Re: [Scoliosis-Medical] Just joined

2007-01-31 19:02:11

Hi Sissi,
Oh my, you have so much on your plate. I can't imagine.
I'm sure your daughter will be fine. My son had spinal surgery for scoliosis
at the age of 16 and was back in marching band with his trombone several
weeks later. Kids are quite resiliant and recover quickly. The surgery is
hard for a parent to contemplate as it seems so frightening and dangerous.
It is not a walk in the park, but it is not as dangerous as it may first
appear. And you have us for support. Write in with any questions you may
have or just to vent, at any time.
Bonnie

Re: Any advice?/Margaret

2007-01-31 18:28:48

--- Margaret;
Howdy how's it going?
You ask about the pain before surgery, well everyone has a different
explanation of pain.
Why because everyone experiences it differently and has there own
version of pain.
Having any type of surgery is painful but with today's improvement's
in medicine there is little to worry about being scared is just
something each indivule has to deal with understand I was very worried
about the pain and discomfort of it all when I went through surgery
and found most of my fears were just that unwarranted fears, like the
saying goes people are scared of the unknowned and in many cases that
true and causes undue worry,
I am one of those people that can't stand pain, my Wife/Penny is just
the opposite it must be a woman thing.
Females seem to be able to handle pain much better that men a least
that has been my experience anyway.
One thing we could help you with is make sure your Doctor knows how
you feel and discuss it with him, he will be the one you should poise
this question to. Many of us have had bad out comes and could easily
freak you out with what we say.
What I am going to say has nothing at all to do with scolosis but when
I was 16 on my B/D
I was shot in the stomach, I went through much pain at the time all I
could think of was I could no longer play football sports & music was
my life and over the years I have found that the amount of pain one
suffers is sometimes mainly unwarranted and just causes one to get
more upset and that's not needed there is to many other thing to
worry about. Think positive you will be fine and don't be swayed by
the feelings of others in that are in a bad way.
Like I said talk to your doctor let him know how you feel he can
help.The thing is to find a DR. that will listen to you and how cares
On the front page I have put a link to the scolosis mailing list they
have a list just for teens you might want to hear there opinion. It
tells you how to subscribe etc. if you have any problems with it post
me back I'll help you out with it if you need.
Like I said there is nothing to fear but fear itself, if you
constantly think about pain I can guarantee you, you will have much
more pain that normal so try to think about something else like you
future or school and let the doctor's worry about it for you after all
that one of the reasons they make big bucks.
Karl

Just joined

2007-01-31 07:42:28

Hi,
I joined this egroup because my 16-year-old daughter, Amber, has been
referred to a surgeon at Emory Spine Center for spinal fusion. Amber
has an "S-shaped" curve with a 59% curve in the T-9 level and a 38%
curve in the L-2 level.
We see this new surgeon in two weeks and I'm scared to death. Hi
sname is Dr. Horton.
To make matters worse, (as if they needed to be worse) our two
younger children also have medical issues. Dillon (age 8) is
recovering from a long illness which nearly destroyed his kidneys and
Boone (age 3) has recently been diagnosed with autism and hyperlexia.
Boone's diagnosis came just two weeks before we learned Amber would
require surgery.
I have taken a leave of absence from my job partly to make
arrangements for Amber's surgery and aftercare, partly to find
suitable therapy for Boone and partly to have a nervous breakdown.
I know zilch about scoliosis other than my brother in law has a
pretty severe case that went untreated and now he cannot even turn
his head unless he turns his entire upper body. He's also very
hunchbacked and looks much older than he really is. I cannot let this
happen to my daughter but the risks of surgery frighten me beyond
reason. It seems so unfair that someone so young has to go through
such an ordeal at the height of her teen life.
I keep an online journal to keep distant family members abreast of
the latest in our medical nightmare.
http://home.isoa.net/~nitetrax/dillon.htm
Sometimes I wonder if my husband and I should have ever met.
I guess I've rambled long enough. Thanks for listening.
Sissi

another question

2007-01-31 01:54:12

I woke up in the middle of the night with a thought racing through my head. I
also have osteoporosis so I'm not sure I could have surgery. My bone may be too
thin. Does anyone else suffer from osteoporosis?
Peggy Greene
JPG Unlimited
Antiques & Collectibles
jpgreene@...
Jesus laid down His life for us, so that He could give His life to us, so that
He could live His life through us!
Simplify your life with Tupperware! Check out my site at
http://my.tupperware.com/pgreene. When you place your order, please use my
Consultant number 00577000619. Thanks!
Join AllAdvantage.com and get paid to surf the Web! Please use my ID (HGD-969)
when asked if someone referred you. Thanks!
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Re: [life-with-scoliosis] Any advice?

2007-01-30 23:12:13

In a message dated 03/06/2001 5:47:48 PM Eastern Standard Time,
kelleym@... writes:
<< Dear List,
I'm an 18 year-old girl who is facing surgery this summer. I'm very
nervous, especially about the recovery and the pain. Any
suggestions??
Margaret
Hey there, Margaret! I was 17 when I have my surgery last year and would love
to answer any questions you might have. I have now completely recovered and
can do anything I want. My surgery was more successful than even my doctor
predicted. I'm so glad that I had it! Email me at msivory16@...!!!
~Melissa~
<}}}}

Re: [Scoliosis-Medical] Fw: [fibro-frog] interesting article

2007-01-30 14:50:29

After several bad experiences with Kaiser, and another HMO plan, I've
chosen PPOs ever since.
I have gotten better service and better health care ever since.
We all have to pressure our companies to offer PPOs as a health plan
alternative.
Nancy in the East Bay

<Snip

RE: [Flatback_Revised] Just found out they want to do a mylogram due to MRI failure, I am so scared!!

2007-01-30 14:47:16

Hi Michelle,

Asked if an enhanced CT-Scan is available in your area. Not all hospitals have them since it is an expensive specialized machine, but it's a CT-Scan that can see past the rods for a clearer picture. It does not involve needles and when I had mine, it did not take very long. As far as I know, they haven't developed a MRI that can see past the rods, yet. Hopefully that might be in the works, especially for us with the rods and flatback.

Llweyn

Re: Any advice?

2007-01-30 04:08:59

Thanks for the advice, but honestly...can someone tell me how badly
it is going to hurt after the surgery and in recovery? Thanks...this
really helps me cope with it!
Margaret

Any advice?

2007-01-29 21:26:45

Dear List,
I'm an 18 year-old girl who is facing surgery this summer. I'm very
nervous, especially about the recovery and the pain. Any
suggestions??
Margaret

Re: Just found out they want to do a mylogram due to MRI failure, I am so scared!!

2007-01-29 17:00:18

Hi Michelle,
I agree with everybody about the MRI. My doctor told me because of
the hardware in my back I would need a mylegram followed by a CT scan.
I was one of the unfortunate ones that had a bad reaction from the
dye. After talking to others in other back pain support groups about
mylegrams it seems that there is different needles they can use and
that could make a difference. Also the doc that performed this
mylegram on me had not done one for a long time. Usually they just do
the MRI's now.
It also seems that most do not have a reaction from it or if they
do it is very mild. They will have you on your stomach and they will
numb the area where the needle is to go so you will not feel a thing.
Except maybe a little pressure. Believe me because they had to enter
into my back like 13 times before they reached a area to enter and it
was all painless. The doctor was ready to give up.
Maybe ask if they can give you a mild sedative to relax you before.
Just think the pain can't be any worse then the pain you had with your
past surgerys. Good luck!
Margaret

puppies and revision

2007-01-29 11:03:00

Kam -

Our dogs are part of the family also, and provided so much comfort for me after returning home from my revision! I've always made sure to have a young one in the home, specifically so the older ones could train him as to the rules of the house and proper "indoor etiquette". It never took over 2 short days to learn to use the doggy door either.

~Mary~

puppies and revision

2007-01-29 06:04:29

Kam and Mary,

It took us two years since the sudden death of our golden retriever to finally adopt another dog. This is the first time we have gotten a small dog (ten pounds). We have always had goldens, whom we found to be very loving, smart, and responsive.

I was going to adopt a Bichon Frise, but my daughter in MN had a wonderful little rough coat Jack Russell dropped on her doorstep (figureatively) and couldn't cope with her two little boys and their Australian Shepherd and another dog. Once she got the OK from me, she sent "Jack" to me by Southwest Airlines to Boston, and a young fellow with a van picked him up there and delivered him to our door! As it turns out, he is totally housebroken, and just a love of a little guy! He is not the muscular dog that is seen on Frazer! Just a little guy who thinks he is six feet tall! I was worried about my husband's acceptance of him, partly because I am quite limited in my activity now. My ulterior motive was that I hoped that a little dog would help me to "get going again"! And that he has done! I now attempt walks (not very far) and have to get up and get him out when he tells me. Oh, he has gotten my husband's love to a fairtheewell! Rather than a hindrance for us, he has
been our motivater.

Just another dog story........................

Carole M.

Re: [Scoliosis-Medical] Linda update 000913

2007-01-29 01:25:14

Wow, it never rains but it pours! How terrible for you and your family!
I know that I try and stop myself from standing on chairs and changing
light bulbs, or any activity where I might fall when my son isn't home. (I
went cross country skiing with him once, slipped and fell on my back, and
absolutely could not get up without assistance. That scared me, and I'm not
even in a brace or had the new surgery yet.)
I guess I really should look into getting a home health aide for after the
surgery--most all of my neighbors work, and so in an emergency, there would
be nobody home with me when my son is at high school.
Tell Linda she's very brave, and the only good thing about some drugs is
that a few years from now, you won't remember the pain as sharply as it
feels now. I know that is not much comfort now.
Take care, you all have been through a lot!
Nancy in the East Bay

<SNIP

Re: To NB re; meds

2007-01-28 17:07:07

The list of side effects on Vioxx does include sleepiness. I took
some this morning at 6:30am while I had breakfast with my wife. Then
I went back to bed to wake up at 1pm. This is 4 hours more than
usual. The dog woke me up by standing on my chest and licking me. She
was several hours past due her morning walk. I have noticed it causes
sleepiness in me too but only the first little while. By the
afternoon I am fine again.
I haven't had much relief from it so I am going to discontinue it. It
just isn't strong enough in my opinion. Also the posted article on
Vioxx in the UK has made me hesitant to continue it. I have also
noticed that my stomach is just as upset as with other NSAID. It
works for some and doesn't for others. I think if you have a
sensitivity to those drugs built up over time then you just can't get
use to any of them. (Theory of mine.)
Paul

Just found out they want to do a mylogram due to M...

2007-01-28 16:30:15

Michi -

Linda is right in saying to be wary of a doctor who orders an MRI - the doctor who did my revision also wasted a lot of time by having me go in two different times for one, before she finally admitted that it wasn't going to work.

I too was frightened of having the CT Myleogram - it brought back memories of having myleograms before my original surgery, back when the procedure hadn't been as perfected as it is now. (They used to practically stand you on your head to move the dye) I laughed at myself afterwards this time because it was so relatively simple and painless. My nerves throughout the procedure gave me the most difficulty.

You need to find out what is causing this new pain and unfortunately the CT myleogram is the test that almost any doctor will need in order to come up with answers. I wish I could be with you at this time for support and comfort! Just know that my heart is with you, and you'll be in my thoughts and prayers. You can do it Michi!

Hugs.....Mary

Re: [Scoliosis-Medical]flatback

2007-01-28 05:46:52

This question is for those who had a Harrington rod fusion done in their teens
and early 20's and now, many years later, are facing certain or possible surgery
to correct "problems":
How do you deal with all this? Half of me is glad to know about flatback
syndrome, what it is and how it is dealt with but the other half of me wishes I
had never heard of it! I feel like I was doing just fine and now I have
something more to worry about. Does anyone else feel this way???
Peggy Greene
JPG Unlimited
Antiques & Collectibles
jpgreene@...

Re: [Flatback_Revised] My Story

2007-01-27 21:30:03

Susan,

God love you! You have had quite the journey! You deserve so much credit! Do I remember when you had surgery, possibly? Anyway, my best wishes to you for no more surgery.

Sincerely,

Carole M.

Linda update 000913

2007-01-27 17:33:54

Hello all,
Linda was doing a little better with the new pain medications. The
introduction schedule for Mexiletine and Zanaflex were extended to reduce
the low blood pressure effects. This worked; but the drugs weren't making a
significant difference in the symptoms of pain and muscle spasm. She did
have some side effects of dizziness and being a little spacey.
Sunday, about 4pm she was up and walking in the house for exercise. She was
in her SOMI brace and doing fine, I thought. From my computer, I heard a
crash and rattle, and I thought a baby gate we use for the dog had fallen.
I jumped up to find Linda laying on the family room carpet, on her back,
suspended by her neck on a low chair rail. She was conscious and said she
tripped going back up the step to the kitchen. I supported her neck and
slid her off the chair to the floor, called 911, then helped firemen get her
on a backboard. I quickly got a picture of her X-rays so everyone knew what
they were dealing with. She was transported to emergency by ambulance.
I did take off her brace since it had changed position and was hurting her
head. She was bleeding from the left ear, had bumps on the back of her
head; but no other apparent injuries. I was very concerned about the
cervical area. Her last surgery was in April so she isn't fully fused. My
hope was the brace had taken the force of the fall. Wrong, her left elbow
took the force and fractured her left arm at the Humorus head. Linda said
she heard it break. Later X-rays confirmed the fracture just below the
ball. It was jammed, angled fracture, with chips around the break.
She got to Emergency at 5:00pm and spent the next 9 hours on a gurney,
without her normal pain medications, and infrequent Demoral shots. She was
seen by the dr. who ordered X-rays. They did front and side views of
cervical/thoracic and front of lumbar along with several of the shoulder and
arm. Radiologist said hardware looked OK, nothing abnormal. About 2:00am
the dr. got a sling and was ready to send her home. We objected wanting to
be seen be an orthopedic and not wanting to risk having further arm damage
and/or hardware problems later at home. Dr. finally agreed to call our
primary care and suggest he have her admitted. We got to a room about
3:00am and settled in to see what's on TV the rest of the night. Linda was
in agony. Any movement of her arms made her yell. We were supposed to see
an Ortho and our Primary Dr. in the morning. We waited all day and saw them
both at 7PM. Can't tell you how tiring it is to sit/lay and wait for
something to happen. There was an order for a PCA (morphine) and a heart
monitor.
The Ortho had more X-rays ordered and suggested she could go home if she
wanted; since there was nothing to do. No operation or casting. The bone
is in place and will fuse if kept immobilized. He ordered an immobilizer
brace. It's an elastic band going around above her waist with two Velcro
loops. One goes around the arm above the elbow, the other on the front
around the wrist. She is to let her arm dangle and move the shoulder as
much as she can. There is going to be lots of pain for a few days, then the
ache of broken bones. Linda can feel the bone grinding when it moves. Her
hands and wrists are fine. There are three goose egg bumps on her head. A
swollen area on the back of her neck. There's a bruise on her left shoulder
top where the brace dug in. Her ear took 5 stitches to close and there's a
longer cut behind the ear taking 10 stitches. The brace part supporting her
head must have made the cuts. She has a bruise on her left elbow and
another on her right upper arm. Linda says she hit everything on the way
down and all she could think of was how to protect her back.
We didn't come home Monday night; since our primary care Dr. suggested it
was late and she may as well rest with the PCA working. We came home
Tuesday afternoon, went to bed, and slept.
Today, Linda is able to get out of bed by herself. Her arm is immobilized
so she doesn't use it. She can roll over on her right side and use the
adjustable bed to bring her upper body nearly vertical, then sit up. It
hurts because she can't really relax and not use the back muscles on the
left side. She can get back into bed by reversing the procedure with little
help.
There isn't much difference in our daily living with a broken arm. I do
have to help more because she can't do anything requiring two hands. We
manage and will handle this little set back also.
We wish you folks just about to have your first surgery or another to be
encouraged. I'm amazed by how much the body can take and overcome. Many of
you have much more to deal with so we don't feel so bad. As Cecile would
say, Blessings to you all.
Warm regards,
George n Linda

Re: [life-with-scoliosis] My Intro

2007-01-27 13:58:25

Hi, Donna :) Its great to hear from you!! This list is usually quiet. My
name is Melissa, I live in SW Georgia, and I had posterior spinal fusion for
my 53 degree thoracic curve last August when I was 17 years old. That is such
a blessing that you have medical insurance now and can seek help for your
condition. Although a chiropractor helps with the pain that can be caused by
scoliosis, they cannot stop your curve or rotation from getting worse or
correct it. I would advise you to find an orthopedic doctor/surgeon who
specializes in spinal deformities such as scoliosis. Obviously you have been
to some type of doctor because you know the curvature of your back, etc.
I am a Christan as well, and it was only with the Lord's provision and care
that we found an excellent surgeon right here in town, and that my surgery
went very well. My curve is now only 11 degrees. I would love to hear more
from you!
In Christ,
~Melissa~
P.S. I am home educated as well.

Re: puppies and revision-to Kam

2007-01-27 07:30:02

Hi all:
Just catching up on many days of posts! I thought I'd tell
my "doggy" story! Our 14 year old Fritz (spaniel/terrier mix) was
put to sleep due to inoperable cancer a year ago December (10 mos.
before my revision surgery). It was very difficult for all of us to
miss him and at the same time wonder when the time would be right to
adopt another dog. We waited until April and then went to the
shelter and found a 1 year (schipperke) dog, who has a great
temperament and was "trained"! We had her for six months before my
revision surgery, which ended up being a good amount of time
to "settle in" with each other. Thankfully, her good temperament
and behavior has made her a good companion for me during
recuperation. The only things that I cannot do are: take her for
walks (she pulls too hard & suddenly if she sees a squirrel, etc.)
and pull her in from outside if I need to go out. I have
to "coerce" her with a bone or something to come in. We have a
fenced in backyard, so I really don't have to walk her. My husband
walks her, either before or after work. After revision, I just
needed to pay special attention to where she left her chew bones, so
that I wouldn't trip over them (happened a couple of times, but I
caught myself!) All in all, it has worked out fine, and we're all
so glad to have a good companion in the house again. One funny
story (with having a dog after revision) is that one day I
accidentally spilled a small tub of almonds all over the floor and
realized that it was futile to try and pick each one up with the
grabber, before she got right in there and chomped them right down!
Certain things I just can't change! No major problems though with
adopting this 1 year old "pre-trained" dog. If rain were a problem
here, I'd grumble about not being able to dry off her muddy paws
before she comes in the house, but it's very dry here most months of
the year. When rain does come, I drop a large towel near the patio
door that she comes in, and after a few steps most of the mudprints
have come off. That's my dog adopting story 6 months before
revision. Somehow she sensed that I wasn't "myself" after revision
and she didn't try to jump up on me to greet me. She still will
only come up on my legs for me to pet her if I "invite" her up. So,
we had "good luck" with adopting a "trained" 1 year old
dog!
Martha

National Scoliosis Foundation

2007-01-27 00:55:51

If anyone is interested, the NSF's web site is finally up and running
at:
http://www.scoliosis.org

My Intro

2007-01-26 18:41:11

Hello :-).
My name is Donna, I am 37, a wife and mom to 2
wonderful teenagers :-). Our Son Mark is 18 and our
Daughter Brittany is 15. I am a stay at home mom who
also HomeSchools Brittany. I have recently found out
*after several yrs of chronic pain that I have
advanced Scoliosis :(. We have not had medical
insurance in many, many yrs so I have just dealt with
the pain on my own *not knowing what it was*. We now
have excellent medical Insurance *Praise The Good
Lord* I am unsure of the degree but I do know I am in
late stage 3 beginning 4 of the Scoliosos Chart. My
spine is turned to the Left pretty bad with a 45
degree angle. It is also twisted from the L1 down and
pushing hard on my bladder...which explains why I
cannot hold it! I also have a very bad sway back with
a bulging disc at L4 and my neck is totally out of
whack. I also have an abrnormally small spinal cord
which was revealed in the MRI. I am going this
afternoon to my Family Dr. to see about getting on an
anti-inflamatory medicine and a mild muscle relaxer.
My feet have been numb and have stayed very painful
for the last 2 yrs. I am able to only walk short
distances at a time, and I have recently lost the
feeling in my right hand, I can still hold things but
only for a short period of time. I am however blessed
that I have a loving family who helps out always. Good
friends and a wonderful home Church where there is
always someone available if I need help. I am very
appy with my Chiropractor she is a wonderful Godly
woman who her self has Scoliosis and understands
completly what I am going thru. We live in Sunny
Florida and I adore animals! I have 5 Chihuahuas, a
new Female English Springer Spaniel named Bella that
is 5 months old now :-) and 2 cats. I hope to stay
very involved in this group and would love to hear
more about everyone. Just to let you know I am always
here for prayer, or just to listen. You are welcomed
to Instant message me anytime day or night. My IM name
is dtiggersmom36.
God Bless~Donna

stepping out in faith

2007-01-26 11:30:16

Dear List
It's been almost two years (Oct) since my surgery. I have been on the
egroups list for a couple of months and the other list for more than
three years now. I have enjoyed getting to know you and have enjoyed
conversing with you on an issue that is a big part of my life. Although
I have considered quitting a couple of times before, I stayed on the
list. Unfortunately the time has come for me to say goodbye. Even when
I'm away from the computer, I think about you guys. I worry about those
who are looking at surgery as if it's nothing and I worry about those
who think that surgery will solve all their problems. I know surgery is
an outcome for some, but not for everyone. And how will you know, before
it's too late? Maybe my mom was right when she said I shouldn't become a
nurse because I care too much.
Below is a part of a message I wrote this morning in a private e-mail. As
I was writing, I thought- why am I being so secretive about what I'm
experiencing. Why am I not prepared to share the real me at this point in
my life with you? Is support only support for surgery or is support also
support if it's support for not having surgery and trying to deal with it
conservatively. I am not referring to alternative treatments. I am
referring to excercise, heel lifts, braces, physiotherapy.
Please see this message below as my two year update regarding my physical
state. To those who are considering having surgery- I hope this will give
you a true version of life behind the mask of "everything is fine", "you
get used to it....", etc etc. To those who are facing surgery in the near
future- I hope you have done your homework and have peace about your
decision. I know some have done their homework for a very very long time
and have no choice but to go ahead with surgery. If it upsets you, I'm
sorry.
[message excerpt:]
"I think it would be important to rule out leg length discrepancy. Maybe
a simple solution like a heel lift will do the trick for you. I didn't
want to wear one but I am starting to consider to wear one. Trouble is
that I am, and was getting, opposing opinions. Before surgery some drs
told me they were equal and some not. The dr who eventually did my
surgery told me that my legs were equal in length and the first thing he
told me after surgery was that my legs were not the same in length. This
was vital information for me in deciding to have surgery because I
couldn't imagine a straight, fused spine on a base that's not level. Now
I have lost the flexibility of the lumbar spine with all those being
fused and I can't compensate anymore for the difference in leg length. I
am starting to have pain in my thoracic area again, because that part is
trying to pull me towards the center now, seeing that the lumbar part
can't do that job anymore. (this is the first time I'm admitting this,
but I would like to show to you what could happen if your legs are not
equal in length and you have all your lumbar vertebrae fused).
I don't want to sound negative about my surgery. I accept the fact and
the circumstances surrounding my surgery. I am thankful for what I have.
But looking back, I think wearing a heel lift would've been nothing
compared to what I am dealing with now. Surgery did not give me my 14
year old figure back, and as a matter of fact, I am still getting used to
my new body. For the first time in my life I have a "middle" and "hips",
but to me it feels like I have a big butt. The doctor also gave me a
"nice" lordosis (he is VERY proud of his work- flat back is a result of
no lordosis-) and that causes my butt to stick out even more. When I sit
down, my back doesn't go "into" the chair anymore, so it seems like I
have a huge tummy when I sit back. I am not overweight, but as I said, it
did not give my praying mantis figure back (tall and thin.....). I am not
sure if the benefits of surgery in my case, outweighed the risk. But
apart from discomfort and pain I did not have any associated health risks
like compression of the thorax at that time. It might have been in my
future, because of the rotation of the thoracic vertebrae, and I guess
that justified surgery. But I think I could've waited even longer.
Wow, sorry for this- I have really unloaded.....I just had a miserable
day yesterday. Went to a physiotherapist and for the first time since
surgery I've had some compassion from medical personnel. They have been
telling me all along I should be able to do much more than what I'm
doing. The physio was able to explain what is happening to my body. I
really admire their knowledge and the way they can just put their finger
on your problem (literally) I now know that L5 is really hurting and my
left sacro-iliac joint is also hurting. I did not expect to have these
problems so soon (2yrs) after surgery. I guess scoliosis is here to stay
and we just have to learn to deal with it. As the physio said: exercises
to me is like insulin to the diabetic. I'm just at a point where I'm
feeling sorry for myself and I will get over it.....I don't know what I
would've done if I didn't know the Lord." [end of message excerpt]
It is time for me to move on. My immediate goals are to share what the
Lord has taught me in the last couple of years. Especially the fact that
He is my Heavenly Father (hence the song "Daddy" on the CD that I
recorded just before my surgery in 98) Thankfully I am well enough to
sing again.
Thank you Rich, Linda and Paul, for your time and the effort that you are
putting into these lists. Thanks to everyone who have answered my
questions so faithfully, before surgery and also since my surgery. I have
learnt a lot from the lists and am thankful that there are people who
care enough to continue to support this even if they themselves are not
in need of any information. It is people like you that make it a bit
easier for me to move on.
Thanks once more,
Sanette
Please send personal e-mails to: modimo@...
On the web: www.cyberus.ca/~modimo

Marķa Alicia

2007-01-26 06:57:52

Marķa Alicia; glad the link work and thanks for replying to my other
mail.
I know what it is like to want to be around others that can relate to
what your going through, I have come to find as much as I Love my little
family they don't even understsnd me at times we even have a son in the
medical profession and no help or understand there either that is one of
the reasons I started this little group may-be in some way it will help
others and the list goes on. Talk at ya later!
Karl

RE: [life-with-scoliosis] bmj.com Kendrick et al. 322 (7283): 400

2007-01-25 23:17:14

I've just opened the paper.

THANK YOU!

Re: puppies and revision

2007-01-25 20:58:56

Cam - Thank you for the words of wisdom. It does seem insane when I
first consider the changes an adoption would require, but I have
already decided our next family member will not weigh very much (I'm
thinking 10-20 lbs.) and will be very good at jumping...on the bed,
the couch, whatever. A short-haired fox terrier showed up at my
parents' place (they live on 160 acres so this was really weird) and
I fell in love with her...I don't really even like girl dogs. Funny
thing is, my husband fell in love with her too! She didn't stick
around and I will continue to believe that she went home, but it did
get me thinking that this breed might be perfect. She didn't shed,
she was incredibly intelligent and mild-mannered, and she could jump
amazingly high. Theadore has been so lonely and I have been so blue -
this is why I even consider it. If we don't add a member before
surgery and experience another loss...well, this seems like too much
to handle. A home without a four-legged friend seems like an
incomplete home to me.
Whenever it happens, he (our adopted child) will move in to a home
with a doggie door and hopefully Theadore will be able to help with
the 'training'. That being said, it won't happen unless Adam and I
both agree and that will take the perfect little one showing up on
our doorstep and causing my hubby to 'fall' in love at first
sight...maybe we will adopt an older child...hmmm. Maybe Theadore
has five or ten more years left... ;o)
kam

Re:Skilled Nursing Care

2007-01-25 16:45:45

Actually, my mother couldn't leave the skilled nursing facility until her
doctor signed her out, and I went to pick her up. Once you're in, it's is
hard to get out apparently.
NB

Too All Group Members

2007-01-25 02:02:35

Just a few questions please.
Is evertone finding what it is ther looking for?
I am also open to any and all suggestions.
I need someone to moderate this group it would not require mush time
as you can tell no-one has posted here except me and a few others/
I think we should meet in the chat room somethime.
Any link or articles you come across post them please.
I new to this support stuff so any help will be of use.
Karl

SPEEK OUT!!!

2007-01-25 01:33:18

SAY WE'RE MADE AS HELL AND WE WON'T TAKE IT!!!!

Re: My Story-Kam

2007-01-24 15:09:38

Kam,
For what its worth...my spine...my situation...both Rand and Boachie
said the lami option was about 4-6 weeks of recovery. That seems
consistent with how it went for Edie.
It certainly is a question you could pose to Bridwell and/or La
Grone. Rand said it would "buy" maybe a year...both doctors
indicated the unstable spine afterward could mean the next "stage"
could come up very quickly. I opted to take the 12 week
recovery...but everyone's situation is different.
More unsolicitated advice....sorry! Cam

Re: Thank you Edie

2007-01-24 09:39:10

Suzie,
Welcome to the group. I am not sure if I have "met" you before but I
am hoping you will fill us all in if I have missed it. If not, maybe
you will have a chance to write us a long version in the coming weeks.
Edie,
Yes...How did today go?...are you up to telling us about it? I hope
you managed okay...will look forward to hearing from you.
Cam

Re: [Scoliosis-Medical] To NB re; meds

2007-01-24 07:07:20

Thanks, I'll ask my doctor.
Celexa is the only one I've tried that does anything; Prozac and Zoloft did
absolutely nothing.
It keeps me from crying, but that's about all.
It's the pain that I'm worried about, too. I tried taking 1/2 of the Vioxx
pill, was sleepy this morning, but now (by 1pm) I'm awake.
Guess you can't take aspirin or Tylenol either for pain in the 3 weeks?
I have a call into my doctor about the meds in the meantime.
Thanks!
Nancy in the EAst Bay

CBS News | Pain Pain Go Away

2007-01-24 02:02:25

http://cbsnews.com/now/story/0,1597,272809-412,00.shtml

Re: Problem on site.

2007-01-23 13:38:28

Things seem to be working properly again. If your message didn't show
up today send it again. I think some messages were lost.
Paul

Problem on site.

2007-01-23 06:06:18

I cannot approve or even see messages on the list at the moment. I
have written to egroups for help. If your message has not appeared or
does not appear resend it after I let you know that the problem is
fixed. At the moment nothing is getting through. If this one makes it
it is only because I don't need approval for my own messages.
So again don't post until I get this fixed. When it is fixed I will
let you know. If you have a message that did not appear resend it
after I let you know it is fixed.
Paul

Re: Just found out they want to do a mylogram due to MRI failure, I am so scared

2007-01-23 06:04:57

Hi Michi...
First, I'd be very concerned about seeing a doctor who ordered an MRI
of the spine for a patient with rods implanted (unless they wanted to
look above or below the fusion). It's very well known that metal
causes artifacts on the film.
I had a CT-myleogram a few months ago, and it was truly a pain free
procedure for me. I know that some people have some pain during the
procedure, but I don't think that's a reason to avoid it, unless you
plan to live with your pain. In order to understand what is
happening, your surgeon needs to be able to look at the spinal cord
and nerve roots.
Like most children, I was afraid of needles. Fortunately, I have 6
brothers, so I've always felt that I needed to be macho to keep up
with them. I have no idea when, but at some point in my early teens,
I realized that a needle stick was actually a lot less painful than
many other things which we experience on a daily basis. Ever since
then, I've had absolutely no fear of needles, and could probably give
myself shots if necessary.
I hope you can get past your fear. The knowledge gained from the test
should heavily outweigh the stick of one tiny needle.
Regards,
Linda

bmj.com Kendrick et al. 322 (7283): 400

2007-01-23 03:46:02

Miria Alicia, here is the site to get graphics you may need to click on there url.

Sorry about the bad link Thanks for letting me know..

Re: puppies and dr. bridwell

2007-01-22 17:18:25

Kam,
I am sure you will carefully consider the dog issue and decide what
is right for you... but with upcoming surgery I would take into
account that you will not be able to clean up any puppy messes for
quite awhile. You also might want to consider that young dogs tend
to get underfoot and a spill or trip people up and in the early
healing that could be a very bad thing for you. I realize that some
dogs train faster and do not have these issues..and you have until
winter to get it under control....but do you really need/want
another thing to plan for this year?
As time gets closer you will find you are pretty preoccupied
(rightly so) with getting yourself ready....making pre-op
appts..blood donations...travel...will a puppy make this time easier
or harder for you...consider stress levels. If they call you with an
earlier date and you have a 10 week old puppy...will the equation
change for you? Lastly will the dog grow to a large size or bigger.
You will be cautioned against walking a dog of that size on a leash
for the risk of getting pulled forward or jerked too much I believe.
I guess you can probably tell I am thinking it might be wise to
wait until things aren't so topsey turvey.
Just my unsolicted .02...although maybe you were asking for input?
Take Care, Cam
ps I loved hearing from everyone what a perfectionist my doctor
was...great for a doctor...difficult for a husband!

To NB re; meds

2007-01-22 13:26:52

Nancy:
Check with your Doctor about the medications that need to be terminated
before surgery and what you can take for pain. Most NSAID's thin blood and
promote bleeding, therefore, it is usually recommended to stop those types
of meds before any surgery. I did not have to stop my anti depressant meds
prior to surgery, but I take Paxil. Celexa may pose risks that the surgeon
may want to avoid. Talk to your doctor.
C.P.

RE: [life-with-scoliosis] radiographs are not useful in management of low back pain

2007-01-22 06:43:25

THE LINK DON'T FUNCTION!

radiographs are not useful in management of low back pain

2007-01-21 19:56:05

Here's more evidence that routine radiographs are not
useful in
the management of low back pain. Interestingly, patient
satisfaction was higher when they did receive radiographs,
which
is not a big surprise, in my opinion. Once again, we have
more
evidence that people really like being fussed over when
something's wrong with them.... "The challenge for primary
care
is to increase satisfaction without recourse to
radiography."

click the link for complete article

* http://bmj.com/cgi/content/full/322/7283/400

flatback

2007-01-21 14:10:15

I'd go for it. You can always go home if you don't like it.
Sanette
On Mon, 11 Sep 2000 12:34:54 -0700 NB <wrdtech@...

Just found out they want to do a mylogram due to MRI failure, I am so scared!!

2007-01-21 09:18:02

Hi, I had my revision surgery about almost two years ago, I am 28 yrs
old and I am having really bad back pains from laying on my back or
even sitting down, I dont know whats wrong and it hasnt gotten any
better. Finally I said I will have it checked out and they ordered an
MRI and all that shpwed was a huge shadow where the ords are, they
couldnt see anything. So the hospital called my docotr and they just
called me and wantme to have that test where they put that needle in
your back. I dont want to do this. i really dont. I have heard
horrible things and I dont want to go through it. I am torn here. I
feel like an 8 yr old refusing his medicine, but you guys have no clue
how scare I am of needles, well maybe you do, I dont mean to whine, I
know some of you guys are going through worth stuff than this, I am
just trying to let out my fears!!! The problem also is that we are
getting stationed somewhere else on the beginning of next year so Iwill
have to be away from my Doctor and I should do it now that I am here
but I truly dont want to go through that, I dont, Pleas,please, give me
some more advice on this, Kam you have been wonderful and I appreciate
it all you words but I am really going crazy here!!!

Re:Mary thanks for your kind words

2007-01-21 05:41:45

Dear Mary,

Our move to California was because my husband is an escalation engineer for the west coast with his company who services and builds computers systems, they wanted him out there by being inside his territory. Since I needed more surgery and didn't want to leave since my surgery was very complicated and I sure wasn't going to change doc's midstream, they made a place for David at the main office here in Colorado Springs. As it's turned out he travels mostly to Texas, so being here has been good for us and him. So California isn't in our future any longer. The only draw for us going back their was David's family is all there, and I do have a Aunt and cousins, and my paternal Grandmother still there. The major part of my family left California a decade ago, went to Idaho for cheep housing and cost of living. I guess we are like a lot of Californians, it just got too costly to live there, though it will always hold a special place in my heart. While we don't love Colorado, we
were in Southern Oregon before we came here and would love to go back, maybe after the kids are out of high school in five years.

I'm glad everyday to be doing well, it's such a gift! Thanks for reading through my wordy story, just couldn't get it all down without being clear, and since I've had two more surgeries than most it got wordy. My greatest hope for people going through this now is that they get a " Quick" diagnosis, instead of going 16 years like me. I speak with Dr. Kumar's patients that have questions before surgery, and just this last week spoke to a women in her sixties who had her 50 degree curves treated through the years with of all things a " Shoe Lift". She got to Kumar by referral, and now she's a mess, needs a huge surgery, it makes me so mad to hear stories like this of women who are terribly undertreated for years and allowed to have their deformity get so big that drastic surgery is needed. There is so much work to be done in the Scoliosis area, to get Gp doc's aware, not to pooh pooh off curves, and get the word out that many of us that had Harrington Rods are now falling
apart all these years later. So this group has a great opportunity to be a great resource to those who are at the "beginning" of their journey through flatback, and to those of us who are trying to get on with our lives with our revised bodies. Like I said before, I'm so glad to be among friends!

Susan

Colorado Springs

Here are all the address to the group..

2007-01-20 17:50:10

Post message:

the softer side of Scott

2007-01-20 14:21:55

Scott - Perhaps you were just being prepped for the 'hormones' of the
rest of the flatbackers in the world who need you! tee hee ~ kam

Advertising messages.

2007-01-20 12:37:18

The advertising messages are generated by the E-Groups website. They
used to be at the bottom of the messages but now they are appearing

Re: [life-with-scoliosis] Digest Number 55

2007-01-20 10:41:09

Please remove me from your mailing list.

flatback

2007-01-20 00:19:20

Hi Nancy and all,
At the top of your message, I keep getting adds for visa cards. I seem
to get these a lot lately and I'm not sure if they are coming with
individual email messages from the scoliosis list, or if they are coming
as part of my larger email system (ie my internet provider). Is anyone
else getting these? Can someone please answer me?
Diane Popiuk
I'm using yours because there is one of these egroup things on it, but I
get them on many other messages as well.

A way to many money at home.

2007-01-19 15:13:48

I have spend a fare amount of time researching this.
I think it would be a great way to made money for home it's very user friendly, and no experience is need.

Will answer any questions!

******************************************
START TODAY!!!!
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If your interested contact us. coank5531@...
* http://my.bigplanet.com/opportunity/presentation.html

Karl & Penny Coan

puppies and dr. bridwell

2007-01-19 12:23:22

I 'confessed' to a group of gals I went to a spa with on Saturday
morning that I had had a horrible thought. I guess I will confess
here too. I, in a weak moment, thought to myself (my hubby will not
be pleased about this), ~Maybe we should get Theadore a puppy.~
Theadore, of course, is our 13 year old parti cocker. HE was my 21st
birthday 'responsibility gift' from my parents and has been a little
clingy the past few days. Samson, albeit almost 3 times as big as
him, was his puppy. They were very close. The next thing I told my
friends was that if we get Theadore a puppy, Adam and I will be the
ones who end up taking care of it! Then I felt like the mother of a
teenager... Jury is still out on this one.
Regarding Dr. Bridwell and Dr. Lenke, the cleaning lady at my office
has a daughter with scoliosis and she literally freaked out when I
told her I had a surgery date and that the surgery would be in St.
Louis. She asked the name of the Dr. and then told me that
EVERYTHING would be just fine that they do miracles and I didn't
need to worry about a thing. When I explained I would get a 2nd
opinion in Amarillo, she told me to cancel that appt. There was no
need for another opinion. I was in the best possible hands. She
bragged on the hospital and everything about the experience she and
her daughter had.
As if that weren't enough, I spoke with a patient of Dr. B's who
worked as a nurse at Barnes and she said that they put the best
nurses on Dr. B's patients because he is such a perfectionist and
that all of his patients get the very best care. Others might want
to consider that when choosing a doctor. I suspect it is similar for
many of the TOP doctors in revision surgery, but it is never bad to
hear reviews like these!
kam

flatback

2007-01-19 04:51:09

Wow Nancy!
Sounds like you've decided on having surgery and are ready to go! I like
the idea of 6 weeks rehab- wonderful.
I hope it will be a great success. Will be praying for you.....
Take care,
Sanette
On Mon, 11 Sep 2000 08:52:23 +0200 Birch <nabirch@...

YourSurgery.Com - Lumbar Spinal Fusion

2007-01-18 18:32:11

http://www.yoursurgery.com/data/Procedures/spinal_fusion/p_spinal_fusion.htm

MEDLINEplus: Back Pain

2007-01-18 15:33:55

http://www.nlm.nih.gov/medlineplus/backpain.html

FW: "that"

2007-01-18 13:23:56

Thanks Nancy. :-)
Peggy Greene
JPG Unlimited
Antiques & Collectibles
jpgreene@...

Re: FW: "that"

2007-01-18 11:01:58

I can only respond for my husband and myself - after six surgeries we can
still do "that" just fine. There is of course the post-op period when
"that" is the last thing you're going to be thinking about, but you'll be
surprised at how quickly Mother Nature sorts things out for you. I was
married when I had my first surgery and was in a cast for a year - and it
didn't stop anything - just made us more creative. So I don't think you
have anything to worry about.
Best,
Nancy from Italy

Thank you Edie

2007-01-17 22:30:47

Hi Edie....Thank you for your email inviting me to join in on the
group!! I hope you had an easy go your first day back at work! How
are you feeling these days? Better, I hope! Any thought on if you
will go ahead with the surgery? Hope all is well with you!
Suzie

flatback

2007-01-17 18:11:35

Peggy...
Like everything else, it depends on the individual and the surgeon.
I've heard of doctors telling their patients to plan on waiting 6
months. I also someone who claims HE had sex while still in the
hospital.
Regards,
Linda

surgery soon, how will the surgery affect your intimate relationship with your
significant other? Will it be impossible or difficult to "you know" after
surgery? Because if that is the case I only want surgery as a last resort! My
husband is quite a bit older than me and I know we aren't going to have a lot of
years together (we'll only make it to our 25th Anniversary if he lives to be
79)! If surgery will end that part of our relationship, I don't want to have
surgery now after being married only a year! If surgery improves things, then I
would like to know that also. I'm not in pain or disabled enough at this point
that I need surgery right away. If having surgery before it gets too bad would
give me 20 great years of little pain, etc., then I would seriously consider
doing it next year or so. Otherwise I'll probably wait until it's absolutely
necessary. I hope I haven't offended anyone by asking such a question. I don't
need details, just want to know if "that" is better, the same or worse after
surgery. Maybe y'all want to know but everyone's been afraid to ask! :-) You
may answer privately if you so desire. Thanks!

Re: [Flatback_Revised] whirlwind week(s)

2007-01-17 10:30:26

Hi Kam, my heart breaks for you at the loss of your beloved pet. The hardest thing I ever had to do was put mine down. The only cure was to get another puppy ASAP which I did. It was great having laughter in the house again.

I am glad you were so pleased with Dr Bridwell. His partner, Dr Lenke, did my surgery and I was impressed with how clean the hospital was. Maybe I just got lucky but all the nurses were right there when you called for them.

Their physical therapy program was also excellent. They put you through the ringer but that's what we need to get back home and take care of ourselves.

Good luck with your appointment with Dr LaGrone.

Joyce E

ConsumerLab.com - independent tests of herbal, vitamin, and mineral supplements

2007-01-17 04:01:04

http://www.consumerlab.com/results/gluco.html#update

Re: I finally made it here!

2007-01-16 23:53:04

Susan,
It is great to have you here!
Kathy
Txbluebelle

FREE EYE CARE FOR SENIORS

2007-01-16 19:02:32

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Across America, 7400 ophthalmologists will give free exams
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information or the nearest participating ophthalmologist,
call
1-800-222-3937.

Re: I promised to write this/Scott

2007-01-16 14:24:16

Scott!
Thank you so much for writing that! What an interesting story! I had
often wondered exactly what your experience was with scoliosis. You may
be a moderator and guardian of the hens in the hen house, but you are a
member of this group too. It is good to hear from you every now and
then.
The only thing you left out was who did your surgery? Just wondering...
Kathy
Txbluebelle

Re:rehab

2007-01-16 06:24:41

I can only speak for the rehab unit (it also had a surgical floor and they
did scoliosis surgery) I was in in Lyons, France, so my experience may have
been nothing at all like an American rehab unit. I had a ball. The
kinesetherapists were fun, there was a swimming pool, if we were well
enough we could go out every afternoon for a couple of hours (we usually
ended up at the local bar drinking pastisse). The physical therapy was
individualized and we were followed individually. Two people to a room, and
I'm still close friends with one of my roommates. (I was in the center
four times - and in fact, a lot of people go once a year for two to three
weeks - particularly people who have had polio).
There was a psychologist to hash things out with if necessary, of course
the physiatrist, a regular doctor (I had an appendix problem and he was
there in about five minutes).
Meals were sit-down and we were assigned tables on the basis of the day we
were admitted - this was done purposely to force people to mix and to
create a cohesive group - we ate all our meals at our assigned table, and
the six of us became like a family or in American terms a miniature support
group - so when somebody from "our" table was operated on or had a cast put
on, everybody would "be there" before and after.
There was a beautiful park and we could walk around the grounds whenever we
wanted. There was also occupational therapy - bricolage and stuff, which
helped pass the time. A TV room, a coffee and soft drink bar (no hard
liquor though beer and wine were served with meals along with an assortment
of juices).
Also a fully-equipped apartment where we learned how to iron, make beds,
and do all the things we had to do in a different fashion with our "new"
backs. That was called ergo-therapy and we had to do that once a day - it,
too was customed to the patient.
If someone was stuck in for a week-end (like when your're post-op and
wobbly), the spouse could come for lunch - they set tables (behind a
screen that looked out onto the park) for two with a rose and tablecloth
and linin napkins. They made a very special effort for people who were
there during holidays - fantastic food (once they served baked Alaska) -
champagne in ice - the works. Once I was there at Mardi Gras and they had
a huge party - these were the old days of halo traction and elongation
casts, so you can imagine some of the costumes people made.
I was there in the summer too and they had their Olympics: teams consisted
of three or four patients, a therapist, doctor, janitor or cook - the chief
surgeon, Pierre Stagnara, took part in the potato-peeling race and the
knitting race. Our team won the target-shooting medal - I still have mine.
I'm just hoping the Paris center will be as good as the one in Lyons. The
French firmly believe in rehabilitation, for two reasons: first, they don't
want their patients too far away soon after they've had their surgery in
case there are problems, secondly, they believe we should be able to be
completely self-sufficient when we go home.
As usual I have been logorrhic - all this to say that I'm SURE there are
good rehab units in the States too. Start looking into it. For me, at
least, it was much worse the last time I had surgery when I came straight
home from the hospital in an ambulance. Everybody was tense and all I could
do was lie around. I could not even get up by myself. I had a terrible pain
at one point and there was no way I could get to the doctor in Milan so I
had to make do with a local orthopedist who didn't know dingbats. Was just
lucky that it was nothing serious. I really hated being dependent on my
husband and son - in the rehab unit they're paid to get you out of bed if
need be so you don't have all these guilt feelings either.
Best,
Nancy from Italy

hello... and my story

2007-01-15 23:26:09

Yes (looking back I see I missed one key word - it was intended to
read "back to more caution with lumbar disc replacements", not "with
lumbar discs") - basically QMC regard extending a fusion past an
artificial disc without removing that disc as a bad idea. And as the
use of artificial discs is getting wider, and more people who would
previously have been excluded from trials are getting them, more are
having to be removed because they fail to resolve the problem and then
leave it impossible to fuse without removal. Or so I was told by the
registrar - he could understand my eagerness at the idea I might be
able to have one instead of getting extension to the sacrum, but said
that quite coincidentally he'd spoken earlier that week to a visiting
German surgeon who had been doing quite a lot of them and after having
to remove several on the trot is now refusing to do any more until
there is more known about when they will and won't work.
You know, I'm starting to get old - that check up was the first time
I've looked at a doctor and thought "Goodness me, you can't possibly
be old enough, where's the doctor?" (he was definitely younger than
me) - I think I scared the poor guy with all my questions :op He
really was lovely though, and couldn't have been more helpful. He
hasn't entirely put me off the idea either - unless the nerve
damage/paralysis risk is too high, I'm inclined to think it's probably
worth the risk of it needing fishing out at a later date to maintain
some mobility. On the other hand, if they confirm the probable
spondylolisthesis at L5-S1, unless that's very small it'll rule it
out.
titch
--
Something unknown is doing we don't know what

Fibromyalgia Research: Challenges and Opportunities

2007-01-15 21:53:52

http://www.nih.gov/niams/healthinfo/fibromya.htm

flatback

2007-01-15 11:18:54

Thanks, I did talk it over with my doctor, but she basically said recovery
time is so individual they can't tell.
Her assistant is already checking on the insurance part for me.
I know, my Mom hated the nursing care she got after she broke her hip. But
I valued my time in the hospital when I had complications with my
pregnancy. Sons (as well as cats!) don't always come when called either!
:-)
My concerns are mainly with whether I will be able to get up and go to the
bathroom and shower and dress without help.
Nancy

flatback

2007-01-15 02:01:37

NB...
You should talk this over with the doctor. Not only would you need to
determine if your insurance covers rehab, but whether the doctor will
prescribe it. If your son will take care of the cats (feeding, changing
litter), do the laundry, and fix your meals for the first 3-4 weeks
you're out of the hospital, that's great. Rehab is often a very
depressing experience, where the care one receives can be marginal.
--Linda

SlapHillary.com

2007-01-15 01:16:41

Enjoy, it's funny.
Hope no-one gets offended by it.

[INLINE]

[INLINE]

[INLINE]
Free speech online!

Re: Law suit=harrington rods/D POPIUK

2007-01-14 12:46:23

I agree wish whets going on have not read all the post but I have had dealing with SSD . I agree something needs to be done but changing the way people feel etc. getting the right one to listen there are so many obstacles to over come. I have a company where we all can benefit some of you might want to view it,. I been working on the same thing like many I just started and feel like in some way what available to me would be of access. I have connections to a web page/s that are cheap to host and very simple to use the are other products the have to offer ISP service, long-distance, a private portal with a least 250 members
and much more. If you or anyone else would like to view it just reply in a email and let me know. I enrolled with thus company when it first launched I check the BBB but it was new an the had nothing on it I also check many other sources checking it out anyway it might be what so of you are looking for it would also probaly something Linda and rich might want to look at. Anyway if I can help do not hesitate to post me.
my address is coank5531@bigplanet if you wish to talk about this off the list you can also reach me at life-with-scolosis either address is fine.

To everyone dealing with the SSD be patient and nice to the medical people it will pay off and don't let it get you done many are working on making something happen.

GOD BLESS!!!
Karl

flatback

2007-01-14 09:26:09

This is the same thing my doctor told me, and I'm having it corrected Dec. 5.
My folks are wondering about the rehab part--I know when I had my Cesarean
section, I could hardly take care of my baby I was so exhausted, so I know
major surgery really knocks you for a loop. If my health insurance pays for
it, do others think I should go to a "skilled nursing facility", as they
are called, for a bit, or go home? My 17-year old son and my two cats would
be home, and he could fix meals/grocery shop, etc. since he drives (my son,
not the cats! <grin
Nancy in the East Bay

NIH News Release--Glucosamine/Chondroitin Arthritis Intervention Trial Begins Patient Recruitment--12/11/2000

2007-01-14 08:16:32

Thought some of you might find this interesting.
I know some are trying this and having good luck the way I understand it
is it lubricates ones joints but you have to take it every day.
Karl
http://www.nih.gov/news/pr/dec2000/nccam-11.htm

hello... and my story

2007-01-14 01:13:59

My current hospital have definitely done at least one lumbar disc
replacement on someone with a pre-existing long Harrington fusion, and
the person who had it done has already put the surgeon's name in
public, so I'm happy to say it here if no one has a problem with that.
Regarding problems with artificial ones - QMC are tending more and
more to do posterior lumbar interbody fusion (*) when there will also
be posterior fusion and instrumentation, because it gets good results
and is a lot easier on the patient. I think the problems then are
twofold - you can't get the discs out with a posterior procedure, so
it commits you to another anterior, and the impression given was that
if the artificial disc is left in situ, it allows enough motion that
it's harder to get adequate fusion than it is with natural discs. I
would imagine that there is also an ongoing aspect to that, given that
discs within a fusion typically dessicate and ossify, whereas an
artificial disc would likely continue to be theoretically mobile.
(*) my revision was posterior only because they used the posterior
incision to reach around to the front and smash my anterior fusion,
and smash up where the anterior rod was situated. They seem to be
trying to go posterior only whenever there is going to be a definite
posterior element to the fusion
titch
--
Something unknown is doing we don't know what

Beth.

2007-01-13 17:24:56

How are you today?
Fine we hope but I understand the SS system probley has your has your
whole family in a tail spend.
Dealing with them is a pain and puts unneeded stress and pain in a
already unplesant life.
Anyway I messing around in the life-with-scolosis site do you have
anything you want to add?
I put a link to Minas site on flatback thought you might like thatand
another one.
Don't want to make finding info. hard on anyone do you have any
suggestions?
You know other are talking along the same lines as we are wanting to
bring scolosis to the awareness of others the big boys etc., I feel it
can be done but first I think one needs to change the way people think
about it first. A well as other disorders.
When I first started messing around looking for info. it was on Pennys
PBC, I am amazed at there site they started out very small and have
now gotten the right people together and become very big and got a lot
of the right attention.
Have a look if you have time.
http://members.aol.com/_ht_a/pbcers/pbcers.htm
Just wandering I know it is probaly a hard question to answer but how
long do you thing you will be on the net?
I sure am sorry you were turned down at the SSD office, don't give up
I know it hard but something always happens.At less thats the way it
has been for me when ever I have feel there was no light at the end of
the tunnel GOD somehow has showed me one never what I was looking for
but something. And with all the bad stuff going on here sure have had
a lot of good come out of it.
Karl

Re: flatback

2007-01-13 13:16:21

Dear Peggy,
I have a date with a surgeon on October 23: he's going to fix my
flatback. I'm not very excited about it, but after going to Mayo, Johns
Hopkins, Lyons, Genoa and Paris, and after all of them said the only option
was surgery, I decided on the gentleman in Paris.
I was also told by all of them that one can live with it, but
that it will only get worse and one will grow gradually more incapacitated
- as I am already leaning forward, all my lower back, hip, and leg muscles
are doing work they shouldn't be doing. Once the back is out of alignment,
it throws everything else out, meaning future problems for other body parts.
Believe me I did not want to do this - in fact, after I was told
it had to be done, I waited two years before even seeing another surgeon.
Then I started touring till I found what I felt was the best (and since I
live in Europe) the most affordable solution.
By the way, for those who know me, I'll be in the hospital for 2
or so weeks and then will be taken to a rehab center near Versailles for
six (yes six) weeks - the French are strong believers in rehabilitation -
thanks to national health, my total copayment for this should amount to
about 600 USD. (The French system requires a copayment of 70 Francs a day
for the hospitalization - that's about 10 dollars I think). There will be
other expenses like phone and a TV if I want it, but they seem quite
reasonable. Was told to bring a bathing suit. Sounds almost like a vacation
- if I didn't have to go through the surgery.
Good luck on making your decision. Don't rush it and don't do it
unless you're convinced. I'm finally, I think, convinced, but I'm awfully
scared.
Best,
Nancy from Italy

Re: hello... and my story

2007-01-13 03:10:30

Hi...
I'm back from Kansas City, and when I have more time, will definitely
come up with some sort of synopsis of some of the interesting papers
presented at the Harrington Spine Symposium.
Titch, I'm not sure what you mean by "it's worse with artificial
ones." Can you clarify?
Also, in regard to Nanfash and the disaster of her artificial disc
surgery... My understanding is that she had requested an artificial
disc, but it was decided that she wasn't a good candidate. Then, the
night before her surgery, Dr. Farcy told her that she could have one
after all. Although it would have been WAY preferable to have more
time to consider it, I suspect that, given her desire to have the
artificial disc in the first place, she would have decided to go ahead
with it even if she'd had a lot of time to think about it. I think
many of us would do the same thing. There are definite risks that go
along with being a guinea pig. I keep hoping to hear that Nanfash's
computer crashed which is why she's disappeared, but I fear that she's
even worse than first thought.
Finally, while at the HSS, I heard that one doctor is studying the use
of artificial discs below prior fusions. I'm going to try to confirm
that, and get more information before releasing the surgeon's identity.
Regards,
Linda

Re: I promised to write this

2007-01-13 00:28:04

Scott,
I never realized your surgeries were so close together and both came
in your adult years....that stinks. Has anyone ever told you why you
developed the flatback so quickly and did you go to a different
surgeon for revision?
It seems that the post revison depression is a fairly common theme.
I didn't get depressed but I was shocked at how fragile the Endocet
made me feel...like you say, even a hallmark commercial could reduce
me to a crying blob...and I was on a fairly low dose.
It seems funny that no one really warns you about the emotional side
effects of the surgery and the drugs...it seems if there is work to
be done on preparing for this surgery this is one area that is
surely lacking.
As always, I feel like I know you even better now...thanks for the
background! Cam

I finally made it here!

2007-01-12 18:11:03

Dear Group,
So good to among friends, and after an awful week of trying to get our
internet up, my husband messed with it himself, or else I'd still be
waiting for the cable company to come out next saturday.
Cam, such a terrific job getting this up and going, this is a
wonderful thing you have done for us! I have much reading to do and to
post my own " Story" but just wanted to say " HI" and I glad to be
here with you!
Susan
Colorado Springs

I promised to write this

2007-01-12 14:44:03

The history of my back (tada!)
I was diagnosed in 7th grade through a school bend test. A year
later, my case was considered borderline (idopathic S-curve,
probably in the 40-degree range) so my parents decided not to
operate then. I wore a Milwaukee brace until my freshman year in
college.
Around age 37-38, I developed problems. I tired easily and my back
really ached after volleyball, running, jumping rope, or carrying
the kids on my shoulders. It took about three days for my back to
get back to normal. (The "tired" thing was a big clue. I had more
energy than anyone on the vball court. I had to catch my breath one
time and one of the ladies noticed that I never used to do that.) I
also noticed what felt like a pin being pushed into my back just to
the right of my left shoulder blade. So, in a word, my quality of
life was down the tubes, I was in pain, and I knew the time had come.
My curves had progressed to 60/48. March 1996, at age 39, I was
fused from T4-L4 with Luque rods, posterior only, 9 days in the
hospital, no brace, no PT. (Who still remember trying to sit up in
the hospital bed for the first time? Hoo boy! I also felt sort of
bad for Terri. I slept for most of visitor's hours and usually woke
up about 10 minutes before she had to leave.) Recovery was fairly
quick and I was out of work for *only* three months. Had depression
for a few months during recovery. To tear up at the drop of a hat
was sort of scary. When I came home, I remember Terri making
a "nest" out of pillows in our bed. I was pretty happy believing
that I would not fall out of bed.
Life was good for awhile. Once my year of recovery was up, I even
went back to playing volleyball. But about 1 1/2 years after
surgery, I started getting pretty strong aches in my lower back all
the way to my stomach. I eventually was diagnosed with a slight
case of flatback (which is why I joined these groups) and DDD (the
discs at L4-L5 and L5-S1 were both shot). I eventually couldn't
walk more than a couple hundered feet before needing to rest. I was
on pain meds which made it difficult to function as a programmer
(really embarassing when you had someone explain something and then
had to ask them to repeat themselves because your short-term memory
kind of quit on you). I slept with an entire quilt rolled up and
placed under my knees. I had a round of PT which didn't work at all.
Next fusion (Jan/Feb 2002, age 44) was from L3-S1 (L3-L4 was redone
because of pseudarthrosis), A/P, 14 days in the hospital, elastic
brace around the waist, PT afterwards (pool and land), 6 months
recovery. Brought a walker home with me which I used for a couple
of weeks. I also didn't use a toilet extension which I regret.
(Anterior surgery for men can be a problem if your surgeon doesn't
avoid cutting a certain nerve which causes impotence. I have a good
surgeon.)
This whole thing was more difficult than the previous surgery.
Sitting up was a little quicker (experience is good), but walking
around the coridor was hard. Having the tube down my nose caused
irritation in my throat which made me cough. (Not fun after your
innards have just been messed with.) I have a new found respect for
heart patients and women with C-sections.
I found out soon after that I had a vocal range of about 1 whole
step. (Yes, I have some singing skills...not a pro by any means,
but I hold my own in any group I've been with.) The voice came
back, but it took several months.
I also developed my depression again. This lasted longer than the
one after the first fusion. I saw a psychologist for a few months
but I felt that just waiting for the condition to clear itself would
have been just as good.
I had my nest in the bed again. I'm fortunate enough to have a
guest bedroom on the first floor which Terri and I used for a few
weeks. Getting up in the middle of the night was very difficult.
My body temperature was probably out of wack and I was freezing
trying to use the walker and get to the toilet. Terri scrambled to
find a robe which made it a little better.
A year later, I started developing some of the same symptoms as
before surgery (strong aches around the back and stomach area). The
ortho recommended PT. I was pretty apprehensive because PT had
*never* worked before. This was different, though. Turns out that
although my back muscles were strong, they had no endurance.
Another six weeks of pool and land PT, a new set of exercises, and
I'm doing okay.
A funny thing about the morphine pump I was hooked up to in the
hospital bed. It gave the meds correctly but the warning buzz came
on when it shouldn't. The warning buzz is supposed to tell you that
you kinked the line. I think my pump was infested with "pump
sprites" or the like. Since morphine affects people in, err,
interesting ways, I think the nurses expect this and probably don't
take a patient's opinion on what's wrong too seriously. I was
talking to the head nurse about the problem when it chose to start
buzzing. I hadn't moved my arm at all. The line wasn't kinked.
Vindicated!
Scott

Group.

2007-01-12 05:48:14

You all for your own security purposes everyone posting to groups needs
to get a email account at one of the sites that offers a free one with
usually 6mb of storage space.
This keep the bad apples for getting your personal info. at home. And
please due not give out personal info...
If you want more info. on getting a email account post me.

Water Therapy/Ann

2007-01-12 00:33:13

Hello Ann: Yes, I walk a few miles several days a week. I find if I don't add this exercise/walking regime on my list of things to do, it's easy not to do it. But I find that I feel much better if I do it! My leg muscles are more limber, and I'm generally stronger. When I say stomach crunches, please keep in mind that I do a very mini version of this.....such as lie on my back, and tighten my stomach muscles before raising my head and shoulders (slightly). I'm sorry I have no hand outs, as I was taught this at hospital in Amarillo. But each case is different, and I would caution to follow what the surgeon recommends. Walking is safe for anyone, though. My best to you. Paulette
ae_mcd2003 <ae_mcd2003@...

Thanks for the information, Paulette. You don't by any chance have
handouts? Do you also just walk? I cannot imagine doing stomach
crunches.
I work -pretty much full time now- and I end up dragging myself home
then I need to lay (lie?) down for a while. I am finding it hard to
find the time to exercise. Last week when I was on vacation and
walking and having fun (not sitting at the computer all day) I really
felt pretty good. So,I am positive that moving is good for me.
BUT - I do have a plan!!! The school my daughter will be attending in
the Fall begins at 7:20 in the morning and she will need to catch a
bus much earlier to get cross town. So, I will be forced to get up
early. I will have no excuses not to go to the YMCA each morning
before work.
You guys should make sure I carry through on this and if not come
give me a kick in my (sore) behind.
Best, Ann

Re: [life-with-scoliosis] Hi

2007-01-11 16:42:39

Go here subscribe to the scolosis mailing list ask for Beth Bunch she
will talk.
If you need more help with it contact us.
There are several other places to get info. I put them on the links page
just click on them.
Karl

Hi

2007-01-11 10:07:13

I
would like to get in tuctch with someone how I can talk with about
all problems with scoliosis

A Greeting Card For You!

2007-01-11 06:06:33

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RE: [Scoliosis-Medical] MRI &amp; CT

2007-01-10 20:56:36

Hi Sanette, and list;
Linda had MRI's done both of the lumbar and cervical areas without problem.
There is some scatter/fuzziness caused by the rods but not enough to be a
problem. It of course depends on the type of rods. Linda has Stainless
Steel which have a very low iron content or metallic metal content. I don't
know how titanium or earlier rods/hardware will do. There were no
precautions doing the MRI. There was not heating of the hardware as some
have worried about.
Both procedures were done in an open MRI. There's little difference in the
open verses closed IF you aren't claustrophobic. The open types have more
room inside the unit to make you feel less confined. You still have to lie
perfectly still for about 10-20 minutes at a time depending on the
procedure. They are really not bad to lie in. The table is concave and
there are pillows to support you where ever needed. I've been in the closed
type a couple of times and had no trouble. Listened to music and took a nap
both times.
The open MRIs' are newer; so there maybe a better image produced. That's a
guess; so you should ask. Also ask your surgeon about doing the procedure
and see if there's any hardware problem.
Warm regards,
George n Linda

THE HIGH COST OF MEDICAL CARE

2007-01-10 12:46:40

THE HIGH COST OF MEDICAL CARE

MRI &amp; CT

2007-01-10 05:50:55

I would like to hear from anybody about their experiences re MRI/CT
after surgery. Could they get a clear image with the instrumentation?
Also with the "open MRI"- how much is it different from the "traditional"
MRI re the patient's experience?
Thanks
Sanette

Re: whirlwind week(s)/Kam

2007-01-10 01:33:25

Kam,
Thank you for your very long and thoughtful post! I am so sorry about
your precious dog!
It sounds like your visit went well with Dr. B even though there were
a few glitches. I can see where the treadmill and bicycle test might
be important. I know Feb. is a long time to wait, but at least this
way you won't be recooperating for Christmas! It can be pretty snowy
in Oklahoma at that time of the year, but OU has that absolutely
beautiful workout center you can go to!
I have to agree with you, I would want a very focused doctor! It is
wonderful your local doc will help you out with pain management. Just
look at it as having some extra time to get yourself in the best
shape possible, physically and emotionally.
Take care!
Kathy
Txbluebelle

Magical Evening - from Karl &amp; Penny Coan

2007-01-09 19:53:40

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Re: whirlwind week(s)

2007-01-09 19:51:04

Kam - I've only just read the first half of your post...I'll finish
reading it when my tears dry. My heart goes out to you on your
loss. I understand what you're feeling Kam, I've had to put too
many of my dogs down myself. There are no words to offer
comfort....know that he will always be with you in your
heart. "UNTIL ONE HAS LOVED AN ANIMAL, ONE'S SOUL REMAINS
UNAWAKENED (Anatole France {1824-1924})
~Mary~

Test..

2007-01-09 12:40:47

Test...

whirlwind week(s)

2007-01-09 07:46:42

Hi all.
I have been pretty down this past week and on Thursday evening, we
had to take our precious 12 yr. old lab mix, Samson, to the
emergency vet. He weighed 35 lbs. - down from 62 in December, had no
air in his right lung and major congestion in his left lung. He'd
been battling an inoperable tumor for approx. six months and we were