(unknown)

July 12, 2004

At 10:17 PM 7/12/2004 +0000, you wrote:

>Was it difficult to remember and abide by all the dos and donts

>during recovery? E.g don't twist or lean forward past 90 degrees to

>legs, don't cross legs, don't let operated leg pass the mid line

>etc! I'm worried that I will forget! How was the physio? When were

>you able to return to work? How did you find using a bath

>board, raised chair etc? IS IT ALL WORTH IT????!!!

Jacqui,

It really wasn't difficult to remember. My new hip (and whole leg for that

matter) felt like a foreign object, not really part of me yet, so I was

very conscious of every little move I made. Kind of like going from your

car to a stranger's truck...you know how to drive it, but everything feels

different, and everything is in a different place.

I went back to work after two weeks (desk job), worked another two weeks,

then had the second one done. I went back to work 1/2 time after three

weeks, did that for a week, then was back to full time at week

four. Definitely NOT back to full energy--that took another couple of

months, but I managed. I also only missed a couple of rehearsals--I sing

in one choir, ring in another professional group, and conduct another choir.

I borrowed a motorized recliner that boosts you out of it, and made a

platform for under my desk chair. I never bought or used a shower chair or

bathboard as my bathroom is too small, and I never would have been able to

get in.

Is it all worth it?? Absolutely!!!!! I went from barely being able to

walk across the street to hiking up Multnomah Falls this past

Saturday. And I'm still improving even after three years. No regrets at

all, nothing that I would have done differently.

Cindy

C+ 5/25/01 and 6/28/01

July 18, 2004

In a message dated 7/15/2004 9:14:32 PM Eastern Daylight Time,

max56537@... writes:

We would not allow a dog to be treated like this yet we allow

ourselves to be mistreated by the medical and insurance industry. We

should make the lives of the people who hinder effective treatment

as uncomfortable as they have made ours!

The only things we have to loose are our canes, crutches and gimpy

gaits.

I am a physician and do wish that surface replacement were finally truly

recognized in this country. My own orthopedist does total hips, but thought I

was

an excellent candidate for resurfacing and said he would do everything in his

power to support me.

He told me that about 30 years ago, he was taught this in his residency but

they failed...due to in appropriate materials.

Fortunately, he is the kind of orthopedist that is there for his patients (if

I were not a physician, I would be treated the same way);

There are some good guys around.

Diane

September 20, 2004

Just had to reply to this.

Wong is the gentleman who started The Smile Train and the company is

Computer Associates Inc. I only know this because I worked for Computer

Associates for 6 years. I left after having my second daughter.

The Smile Train was a very important project to Mr. Wong. We were always

keep informed on what was going on with the project. Too bad Mr. Wong is no

longer in charge at CA, I might have been able to find some contacts there

that could help a clubfoot organization.

Carolyn mom to Bruce (bcf 11-17-02)

Re: Oprah Winfrey Re: Clubfoot/Ponseti method press kit

>

> I know it was a long shot & I'm sure I didn't use the right channels & I'm

> sure

> I should have addressed this group first but I actually sent an email to

> Oprah

> last week regarding the Ponseti Method.

>

> I've spent the last two months at the hospital everyday and because my

child

> is

> in the NICU we've talked to a multitude of people in our situation & I can

> tell

> you the majority haven't heard of the Ponseti Method. I met a nurse who's

> son,

> at 7 has now had 3 surgeries and is in constant pain. She has to massage

> his

> feet every night. I started to cry, she had never heard of the Ponseti

> method.

> Unfortunately for her son the damage has already been done.

>

> I was so sad & frustrated when I got home that nobody seems to know about

> this

> method or if they've heard of it they poopoo it!!! For some reason I just

> logged onto the Oprah website and started writing. Tonight I logged on to

> ask

> everyone in this group to start writing to her, send a letter or email

every

> day, but coincidently it appears you have a better game plan. Please let

me

> know whatever I can do to help. Also, I hope I haven't done anything to

> hurt.

>

> _________________________________________________________________

> FREE pop-up blocking with the new MSN Toolbar - get it now!

> http://toolbar.msn.click-url.com/go/onm00200415ave/direct/01/

>

October 4, 2004

Hi Jen,

Welcome to the group. My son is also , nice name!! Dr Pirani

is apparently wonderful, Dr Ponseti speaks very highly of him. He is

passionate about the Ponseti Method and Dr Ponseti and is one of the

doctors involved in training doctors in developing countries like

Uganda, India, etc. My husband spoke to him when we were investigating

the Ponseti method in March last year, and he seemed to be a very caring

doctor.

Regarding keeping them warm when they sleep, we put in

footless 'babygro's', as we call them in South Africa. I don't know

what they're called in Canada, I suppose 'sleepers'? They're not as

common as the footed ones, so if you can't find them in the shops, you

could try cutting off the foot section like some others have done.

We find it impossible to keep a blanket on , so we use baby

sleepsacks. I like the ones from Halo, you can buy them online and they

go right up to XL, which is for 2 year olds - most of the other brands

are only for tiny babies. They're available in both fleece and cotton

so you can use them winter and summer. They're very good quality, you

can wash them often and they still look the same. When sleeps in

one, we just put him in either a long-sleeved or short-sleeved vest or

even a T-shirt and his socks and Markell shoes. The sleepsacks cover

him so well that's all he needs. Here's their website:

http://www.halosleep.com/product_listing.cfm

Hope this helps.

and

24 Jan 2003

www.clubfoot.co.za

(unknown)

Hi Everyone my name is Jen my son has bileteral clubfoot

and he went through all the Ponseti castings and is now in the boots

and bar(markell)shoes he's 2 1\2months old and doing well.I was just

wondering if anybody sees DR PIRANNI at ROYAL COLUMBIAN HOSPITAL B.C.

CANADA.And also what do your babies sleep in to keep warm if sleepers

dont work and finding the right kinds of clothing.

THANK YOU

November 9, 2004

LOL! Thanks! I can't wait to see him do it again! We had hm walking back and

forth between us, just a few steps but he was doing it! I'm so excited!

s.

AWESOME AWESOME AWESOME!!!!!! THANK YOU LORD!!! WAY TO GO BUDDY!!!

Hahahahah, soon it will be a whole new realm for you!!!! HOW

FABULOUS!!!!

> EVERETT TOOK SOME STEPS ON HIS OWN TODAY!!!!!!!!!!!

>

> s.

>

November 9, 2004

That is sooooooooooo great! Go Go Everett!!!! You will have to get

this on video!!

- & Grace

> > EVERETT TOOK SOME STEPS ON HIS OWN TODAY!!!!!!!!!!!

> >

> > s.

> >

November 10, 2004

Ha! You're a nut but I appreciate all of your well wishes about this! He

doesn't have a lot of confidence yet in stepping but over the past week ? he's

really gained confidence to stand un-assisted. We have a little cat toy (stick

with a string); he stood up playing with the cat quite a while today, trading

the toy between his hands and stuff.

s.

Wow...that's wonderful news. I sort of have the butterfly feeling in

my stomach. HaHa!

KK

> EVERETT TOOK SOME STEPS ON HIS OWN TODAY!!!!!!!!!!!

>

> s.

>

June 24, 2005

There are 3 main preps for colonoscopies. The gallon - GoLitely. Fleet

Phospho Soda - about 3 oz. And Visicol tablets.

Priscilla A. Savary

Executive Director

Colorectal Cancer Network

PO Box 182, Kensington MD 20895

psavary@...

www.colorectal-cancer.net

_________

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(unknown)

A question please.

Why does one have a colonoscopy and have to drink the awful solution.

Would it be appropriate to have a PET and/or CT scan which is a lot less

painful. However, I do want to do what is best to determine if there is a

cancer. Also, would blood work show the cancer.

Thank you - Bonnie

June 30, 2005

Carmen

I have received your first post. Sometimes Yahoo is slow in getting

them to the list. It shouldn't take more than a day. Are you set up

for individual posts?

laurie

> I just joined the group. I have replied to three messages. But they

> are not posted. How do i check messages to me? Are all messages

> posted? I sure could use some help.I log on by going to yahoo.com

> after that I go to groups and see some posted messages. Is their

> something else I need to do? The replies I have sent are not posted.

> Please help. Carmen

>

> Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

June 30, 2005

delores,

great news on the biopsies. keep plugging.

kent

> I have an ID for the chat room and I can get in on that, when I

remember due to the time difference. The same with my Grandaughter in

Florida, I do great calling relatives on the West Coast. A friend of

mine from India who is a computer programmer set up my computer for me,

I think at some time or other, some way or other I saw where there was

a different kind of post, but beats me how I got there or why I was in

there? I do have some WONDERFUL NEWS both of my biopsies came back NON-

CANCEROUS!!

July 1, 2005

I also would like to say that is great news Delores on your biopisies.

Donna K

---- kent thegaffer23@...> wrote:

> delores,

> great news on the biopsies. keep plugging.

> kent

>

> > I have an ID for the chat room and I can get in on that, when I

> remember due to the time difference. The same with my Grandaughter in

> Florida, I do great calling relatives on the West Coast. A friend of

> mine from India who is a computer programmer set up my computer for me,

> I think at some time or other, some way or other I saw where there was

> a different kind of post, but beats me how I got there or why I was in

> there? I do have some WONDERFUL NEWS both of my biopsies came back NON-

> CANCEROUS!!

>

> Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

July 1, 2005

I also would like to say that is great news Delores on your biopisies.

Donna K

---- kent thegaffer23@...> wrote:

> delores,

> great news on the biopsies. keep plugging.

> kent

>

> > I have an ID for the chat room and I can get in on that, when I

> remember due to the time difference. The same with my Grandaughter in

> Florida, I do great calling relatives on the West Coast. A friend of

> mine from India who is a computer programmer set up my computer for me,

> I think at some time or other, some way or other I saw where there was

> a different kind of post, but beats me how I got there or why I was in

> there? I do have some WONDERFUL NEWS both of my biopsies came back NON-

> CANCEROUS!!

>

> Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

April 4, 2006

I have been suffering from neurosarcoidosis symptoms since 2003. I

have been on prednisone and many other pain medication and as soon as

they wean me off they come right back. I am trying to get SSI but am

finding it quite hard. I have to get a lawyer to try to get medical

help that I need since I have not worked steadily since 2003 and I

still need to see my doctors. Does anyone have any other advice for

me? I am tired of getting the run around. I need some treatment. At

the moment it is affecting my back, eyes, and memory.

First--you definately need more than just prednisone. With systemic or Neurosarcoidosis, it generally takes a combination of medication- immunosupressants to stop the progression of the disease.

Imuran, Methotrexate, Plaquenil, Remicade, Humira, Enbrel, are just a few of the choices.

IF you are light sensitive--get into the Ophthalmologist (MD)--not the Optometrist (OD). OD's are great for glasses or contacts- but don't have the knowledge of eye diseases to the extent that the MD does. You would need Pred Forte drops and Homatropine to keep the eyes dilated to keep from ending up with glaucoma--and loose of vision.

The back and joint pain, can be helped with the immunosupressants, but you'll need anti-inflamatories also. Motrin helps as does many of the other anti-=inflamatories.

Go to WWW.ARTHRITIS.ORG AND CHECK OUT THE DRUG REFERENCE GUIDE--IT HAS ALL the catagories of meds for inflamatory diseases.

In our LINKS and ARCHIVES --THE site address should be at the bottom of this and every email that comes from the group-- and there is a wealth of information there.

As far as the disability--you'll probably need Neuropsych Testing to prove the NS and that it's effecting the brain. This testing is more question answer/geometric puzzles, and memory recall-- but it all tells the pros that there is problems that can't be seen on CT's or MRI's. Each test makes a certain part of the brain work, so if there is any deficit--it'll show up there.

Do you have a proven sarc diagnosis with biopsy? Once you've got that, then all the arthritis, dementia, memory, bone and joint pain can pretty much be explained as secondary to the sarc.

As sarc progresses, it ends up scarring the organs--so they don't work properly. so even if there is no active disease--the remnants of things past can cause problems years later.

I'm glad you've got an attorney to help you with the SSDI. Be sure to keep any appts they set up, and to describe your disease--at least for me-- I explained it as taking "MS, Dementia, Rheumatoid Arthritis, Peripheral Neuropathy" and wrapping them all in one package. Not that I have MS-- but it's so very similar--they got the picture.

Hope this helps,

Tracie

NS Co-owner/moderator

PS. WE too have the crummy disease, so if we don't get back immediately, give us a day or so-- we are all in flare right now-- so we're a bit behind. Welcome to the family--we are all in this together--and no question is too dumb to ask.

April 4, 2006