happen to anyone.

Mommy to (12-17-98) and

Christian (1-30-04) LCF - DBB (nights only)

_____

From: lcaroland

Sent: Wednesday, January 19, 2005 10:00 AM

To: nosurgery4clubfoot

Subject: new to this group

hey! my name is and my 13 month old daughter, Grace, has just

had her surgery for the heel cord release and is on her last cast.

her doctor has been wonderful. she had a pretty severe case of

bilateral clubfoot. and he did casting at first then she went to the

DBB for 4 months and then he did the tendon release on her left foot

only at first. he thought her right foot would be ok. then changed

his mind her last visit and did the right foot release. but... he

does not recommend her going to the DBB for even only at night after

this last cast is removed. i think it may be important for her to

have the DBB for at least night time till she's 2-3 years old so to

reduce the risk of relapse. i have joined another board for clubfeet

and also wanted the opinion of this board. so any help would be

greatly appreciated. i have even thought of putting her in the DBB

myself without her dr's knowledge. the dbb is not covered under my

insurance anyways. any thoughts? thank you for listening and for

your time.

mommy to Grace 12-03-03 BCF

[Guest guest]

Hi ,

Welcome to the group!!! In order to avoid relapse she should

certainly wear the brace after her tenotomy. I am not sure of times

for an older, walking child who has just had the procedure, but

hopefully someone will be able to point you in the right direction.

Who is your doctor? It sounds like he may be practicing a form of

the Ponseti Method, but the full on, really fix the feet one. For

your guidance here is a link to the website on the Ponseti Method.

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html

There is also a list of certified doctors.

With regards to self prescribing FAB time. I did not agree with our

doctors prescribed times in the FAB (after reading much info here and

on Dr. P's website), so went to Dr. Ponseti via e-mail and explained

our treatment and asked for his advice. He comes back very quickly

(1-2 days in most cases). You could give that a try and see what he

says, his e-mail address is:

ignacio-ponseti@...

Also, I have not been there yet, but the folks here have set up

another group where shoes and bars are exchanged, etc., so that may

help you out. Hopefully someone will chime in with the group name.

Best of luck, ask lots of questions!

Louisa

Rachael 6-27-99

Zoe 2-22-04 RCF FAB 16/7

>

>

> hey! my name is and my 13 month old daughter, Grace, has just

> had her surgery for the heel cord release and is on her last cast.

> her doctor has been wonderful. she had a pretty severe case of

> bilateral clubfoot. and he did casting at first then she went to

the

> DBB for 4 months and then he did the tendon release on her left

foot

> only at first. he thought her right foot would be ok. then changed

> his mind her last visit and did the right foot release. but... he

> does not recommend her going to the DBB for even only at night

after

> this last cast is removed. i think it may be important for her to

> have the DBB for at least night time till she's 2-3 years old so to

> reduce the risk of relapse. i have joined another board for

clubfeet

> and also wanted the opinion of this board. so any help would be

> greatly appreciated. i have even thought of putting her in the DBB

> myself without her dr's knowledge. the dbb is not covered under my

> insurance anyways. any thoughts? thank you for listening and for

> your time.

> mommy to Grace 12-03-03 BCF

[Guest guest]

, you'll get alot of responses regarding your post and I'm not nearly as

educated about these things as some of the women here.. BUT, it doesn't seem to

me that your doctor is truly practicing the Ponseti Method. If he is, it

doesn't seem he has a real handle on the procedure or maybe your case was beyond

his expertise. Don't get me wrong I'm not trying to say anything negative about

your doctor but it doesn't appear the steps have been followed and I'd be very

concerned.

For Instance, the feet shouldn't be in the shoes unless they're fully corrected.

Second not being clear about whether to do the tenatomy, to me would be

worrisome, does he really know what he's looking for? Third, if your child had

a severe case of clubfeet not only should the shoes be worn after casts but may

even need to be worn for an extended amount of time. Is he sure her feet are

fully corrected? Fourth, still being in casts at the age of 13 months is again

eyebrow raising. I'd seriously be concerned about her treatment she's received.

Not to alarm or worry you but reading your post, my first thought were, oh no!!!

:-(

Where do you live and is your treating physician an " approved " Ponseti Dr.? Why

has treatment taken so long? Are you sure she doesn't have atypical clubfeet?

Do you have any pictures, if so you may want to send them to Dr P or visit

another Dr for a second opinion.

Sorry, I couldn't be more helpful or positive but you've definitely come to the

right place for answers and information. Even if it's not what you want to hear

at least you'll be more informed as to what questions you need to go back to

your doctor with. I'd start with " Why in tar-nations would you think she

wouldn't require the shoes?!? "

Sincerely,

lcaroland lcaroland@...> wrote:

hey! my name is and my 13 month old daughter, Grace, has just

had her surgery for the heel cord release and is on her last cast.

her doctor has been wonderful. she had a pretty severe case of

bilateral clubfoot. and he did casting at first then she went to the

DBB for 4 months and then he did the tendon release on her left foot

only at first. he thought her right foot would be ok. then changed

his mind her last visit and did the right foot release. but... he

does not recommend her going to the DBB for even only at night after

this last cast is removed. i think it may be important for her to

have the DBB for at least night time till she's 2-3 years old so to

reduce the risk of relapse. i have joined another board for clubfeet

and also wanted the opinion of this board. so any help would be

greatly appreciated. i have even thought of putting her in the DBB

myself without her dr's knowledge. the dbb is not covered under my

insurance anyways. any thoughts? thank you for listening and for

your time.

mommy to Grace 12-03-03 BCF

[Guest guest]

I forgot to paste the stuff I sent to the Dr. Duh! double late now!

Kori

To: msussman@...

Subject: Relapse related to Age with Ponseti Method - Bracing

*********************************************************************

" The doctors are still learning about relapses, what the odds are, and

how to determine when it is safe for a child to stop wearing the

brace. This is information I have from Dr. Morcuende from

earlier this year based on current studies: "

" The rate of relapse decreases with age until about 5-6 years of age.

Overall, the odds of relapse if no bracing is used whatsoever is

something like: <12 months = 80-90 %; <2 years: 60-70%; 3-4 years:

20%, 4-6 years; 1%. However, it is not possible to know in which

group a particular patient is in, so you have to treat everyone

cautiously. We are working on determining criteria that will help

indicate odds of relapse, but we have not found any reliable criteria

at this time. "

************************************************************************

At the recent Ponseti method clubfoot clinic at the U of Iowa, there

were a number of reprints of Ponseti method articles. One was on the

topic of the Treatment of Relapsing Clubfoot in the Ponseti method.

It was a printed version of a Lecture delivered at the DC National

Congress of the Italian Society of Pediatric Orthopaedics and

Traumatology, in Rome, Italy at October 2001 and printed in a 2002

issue of the Iowa Orthopedic Journal.

Iowa Orthopedic Journal: Volume 22, 55-56, 2002

RELAPSING CLUBFOOT: CAUSES, PREVENTION, AND TREATMENT, Ignacio V.

Ponseti

INTRODUCTION

" Regardless of the mode of treatment, the clubfoot has a strong

tendency to relapse. Stiff, severe clubfeet and small calf sizes are

more prone to relapse than less severe feet. Clubfeet in children

with very loose ligaments tend not to relapse. Relapses are rare

after four years of age. "

" Not all components of the clubfoot tend to relapse to the same

degree. In most of our cases, forefoot correction is permanent

without metatarsus adductus. The relapse of the cavus deformity is

rare and usually mild. The most important relapses occur in the

hindfoot, first in the equinus, and then in the heel varus. In some

relapsed clubfeet, the heel varus is very severe, while in others it

is mild. Rarely, the heel in equinus may go into valgus resulting in

a calcaneovalgus deformity. This is a frequent occurrence in

surgically treated clubfeet In our experience, most relapses develop

gradually and may be difficult to recognize in the early stages. A

relapse is detected when there is an appearance of a slight equinus

and varus deformity of the heel, most often without increased

adduction and cavus in the forefoot When walking, the child tends to

put more weight on the outside of the sole of the foot. "

CAUSES

" It is wrongly assumed that relapses occur because the deformity has

not been completely corrected. Actually, relapses are caused by the

same pathology that initiated the deformity. Therefore, when we

understand the pathogenesis of the clubfoot, the causes of the

relapse will become clear. "

" The clubfoot in otherwise normal children is a developmental anomaly

originating after the third month of intrauterine life. It is induced

by an unknown dysfunction in the posterior and medial aspects of the

lower leg, ankle and foot. There is a slight decrease in size of the

muscles, and an excess of colagen synthesis with retracting fibrosis

in the medial and posterior tarsal ligaments, in the deep fascia, the

tendo Achilles, and the posterior tibial tendon. These changes induce

severe equinus, medial displacement of the navicular, heel varus and

foot adduction. "

" The period of dysfunction causing the deformity starting in the

middle third of pregnancy lasts to the third or fourth year of life.

In mild cases, it may start in late fetal life, and remain active for

only a few months after birth. In all cases, the resulting fibrosis

is most pronounced from. a few weeks preceding birth, to a few months

after birth. This is the period when collagen accretion is greatest

in tendons and ligaments of normal mammals and presumably also of

man. The speed of growth of the foot decreases after the first year

of life, diminishing greatly after five years. "

" Relapses appear to be related to the intensity of collagen synthesis

as the foot grows. Thus, relapses occur swiftly in premature infants

and more slowly in older infants. Relapses are less common and less

severe in mild club feet with little fibrosis and in children with

loose ligaments. They occur because the factors inducing the

deformity are still active. Relapses are rare after four years of

age, regardless of whether the deformity is fully or partially

corrected. "

" The clubfoot is no different from other non-embryonic human

deformities such as torticoris, scoliosis, or Dupuytren's

contracture, in that it develops in normal individuals, and

progresses for a limited time before becoming inactive. Torticollis

usually develops within days after birth and increases for a few

weeks. Idiopathic scoliosis starts in late childhood and increases

throughout adolescence. Dupuytren's contracture develops at maturity

and may be active for a few years. Clubfoot develops in the middle of

pregnancy and is active during the first to fourth years of life. In

torticollis, Dupuytren's contracture, and presumably in clubfoot, a

localized temporary increase of collagen synthesis is a common

pathologic feature. "

" With our technique, most congenital clubfeet in infants are

corrected within four to six weeks. However, splinting for several

months or years is indispensable to help prevent relapses. Since the

main corrective force of the varus and adduction of the clubfoot is

abduction (external rotation) of the foot under the talus, a splint

is needed to maintain the foot in the same degree of abduction as it

was in the last plaster cast. This is best accomplished with the feet

in well-fitted, open-toed high top shoes with a well-molded heel

attached in 70 degrees external rotation to a bar of about the length

between the baby's shoulders. Unless the feet are sprinted in firm

external rotation, the pull of the retracting fibrosis in the

ligaments of the medial aspect of the ankle and of the tibialis

posterior and toe flexors is strong enough to cause a recurrence of

the deformity in most feet. "

" The splints are worn full time for two to three months, and

thereafter at night and naps for two to four years. The splint should

maintain the foot in 70 degrees of abduction to prevent relapse of

the varus deformity of the heel of the adduction of the foot and the

in-toeing. The ankle should be in dorsiflexion to prevent relapse of

the equinus. This is accomplished by bending the splint with the

convexity of the bar distally directed. A splint or strapping that

cannot firmly maintain the foot in marked abduction without pronation

is ineffectual. The added advantage of shoes attached to a bar, as

opposed to a fixed splint, is that it allows motion of the feet,

ankles and knees. Most babies feel uncomfortable for the first two to

three days when trying to kick their legs alternatively. Parents can

easily teach their babies to kick both legs simultaneously. The

splints are then well accepted. "

" In the first 20 years of my practice, relapses occurred in about

half of the patients at ages ranging from ten months to five years,

averaging two-and-one-half years. Usually, relapses were observed

from two to four months after the splints were prematurely discarded

at the families' own initiative, believing that the correction was

stable. More recently, relapses have been less frequent because, for

one thing, I have further overcorrected the deformity in the last

plaster and to be certain that the calcaneus is fully abducted and

its anterior joint surface is well under the head of the talus.

Secondly, there has been greater awareness on the part of the Parents

regarding the importance of maintaining the night splints after

correction for three to four years. "

" In recent years, I have treated 90 patients - 52 of them initially

seen from birth to three months of age, and 38 from three Months to

one year of age. Seventy Percent of the patients had plaster casts or

physical therapy elsewhere. Forty patients had been previously

indicated for surgery by the initial treating Physician. To my

surprise, it was possible to successfully correct all these feet with

manipulations, and four or five plaster casts, changed every five

days. I performed percutaneous Achilles tenotomy in 84 percent of the

patients. Eighty-eight percent of the patients were compliant with

the use of the foot abduction splint. There were 14 relapses. The

rate of relapse was seven percent in compliant patients, compared to

78 Percent in non-compliant patients. Relapses were unrelated to age

at presentation or to the number of casts required for correction. "

TREATMENT

" In general the original correction may be recovered in four to six

weeks with manipulations and plaster casts changed every 14 days,

holding the foot in marked abduction and as much dorsiflexion as

possible at the ankle in the last cast. This treatment is followed by

lengthening the tendo Achilles when dorsiflexion of the ankle is less

than 15 degrees. A percutaneous tenotomy can be performed until one

year of age. [More recently, Dr. Ponseti mentioned tenotomies done

later than one year, up to at least 18 months of age] The last

plaster cast is left on for three to four weeks. When the cast is

removed, shoes attached in external rotation to a bar are worn at

night and with naps, until the child is about four years old. "

" To prevent further relapses, the tendon of the tibialis anterior

muscle is transferred to the third cuneiform in children over two-and

one-half years of age, if this muscle tends to strongly supinate the

foot. Often this supination takes place when the medial naviculare

displacement is not fully corrected and the AP talocalcaneal angle is

under 20 degrees. Transfer of the tibiaiis anterior tendon averts

further relapses, maintains the correction of the heel varus,

improves the anteroposterior talocalcaneal angle, and thus greatly

reduces the need for medial release operations. The tibialis anterior

tendon transfer is an easy operation and much less damaging to the

foot than the release of the tarsal joints. Joint releases are needed

when the deformity recurs in spite Of the tibialis anterior transfer.

The tibialis anterior tendon should never be split so as to not lose

its eversion power, nor should it be transferred to the fifth

metatarsal or to the cuboid, since this would excessively evert the

foot, causing severe foot pronation and heel valgus. "

CONCLUSION

" Since I developed this method of treating clubfoot 50 years ago,

only an occasional posterior release operation of the ankle and

subtalar joints has been necessary. In the 90 patients I treated in

recent years, four patients required surgery: one posterior release

of the ankle, and three anterior tibialis tendon transfers to the

third cuneiform combined with a lengthening of the tendo Achilles. "

Lecture delivered at the DC National Congress of the Italian Society

of Pediatric Orthopaedics and Traumatology, in Rome, Italy, October

2001.

Department of Orthopaedic Surgery University of Iowa

[Guest guest]

,

I am chiming in here with those who are encouraging you to seek a second opinion

from Dr Dobbs in St Louis.

It sounds like your doctor is doing, at best, a very modified version of the

Ponseti method. It also sounds like your daughter's feet may be a little more

severe than most and, in any case, not responding the way your doctor is

expecting them to. From what you tell us, he has changed his mind a few times

along the way already.

Dr Dobbs is one of the most experienced doctors out there. He has been very

successful in treating " older " (over 12 months)children without surgery. He also

has a tremendous reputation as one of the best doctors for treating the

" a-typical " clubfoot.

In addition, since he practices at a Shriners hospital, treatment is provided

free of charge. This includes the DBB.

Here is some contact information for Dr Dobbs:

Dobbs, M.D.

Shriners Hospitals for Children

St. Louis Unit

2001 S. Lindbergh Blvd.

St. Louis, MO 63131-3597

Tel:

dobbsmatthew @ hotmail . com without the spaces

300 miles each way may seem far to travel to see a doctor(I know, we travel even

farther to for our son's treatment). An organization called Angel Flights can

help with travel. Many people here have used them.

http://www.angel-flights.org

I hope some of this helps. Please let us know if we can help you with anything

else.

All the best,

Naomi

The Family

Naomi Hannah(02/21/01) Jonah(06/20/03, bilateral clubfoot, FAB 14/7)

---------------------------------

lcaroland lcaroland@...> wrote:

hey! my name is and my 13 month old daughter, Grace, has just

had her surgery for the heel cord release and is on her last cast.

her doctor has been wonderful. she had a pretty severe case of

bilateral clubfoot. and he did casting at first then she went to the

DBB for 4 months and then he did the tendon release on her left foot

only at first. he thought her right foot would be ok. then changed

his mind her last visit and did the right foot release. but... he

does not recommend her going to the DBB for even only at night after

this last cast is removed. i think it may be important for her to

have the DBB for at least night time till she's 2-3 years old so to

reduce the risk of relapse. i have joined another board for clubfeet

and also wanted the opinion of this board. so any help would be

greatly appreciated. i have even thought of putting her in the DBB

myself without her dr's knowledge. the dbb is not covered under my

insurance anyways. any thoughts? thank you for listening and for

your time.

mommy to Grace 12-03-03 BCF

[Guest guest]

thank you so very very much. i have emailed dr dobbs with grace's story and

asked him opinion and asked if he thought she should see him for a consult or

treatment. i also emailed dr ponseti yesterday and am waiting to hear back. i

don't have the best support from my husband. he doesn't think i should seek

other treatment or 2nd opinions and thinks i am just trying to torture her. so i

would almost have to take the angel flight. driving 6 hours with a 13 month old

is almost impossible. so thank you for all the help and info. i will let you

know as soon as i hear back from either one. i am very nervous of the

response...

Here is some contact information for Dr Dobbs:

Dobbs, M.D.

Shriners Hospitals for Children

St. Louis Unit

2001 S. Lindbergh Blvd.

St. Louis, MO 63131-3597

Tel:

dobbsmatthew @ hotmail . com without the spaces

300 miles each way may seem far to travel to see a doctor(I know, we travel even

farther to for our son's treatment). An organization called Angel Flights can

help with travel. Many people here have used them.

http://www.angel-flights.org

lisa caroland

__________________________________________________

[Guest guest]

, hang in there, you'll be glad you got the second opinion. My husband

wasn't super supportive either went I wanted to go for a second opinion. Our

first doctor purported to know what he was doing also, but I was never

comfortable with him or the way he treated Aidan. I never saw him manipulate

the foot, just pull it and threw on a cast. My the time they were finished

casting him, he'd be soaking wet from head to toe and they'd just turn around

and walk out and I'd be there haveing to change his clothes and diaper by

myself. My husband thought he was fine and what really did I know.

Finally, after the second appointment I came home in tears. He kept telling me

Aidan would have severe cerebal palsey and his feet would be very difficult to

correct. In fact, he said we'd probably do about 9 cast then have to do a

tendon transfer! First, Aidan's neurosurgeron hadn't diagnosed him with cerebal

Palsey (and he's not even showing any signs of that). Second, I felt like he

was giving up before we got started. I'd probe him, probably a little too

relentlessly, but he always was very flippent and seamed defensive about how he

was doing the method. Finally my husband said well go get a second opinion

(which I would have done with or without his blessing). But he's also the time

that doesn't like to rock the boat or confrontation. I hit the ground running

and never looked back. Our second doctor was wonderful. He fixed Aidan's feet

in four casts and never mentioned surgery.

Long story short, you won't regret it. The peace of mind is worth every hour on

the road! :-)

Caroland lcaroland@...> wrote:

thank you so very very much. i have emailed dr dobbs with grace's story and

asked him opinion and asked if he thought she should see him for a consult or

treatment. i also emailed dr ponseti yesterday and am waiting to hear back. i

don't have the best support from my husband. he doesn't think i should seek

other treatment or 2nd opinions and thinks i am just trying to torture her. so i

would almost have to take the angel flight. driving 6 hours with a 13 month old

is almost impossible. so thank you for all the help and info. i will let you

know as soon as i hear back from either one. i am very nervous of the

response...

Here is some contact information for Dr Dobbs:

Dobbs, M.D.

Shriners Hospitals for Children

St. Louis Unit

2001 S. Lindbergh Blvd.

St. Louis, MO 63131-3597

Tel:

dobbsmatthew @ hotmail . com without the spaces

300 miles each way may seem far to travel to see a doctor(I know, we travel even

farther to for our son's treatment). An organization called Angel Flights can

help with travel. Many people here have used them.

http://www.angel-flights.org

lisa caroland

__________________________________________________

[Guest guest]

Hi ,

I am sure you will have peace of mind once you received replies from

Dr. Ponseti and Dr. Dobbs. If your husband was doing the research

and had the info you had maybe he would be more understanding. Even

if he doesn't, we are here for you! I hope Angel flights can help

you out. If not, is there anyone else who can travel with you?

It will all work out!

Louisa

> thank you so very very much. i have emailed dr dobbs with grace's

story and asked him opinion and asked if he thought she should see

him for a consult or treatment. i also emailed dr ponseti yesterday

and am waiting to hear back. i don't have the best support from my

husband. he doesn't think i should seek other treatment or 2nd

opinions and thinks i am just trying to torture her. so i would

almost have to take the angel flight. driving 6 hours with a 13 month

old is almost impossible. so thank you for all the help and info. i

will let you know as soon as i hear back from either one. i am very

nervous of the response...

>

>

>

> Here is some contact information for Dr Dobbs:

>

> Dobbs, M.D.

> Shriners Hospitals for Children

> St. Louis Unit

> 2001 S. Lindbergh Blvd.

> St. Louis, MO 63131-3597

> Tel:

> dobbsmatthew @ hotmail . com without the spaces

>

>

> 300 miles each way may seem far to travel to see a doctor(I know,

we travel even farther to for our son's treatment). An organization

called Angel Flights can help with travel. Many people here have

used them.

>

> http://www.angel-flights.org

>

>

>

> lisa caroland

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

I just wanted to add too, the driving is doable. We traveled with my

then 2 3/4 year old and my 7 month old to see Dr. Ponseti and for us

with the kids it was over 8 hours one way. We made the trips back to

back again in December now the kids are 15 months and 3. Bring new

toys...I went to the dollar store, bring a friend that can go with you

or parent or if hubby can get the time, and bring lots of munchies

and a cooler. There are a lot of parents who drive even further. It

can be done and if that's what needs to be done to get the best

treatment for your child do it. This is coming from someone who put

it off too long. Don't waste anymore precious time, go to whoever is

best for your child and get the help needed. Do whatever it takes.

Lord bless you,

atypical bl cf 10-09-03

> > thank you so very very much. i have emailed dr dobbs with grace's

> story and asked him opinion and asked if he thought she should see

> him for a consult or treatment. i also emailed dr ponseti yesterday

> and am waiting to hear back. i don't have the best support from my

> husband. he doesn't think i should seek other treatment or 2nd

> opinions and thinks i am just trying to torture her. so i would

> almost have to take the angel flight. driving 6 hours with a 13 month

> old is almost impossible. so thank you for all the help and info. i

> will let you know as soon as i hear back from either one. i am very

> nervous of the response...

> >

> >

> >

> > Here is some contact information for Dr Dobbs:

> >

> > Dobbs, M.D.

> > Shriners Hospitals for Children

> > St. Louis Unit

> > 2001 S. Lindbergh Blvd.

> > St. Louis, MO 63131-3597

> > Tel:

> > dobbsmatthew @ hotmail . com without the spaces

> >

> >

> > 300 miles each way may seem far to travel to see a doctor(I know,

> we travel even farther to for our son's treatment). An organization

> called Angel Flights can help with travel. Many people here have

> used them.

> >

> > http://www.angel-flights.org

> >

> >

> >

> > lisa caroland

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Hello all,

My name is and I am a brand new member to this group. Sorry

if my typing isn't the best, but I have extreme numbness and

tingling in my extremities. I am a single 39 yr old female from

Salt Lake City, Utah. I was just diagnosed with neurosarcoidosis on

December 22, 2006. I have been living with increasing numbness and

tingling in my extremities for almost a year now, not to mention

headaches, loss of balance, weakness, fatigue and what I call

the " bobblehead " (my neck wobbles on it's own at times). My

neurosurgeon and neurologist were unable to say if the mass in my

cervical spine was caused from MS, cancer, lymphoma or a sarcoid.

After much bloodwork, many MRI's, a brain scan, a spinal tap (ouch!

Never again!!!) and trying a 20-day taper of Prednisone, my

neurosurgeon and I decided the only way we could get a diagnosis was

by doing a surgical biopsy on my spinal cord (major surgery). This

was performed on December 20, 2006 and took 7 hours of surgery (my

poor surgeon). On December 22nd he came to my hospital room and

told me I had neurosarcoidosis...a sarcoid in my cervical spine.

I am so glad to finally have a diagnosis! My treatment started

several weeks after surgery, and started with 1000mg per day of

Solumedrol thru an IV for 3 days and then on the 4th day my

neurologist had me on a 25-day taper of prednisone starting with

80mg per day and working down to 10mg per day at the end. Then 2

days after I finished the prednisone, I had another MRI of my

cervical spine. My neurologist said it showed slight improvement of

the sarcoid which is good news, but I don't understand because

although the numbness went completely away in the middle of me

taking the Prednisone taper, it came back in about the last 7 to 10

days of being on it. So at the end of the Prednisone taper I felt

as bad as ever. I am now on day 3 of a 30-day RX of Prednisone

20mg, and I am still very numb and tingly, extremely fatigued, weak,

shakey and I still have the " bobblhead " thing happening.

I have an appt with another neurologist on March 22nd, and I have

been told that he has treated other patients with neurosarcoidosis.

I am very hopeful that he will try me on another form of treatment

with better results. Has anyone here been treated with a

Chemotherapy pill? My current neurologist mentioned it, and I am

wondering if it would be more helpful than the prednisone has been.

Does anyone out there have experience with a sarcoid in your

cervical spine, and have any particular treatments helped you more

than others?

Also, I have been at home on short-term disability from my job since

October 18, 2006 and am getting concerned that I will need to apply

for Social Security disability before much longer. Does anyone have

any advise on how best to go about doing this? Do I need to get a

lawyer involved to try to get the paperwork to go thru faster?

Any and all advise would be greatly appreciated!!!

Take care,

...the cat lady )

[Guest guest]

Hi , My name is Lynne, and I too have NS. As for your disability claim, yes, get a lawyer to get it over faster. The disability ppl say, that you need to disabled for a t least 1 year, but you can prove that this condition is permanent. Give them some help though, and write down every symptom that you have , when they started , and all of the dr.s that you have seen and all of their reports and diagnosis'. I am sorry that you have this darn disease, but I am glad that you have found this site as there are many ppl here with a wealth of knowledge. I am also on yahoo instant messenger, if you have this also, just add me and we can chat whenever you want. children8_2000, is my name on there. Keep in touch. Lots of Love Lynne wrote: Hello all,My name is and I am a brand new member to this group. Sorry if my typing isn't the best, but I have extreme numbness and tingling in my extremities. I am a single 39 yr old female from Salt Lake City, Utah. I was just diagnosed with neurosarcoidosis on December 22, 2006. I have been living with increasing numbness and tingling in my extremities for almost a year now, not to mention headaches, loss of balance, weakness, fatigue and what I call the "bobblehead" (my neck wobbles on it's own at times). My neurosurgeon and

neurologist were unable to say if the mass in my cervical spine was caused from MS, cancer, lymphoma or a sarcoid. After much bloodwork, many MRI's, a brain scan, a spinal tap (ouch! Never again!!!) and trying a 20-day taper of Prednisone, my neurosurgeon and I decided the only way we could get a diagnosis was by doing a surgical biopsy on my spinal cord (major surgery). This was performed on December 20, 2006 and took 7 hours of surgery (my poor surgeon). On December 22nd he came to my hospital room and told me I had neurosarcoidosis...a sarcoid in my cervical spine. I am so glad to finally have a diagnosis! My treatment started several weeks after surgery, and started with 1000mg per day of Solumedrol thru an IV for 3 days and then on the 4th day my neurologist had me on a 25-day taper of prednisone starting with 80mg per day and working down to 10mg per day at the end. Then 2 days after I finished the

prednisone, I had another MRI of my cervical spine. My neurologist said it showed slight improvement of the sarcoid which is good news, but I don't understand because although the numbness went completely away in the middle of me taking the Prednisone taper, it came back in about the last 7 to 10 days of being on it. So at the end of the Prednisone taper I felt as bad as ever. I am now on day 3 of a 30-day RX of Prednisone 20mg, and I am still very numb and tingly, extremely fatigued, weak, shakey and I still have the "bobblhead" thing happening.I have an appt with another neurologist on March 22nd, and I have been told that he has treated other patients with neurosarcoidosis. I am very hopeful that he will try me on another form of treatment with better results. Has anyone here been treated with a Chemotherapy pill? My current neurologist mentioned it, and I am wondering if it would be more helpful than the

prednisone has been.Does anyone out there have experience with a sarcoid in your cervical spine, and have any particular treatments helped you more than others?Also, I have been at home on short-term disability from my job since October 18, 2006 and am getting concerned that I will need to apply for Social Security disability before much longer. Does anyone have any advise on how best to go about doing this? Do I need to get a lawyer involved to try to get the paperwork to go thru faster?Any and all advise would be greatly appreciated!!!Take care,...the cat lady )

To My New Family

Love Lynne

8:00? 8:25? 8:40? Find a flick in no time with theYahoo! Search movie showtime shortcut.

[Guest guest]

Hello ,

I am so sorry that we have to meet this way. I can identify with everything you said. My name is and I was diagnosed neurosarcoidosis 12 years ago. I continue to experience every symptom you mentioned, especially the "BOBBLE HEAD SYNDROM", very cute name for a not so cute condition. It shows you have good humor through all of this.

I am a 47 year old African American male that retired and applied for Social Security Disability six years ago. I was approved on my first submission. I was blessed by this occurrence. I applied after quitting my job when my short term disability expired. Fortunately, my employer had a long term disability program as well. Check and see what your employer offers. Read your new hire materials from Human Resources to see what your options are at work. Make sure your cover all your basis before you make a permanent decision regarding your employment status.

When I read your post I felt a special connection because December 22 is my birthday. Has been for the past 47 years now. After reading that and all the other things that are similar I felt like I had to respond to your questions and concerns.

I think your tapering may have been to quick. Having an MRI a few months afterwards is not very beneficial. Perhaps a year after the treatment would have been more significant. The treatment should have lasted longer in my opinion, taking the oral Prednisone.

I am still on Prednisone, 6 mg per day. I am also on Methotrexate injections once a week. I am hoping and praying that it is helping. My sarc is in my spinal cord and brain. All my cranial nerves are affected as well.

So, that makes me a MAJOR BOBBLE HEAD!

Please keep in touch. The website is very supportive with a lot of knowledgeable and compassionate members. I will be here to answer your questions if I can as well as the moderators and other members.

Your new friend,

BOBBLE HEAD Check out free AOL. Most comprehensive set of free safety and security tools, millions of free high-quality videos from across the web, free AOL Mail and much more.

[Guest guest]

Hi ,

You found the right place, and much of your story is the same as many of ours.

There are several combinations of medications that can help with NS.

Since you are on prednisone-- and the taper only worked in the short term-- (which is normal)-- your MD's might want to consider one of the immunosupressants. Imuran, Methotrexate, Plaquenil, Arava, and the BRM's--Biological Response Modifiers, Remicade, Enbrel, and Humira are all showing signs of helping.

I've had sarc (pulmonary, eyes, systemic, bone and lymphatic) for about 17 yrs now.

My story is similar in that I originally did high dose prednisione and tapered over a 2yr period, and basically was in remission for about 5 yrs. The sarc then came back, eyes and lungs-- but had also gone systemic. I have the severe sarcoid-induced arthritis, and my lymphs feel like marbles.

They put me back on prednisone and that was not a good thing for me. Eventually, I ended up on Imuran, and for me, it was too hard on my liver. so my Rheumi put me on Plaquenil, then added Methotrexate and eventually we added Remicade. (Check the ARCHIVES AND LINKS--SCROLL DOWN, THE LINK IS AT THE BOTTOM OF THIS AND EVERY EMAIL)

For me, this combination has worked well. For several others-- they weren't able to handle the Remicade.

The fatigue (exhaustion way beyond fatigue), the short-term memory loss, the bone and muscle pain, the inability to multi-task and problem solve, made it impossible for me to continue to work.

If you're finding that your short-term disability is becoming long-term-- you will want to start the SSDI when you've been out for 6 months. It generally takes a year or so to get approved. Many will suggest that you get an attorney from the start-- for me, it wasn't necessary.

My MD's explained that my NS was very similar to MS-- with the fatigue, loss of muscle control, dementia= etc.

They described it as having Peripheral Neuropathy, Dementia, Rheumatoid Arthritis, and Ms all in one. The neuropsych testing showed that I had severe brain involvement, although my scans do not show any problems.

This is actually part of the problem, many of NS patients have clear scans--- but the systemic vasculitis (inflammation of the blood vessels) puts pressure on areas of the brain and you get all the symptoms- but no cut and dry pictures.

Again, in our ARCHIVES and LINKS-- we have many many posts on these subjects.

Sites I recommend are Foundation for Sarcoidosis Research- FSR www.stopsarcoidosis.org and www.arthritis.org.

The FSR site is part of Dr. Om Sharma- a pulmonologist who has spent his career working to find a cure for sarc. I had the pleasure of meeting him when I went thru a Clinical Study for Remicade at USC LA. It was there that I got the medication that has stopped the progression of my disease.

The Arthritis site has a drug issue that they produce, that explains the different drugs and how they work, along with the potential side effects.

I know this is scary, and that it can be overwhelming at times. Know that you can ask questions, voice concerns, whatever--- and that we will do what we can to help you find answers.

We are now over 400 members-- and growing! If we don't get back to you in a day or so-- be patient, we too have this disease, and even with 2 owners and 4 moderators- we end up tag teaming as to who is doing ok on any given day.

Welcome to the gang,

Sincerely,

Tracie

NS co-owner/moderator

************************************** Check out free AOL at http://free.aol.com/thenewaol/index.adp. Most comprehensive set of free safety and security tools, millions of free high-quality videos from across the web, free AOL Mail and much more.

[Guest guest]

Hi

, and welcome to a very informative “family of sarcoidians”

you will find a lot of support and information, and everyone here are great and

beyond. We all have Sarcoid in different levels.

I can

help with the, does anyone know anything about the chemo drug. I have had

Sarc for going on 13 years, in and out of remission until about 6 years ago,

the wham hit me neuro and active since. I was on prednisone for 3 years, not

fun, then I finally started Methotrexate (chemo drug), once a week and this helped

me get off the prednisone, and I am very happy about that, I also take an immune

suppressant drug plaquanil along with the methotrexate, I have been doing well

up until this very nasty “cold” winter we have been having, then

the neuro symptoms returned. My doc a pulmonologist had me see a

neurologist, I saw him yesterday, he was very nice and pretty informative, he

wants me to do an MRI, so will do that on thurs and recheck with him next

week. Sorry you had to find us, but welcome to a great bunch of

people! Marla

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From:

Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of

Sent: Tuesday, February 20, 2007

12:19 AM

To:

Neurosarcoidosis

Subject: New to

this group

Hello all,

My name is

and I am a brand new member to this group. Sorry

if my typing isn't the best, but I have extreme numbness and

tingling in my extremities. I am a single 39 yr old female from

Salt Lake City, Utah. I was just diagnosed with

neurosarcoidosis on

December 22, 2006. I have been living with increasing numbness and

tingling in my extremities for almost a year now, not to mention

headaches, loss of balance, weakness, fatigue and what I call

the " bobblehead " (my neck wobbles on it's own at times). My

neurosurgeon and neurologist were unable to say if the mass in my

cervical spine was caused from MS, cancer, lymphoma or a sarcoid.

After much bloodwork, many MRI's, a brain scan, a spinal tap (ouch!

Never again!!!) and trying a 20-day taper of Prednisone, my

neurosurgeon and I decided the only way we could get a diagnosis was

by doing a surgical biopsy on my spinal cord (major surgery). This

was performed on December 20, 2006 and took 7 hours of surgery (my

poor surgeon). On December 22nd he came to my hospital room and

told me I had neurosarcoidosis...a sarcoid in my cervical spine.

I am so glad to finally have a diagnosis! My treatment started

several weeks after surgery, and started with 1000mg per day of

Solumedrol thru an IV for 3 days and then on the 4th day my

neurologist had me on a 25-day taper of prednisone starting with

80mg per day and working down to 10mg per day at the end. Then 2

days after I finished the prednisone, I had another MRI of my

cervical spine. My neurologist said it showed slight improvement of

the sarcoid which is good news, but I don't understand because

although the numbness went completely away in the middle of me

taking the Prednisone taper, it came back in about the last 7 to 10

days of being on it. So at the end of the Prednisone taper I felt

as bad as ever. I am now on day 3 of a 30-day RX of Prednisone

20mg, and I am still very numb and tingly, extremely fatigued, weak,

shakey and I still have the " bobblhead " thing happening.

I have an appt with another neurologist on March 22nd, and I have

been told that he has treated other patients with neurosarcoidosis.

I am very hopeful that he will try me on another form of treatment

with better results. Has anyone here been treated with a

Chemotherapy pill? My current neurologist mentioned it, and I am

wondering if it would be more helpful than the prednisone has been.

Does anyone out there have experience with a sarcoid in your

cervical spine, and have any particular treatments helped you more

than others?

Also, I have been at home on short-term disability from my job since

October 18, 2006 and am getting concerned that I will need to apply

for Social Security disability before much longer. Does anyone have

any advise on how best to go about doing this? Do I need to get a

lawyer involved to try to get the paperwork to go thru faster?

Any and all advise would be greatly appreciated!!!

Take care,

...the cat lady )

[Guest guest]

Hi . Sorry to hear about your illness. Happy you found us.

As others have mentioned, your story is so familiar. And prednisone

tapers need to go slowly. Some doctors just want to rush it, but until

you are on another medication that replaces it, your symptoms will

simply come back when you get to too low a dose. I have found that

tapering every other day works best. In other words, keep the same

dose on day 1, taper on day 2. The lower your dosage gets, the slower

the taper you need. For example, I am now on 19 mg day 1, 0 mg day 2.

I will be tapering 1 mg every 10 days. So 10 days from now I will take

18 mg day 1, and 0 day 2. I started at 120 mg each day and have been

tapering since April, 2006. And everyone is different. There is no

magic number when it comes to what dosages work for you. But if you

have symptoms, your dose is too low.

After many years, and different drugs I am now tapering off prednisone

and receive Remicade and Imuran. I've seen some improvement. It will

be another 4 months or so of Remicade to know if that is the best

option for me.

On anther note - for insurance purposes and to help yourself, keep

careful records. Ask for copies of all doctor reports, test results,

etc... That way when you see a specialist you can bring it all with

you. Sometimes your records aren't at the new doctor's office and it

can save lots of headaches of you have the info with you. Keep a

journal of your medications, dosages and symptoms. This can be very

handy when talking to your doctor. Good luck.

-