Hi Christine.
Can't it just be attached to the e-mail and be sent out or won't it allow
it?
I still have my 1st brace thing I had to wear when I was 7 yrs old, 14 years
ago now. Scary! But I only had to wear it after my 1st surgery as a child
for 12 months and it was just like a lump of cheese.
Sarah.
Hi Angie!
I just have the kyphoscoliosis, no other things like it developed secondary
from another medical conditon.
My surgeon has marked on my file that my spine cord has been stretched. Or
am high risk because of it stretching. Something like that all i know is
I've got "Risk decompression of spinal cord" because something showed up on
the MRI scan I had done a few years back.
My surgeon is very helpful...not. He even told me soo much about these
spine conditions when I was growing up and now that I was kind of ignorant
about it growing up because I knew so little about it other than what my
surgeon said an operation makes me better, that I had to find out what info
I know so far through the internet.
I'm in the UK, but it doesn't get much better. My dad made me laugh the
other day about it because he said it's like the surgeons over here kind of
treat people as though they're just a peice of meat on the table to cut up
then try their artistic still at trying to sew someone back up.
Gravity doesn't help what so ever! My ribcage feels as though its about to
touch the floor sometimes haha!!
I don't know how difficult it is to get a referral over here because I've
never had enough info and a good enough reason to get a better doc than I
put up with. I want to be under a diff doc because I feel as though I keep
getting rebounded an hitting the kerb when I want to know why it's affecting
my breathing and my back alway aches although I get told all the tim my
curves haven't moved.
I want to be straight, but my surgeon won't make me straight, it would
probably make my breathing easier. He just says it's too dangerous so I
give up asking with him ages ago.
Where about in America are you?
Anyway gotta go it's getting late over here.
Sarah.
hey Karl!
thanks so much for all the information! i went and looked at the
websites and found alot of helpful things:-)
almighty dollar like so many others and
boy do i hear you! :-) unfortunately it is just to expensive. my
potential new wheelchair alone is going to total $20,000. more than
my van cost!!!! so until i win the lotto i'm stuck with my HMO....
i don't get cramping type pain. my pain in my hips is sharp and
severe and is caused (so the doctor says) by arthritis, dislocated
hips and the dystonia. the pain is deep in the joint.
My back pain is usually aching. the kind of pain where you just don't
want to move and are really uncomfortable.
although i can not lay totally flat because of my twisted legs,
laying down (sort of laying down) makes my back better. the scoliosis
is less severe (the doctor said the scoliosis is flexible) and makes
my back feel better.
for pain i sometimes take vicodin which was given to me for my facial
pain (i sometimes have severe facial burning from rosacea...so bad it
makes me suicidal....much worse then the pain anywhere else on my
body) but the drug will also dull my other pains. plus it makes me
sleep which i like as i have problems sleeping.
i have to be careful of what i take as so many things can make my
neuro problems worse or my rosacea...but i will check this drug out.
doesn't hurt to ask:-)
anyway, take care and thank you so much!!!!
PS...also much appreciate the DBS post. interesting and i looked it
over to see if anything was promising. although i am not a good
candidate for DBS. most things i used for the dystonia was all
dopamine drugs and none worked. i'll have to maybe insist on seeing
another neurologist to get an update on where i'm at with the
dystonia...seeing as i haven't been evaluated in years and years.
Angie
--- In life-with-scoliosis@y..., Karl & Penny Coan <coank5531@b...
Hi,
I just took a couple of pictures of my old milwaukee back brace that
is approximately 16 yrs old. I'd like to post them here to let
everyone compare to what theirs looks like. I'm curious to know how
many of them differ from mine. Mine was designed by the Twin Cities
Scoliosis Center in Minneapolis, Minnesota.
Let me know if it's ok to upload them somewhere.
Christine
Angie thought you might want interested in this they have some info. on their Disronia studies.
Karl
hi sarah!
thank you for all the info, i really appreciate that:-)
ahhhh, such is the beauty of HMO's :-) i have not seen an ortho
doctor since my early days at Shriner's hospital. during that time i
was very young, just starting to have neurologic problems that were
undiagnosed, did not have scoliosis and somehow they missed the
dysplastic hips developing. they thought i had a femoral anti-version
only, which is a rotated femur. my legs are twisted inward badly
(from dystonia...the orthopedic problems are secondary).
since i left Shriner's after becoming to old, my HMO (kaiser
permanente) took over. they have been awful from the start. to long
to list. a neurologist finally diagnosed the dystonia. after a couple
years my case was dropped by the neurology department. since then i
was always refered to general doctors who knew nothing of dystonia or
my orthopedic problems. never once did any doctor want to check on
how i was progressing except one of my doctors which could really do
nothing. my dermatologists are great and have always been concerned
over my health. but they do not know anything about it as they treat
the skin:-)
if anything sitting in a wheelchair all the time can cause numerous
problems with your body. that alone should have been enough to watch
for problems.
somehow in the last 7 years or so (of not seeing any doctors except a
dermatologist for my rosacea) i developed severe (kypho)scoliosis,
dislocated hips, etc. those problems i blame on sitting down. gravity
does wonders to your body:-)
it is difficult to get referals to any specialist and they are denied
alot. so i never bothered to insist on anything. i am used to my
crooked back and my legs have always been screwed up.
well, until i saw a physical therapist whose first remarks were "Oh
my God". she went on and on about my back and was royally ticked that
nothing had been documented in my files about scoliosis (meaning no
doctor had bothered to ask about my back).
they are trying to get me to compromise on special seating equipment.
all my wheelchairs have been bare essentials (which are still
expensive...my current chair is $16,000) which have casued alot of my
problems.
my problem is i hate being straight. it is uncomfortable and hurts,
but i can breathe better. my most comfortable position would be to
twist all the way over sideways and my head tilted. of course that
makes them cringe:-)
anyway, i want to thank you again for all the info. i much appreciate
it.
Angie
--- In life-with-scoliosis@y..., "Sarah Small" <scoliosis01@h...
Hello ntegrit welcome to the group, I am not familiar with recurring scoliosis
as far as I know once
you have scolosis you always have it as we age it causes more trouble is this
what you mean that it
has caused other problems?
If you will go to the bookmarks site under "research only please" then scroll
down to the 6th link
and use the link named ADULT SCOLIOSIS LINKS this site should help if not post
back Elizabeth Mina
has a lot of info. right up you alley try it
Medline is another excellent site for info. it to is on this page using their
search engine will lso
give you lots of info. just type into their engine whatever word and it will
list a bunch of other
sites with whatever info. it is your seeking and spineuniverse is another good
one plus some other
we have put there. If you need further help post us.
Have a good one.
Karl
Hi Angie.
I have Congenital Kyphoscoliosis. Congenital scoliosis is due to a
developmental deformity in the formation of the vertebrae at birth.
I'm Sarah and I'm 21.
How come they didn't make an effort to get you seen before?
The curve usually (I think) is more noticeable when I bend forward and sit
down. I think it could be like that on most people.
Scoliosis is a sideways curvature of the spine curving to the left or the
right.
Kyphosis is a curving of the spine that causes a bowing of the back, such
that the apex of the angle points backwards leading to a hunchback or
slouching posture.
Kyphoscoliosis is these together.
Causes and risks for Scoliosis that I've found on one website.
Scoliosis may occur by itself, or in combination with kyphosis (the
condition is then called kyphoscoliosis).
There are three general causes of scoliosis: congenital, usually related to
a problem with the formation of vertebrae or fused ribs; neuromsucular (poor
muscle control or muscular weakness or paralysis due to diseases like
cerebral palsy, muscular dystrophy, and polio); and idiopathic (of unknown
cause), which appears in a previously straight spine.
The idiopathic form in adolescents is the most common and may have a genetic
predisposition. Most cases occur in girls and curves generally worsen during
growth spurts. There are infantile and juvenile forms that are less common
and affect a similar number of boys and girls. Scoliosis may be suspected
when one shoulder appears to be higher than the other, or the pelvis appears
to be tilted. It is not uncommon for parents and friends to notice nothing.
Routine scoliosis screening is now done in junior high school/middle school
and many early cases are detected that previously would have gone unnoticed
until they were more advanced.
There may be fatigue in the spine after prolonged sitting or standing. Pain
will become persistent if irritation of ligaments results. The greater the
initial curve of the spine, the greater the chance for progression of the
condition after growth is complete. Severe scoliosis (curves in the spine
greater than 60 degrees) may cause respiratory problems.
Causes and risks for Kyphosis.
Kyphosis is a spinal deformity that can result from trauma, developmental
problems or degenerative disease. Kyphosis can occur at any age although it
is rare at birth.
Adolescent kyphosis, also known as Scheuermanns disease, results from
wedging of several consecutive vertebrae. The cause of Scheuermanns disease
is unknown.
In adults kyphosis can be seen as a result of osteoportic compression
fractures, degenerative disease (like arthritis), or spondylolisthese
(slipping of one vertebra forward on another).
Other causes of kyphosis include infection (such as tuberculosis), spina
bifida (congenital deformity with incomplete formation of part of the
spine), disk degeneration, endocrine diseases, Pagets disease, polio, and
tumors.
Kyphosis can also be seen in association with scoliosis (an abnormal
sideways curvature of the spine seen in children and adolescents). Risk
factors are related to the causes.
I have it, and I don't know what they'll suggest because of your neurologic
problems. I think they've got to know your curves degree and know your
situation before they could give you decent options because everyone's
curves are different.
I had to have surgery for mine. I had 2 operations, 7 years apart, one when
I was 6 and was 7th birthday in hospital and other operation at 14yrs old.
Yes my lungs are affected to as the shortness of breath is there which is
annoying.
Sarah.
hello everyone:-) my name is angie. i'm 25 years old. i'm wondering
what anyone can tell me of my situation.
i recently went to an orthapedic doctor because i need a new
wheelchair and the physical therapy department made me go see her.
they were really upset over my back and hips and that it hadn't been
followed up on for years. anyway, blah blah blah:-)
first off, i have a neuromuscular disease called generalized dystonia
and have been in a wheelchair since age 15. i also have a
neurovascular disease (severe and painful rosacea) and numerous
hormonal problems. anyway, i took x-rays. finally after 2 months!!!
my HMO got there act together and i saw an ortho doctor. she said the
x-ray showed that my hips did not develop normally and are dysplastic
(severe hip dysplasia). also i have something called kyphoscoliosis.
the scoliosis was probably caused by 10 years of sitting down and
poor wheelchair seating (the cheapest chairs the HMO gets you will
hurt you in the long run!).
she said she was not specialized enough to handle my case and wanted
to send me to some other guy. well, that was almost a month ago. i
really hate my hospital. and i still don't have a new wheelchair.
ahhhh!
so, i don't know the degree of curve. she said it was severe when i'm
sitting, but more mild when laying down. i have bad back pain and
shortness of breath. i have for years. i did not have scoliosis as a
child. it developed at about 20 years old and gets worse over time.
my hips are extremely painful and have been since i was 12 years old.
so, does anyone know exactly what kyphoscoliosis is, does anyone have
it? what do you think they will recommend for me to do? does anyone
have shortness of breath? i can't tolerate bracing of any kind
because of my neurologic problems. anyway, if anyone has any input as
in what i have to look forward to i'd love to hear it. i've always
just ignored it as i'm so used to being that way so i don't know what
if anything can be done in my case.
thank you and take care,
Angie
Hello Angie, I am Karl, I too after being shoot in 1966 in the abdomen had too
use a chair and know
what a pain they are and the system also.
If you can stay away for HMO'S do so they are all about the almighty dollar like
so many others and
like you said will only cause more trouble in the long run . Getting good
medical attention is such
a pain sometimes.
Having to deal with any health realtedproblem is a pain the system is so messed
up and causes us so
much more pain than we need to be put through like they care anyway it's all
about the almighty
dollar.
Here are some site's that will explain your dysplasia of the hip,Dystonia and
Kyphoscoliosis, also
know as scoliosis when doing a search even though it has it own set of problems,
just click on the
words I have made links for you hope they work if not just post back.
We have also put some links on the bookmark page for people to look at medline
is a good one and
spineuniverse.com is a another good one,plus there are some others you might
want to look at.
Feel free to post and ask any questions you wish.
You will also I hope get answers for others
Never give up hope it is all we have!
Have a good one.
Karl
P.S. some questions for me, are you getting sever cramps mainly at night thus
causing you pain, I
started taking a new med called Zanaflex that help me back on my feet getting
rid of those cramps
that were disabling me ask you doc. about it.
I am trying to find some answers just like everyone else. I need
info from anyone with knowledge of scoliosis developing a second time.
I have thorasic idiopathic scoliosis with harrington style correction.
My surgery was 15 yrs. ago. I went to an orthopedic scoliosis
specialist a year ago because I was having(and still am) severe
headaches, mainly on the left side. They were extremely upset to find
I had a severe spondylolisthesis in the upper part of my lumbar spine
(L-1 and L-2 I believe) 1/3 off of itself. They were so taken with
that fact that I don't think they really got what I was trying to
tell them. I knew something was wrong then and am more sure now. I
have developed a small rib hump up on my shoulder. Although small
it's easily discernable. Does anyone out there suffer with scoliosis
in their cervical spine whether secondary to scoliosis in a different
part of the spine or cervical scoliosis in and of itself?
Stress is something we all deal with and as of events 9/11 in NY, plus having to deal with scolosis it is possible that it will most likely push some over the edge and increases one's pain which scoliosis can cause much of. So try to eliminate all you can it will help out with your pain.
Hope your all having as pain free day as possible.
Karl
Hi!
I'm sorry I always see this mails too late. This article is very
interesting. Could you please say me the title of the publication and the
date where you find it?
Thank you,
Alice
http://urbanlegends.about.com/library/blasp.htm
Crystal;
Here is a link that might help answer some of your questions.
Children have a differnt set of suttitions and I thoght this might help.
Sorry I just found out the link on our bookmarks page is not operating.
Karl
http://www.kidshealth.org/kid/health_problems/bone/scolio.html
I was just wondering if you found your way around alright and if you
looked at the scoliosis maling list?
Karl
If you would like to read a great story about an outstanding young woman who turned her scoliosis situation into a support group for others click on www.azstarnet.com/seniors02/propolk.html Amethyst Polk was named one of the outstanding senior class acheivers for 2002.. She has started a support group here in Tucson with the help of Dr. Rolando Roberto of Tucson Orthopaedic Institute who performed her surgery. She was able to return to dance and sports and excelled in both after her harrington rods. She is an inspiration to others.
Personal Time/Your Health
Are Old Drugs Better than New?
Don't switch based on the ads. Some side effects emerge only
after a
drug is approved
BY SANJAY GUPTA, M.D.
Monday, May. 13, 2002
The release of a new drug
is a pretty big deal in the
world of medicine. The
company that made it will
throw a lavish party. The
stock market will react to
the news. Doctors will be
inundated with freebies
and trial samples. And now that the Food and Drug
Administration has lifted
its restrictions against direct advertising, the public too
will be assaulted with
ad campaigns in newspapers, magazines and television.
As a physician, I often hear from patients who have read about
a new
medication and want me to write a prescription. To them, I
must sound like a
stick in the mud. Unless the medication they're taking is not
working, however,
I'm generally reluctant to change. They assume that newer
drugs are better; I
assume the old ones are fine.
So I felt somewhat vindicated last week by a
report in the Journal of the American Medical
Association about the safety problems
associated with new medications. Of 548 drugs
approved by the FDA over the past 25 years,
fully 20% turned out to have serious or
life-threatening effects that were unknown or
undisclosed at the time of approval, according
to an analysis directed by the Harvard Medical
School. Sixteen drugs were subsequently
withdrawn from the market, but not before
millions of people had been exposed. Seven of
those drugs had side effects so serious they
were cited as possible contributing factors in
1,002 deaths.
How could this happen? I put the question to
Dr. Karen Lasser, the lead author of the study.
Basically, she says, "the drugs aren't adequately
studied before being released to the public." As
she points out, new drugs are tested first on
relatively small numbers of users, who in the
past tended to be men. It's only when the drugs
are marketed to the general population and
taken by large numbers of women, children and
the elderly that more obscure side effects
emerge.
The Pharmaceutical Research and
Manufacturers Association took issue with the
study, releasing a statement that called it "misinformed and
misleading." All
medications involve some risk, the drugmakers point out, and
some new
medications have significant additional benefits that are
discovered only after
they are approved.
But the drug companies, by marketing their newest products so
aggressively,
are part of the problem. "They push the public and doctors to
use new drugs
that are more profitable but also more dangerous," says Dr.
Paul Allen, one of
the study's co-authors.
That's a message patients should take to heart. Don't assume
because you see
a lot of ads for a new drug that the one you are taking is
obsolete. And if you
switch to a new medication, be attuned to any unexpected side
effects. The
most common adverse reactions include liver toxicity, heart
problems and fetal
damage.
This is not to say that there aren't plenty of important new
drugs in the pipeline.
I am sure that if there's a sound reason for doing so, I will
still prescribe newly
released medications for my patients. But only when absolutely
necessary.
And then I will keep a very close eye out for any adverse
effects.
Dr. Gupta is a neurosurgeon and CNN medical correspondent
http://www.spineuniverse.com/displayarticle.php/article165.html
http://www.spineuniverse.com/displayarticle.php/article1716.html
http://www.spineuniverse.com/displayarticle.php/article599.html
If the site doe's not completely load either click on the link or copy
then paste it into your browser..
Karl
Hi Sarah,
I've had the some sort of dye injection, x-ray thing done on my
kidneys and found that I only have one. The right one is the only one
I have. I have a curviture to the left so that's more than likely why
I no left. =o) I'm new here so here's my story:
"I'm new to this group and I have had to wear a Milwaukee brace for
11
years of my childhood life. My doctor was Dr. Winter in the Twin
Cities Scoliosis Center. He is a very tall man. =o) Let me tell you a
little bit about myself and my experiences through life.
I was born in 1969 with severe scoliosis & an extra toe on my left
foot. Those were the only two things doctors noticed right away that
was abnormal when I was born. It didn't take long to notice that I
had breathing problems as well as heart problems. Because I have
scoliosis, my rib cage was so deformed. It didn't allow my lungs
enough room to fully expand. I got pnuemonia often.
When I was about one year old, I started wearing my first spinal
brace which was made out of leather straps. When I was 3 yrs old, I
had my first spinal fusion and had to wear a cast from shoulders to
hips for halo traction. That was for 6months. It sucked royally.
Every time I bumped my head, my parents would have to rush my to
Minnesota from Fort Wayne, Indiana, to get the pin (screw)
repositioned. You KNOW that wasn't any fun. =o)
Anyhoo, after the cast came off, I got fitted for a Milwaukee Brace.
That wasn't fun either. =o) My brace had a metal bar down the center
in the front and two metal bars down the back with a plactic girdle
thing around the hips. I absolutely hated the chin rest and the
shoulder harness. I got to the point where I was finally strong
enough to take that thing off by myself. I wore a white tshirt
beneath it and it was hot. I got called names at school but that
didn't bother me too much.
The best thing was that both of my sister who were completely healthy
treated me like a normal kid. My scoliosis cause a lot of birth
defects. I was born with two holes in my heart (one repaired with
open heart surgery), greatly reduced hearing in my left ear (my spine
curvature is to the left), born with only one kidney (right one),
extra toe (now removed ;) ), no uterus, no left ovary, and
progressive respiratory problems. I now have a single Harrington rod
along my spine.
I kept my last brace I ever wore. The reason being is because I know
that whenever I feel bad physically or emotionally, I can always look
at that brace and say to myself, "I can deal with whatever is ahead
in life because what was left behind was so much worse."
Currently, I wear oxygen 24/7 and wear a machine called a BiPaP to
help me breathe when I sleep because my lungs are so weak. I can no
longer work but I really, really love my life. I love talking to
others about my problems. People stop me all the time and ask me
about them. It doesn't bother me a bit, especially with my oxygen.
I've helped numerous people, mostly elderly people with their oxygen
needs.
Anyway, email me if you have questions or whatever. =o)"
Christine
http://jama.ama-assn.org/issues/v287n14/abs/joc11936.html
Is everyone finding their way alright?
If not post me and would like too know if anyone has benefited from this gruop?
As well it needs a moderator if your interested post me OK?
This takes very little time and pays nothing but knowing you might in some way be helping others if just to listen to them vent and dirrect them to to info. they want.
Karl & Penny Coan
mailto:coank5531@...
Hi everyone. I was searching for some info and just came across this.
Congenital Scoliosis
Congenital scoliosis is caused by abnormal vertebral formation. Vertebral absence, partial formation or lack of separation can cause asymmetrical growth and resultant deformity (Fig.9). Patients with congenital scoliosis require a renal ultrasound to rule out renal anomalies such as a single kidney which is the most common associated finding. Magnetic resonance imaging may be necessary to rule out suspected associated abnormalities of the spinal cord or spinal nerves if clinical neurologic examination findings are present. The treatment of congenital scoliosis is individualized and dependent upon the type of vertebral malformation. Early surgical intervention may be required to prevent deformity progression.
And just wondered... Has anyone with congenital scoliosis ever remember having the ultrasound thing done to check their kidneys? Because I can not ever remember having one done.
Thanks.
Sarah (Smurf)
Hi. My name is Crystal, I'm 13 and I just found out I have Scoliosis.
I have a 48 and 49 degree curve. Does anyone know if there is an
alterative to surgery. If you do, it would be appreciated.
Hello Crystal;
I'm Karl
Sorry to hear what your going through.
What you need to do is subcribe to the scoliosis mailing list to start with. Read the info on the site it will tell you what to do.
There is a group for teens and parent's as well one your mom and pop might want to subcribe to
Here's the URL:
http://www.ai.mit.edu/extra/scoliosis//scoliosis.html
Something you might what to look at is www.spineuniverse.com, this a very informative site there is a lot of data. video's of diffferent procedure's. illastration's etc it is realy nice.
Karl
Hi Alicia, I have had harrington rods from surgery for severe scoliosis since 1985, I'm 38 now and i would love to have them taken out, but that again is major surgery as you probably know and i don't think i could go through that again......Amy
alispinner <alispinner@...
Hi!
I have socoliosis.
I have Harrington Rods.
Do anybody here has Harrington Rods like me?
Thanks
Alicia
Thanks to my entire family for standing by me and helping me sort out this computer stuff.
And most of all the person upstairs. He has helped us through many hard times as he will anyone.
To unsubscribe from this group, send an email to:
life-with-scoliosis-unsubscribe@egroups.com
Hi everyone on the list. I found this is the morning newspaper we have at
home (I'm in the UK) and because I had an e-mail yesterday from the list
with "This is a game. Do you want to try it?" I thought I'd write what the
article says from the paper. Sarah (Smurf).
Invisible PC virus 'the worst yet'
A devestating new virus that is virtually impossible to detect is set to
cause computer caos worldwide.
Experts reckon that one in 77 emails may be a copy of the bug.
It uses random subject lines - and often there is no attachment as the virus
is in the email itself. It then wipes the hard drive of all data.
Hi-tech consultants have sent out global warnings about the "Klez" bug.
One virus firm registered more than 23,000 UK reports of Klez in 24 hours.
They say it is the most serious for years. Among the most common of the
random titles it uses in the email subject line is: "This is a game. Do you
want to try it?"
PS. My computer has not been wiped thank god.
Here is a link on Yoga and scoloisis something I thought you might
want to look into...
Karl
http://www.ebmyoga.com/scoliosis/index.htm
Hi!
I have socoliosis.
I have Harrington Rods.
Do anybody here has Harrington Rods like me?
Thanks
Alicia
Hello Sarah how's it today?
Scoliosis is something not very many people know of other that those
that have it or a family member.
If one knows what to look for it can be decteted early and then
something can be done about but first one has to be aware of it.
There is a link on the bookmarks page to spineuniverse.com, it has
everything have a look they even have on-line videos of different
procedures.The dogs got me by the tail got to go...
Have a good one!
Karl
http://www.dcdoctor.com/pages/rightpages_wellnesscenter/homeexercises/homeexerci\
se_back.html
Melanie;
How are you today?
Sorry can't help you much but know where you can go and pose the same
question's there. There are a lot of people mogrity of which are wemon
that have rods implanted and there you will also get an answer to you
question of pregnecy it seems that's a commen question.
The moderator there is Linda Racine and she seem's she knows what she
is talking about.
Got one for ya, what is the gadget you used I have not heard of it but
that dosen't mean anything.
Here is the link to the "scoliosis maling list" it has the imfo. on
how to subcribe, if you have trouble feel free to post...
Copy and paste this URL into you browser or type it in...
http://www.ai.mit.edu/extra/scoliosis//scoliosis.html
Have a good one!
Karl
Hello All,
I have just finished reading most of the messages in your site. I
live in Connecticut and was diagnosed with scoliosis at age 10 in
1985. It was already a pretty severe S curve. They first tried an
experimental muscle shock therapy, where I would wear electrodes on
my back at night. I developed a sensitivity to this and the curve
was getting worse. (I haven't heard of anone else using this, so it
must not have had good results) So the brace came next. (the big one
from under the neck all the way down). I wore it every day in 6th
grade, which is a very tough time to be different. All the self
consiousness for nothing- the curves progressed and when I was 12
surgury was the only option. It was 2 surgeries actually. One to
remove a rib for bone graft and then a week later, the harrington
rods were inserted. I was in the hospital for about 4 weeks total
and then another month of recovery at home. I am 27 now and still
have both scars and keep my hair long to cover them in the summer. I
have back pain from time to time, but nothing chronic. I have 2
questions for other members: 1. How long are the rods supposed to
last? 2. What complications are possible with a pregnancy? (back
pain, bed rest, etc)
Thanks,
Melanie
I don't think they have made more awareness of scoliosis in schools where I
am yet (don't count me on it) but my sister is at secondary school and so
far all the school's she has been to hasn't taught about the condition or
anything because she only knows about the condition by what I tell her so...
But there's time for more awareness yet. It just depends how long it
takes them for the teachers actually learn it to the school kids.
I spent alot of years not knowing properly what scoliosis was other than my
surgeon telling me once that my back wasn't like everyone elses and it
needed an op to make it better, and the school's didn't teach anything of it
so I couldn't get info from there. My surgeon told me very little of what
it was and it wasn't until I went college at 16 that I started looking the
internet for what I could find. I think I blocked it out for years though
until my last op in '95.
Sarah.
Ha Sarah over here their making scolosis more known in schools 'about time."
It has been the same with me they find one thing then another thanks to my age and health I have pretty much thrown causing to the wind and am concentrating on what little I can do for others.
You've had to deal with it at a very young age how much vanity played into it. I always had a thing with togging at my shirt like it was doing something plus nothing ever seem to fit. After my operation in 84 which was a joke to say the least. Be sure you get a top knoch preferably affilated with the SRS Scoloisis Reaserch Socity there is a link on the bookmarks page.
Well got to go feed...
Sure hope nothing else shows up with you, it seem like you have had it. there I go again repeating thy self:) OWELL!
Karl
Hi Karl.
I don't think the congenital kyphoscoliosis was diagnosed all at once. I definately know the scoliosis wasn't found until I was 5yrs old. And that was by the school nurse when all the kids had to have a school medical check. I don't think the kyphosis was showing or found or whatever until I started secondary school. It was around 12 or 13 years old when I started slouching forward so it could have been around then. :-)
Sarah
Hi Karl. Nope it isnt yet, I bodged it up once.
I have congenital kyphoscoliosis, which I only found out when I looked at part of my notes in January this year. My surgeon never told me what type I had other than just plain scoliosis so most the info Ive found out now, has been from other people with scoliosis or from the internet or what bits my surgeon DID tell me. I wasnt diagnosed with it though until I was 5 yrs old when the school nurse found it on a routine medical check in infant school.
I had an operation on the scoliosis when I was 6. I was told, (I think) that 2 vertebrae were removed and I had bone fusion because of my spine growing quicker than my body was and the abnormal vertebra as well making it curve quicker. I was unconscious for a week so I was told and only spent 2 and half weeks in hospital. I had to wear a plastic cast thing for 12 months (I dont know the name of the brace.)
I had another operation when I was 14 because I was starting to slouch over things and had lots of chest infections and colds when I went High school which was due to kyphosis starting making my spine bend towards the back. So had rib removed and bits of hip bone then they were used as the bone for the fusion for that. I have had no metalwork in, in any of the ops just bone. I was in hospital for just over 6 weeks because of my scar becoming infected and needing another op and lungs collapsing. Only had to wear a cast thing for 4-6 months.
A lot more different types of surgeries and better ones are out nowadays and being improved. What type of operations have you had for scoliosis?
I couldnt choose if I wanted the surgeries or not because I was under the age both times to consent so my parents made those decisions.
If anyone has any thing they think should be added to this group to
better it by all means feel free to post it could only help.
constructive comments welcome..
And it might not hurt to open up after all knowledge is power and it
has always pass on by word of mouth..
Ya'll have a nice pain free day.
Karl
Hi truelove i'd be happy to answer any questions you have, I have been through it all so feel free to ask me anything......Amy
truelove_c2 <truelove_c2@...
25 yr old black female just found out I have scoliosis last friday. I
have several dr visits and I start my physical therapy this friday..
I have tons of questions and concerns about all of this....please
email me at truelove_c2@... if you wanna chat/talk/vent about
scoliosis.
Thanks to my entire family for standing by me and helping me sort out this computer stuff.
And most of all the person upstairs. He has helped us through many hard times as he will anyone.
To unsubscribe from this group, send an email to:
life-with-scoliosis-unsubscribe@egroups.com
25 yr old black female just found out I have scoliosis last friday. I
have several dr visits and I start my physical therapy this friday..
I have tons of questions and concerns about all of this....please
email me at truelove_c2@... if you wanna chat/talk/vent about
scoliosis.
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Sleeping great... must be sleeping more soundly, because i fall
asleep easily & wake up 7 hrs later, just like there is an alarm
clock...
Hugs, Ida
--- In life-with-scoliosis@y..., The Coans Gene & Penny
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1\
1932074&dopt=Abstract
Hello Ida;
Glad to here it has helped.
I am taking 16 mg. a day 1 four times a day and once in a while when I feel a muscles spasm coming one I that another kind of the same thing I have to due with codeine. Be sure to drink lots of water to keep your system flushed out. sure you know this already.
Don't know if this help but it is saving my wife's live I feel milk thistle it is a pill that is natural and aids the liver stay clean...
She has "PBC" and that's been a saviour for her it helping her other wise she would need a transplant.
Well glad to hear it help keep in touch let me know how your doing got to go..
Have a goodone talk to you later...
Karl
Question how are you sleeping?
My doctor has decided that the Zanaflex has really helped me and so I
am on 12MG a day.... is that a lot??? What are you on.?? My back
feels so much better, sure glad you told us about it..
Hugs, Ida
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Something like this should be put in peoples work place (or in hospitals
while people recover)
This is a fantastic site full of animations,need to download the plug in
that's required, the instructions are on the site also.
Karl
http://www.spine-health.com/dir/dir01.html
Hello Sarah how are you today?
Yes I am the one with scoliosis. it was found out when I had surgery
to correct a buldging dis but it was found after surgery I also had
spina bifida nothing to worry about though, narrowing of the spinal
canal, degenerative dis, have to admit as much pain as it has caused I
have no scar to speek of .I a;so have a stent in my letf autery
opening up the blockage created by the bullet boy that has cause me
more troubles that I ever thought it would expecialy sence I have
gotten relief from the cronic pain from the scoliosis. All kinds of
other stuff pop up
My wife Penny has multipal health problems and our mother who has many
problems herself.
So tell us some of yourself if you like.
Feel free to ask any questions I realy not one much on words.
Karl & Penny Coan
Hi all... I take it you or family members suffer from scoliosis. I have
congenital scoliosis but wasn't diagnosed until I was 5 by the school nurse
who noticed it. What have all of you had to go through?
Sarah :-)
Here is the link the last post did not take...<:(
http://www.findarticles.com/cf_dls/PI/search.jhtml?magR=all+magazines&key=scolio\
sis+%2B+pain
CLICK ON LINK...
* Articles on scoliosis + pain
http://www.mayoclinic.com/findinformation/conditioncenters/subcenters.cfm?object\
id=D91513F2-AFBA-42F4-97D3CF795ED107C1
http://www.spineuniverse.com/displayarticle.php/article42.html
http://www.neckreference.com/s.html#spinal_cord
http://www.spineuniverse.com/displayarticle.php/article1343.html
http://www.nlm.nih.gov/medlineplus/druginfo/skeletalmusclerelaxantssystemi202523\
.html#GXX01
http://www.spine-health.com/topics/conserv/nut/nut01.html
http://www.medicineau.net.au/clinical/musculoskeletal/home.html#anchor1
http://www.niams.nih.gov/hi/topics/fibromyalgia/fibrofs.htm
http://whyfiles.org/150alt_med2/3.html
http://www.medicineau.net.au/clinical/paediatrics/Scoliosis_Detection.html
http://www.medical-acupuncture.co.uk/journal/1998nov/six.shtml
http://www.hopkinsmedicine.org/orthopedicsurgery/peds/spinabifida.html
Thanks for asking... i believe i am beginning to notice a
difference... plus, i seem more relaxed...
Hugggs, Ida
--- In life-with-scoliosis@y..., Karl & Penny Coan <coank5531@b...
*************************************************
Hello kim, if yo don't get the replies you wish from this site try the
same question to thr scoliosismaillist, someone there might be able to
help you'll need to subcribe it tells one how on the main page..
Have a good one!
Karl & Penny Coan
P.S. I did have the same problem many years ago I just can't remember
what I did and many on the other group are dealing with the same type
of problems so try there if you don't get want you're looking for.
Ida. how's the Zanaflex doing if anything yet,
besides that just wanted to say Hi and hope all is well.
Karl
The following life-with-scoliosis poll is now closed. Here are the
final results:
POLL QUESTION: As a person with scoliosis, do you
experience pain (back, shoulder, etc.)???
CHOICES AND RESULTS
- none, 0 votes, 0.00%
- very little (almost non-existent ), 0 votes, 0.00%
- moderate (hurts, but can be worse), 2 votes, 66.67%
- alot, 1 votes, 33.33%
For more information about this group, please visit
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I want to say thank you all for being so kind as to write when I needed some advise or was so worried.Thank you all who said little prayers for my wonderful son, Johnny. I hope and pray all of your children will be helped and free of pain. I hope you Mommas will always search and search for answers to your child's needs. I have made several friends here. I am going to move on and do more research. I will wait and see what the Spine specialist says about Johnny's Curveture. Then if it is more and he does in fact have Scoliosis I will get back to that research. I have to find out what is causing his severe pain. He needs help in this issue! Also I must find out more about his Hemangioma tumor on his spine.Once I find out everything in detail ,then I will start to research much more.
We are very happy, Dr. Wells got our April the first appointment moved to this Thursday! I hope to hear sometimes from some of you, I have very high regards for many of you in all of these groups.In one group especially,I would like to thank the moderator, Donna, Lances' Mom. You are a kind and very sweet person. Thanks,Donna for all your help! Most all of you have always made me feel welcome. Thanks again. My home email address is: jebuster@... Chrystal
Hi, First let me introduce myself. My name is Kim, I have a 6 year
old daughter who has a 37 degree curve. She has been in a Boston
brace since she was 3 1/2. She is good about the brace and her curve
is stable. My question is this the brace tears little holes in her
shirts. It has an edge where it was cut to fit her and the clothes
catch in that and tear. My question is this, how do I stop this from
happening. We tried using the long stocking that they gave her with
the brace but she doesn't remember to refold it when she goes to the
bathroom so it just hangs out and looks silly. She wears a tee shirt
under the brace to protect her skin so I really don't want to add
another layer unless it was really light. Any suggestions would be
appreciated.
Thank you
Kim Q.
Dear Group,
We are just beginning to settle down from an entire morning and up into the afternoon spent at the emergency room!
Johnny started last night to take a drug called Soma-Carisoprodol Tb-350 Mgs. He took one late last night, seemed to have no trouble, did act a bit tired, but then went to sleep, pain in is back was horrible. He got up this morning was still tired, took his shower,My husband fixed our breakfast. We ate. Jerry went to the den, Johnny and I stayed at the breakfast table.I gave Johnny another pill this morning about little before 10:30 and around almost 11:00,he pushed back from the table and grabbed his eyes. I asked what and he said he was feeling like his eyes were trying to cross. He started to rub them, and I looked at his face, he was pale,Eyes, were scarry looking, black part was almost as big as the green part! I ran in the den and told Jerry, and we watched Johnny get up from the chair, and he was walking from side to side, almost falling down. All of a sudden, he was running into walls and then he could not even talk, he tried and things were mushy sounding. His
eyes almost would go up some and eyelids were drooping. I was scared out of my mind, we didnt even say anything, I ran and tried to call Pediatrician, dr. Wells, but another was on duty, no answer at her home, and she{another pediatrician at the clinic} would not call me back after I paged her twice. So, we dressed, quickly dressed Johnny and called the emergency room, I said we are bringing our son out and I said we will not have to wait will we???!! She said no. Then ,when we got there, we both had to hold Johnny up, and then he was like a little drunk man almost ,He was trying to pull his arms back from us and said he could walk. But, finaly when we got in, which was just a few minutes, maybe a couple, the nurse started asking Johnny questions and us and he began to be able to talk little better and his eyes were becoming more normal. The Dr. saw him and kept us there for observation. he said never,ever to take Soma again. He watched Johnny and talked to him, he had him
walk for him and byhimself. He was still bad for a good while. But, around almost four, he was talking like normal and walking much better. His back is still in awful pain. The ER said we were doing the right thing by taking him to Memphis to a spine specialist. He said it was not normal for a child Johnny's age to have such horrible pain, and that we need to get it corrected soon. He also said with his tumor, seeing the specialist is the thing to do, but that Dr. Well,s and Dr. Barr are also excellent. He told us something, I guess I am not familiar with. I thought when you had Spina Bifida,that you knew from birth. But, he said when he was a teenager he was having pain, once while playing football he had an injury and they found he had spina bifida. Evidentally causing his pain. I am going to look into that also. He went and came back bringing Johnny a coke and talking to us further. Finally after a long wait, he let us go and said try ultaset again, but I told him it does
not work for Johnny. He sent the script anyway. Tomorrow I am going to call Dr. wells and speak with her about this and see what she wants to do. if she wants him to go on with the light physical therapy or not ,because it looks like no medicine so far is going to help his pain and I do NOT want him to go through this again! I was going crazy with fear and Jerry{My husband} ususally can handel things calmly, he was not so calm!Then right after four, Johnny just knocked out, he is sound asleep. This is the first time in almost two months he has been able to sleep during the day because his back is in so much pain. But, I do not want him to rest this way! Having a severe reaction to medicine!Oh, also he was shaking inside.But, he handeled all of this so well, I mean I would have been horrible! Histerical and everything!
A question: Can you in fact have Spina Bifida and it cause pain and you not know until years later you do have it?!
Johnny has taken so far: Darviset-no reaction-no help
ultraset-no reaction-no help
EdFlex-no reaction no help
CarisoprodolTab{generic of}Soma
Horrible reaction!!!!
Has anyone 's child had back pain and what drug or drugs work for you?
If your child had : Back pain{and you did NOT know yet as to what was causing it,and your child had a tumor on his/her spine in another location, as Johnny's is: pain lumbar,tumor low thorasic,would you think it safe to let him/her take as his Pediatrician calls it light therapy? I will have to discuss this further with her, all she said was for Johnny to take the Soma,on days of non school, twice a day, on school days, only at night-two Ibuprohpen before school to equal 400Mgs. and do this on Sat. Sunday, Monday, Tuesday. Then if by Tuesday night still no releief, a little light therapy at the hospital.
I hope you all are well, I would appreciate any information, any sites, any knowledge you may be able to send me. Chrystal
Ida, forgive me! I sent you the wrong letter! I am sotired from writing. Now, I have just burned my broccoli!!!!!!Please know I am going to write you the letter meant for you and this letter meant for someone else! Hugs,Chrystal!
I appreciate your thoughts. My son, is not able to be predicted of anything by Linda. Only his Drs. can do this. So, since an Orthopedic said he has scoliosis and it is only 5 degrees, what I am trying to say here is I am going to stay in these sites,groups, and I am going to write people, I am going to help people and I am going to listen. My son has a tumor and has been in constant back pain in tears for two weeks. He also has scoliosis. also, she states I am looking for pity. I am not! I will only speak to these moms with tears in my eyes or heart because we all are caring aboutour children and are talking of their problems! Now, we will be seeing a child Orthopedic, all of the scoliosis part is not finished yet. But, only a dr. can tell us if he has scoliosis or not. I am ready to not hear these type letters anymore.I am not meaning to be rude. But, I have written people all day today, speaking with people about this and I did nothing wrong. I like all of the people who
Hi Chrystal
Just want you to know that sometimes it is very difficult to
respond to everyone, all of the time... but, i feel that most of us
feel each others desperation & pain, whether physical or emotional,
and pray for all those affected by the horrid pain & problems of this
dreadful disease..
I can tell that you must be desperate for help, probably most of
us in the group feel the same desperation.. Scoliosis is a very
painful & depressing problem and the medication & pain make us feel
so horrible that we can't even think straight at times..let, alone,
sit at the computer and answer all email..
I haven't checked, but, i wonder if there is a group for
the "Mothers of Children with Scoliosis".... then you could use this
group for the information updates about scoliosis and then the mother
group for more of the discussion from one mom to the other...
I have been in this group for almost a year and everytime i have
needed help or an answer to a question about Scoliosis, Karl or
Penney have told me where to find answers to a specific problem, or
given me the website which would help... I am very thankful for
this wonderful group...
ida
publically. I have had a sweet response many times from so many
people. At my home mailing address and in the group addresses. But,
seems like when I am looking for hearing from everyone the most when
I am scared the most, the response floored me as I have had home
responses from individuals I like to speak with personally at home
mail about our children's pain, scoliosis, and worries and the love
of our children, but, I thought as a group everyone got support from
the entire group also in the group mailings, but the response to this
h