new to group

April 9, 2003

Angleflights.com has a free flight to any small airport if that helps you to

get to Iowa.

These are smaller aircrafts that are owners owned that donate thier time and

planes to get people to hospitals in U.S. Hope that helps, Kathy

April 9, 2003

Hi, Shari,

Welcome to the group. I'm so glad you are able to take your baby to

Iowa. Just wanted to say quickly that we are among the ones whose

child had an unsuccessful tenotomy during initial treatment. Dr.

Ponseti was able to work around it. He accomplished correction with

three casts, and didn't need to repeat the tenotomy.

I remember the same feeling of disappointment when the post-tenotomy

cast came off. That's when we started looking into going to Iowa. Our

daughter was about the age of your son when we went. She is now

almost 3 yrs old and doing great. Her foot looks beautiful. It can

even be confused with her normal one.

You are likely to see a remarkable improvement after even the first

cast in Iowa. You will not be sorry you made the trip.

and

> Hi. My name is Shari and my husband and I have a son with a right

> clubfoot. He is 13 1/2 weeks old. After his first cast, our son

> developed a reaction to the material they use to keep the cast from

> slipping. He had an awful sore that took 3 weeks to heal. We

couldn't

> cast him for that time. Once we started casting him, we started

> seeing drastic improvement in his foot. Our ortho said he needed

the

> tenotomy to complete the process. He had the tenotomy 3 weeks ago

> tomorrow. After a week my husband thought the cast had slipped, so

he

> called the ortho. The ortho didn't seem concerned so he didn't have

> us come in to check it. 2 days later it had really slipped so I

> called and he still didn't see us for 4 days. Anyhow, his foot had

> slipped so the ortho decided to take him out of the cast and put a

> new one on. When he took the cast off, our son's foot was swollen,

> his leg was red, and here's the worst part-his foot didn't look

> corrected. So the ortho decided not to recast him (he was afraid

his

> skin was too sensitive).He told us to get the DBB and put him in

that

> in the hopes that it would stretch his foot out. He said if that

> didn't work, he would recast him and would maybe have to do surgery

> (posterior medial release) if that didn't work. I was shocked. I

had

> been doing research(I joined the clubfoot board, then found this

> board) on the Ponseti method and knew that the posterior medial

> release should rarely be done.I am really against having surgery

done

> until all other non-surgical means have been exhausted. I really

> don't know if it's the ortho's fault or not that our son's foot

> wasn't corrected and his skin was irritated, but we went a week

with

> a slipped cast!I don't have as much confidence in the ortho now. So

> now my husband and I decided to see Dr. Ponseti to get a 2nd

opinion.

> We have an appt for next Friday. I just hope he can get our son's

> foot corrected. Has anyone else had the tenotomy before they saw

> Dr.Ponseti, and if so, was he still able to correct their child's

> foot? Also, any advice for traveling (we live in Ohio) and for

> staying in Iowa would be appreciated.

> Thanks,

>

> Shari

April 9, 2003

Hi, Shari,

Welcome to the group. I'm so glad you are able to take your baby to

Iowa. Just wanted to say quickly that we are among the ones whose

child had an unsuccessful tenotomy during initial treatment. Dr.

Ponseti was able to work around it. He accomplished correction with

three casts, and didn't need to repeat the tenotomy.

I remember the same feeling of disappointment when the post-tenotomy

cast came off. That's when we started looking into going to Iowa. Our

daughter was about the age of your son when we went. She is now

almost 3 yrs old and doing great. Her foot looks beautiful. It can

even be confused with her normal one.

You are likely to see a remarkable improvement after even the first

cast in Iowa. You will not be sorry you made the trip.

and

> Hi. My name is Shari and my husband and I have a son with a right

> clubfoot. He is 13 1/2 weeks old. After his first cast, our son

> developed a reaction to the material they use to keep the cast from

> slipping. He had an awful sore that took 3 weeks to heal. We

couldn't

> cast him for that time. Once we started casting him, we started

> seeing drastic improvement in his foot. Our ortho said he needed

the

> tenotomy to complete the process. He had the tenotomy 3 weeks ago

> tomorrow. After a week my husband thought the cast had slipped, so

he

> called the ortho. The ortho didn't seem concerned so he didn't have

> us come in to check it. 2 days later it had really slipped so I

> called and he still didn't see us for 4 days. Anyhow, his foot had

> slipped so the ortho decided to take him out of the cast and put a

> new one on. When he took the cast off, our son's foot was swollen,

> his leg was red, and here's the worst part-his foot didn't look

> corrected. So the ortho decided not to recast him (he was afraid

his

> skin was too sensitive).He told us to get the DBB and put him in

that

> in the hopes that it would stretch his foot out. He said if that

> didn't work, he would recast him and would maybe have to do surgery

> (posterior medial release) if that didn't work. I was shocked. I

had

> been doing research(I joined the clubfoot board, then found this

> board) on the Ponseti method and knew that the posterior medial

> release should rarely be done.I am really against having surgery

done

> until all other non-surgical means have been exhausted. I really

> don't know if it's the ortho's fault or not that our son's foot

> wasn't corrected and his skin was irritated, but we went a week

with

> a slipped cast!I don't have as much confidence in the ortho now. So

> now my husband and I decided to see Dr. Ponseti to get a 2nd

opinion.

> We have an appt for next Friday. I just hope he can get our son's

> foot corrected. Has anyone else had the tenotomy before they saw

> Dr.Ponseti, and if so, was he still able to correct their child's

> foot? Also, any advice for traveling (we live in Ohio) and for

> staying in Iowa would be appreciated.

> Thanks,

>

> Shari

August 25, 2004

Hi Everyone,

I am new to the group and first of all I would like to say I'm sorry

to all of you have lost someone precious to you and for those who are

fighting this cancer you have my thoughts and prayers. I will be

thinking of all of you everyday and praying for you.

I do not have Colon Cancer but I had polyps in 1993 and if I had

ignored the symptoms any longer than I did then I would have had it.

However in Oct.of 1993 my older brother was diagnosed with Stage IV

Colon Cancer with Metasis to the Liver. In May of 1994 we were told

there was nothing more that could be done for him however my brother

wouldn't accept this so he contacted Westchester Medical Center in

Westchester NY and they agreed to see him. I'm not sure just exactly

which drugs they used on him but I know he had to sign some sort of

consent so they could use experimental drugs and therapies on him. We

had an extra 5 months with him but sadly he passed away in Nov. 1994.

In 2002 I lost two very dear uncles to Colon Cancer within 6 weeks of

each other. My one uncle was diagnosed in 1995 after my brother

passed away and thanks to treatment we had 7 yrs with him. His death

didn't have to happen though because he waited until it was too late

even though he knew the sign and symptoms and watched my brother

suffer. He ended up with a Colostomy but he was glad he was alive. In

the summer of 2002 it returned and the drs did all they could for him

but he passed away in Dec.2002.

My other uncle was diagnosed with Bile Duct/Pancreatic/Colon Cancer

in October of 2002 and was operated on but he contracted Sepsis which

I think was a blessing. He had a long tough road ahead of him and he

had already made the decision not to have treatment because of the

nature of his cancers. We all supported him in this decision however

he passed away 3 weeks later from the sepsis and 6 weeks before his

brother.

At first I wasn't sure if I should join this group or not but after

reading some of the posts I feel as if I could learn a few things

about what treatments, drugs etc are now available that weren't

available 10 yrs ago and if anyone else in my family gets Colon

Cancer I will know more than I did 10 yrs ago. I'm praying no one

else gets it but I have 2 other siblings who refuse to be tested

because they don't want " that " test (colonoscopy) done to them. I've

tried talking to them because I've had numerous colonoscopies done

but they still won't go. I also have cousins who feel the same way.

So all I can do now is be prepared.

I will be thinking and praying for all of you.

Dianne

August 26, 2004

Diane,

Just posting and keeping up on things puts you one step ahead. Keep

it up and if you ever need info this is the place to come. I am sorry

that the beast is so strong in your family, I lost my uncle at 44 to

colon cancer. They didn't know what it was until they openned him up.

They then proceded to close him up and told us that there was nothing

they could do because it was everywhere. That was in 1987. They now

have much better screening and prevention. I was amiss myself. I

didn't think about colon cancer and his death. I got mine at stage

III and now am a recurrent patient. If I had know that it was a

chance for me to have it I would have been screened. I now know to

have my kids, sisters cousins in the habit of getting tested early

and keeping up with it.

Jennie

August 24, 2009

Hi, Brain, and welcome! Sorry to be " late " , but I get distracted... :-)

Hope you will be better soon, and meanwhile am sure you will find friends

and entertainment here!

in WY

" You get a wonderful view from the point of no return... "

http://www.flickr.com/photos/liadains_fancies

http://practical-blackwork.blogspot.com

NEW!!! - website in progress!-

http://practicalblackwork.com

New to Group

My name is . I am 48 years old. I am a single dad to a 17 year old

daughter who is a Senior in High School this year(No Stress)

My story began in 1994 and was mis-diagnosed. But it wasn't until Aug 2008

when I woke on a Saturday Morning and could only distinguish light and dark

in my left eye. I went to a Retina Specialist and it was not retinaopathy I

was sent to a Cardiologist and it was not heart or blood flow related. I was

then sent to a Neurologist and was told that I had another stroke. Before

seeing the neurologist I had a name to match my problem (Optic Neuritis) I

had seen this doctor in 1994 and then again in 1999. I did not have a lot of

confidence in him. I mentioned optic neuritis and steroids he said he would

not give me steroids because I have type II diabtetes. I told him my

endocranologist would handle the blood sugar and I wanted my vision back. He

refused.

I ask for a second opinion and saw another neurologist and he ran test after

testincluding my 3rd MRI and Lumbar Puncture. After 3 weeks he walked into

the exam room and said you have all symtoms of MS but I will not diagnose

you. One week later I woke to not have clear vision in either eye and I

freaked out. I wnet to the E R and began 5 day steroid infusions. 24 hours

later my right eye had cleared 20/20. My left eye has not improved. I had

made an appointment to see a MS specialist before the E R visit. One week

later due to a cancelation I saw the new doctor. He review my medical

records back to 1994. He shared with me that I have MS and that my first

exacerbation was in 1994 with another documented in 1999 and now 2008.

I am beginning mt 7th month of Betaseron. I have had 5 rounds of 5 day

infusions with oral taper in less than a year. I began round 6 two weeks ago

to be overdosed on solumederol. The home health nurse did not regulate the

flow rate and I received the entire bag in less than one hour. I went into

shock... kidneys shut down... Everyday gets better.

Until this latest issue I was walking without a cane again and I felt really

good. I was dreaming of remission but BOOM I hit a bump in the road.

My now ex wife told me for years that there wasn't anything wrong with me

and I was trying to die. That's OK I got what I wanted... My daughter and My

dog. The rest is just stuff that can be replaced.

I am sorry this is so long.

Feel free to email me outside of group. Email is my life at the moment. I

had hoped to return to work in January and I can still hope.

I look forward to getting to know you.

Have a Great Weekend.

Berry

Huntsville Alabama

August 24, 2009