I am trying to find out everything I can about the recovery period.I
loved the answers about shaving legs in the shower and putting socks
on. How about sitting at home? Did most of you find a lounger(Lazy
Boy) chair the most comfortable way to sit? I would appreciate any
more helpful hints about the recovery period!!
Blessings to all,
Joan
I had an error on my Windows XP computer, it said the system was going to shut down to prevent problems to the computer. I restarted it again.
The message I got was:
DRIVER-IRQL-NOT-LESS-OR-EQUAL
What can I do to prevent this happening in future if possible, what caused it?
Many thanks
Liz
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Gang,
Dr. H did not give me Jake's RVAD. I saw it written on the x-ray at
the apex (right word?) of Jake's largest curve when we were there in
early July. I thought then that it was a 16. My husband saw said x-
ray this week @ Children's and we agreed that the number written there
is a 12! Isn't this supposed to be good?
When we were at the hospital picking up Jake's brace this week, I had a
list of questions for doc. When it was time to see him, we saw him in
passing in the hallway! He breezed right by us and VERY briefly look
at the brace. I was so disappointed that he didn't give us the chance
to sit down with him. One of the questions I had for him was - based
on what info. did you conclude that jake's scoli is progressive? I'm
dying of curiosity and cannot wait until our next appt Sept. 8. By the
way, I called him 2 weeks ago with a question and he never called
back! I feel like we're just a number.
Disgusted and still scared,
Jennifer
Dear Terry,
Vent all you want. That's what the list his here for. Everybody
speaks highly of Dr. LaGrone in Amarillo Texas. I know that's far away, but
he seems to be so popular with his patients. There's also Dr. Boachie at
the Hospital for Special Surgery in NYC who is very highly recommended.
Personally I think you should go by name and not by geography as you seem
to have some very serious problems. And you're right, 40 is too young to
quit dancing. I'm 56 and feel I still have a few good years left.
Best,
Nancy from Italy
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Mary...I hope you have an excellent appointment and come away
satisfied with Dr Hu. We will all be thinking aobut you. Cam
Best of luck tomorrow, Mary!
Sharon
Hey gang,
I found out from a reliable source that there is a clinic at the
University of Wisconsin in Stevens Point where they are beginning to
treat adult scoli patients employing the Schroth method and they're
having very good results. Maybe this is a new trend here in North
America ? One can only hope :)
Celia
Hi again
Thank You all for responding. I live in Virginia Beach, USA.
My ortho doc referred me to the neurosurgeon since my problems are
nerve related and he thought I required surgery. She is great but
very conservative. She is afraid if she refuses my lower spine. I
would again be fused from t-4 all the way down. Since I alreeady
have neck problems, she is worried that the 4 vertabre in the upper
thorasic area would take all the stress and eventually put me in a
wheelchair. That is why I am in this miserable restricting brace.I
just wanted to have the surgery and be done with it. I want to get
on with my life. I am sick of taking medicine, sick of pain, sick of
not being able to work, sick of having to lay there and watch my
family do the things that need to be done, sick of having to ask them
to do things for me that I can't do for my self, sick of worring my
poor husband and working him to death. I'm really very sick as you
can see. I am only 40 years old and I'm mentally not ready to give
up dancing. Not that I was ever very good or that I did it very
often. But, I resent having that option taken away from me. I feel
better now that I raged. Sorry you all had to witness that LOL :) No
one has mentioned revision surgery yet and I'm not sure if there is a
qualified revision surgeon in my area. Anyone from Va. here? Anyone
know of a surgeon in this area?
Again thanks for letting me vent.
Terry
I am so happy for Mary's Appt with Dr Hu!! She sure has waited a long time! Can't wait to hear what she has to say!
Karen
I found these websites that might help in tracking a bending brace
supplier. Actually I know of people in the U.S who have their braces
shipped from France, so it wouldn't be unusual to have a brace shipped
from the U.S. to Australia.
I can really sympathize, I've heard some real horror stories coming out
of Australia. From what I understand, doctors there would rather
perform surgery than brace - I wonder if it's due to the tropical
enviroment ? Let us know how things work out....
http://www.cbb.org/
http://www.scoliosis.org.au/pages/default.cfm?page_id=4797
Celia
Thanks Tanya ! Another good reason to move to the U.S. :) We don't have
a Target up here, but I'll take a look at Walmart and Sams. How pricey
are the body socks ? We might go with the SpineCor brace and
apparently there are special underwear (panties) that have to be
ordered (oh joy !) :)
Celia
Your friend will probably want the Child list, which is a list for
parents of very young children with scoliosis. They can subscribe by
sending an email message to SCOLIOSIS-CHILD-REQUEST@... with ONLY
the word SUBSCRIBE in the body of the message.
Reminder Reminder from the Calendar of Flatback_Revised
Marbodawg (Mary)'s appt. with Dr. Hu
Monday August 29, 2005
11:15 am - 11:15 am
This event does not repeat.
The next reminder for this event will be sent in 23 hours, 59 minutes.
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A heads up for anyone looking for them....
target has fruit of the loom seamless, tagless tanktops in the girls
underwear section (didn't check the boys). They are in packs of 3 for
less than $5. Nice and heavy, unribbed, slightly stretchy cotton.
Good cut - higher under the armpits and at the neckline and longer
overall than the ribbed ones we last bought in the boys' department at
JCPenney.
Tanya - who wishes the ones from the braceshop weren't so pricey!
(we've only got 2!)
A friend of mine just emailed me and told me the daughter of a friend of
hers has just been diagnosed with congenital Scoliosis.
The daughter is 2, and they are getting ready to do surgery.
Is the parents list still operating? If so, can somebody send me the directions
to subscribe?
Thanks
--
iWon <http://www.iwon.com/
Hi Joan...
The technology of the C-D rods is that they are bendable and can be
fixed to the spine at any number of places. They are usually bent so
that the patient's normal kyphosis and lordosis (the natural curves at
the top and bottom of the spine from the side view) are maintained.
Harrington rods, for the most part, did not bend. Because they did not
bend, patients tended to lose their natural curves. They were also
fixed to the spine only at the top and bottom of the rod(s).
Regards,
Linda
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Judy,
I meant patented not copyrights... my brain's not functioning.
Celia
Someone posted a message about how to prepare for surgery. It was
specifically for an 18 year old male.
If you could let us know what you have done so far in preparation for
surgery, it would help us help you. Are you living alone or will you have
someone to take care of you after surgery? Are you exercising at the moment.
Who will do your meals, take care of laundry, etc. Do you need information
about making life easier before surgery, while in hospital or at home after
surgery? Etc etc.
If there are others on the list who are facing surgery with questions on
this topic, feel free to jump in and ask. There are a lot of us who recently
and fairly recently had surgery who would be more than willing to give some
tips and ideas on how to help you have a smoother ride.
Thanks
Sanette
www.sanette.net
Jennifer,
What a cutie !!!! :) I'm not sure why you had problems uploading the
pics. Andrea, did you have any trouble ?
Celia
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Hi Terry,
Who referred you to the neurosurgeon? Was it your ortho doc? It is most
common, I think, for the problems you describe to be cared for by an
orthopedist who specializes in scoliosis. I would suggest that you get a
second opinion from a scoli specialist. A list of scoli specialists in your
area can be found at www.srs.org, or if you let us know what area of the
country you live in, we may be able to suggest some docs.
Good luck.
bonnie
Michele,
I know it has been said by others, but I just wanted to chime in
here and welcome you to the reconstituted new "old group"!.
There is not a requirement for folks to be in the surgery mode here,
now or ever...in fact we tried to write the intro in a way that made
sure that it included folks in all stages of their scoli journey. I
do hope you will take some time when you can and re-introduce
yourself by telling your "story". We will then keep it over in the
fles/database so we can go back to it to refresh our tired, pain
addled brains as we go forward. I have certainly found out new
things about folks I have been in contact with for over a year... so
it is never redundant to "tell" again.
I have done some work with a theraputic storyteller and just the act
of working with a story, real or imagined, accesses a part of
ourselves that can be very healing. I know that has been true for
many of us as we have shared ourselves here.
So just jump in when you get time.
Take care, Cam
Joyce,
Great to see you here and good news that you have finally got your
dates to work toward. It is interesting that they are planning to
place your stages intentionally 5-6 weeks apart. I do see why the
staging is becomming more common.
On the one hand I wanted to get it over in one day. On the other
hand, I thought, geez,I am not permitted to work at air traffic
control more than 10 hours a day. My husband can't fly a B737
outside certain duty time limitations, and they are all predicated
on the idea that we know humans beome tired and then make mistakes.
It is impossible to know where the outside limits are for any one
person...but I have to assume in some ways the operating room is
really a team where the weakest link is what has to be considered. I
am guessing that a surgeon is naturally motivated to do his/her best
as fast as possible....but perhaps keeping everyone focused on that
task is difficult beyond a certain period of time.
In the end I decided there was no benefit to asking a surgeon to
proceed in a one day fashion when that was not his first choice for
me. You must really have extra insight into the OR issues as well as
the mending of the human body that both inform your decision and
probably scare the dickens out of you!
We will have Dianne get your dates on the calender and look forward
to hearing more soon!
Best of luck! Cam
hi jennifer,
i only have a minute, but i wanted to say no problem about talking on the phone the other day. sorry i rambled so much! i inherited it from my mom. i'm glad you got to meet christine. we should all get together some time.
hopefully, your appt with neurology goes well. we had dr. proctor and we absolutely love him. he also did the detethering surgery for lucas. i even e-mailed him recently for a friend, and he e-mailed back immediately. it's nice when a doctor is so responsive.
as for posting the pictures, if you want to e-mail them as an attachment to me or the entire group, i can try and upload them for you.
"talk" more later,
deshea
SPONSORED LINKS
Scoliosis child Scoliosis Privy
Medical professional
Linda, Thank you for the answer about CD surgery. How does this
surgery differ from surgery that used Harrington rods? I am
scheduled to see my spine surgeon on April 3 and I have been making a
list of questions to ask. I love being able to read all the messages
from this group and feel that I will learn so much info that will
help me during my recovery! Thank you to everyone for sharing your
ups and downs of scoliosis surgery. Best wishes,
Joan
Hey Cam,
Glad your back, your trip sounded great!
We had some good discussions while you were gone, as youv'e commented on, Just tried to lay out the how hard that decision between Lami/ Revision. Hard one to give advice on, it's such a personal decision. I think between all of us they will have a good idea just what the decisions we made did or didn't do for us. I try to be careful, just don't want anyone to take my path and be very disappointed when they need to have revision, careful to say that it only gave me a year before I had to go on to revision. I just want to be fair. If that decompression had given me more time I would have been the first person to sing it's praises. Maybe there will be more members that come to the group that have gone the Lami way, and we can see how their outcomes turn out.
Have the Granddaughter for the weekend, she's five months already, hard to believe. Just love the smiles, she even laughs now, rolls over, and sits up. Just the best!
Susan
Colorado Springs
Hi everyone my name is Terry. I guess I'm new to the board because I
have never posted before. I have been reading the posts for a month
or so. Paul emailed me on the other site and gave me this address.
Thank you Paul. I am basically going through the same thing most of
you are going through. Though, I was fused from T4 all the way down
when I was a child of 14. Like some of you I lived my life as though
I was "cured". I had two children at a very young age (19 & 21) and
did everything I wanted. I started having serious problems about one
year ago. I picked up my sofa and hurt myself. I got a shot of
steroids and was fine. About a month later I was bent over a desk
for two hours working with a student (I'm a special ed. teacher) and
when I got up I heard something pop, I have been in pain ever since.
My ortho doc said I had a herniated disc and sciatica and flatback
syndrome (I had never heard of it before) and arthritis of the
spine. But, since I am fused I couldn't have a herniated disc.
Anyway to make a long story short, I was referred to a neurosurgeon
who after myelogram & ct scan said I have psudoathrosis of my first
(lower spine) surgery and every time I move I hit a nerve and it goes
down my leg and I move a lot. She put me out of work for 3 months.
She wants to avoid surgery because she is afraid refusing my lower
spine would put stress on the 4 discs that are not fused in my
thorasic spine. She said 5 or 10 years from now I could end up in a
wheelchair. I am on 1600 mil. of neurontin a day, 75 mil. of elavil
at night and demerol 50 mil. whenever I want to kill myself from
pain. She has put me in a bivalve brace. It goes from just under my
breasts to below my hip area then I have a leg piece attached. It
has a hinge (thank God) so I can bend my leg, but I'm not suppose to
It also has a lock that is suppose to be locked at all times. Has
anyone ever heard of it or worn one?????? I would appreciate knowing
if anyone has. This thing is really killing me. It is made of
plastic but on me it is very heavy and I can hardly stand up in it or
walk very far. It ends and therefore hits my tailbone region and
sacroilliac area causing incredible pain. I want to give it a chance
so I can avoid surgery, get back to my beloved students and calm my
poor husband's nerves. Please, Please, Please let me know if any of
you wear this brace or know anyone who has. Was it successful? Did
you have additional pain initially, etc, etc.
Sorry that this is so long, Thank you for listening. Terry
I don't consider post-operative problems as being off-topic. I know
that a lot of people find this interesting and helpful. For instance
I have special ways of drying myself after a shower because of my
limited mobility. I like to see how other people deal with every day
functions that most take for granted.
I was merely posting a reminder so that the conversations didn't go
completely off base.
And if you feel that I am wrong in something I am willing to listen.
I am really not that hard to get along with. If you have any
suggestions on how to make this group better let me know.
Moderating this group has it challenges at times but primarily the
group is for the subscribers and I will follow the groups wishes.
Paul Leger
As previously stated, I am no computer genius. I've tried 3 times to
upload 4 photos of Jake in his brace, but only the first one is in the
folder?! Any guesses as to what I'm doing wrong? Can't figure it out
and now it's very late. I'll try again later.
Jennifer
Welcome back Cam! I am honored to be the first of many to say how
much we missed you! I'm so glad your vacation went as well as it
sounds. You are remarkable, and a continuous inspiration--don't
forget it.
Just to catch you up, I'm 4 months post-op from the lami/decomp
surgery at this stage and back to work 4 days a week, swimming every
morning before I go in, experiencing minimal discomfort during the
day, and taking my necessary pain killer at night, which provides me
the opportunity to stretch every night when I get in.
Busy and difficult? Yes, but I believe a regular routine is helping
in my recovery.
I'll post a 6-month post op when the time comes, if anyone is
interested. Like you, I think the follow ups are as important as the
original postings.
Anyway, this was not meant to be about me....it was meant to be a
very warm welcome back to you!!!!! Sorry for the sidetracking--
Edie
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Hi,
I taped a razor to a dowel rod to enable me to shave my legs in the shower
without bending This works pretty well. Alyssa
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Hello friends...
I returned to the island last night and have just about dug my way
out of a huge pile of laundry and other delitrious of a two week
trip...glad thats done.
I think I have at least skimmed through most of the posts and see
that you all have been pretty busy here.
Congratulations Kam on your new family member....and how is the
training going????!!! You know I love animals, and am glad you have
a new buddy to focus on...he looks like a cutie pie.
Lorrie, I hear you on the frustrations with the insurance. After I
met with Boachie, I loved him and started down the road of
preauthorization with that office. I will say that they were helpful
to me, but even though they wrote a very thourough proposal BC/BS
wouldn't disclose how much they would pay. On the one hand Lindy and
Theresa were telling me I shouldn't be too worried, and I wasn't
because I knew that they must be saying that based on something..but
I didn't know what. I will say that over on the NSF forum if you
search you will find a discussion of parents of "first timers" who
did have the balance of their fees waived after insurance paid.
Nonetheless, I decided that was one factor against travelling to NYC
and one in favor of Rand/NEBH who are "in network". Sadly BC/BS is
so far offering almost nothing for Rands services the second
surgery...I think they are in dispute resolution right now. Anyway
you look at it the whole insurance things stinks...and I am sure
that is why Boachie decided against playing ball with them...but it
does make it hard on you. I wish I could offer more insight..
We had a great trip...still love Canada (even if you Canadians don't
like your medical system...!)I don't think I overdid
really...although there were some days where I probably could have
enlisted stronger backs to pick things up. I did jump into the lake
from the deck of the boat once...didn't seem like a problem. Worst
thing I did was jump onto the dock once and as the wind was blowing
the boat off the dock I unthinkingly used myself (with the line
around the cleat) to check the forward momentum of the boat. That
may have been a violation of the "no bending,lifting, twisting"
rule...but I don't think any harm was done...at least I hope not! I
had my 6 month post surgery anniversary while I was away and marked
it by thinking to myself how remarkable it was that I was
undertaking a two week vacation, complete with 10 hours of driving
on both ends...and not too concerned about it. Life goes on..Hurrah!
Talk to you soon, Cam
Peggy,
Good to see you posting! Come back often and post as much as you can.
We really ARE a friendly bunch! :-)
Kathy
If anyone has problems seeing the article, then let me know and I will send a copy to you, privately.
Llweyn
Hi Joan...
The names are Cotrel and Dubousset. Most spinal rods used today are
C-D, or are based on the technology of C-D. The system consists of rods
that can be bent to match the spine's contour and hooks or screws which
attach the rods to the spine.
Regards,
Linda
Thank you Llweyn! I suffer from Fibro as well and hope to get my hands on a copy of this book. My grandmother, mom, and sister all have it too. Its a beast!
Thanks again! Suzie
Llweyn <mad.monk@...
Came across this article on the ImmuneSupport.com site and thought
some might be interested, since I know I have Fibromyalgia and
Flatback and never too sure which is causing me the most pain.
http://www.immunesupport.com/library/bulletinarticle.cfm?ID=6659
Llweyn
I am seeking any information about the CD scoliosis
surgery.I do not know the correct spelling of the 2
people this surgery is named after,but I do know their
last names start with C and D.I'm sorry I can't
provide any more info. Oh yes,I do know this type of
surgery can be performed at The Leatherman Spine
Institute in Louisville,Kentucky. THANK YOU,
Joan
Came across this article on the ImmuneSupport.com site and thought
some might be interested, since I know I have Fibromyalgia and
Flatback and never too sure which is causing me the most pain.
http://www.immunesupport.com/library/bulletinarticle.cfm?ID=6659
Llweyn
[LINK]
He had made onecareless blunder thoughbecause he had skimped a bit on hispreparatory researchThe information he hadgathered had led him tochoose the nameFord Prefect as beingnicely inconspicuousEndeavor Societies churchaddition Christianpledge following special ways which theyforward ever heldbefore member For sakecharacter future cause keep pledgeunflinchingly pleasure good fellowship aNever discontinue endeavorsget new memberssuccess well supreme Follow continuallyspeak act pray Saviorpresent plans effectiveBuild standard noble name Lord day thinkliving Send comforting messages sorrowflowers sick funeralafter orphans visit widowsfatherless write lettersinvitation condolence establish missionsnew churches growingparts city hold kindnessfriends Baptist Temple Select leading dutyleast thousand personal follow waiting askedMake yourself master some line Christian effortSave Five these ago started Logan suburbPhiladelphia successful was their soon grewflourishing Ushers
Association strongesthelpful organizations furthering ushersAmerigo Bonasera sat in New YorkCriminal Court Number 3 and waited for justice
Tanya,
WOW !!!! That is amazing !!! Stories like this make me so happy. Of
course, as you can imagine I have lots of questions : ) Has your
daughter only worn her brace(s) at night ? Was her first brace a
Charleston bending brace ? It makes so much sense to me that if a
brace is worn only during sleep that it should be something like a
bending brace that over corrects the curve. Your daughter has made
it through her first major growth spurt - the first few years of her
life - with flying colours ! She's now 5 years old with a 20 degree
out of brace curve ? You have reason to celebrate :)
There are so many people here from the Boston area, I'm beginning to
think I should re-locate :)
Celia
Thanks, Kathy. It was nice meeting y'all as well.
Peggy Greene
I got this book, The Crooked Shall Be Made Straight, from my local
library. Although it starts with Rosalie Griesse's scoliosis surgery in
1942 and beyond (which seems very primitive now), reading it made me glad
that we have progressed in technology.
I can't imagine some of the procedures she had to endure, let alone being
away from your family for months in the hospital. And then it doesn't
work/last, and she has to endure many surgeries afterwards.
I wonder what ever happened to her.
Nancy in the East Bay
Hi -
I'm new to the group and wanted to share our story.
Here's a timeline:
8/00 - birth, xrays show a 'block vertebra' at T1-T2 - we were told
it was 'balanced' and not a problem. xrays of the neck were a mess
but no one bothered to tell us they were worthless. We thought we
were in the clear.
fall00 - diagnosed with 'torticollis', treated by PT through early
intervention, DD *hated* this therapy and did everything she could
to avoid it
winter00 - PT notices a slight rib hump. between that and DD's
hatred for the therapy she refuses to continue neck PT until we see
an orthopedist
2/01 - see the ortho - finally - xrays show that c-spine is a mess
and the T1-T2 anomaly is as we were previously told. doc orders an
MRI to rule out a tethered cord and a CT to get more information on
vertebral anomalies. No tethered cord. C-spine is indeed a mess.
1 hemivertebrae and fusions 'too complex to put into words'. But we
do nothing.
1/02 - see orth again. more xrays. take a 'wait and see'
approach. we were told all was fine but later learn that she had a
curve - just that it was below the 20deg cutoff
6/02 - I notice a curve in her thoracic region and urgently request
an ortho appt
8/02 - see the doctor. Her curve is at 40+ degrees (42 IRRC).
Doctor is beyond shocked. We schedule her for growing rod surgery
in 2/05 and schedule a followup for 11/02.
11/02 - see the doctor. Curve is down to 37 degrees. Everyone
stunned. By this time we had insisted on a second opinion on the
person we felt was the best in our area (happened to be a colleague
of our doctor but our doctor was wonderful about the fact that we
wanted 'another' opinion - warned us it was unlikely to differ from
his as they had already discussed her case as part of their spine
group) so we met with both doctors to discuss the new finding.
Surgery was cancelled and DD was casted for a boston-charleston
brace. It was a very happy thanksgiving
12/02 - DD went into the brace. She was to be in it for 12-15 hours
a day. The doctors felt that more than 15' put her at risk for
chest deformity and took away the chance to work all her trunk
muscles by running around being the wildly active toddler she was.
Early03 - in-brace xrays show a correction of over 50%
Later03 - out-of-brace xrays show a correction (26deg IRRC). We are
ecstatic. We'd been told that surgery was 'inevitable' and that we
were just 'buying time' with the brace. At most we should hope to
hold the curve. Should her curve begin to progress again we should
expect to schedule surgery when it hit 50-60deg. And here we were
with the curve getting better!
Winter03 - with her thoracic curve well-controlled we begin to
discuss her headtilt which the doctor does not feel is actually a
torticollis (we never did go back to active neck exercises - only
passive stretching) but a muscle tightness that is pulling at a
curve caused by the hemivertebra. We try a TOT collar to stretch
that muscle. DD *hates* it. *HATES* it! She's old enough to
figure out how to circumvent it. It's useless. Doctor starts
talking about botox.
Early04 - We drag our feet on botox to loosen those tight muscles.
With her other medical issues it raises so many red flags. Her
thoracic curve continues to be in the mid20s with 12-15 hours of
brace wear a day.
Summer04 - We meet another doctor to talk about the botox. It still
feels very wrong for us.
7/04 - We bite the bullet and tell the orthopedist that we just
can't go with botox. He suggests using a helmetted brace to address
both the thoracic curve and the c-spine at once. We can't go with
any existing options because we can't put any pressure on DD's lower
jaw for other medical reasons. The wonderful director of the brace
shop makes her a custom brace. Must have been a very unique
assignment as he's taken many pictures along the way :-)
8/04 - She goes into the brace. She's not too fond of it (she had
*loved* her first brace - we have a feeling it felt very good on
her) because it severely limits her mobility. But she likes the
idea of wearing it *only* to sleep (she'd have needed a second,
unhelmeted brace for waking brace time).
9/04 - in-brace xrays show that her thoracic spine is 'straight' in
the brace. she has her first adjustment to the helmet of the brace -
to bring her head closer to midline and to rotate the midline of
her face closer to the midline of her body.
Fall04 - the brace is working. People are commenting on how much
straighter her head looks. She had a stretch of time where she
fell/tripped a lot as she got used to her new lookout on the world.
Winter04-05 - we miss the orthotist repeatedly and no one else wants
to touch her brace so she goes without further straightening of the
helmet
2/05 - the brace continues to work. Out of brace her curve is 21
degrees.
spring/summer05 - DD grows 5cm
8/05 (yesterday!) - the orthotist takes a look at her in the brace
and laughs outloud. It's completely obvious to him that she has
simply grown out of the top and bottom of the brace. The shouders
of it don't sit on her shoulders so there's nothing pressing on her
neck. The hip pressure points are floating above her hips. I
wasn't exactly surprised. I knew how much she had grown. Out-of-
brace xrays show that, despite her growth, the brace is holding her
at 22 degrees. :-) And we *finally* get our first clear set of
neck xrays (her jaw had obscured her c-spine in every previous
one). That curve is at 29deg. She was casted for a new brace -
another helmeted brace. This one is again for night-time only.
For the first time, she's getting a bending brace - one that over-
corrects for the curves.
We are so happy with her progress. I want to share her story to
give some hope. I know that every case is different and that not
everyone will be as lucky as she has been but it meant so much to us
to meet a 7yo girl who was being treated by bracing on the day that
DD was casted for her first brace. I want to be able to be that
point of reference for anyone who might need it.
We aren't sure what the future holds. The day she was casted for
her first brace the more experienced of the 2 doctors in the room
told us that we'd be extremely lucky to get her to age 7 without
growing rods. We were given little hope of getting to puberty
without a fusion (or 2). Yesterday, the doctor talked of getting
through puberty in a brace. I know DD will not be happy to have
spent 10+ years of her life sleeping in a plastic shell. We will be
*so* happy if she can avoid internal instrumentation. I hope she
understands what the bracing has done for her someday. A small part
of me has hope that she may never need spinal surgery at all. It's
amazing what a difference 3 years can make.
Tanya
in Massachusetts
HI Kathleen~ I too used Dr Errico for my surgery in March, I LOVE HIM!! He is a gift! He treats you as if you were a member of his own family not a dollar sign! I will be forever thankful to Dr Keim for insisting that I see him! Who did your Harrington Rod surgery in 82? Was it done in NYC? I had mine done in June of 82 at Columbia Presby by Dr Keim. How are you feeling now?
Suzie
Kathleen Wigham <kulina@...
If you are considering him did you have a consult with Dr. thomas Errico at
NYU Medical Center? HE is as good as if not better than Boachie. He accepts
all insurances his staff doesn't hassle the patients. They are very busy and
work hard for you. He cares about the pain suffering and healing of a
person....... not patient payments. He is a wonderful generous human being
and a fantastic doctor. if anyone needs a consult his tele# is 212-263-7182.
He also has an office in Millburn, NJ where he sees patients a few times a
month. The hospital is well situated the staff is decent and if you need
extra stay for rehabilitation the Rusk Institute is connected physically to
the hospital. They were wonderful there getting me back to 'normal' after my
last surgery. I wouldn't leave until i felt i was just right and they kept
going back to my ins. co. and getting me covered to stay until I WAS READY
TO LEAVE not when my ins. company said kick her out which would have been 3
days after i entered rusk. I stayed three weeks got all kinds of physical
therapy, pool therapy occupational therapy and rehab from the surgery and
other problems i had left from the revision surgery. the ot, pt people
really worked hard with me to get me where i wanted to see myself
functioning. I awoke from hardware removal with nerve injury to my left leg
and i couldn't lift my foot up not even 1/4 inch off the floor. i was
dragging it. The ins. co. felt since i could walk by some means i could go
home. I told my docs i wasn't going until i was rehabilitated to
pre-surgery ability and that meant climbing stairs properly since i have
them in my home and able to have sex. Yes i was actually bold enough to put
it on my list. isnt much fun if you cant move your leg right?... But anyhow
the point is Dr. Errico fought off the ins. co. for me. That is what your
doc should do for you. You are the only one who knows your abilites and
your doctor should be your cheerleader to recovery. It wasn't Dr. Errico's
fault I had nerve injury and a vein tore while he tried to gently move it
off the screw head the revision surgeon put it under. He had found that all
the screws there were touching nerves thanks to the revision surgeons crap
work. . While the one screw remains and the plate having three screws
removed from touching other nerves did help settle down some of the pain in
thatt area eventually healing did take place. Moral of the story ..listen to
your heart & head... maybe you need another opinion?
wishing you many peaceful moments
TwistedSister in NJ
1982 Scoliosis Harrington fusion, 1998 Revision A/P Surgery for Flatback
Syndrome, 1998 Post Traumatic Stress Disorder, 1999 Degenrative SI Joints,
2000 Weight Loss Surgery, 2000 Spinal Hardware Removed, 2001 Cervical
bulging discs, 2002 Arachnoiditis, 2002 GERD, 2002 Adhesions, 1993 Mitral
Valve Prolapse, 1996 Fibromyalgia, 2001 Kidney Stones,
2003 Interstitial Cystitis, May 2003 Anterior spine hardware removal
** LIFE IS UNCERTAIN.............EAT DESSERT FIRST **
Harrington Rod scoliosis people and other post-op multiple spine surgery
people may interested in the following website dedicated to Flatback
Syndrome and revision/salvage spine surgery... "Salvaged Sisters of
Scoliosis" website on Delphi Forums at:
http://forums.delphiforums.com/adultscoliosis/messages
That this doctor will listen to me. I am going to see a general
practitioner about my back and headaches and emphasize that over the
counter meds don't work for me anymore. I am nervous. Will let you
know what happens.
Ann
Here's an interesting article ! I've often heard that bracing can
make bones weaker and therefore put a child at a disadvantage when
surgery is necessary i.e., the Titanium Rib Procedure. But here's a
study conducted on adolescent children which shows that bracing has
NO effect on bone density ! I wonder if the same would apply to
young children ?
J Pediatr Orthop. 2005 Jul-Aug;25(4):423-8. Related Articles, Links
Bone density accumulation is not affected by brace treatment of
idiopathic scoliosis in adolescent girls.
Snyder BD, Katz DA, Myers ER, Breitenbach MA, Emans JB.
Children's Hospital, Boston, Massachusetts, USA.
Bracing for adolescent scoliosis has been postulated to cause
permanent loss of bone mass and to predispose to adult osteoporosis.
To determine whether brace use affects the rate of bone accretion
with growth, the authors conducted a prospective study of 52 girls
with adolescent idiopathic scoliosis. Dual-energy x-ray
absorptiometry (DEXA) showed a significant increase in spinal bone
mineral density (BMD) over a 1-year period of brace wear. BMD
correlated with measures of growth and pubertal status, but not
average daily brace wear or severity of scoliosis. The annual rate of
bone density accumulation was similar to reported normal values. The
annual rate of change of volumetric bone density increased only
slightly during the study period, suggesting that most of the change
in BMD with time reflects growth in the dimensions of the spine.
Brace treatment does not appear to inhibit bone density accumulation
in girls with adolescent idiopathic scoliosis.
PMID: 15958888 [PubMed - in process]
If you are considering him did you have a consult with Dr. thomas Errico at
NYU Medical Center? HE is as good as if not better than Boachie. He accepts
all insurances his staff doesn't hassle the patients. They are very busy and
work hard for you. He cares about the pain suffering and healing of a
person....... not patient payments. He is a wonderful generous human being
and a fantastic doctor. if anyone needs a consult his tele# is 212-263-7182.
He also has an office in Millburn, NJ where he sees patients a few times a
month. The hospital is well situated the staff is decent and if you need
extra stay for rehabilitation the Rusk Institute is connected physically to
the hospital. They were wonderful there getting me back to 'normal' after my
last surgery. I wouldn't leave until i felt i was just right and they kept
going back to my ins. co. and getting me covered to stay until I WAS READY
TO LEAVE not when my ins. company said kick her out which would have been 3
days after i entered rusk. I stayed three weeks got all kinds of physical
therapy, pool therapy occupational therapy and rehab from the surgery and
other problems i had left from the revision surgery. the ot, pt people
really worked hard with me to get me where i wanted to see myself
functioning. I awoke from hardware removal with nerve injury to my left leg
and i couldn't lift my foot up not even 1/4 inch off the floor. i was
dragging it. The ins. co. felt since i could walk by some means i could go
home. I told my docs i wasn't going until i was rehabilitated to
pre-surgery ability and that meant climbing stairs properly since i have
them in my home and able to have sex. Yes i was actually bold enough to put
it on my list. isnt much fun if you cant move your leg right?... But anyhow
the point is Dr. Errico fought off the ins. co. for me. That is what your
doc should do for you. You are the only one who knows your abilites and
your doctor should be your cheerleader to recovery. It wasn't Dr. Errico's
fault I had nerve injury and a vein tore while he tried to gently move it
off the screw head the revision surgeon put it under. He had found that all
the screws there were touching nerves thanks to the revision surgeons crap
work. . While the one screw remains and the plate having three screws
removed from touching other nerves did help settle down some of the pain in
thatt area eventually healing did take place. Moral of the story ..listen to
your heart & head... maybe you need another opinion?
wishing you many peaceful moments
TwistedSister in NJ
1982 Scoliosis Harrington fusion, 1998 Revision A/P Surgery for Flatback
Syndrome, 1998 Post Traumatic Stress Disorder, 1999 Degenrative SI Joints,
2000 Weight Loss Surgery, 2000 Spinal Hardware Removed, 2001 Cervical
bulging discs, 2002 Arachnoiditis, 2002 GERD, 2002 Adhesions, 1993 Mitral
Valve Prolapse, 1996 Fibromyalgia, 2001 Kidney Stones,
2003 Interstitial Cystitis, May 2003 Anterior spine hardware removal
** LIFE IS UNCERTAIN.............EAT DESSERT FIRST **
Harrington Rod scoliosis people and other post-op multiple spine surgery
people may interested in the following website dedicated to Flatback
Syndrome and revision/salvage spine surgery... "Salvaged Sisters of
Scoliosis" website on Delphi Forums at:
http://forums.delphiforums.com/adultscoliosis/messages
Some of the posts are getting further and further off topic. I don't
mind a bit of levity, etc, without it getting out of hand but lets
try and get back on to the subject of scoliosis please.
Also remember when replying to a message remove at least partially
the previous messages, etc.
Thanks for your help in these matters.
Paul Leger
Jennifer,
I want pictures ! Lots and LOTS of pictures :) And good luck
tomorrow with the MRI.
Celia
If any one needs a very good revision scoliosis doc. Dr Tom Errico
Orthopaedic/neuro Surgeon in NYC 212-263-7182. NYU Med. Ctr.
Has office hours 4x a month in Millburn NJ.
wishing you many peaceful moments
TwistedSister in NJ
1982 Scoliosis Harrington fusion, 1998 Revision A/P Surgery for Flatback
Syndrome, 1998 Post Traumatic Stress Disorder, 1999 Degenrative SI Joints,
2000 Weight Loss Surgery, 2000 Spinal Hardware Removed, 2001 Cervical
bulging discs, 2002 Arachnoiditis, 2002 GERD, 2002 Adhesions, 1993 Mitral
Valve Prolapse, 1996 Fibromyalgia, 2001 Kidney Stones,
2003 Interstitial Cystitis, May 2003 Anterior spine hardware removal
** LIFE IS UNCERTAIN.............EAT DESSERT FIRST **
Harrington Rod scoliosis people and other post-op multiple spine surgery
people may interested in the following website dedicated to Flatback
Syndrome and revision/salvage spine surgery... "Salvaged Sisters of
Scoliosis" website on Delphi Forums at:
http://forums.delphiforums.com/adultscoliosis/messages
You might also try going to have them waxed. The person who did my legs was
surprised I didn't flinch or cry out--hey, the pain was nothing for those
of us who have had back problems!
Didn't hurt at all. Comparable to snapping a rubber band at you.
:-)
Nancy in the East Bay
They are beautiful! Yea! Thanks!
Bonnie
Reminder Reminder from the Calendar of Infantile_Juvenile_Scoliosis
Jake's 1st Brace
Wednesday August 3, 2005
9:00 am - 9:00 am
This event does not repeat.
ADVERTISEMENT
ZIP code where you park at night.
There are relatively few advantages to getting older (other than that
it means you didn't die when you were younger!) but I can tell you
that when you get older the hair production problem tends to go
away. I am 62 and from never traveling overnight without a razor,
now if I shave my legs twice a year it is plenty.
Many more ideologically oriented feminists do not shave at all, of
course, so that's another alternative. How about "Hairy is happy"?
Or for the more adventurous, "Hairy is hot!"
good luck today! send an e-mail and tell us how it went when
you get a chance.
deshea
---- Original message ----
Hi Beth....
I'm sorry for everything you and Crystal are having to endure. I know
it must feel insulting to be asked to have a psychiatric consult.
I wouldn't worry to much about the psych consultation. When a doctor
cannot find any reason for the pain, they have to rule out everything
else. At least the consultation will rule out a psychiatric origin for
the pain. I think it's great that the orthopaedist is trying to find
the origin of the pain before going ahead with surgery. It would be a
shame for Crystal to have surgery, only to find that the problem was not
corrected.
I know you really like the orthopaedist, but perhaps a second opinion
would be worthwhile. Will you tell us in what area of the country you
live? I'm sure someone can come up with a good recommendation.
Regards,
Linda
Reminder Reminder from the Calendar of Infantile_Juvenile_Scoliosis
Jake's MRI
Thursday August 4, 2005
7:00 am - 7:00 am
This event does not repeat.
The next reminder for this event will be sent in 23 hours, 4 minutes.
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[LINK]
Hello, this is Beth again. I just wanted to let everyone who answered me
that you where all a big help in a time when I thought no one could
understand what we are going through. Crystal is still having pain but it is
not as acute as it was (thank goodness). But now the orthopedic surgeon wants
her to get a psych consult. That kind of hurts. We are still on hold for a
surgery date. By the way, Crystal's upper-curve is 46 degrees, and her
lower-curve is 44 degrees. She has the S shaped curve. I know this is not as
extreme curve but she is having a lot of difficulties, including pain.
Usually her pain is a constant stabbing pain on the opposite sides of her
back where the curves are this seems to be agrivated by sitting at her desk
at school for long periods of time and certain exercises. But when the pain
gets severe she describes it as a muscle spasm pain along with radiating pain
down her right leg and numbness in her right arm and spots of her right leg.
I am a nurse and this sounds to me like a pinched nerve but the MRI of the
spine showed nothing.I love our orthopedic surgeon, who is a specialist in
scoliosis, but I can't believe that we can't figure this out. He wants to do
a MRI of the brain- I am not sure what that will accomplish. And then he
wants a psych consult. So, is she crazy? Am I crazy? It sure feels like we
are headed in that direction. I am just frustrated. I would like some more
information on this moving spinal series, Maybe this could help? Anyway, some
one asked if Crystal was on muscle relaxers, yes, Crystal takes Anaprox
(anti-inflamtory) everyday , Flexaril( muscle relaxer) when she feels spasms,
and Darvacette( pain killer) for when the pain is severe but sometimes none
of these help. Well, thanks to everyone for your input, I guess we will have
to just survive day to day. But it helps to know we aren't alone anymore.
Beth & Crystal
Mary I discovered that site back in April when I first started looking
for canes. They were a bit too expensive though for me at the time so I
opted for the Walgreens ones. I just couldn't remember the name of the
site.
Kathy
Emerging Techniques in Spinal Surgery
Disclosures
Michael Vitale, MD
Introduction
Surgical treatment of spinal conditions is changing at a rapid pace--
perhaps more than any other field of orthopaedics. Minimally invasive
techniques, new spinal implants, and genetically engineered biologic
agents have already altered the practice of spinal surgery and
promise to improve patient outcomes. Many studies presented at the
68th Annual Meeting of the American Academy of Orthopaedic Surgeons
offered exciting new findings in this field.
Thorascopic Instrumentation: Correction and Fusion of Thoracic
Scoliosis
The use of a thoracoscopic, anterior approach to spinal surgery has
recently become more widespread. This technique holds the promise of
less blood loss, less morbidity than thoracotomy, shorter hospital
stay, and faster recovery than standard open thoracic surgery
techniques. While thoracoscopic anterior spinal release is already a
common procedure, the design and choice of thoracoscopic
instrumentation remains a subject of controversy.
Picetti and Bueff reported[1] on a study of 50 patients with primary
thoracic scoliosis who underwent correction and fusion via
thorascopically assisted instrumentation, a procedure currently
performed only in select centers. Curve correction averaged 50% for
the first 40 patients and increased to an average correction of
greater than 68% for the last 10 patients. Hypokyphosis correction
averaged 21 degrees. Fourteen complications--but no deaths--were
reported. This evolving technique is showing promise. Correction
rates are improving (as was seen with this patient population), and
blood loss and pain were reduced in comparison with standard open
techniques. In addition, increasing surgical skill has decreased both
the operative time and the subsequent rehabilitation period.
Preclinical Study Opens Doors for Further Exploration of Endoscopic
Scoliosis Repair
Eric Wall, MD, presented cutting-edge research to determine whether
spinal staples, placed endoscopically could arrest growth on the
convex part of the vertebral curve.[2] Dr. Wall reported data from
his animal (porcine) study to determine if a simple endoscopic
implant (staples) is capable of modifying spine growth without
fusion. With the correction of adding barbs to the staple blades and
adding screw fixation to the procedure, failures related to staple
loosening were overcome. Dr. Wall concluded that "Endoscopic stapling
holds potential for slowly arresting or correcting infantile,
juvenile, and young adolescent scoliosis."
Emerging Technologies and Techniques
A symposium moderated by E.N. Hanley, MD, involved leaders in the
field discussing the impact of newer percutaneous (intradiscal
electrothermy, kyphoplasty) and minimally invasive (endoscopic,
laparoscopic) procedures, as well as the effects of newer implant
designs (cages, artificial discs), to determine whether the use of
these technologic advances has actually yielded improved outcomes.[3]
On the subject of new spinal implants, Thomas Zdeblick, MD,
explained, "We are all learning about the appropriate use of these
new implants. For example, in the use of transarticular screws for C1-
C2 fractures, the new implants have clearly increased fusion rates,
decreased the need for postoperative immobilization, and have led to
better patient outcomes." However, controversy persists about other
implants, including threaded interbody cages and thoracic pedicle
screws.
Speaking on the exciting possibilities and indications for use
presented by improvements in genetically engineered growth factors,
including various bone morphogenetic proteins (BMPs), Scott Boden,
MD, predicted that "Widespread clinical use of BMP is 1 to 3 years
away." Though research in this area has been ongoing for over 30
years, new dosing regimens learned from applications to primate
models and recent improvements in the carriers that ensure that BMPs
remain where they can be used, should pave the way for practical use,
according to investigators in the field. "Once we can make bone at
will," predicted Boden, "minimally invasive techniques will take
over."
References
Picetti GD, Bueff HU. Thorascopic instrumentation: correction and
fusion of thoracic scoliosis. Program and abstracts of the 68th
Annual Meeting of the American Academy of Orthopaedic Surgeons;
February 28-March 4, 2001; San Francisco, CA. Poster PE297.
http://www.aaos.org/wordhtml/anmt2001/poster/pe297.htm
Wall E, Bylski-Austrow D, Kolata RJ, Crawford AH, Ballard ET.
Endoscopic mechanical spinal hemiepiphysiodesis modifies spine
growth. Program and abstracts of the 68th Annual Meeting of the
American Academy of Orthopaedic Surgeons; February 28-March 4, 2001;
San Francisco, CA.Abstract 010.
http://www.aaos.org/wordhtml/anmt2001/sciprog/010.htm
Hanley EN, Moderator. Spine: have emerging technologies altered
outcomes? A symposium. Program and abstracts of the 68th Annual
Meeting of the American Academy of Orthopaedic Surgeons; February 28-
March 4, 2001; San Francisco, CA.
http://www.aaos.org/wordhtml/anmt2001/sympm.htm
Dear Emily
Even if you had surgery, you still need regular checkups, especially when
you are a teen. The one side of the hip being higher and more to the front
than the other, might be a sign that there are changes in your spine, or it
might just be that you haven't noticed it untill now. You will need to
check with a pediatric scoliosis specialist to make sure everything is
still fine with your back.
Sanette.
www.sanette.net
Jeanette
I bought a battery operated razor which you can use with soap and water for
about 30$Canadian before surgery. After surgery I would lie on my back on my
bed and shave my legs with a bucket of warm water, soap and a towel close
by. I would cross my one leg over the other and "blind shave" on the side I
can't see, with my left hand. (my left leg with my left hand - although I'm
right handed, 'cause I can't reach the outside of my left leg with my right
hand) I now use a regular razor and still blind shave the side I can't see,
still using my left hand. I just feel with my hand if everything is off. So
far, no accidents and it's been more than two years;-)
I found the cheapest hose to be the easiest ones to put on. Nothing that
promises to give you an instant liposuction- they're way too tight to get
on. I bought the cheapest on the rack at Target- about $1.50. If someone
would like to know the brand, I'll get it.
Sanette
www.sanette.net
Hey all - I've found a cool site for "fashionable" canes. I'm going to
order a few right away! Take a look and see.
http://www.thewalkingsticks.com/
Peace...
Mary
Kam -
You're new baby is much more important than we are! Of course he comes first. This new bonding time is important.....glad to hear that it is going so well! Enjoy his puppyhood while you can. (this makes me want another!)
~Mary~
Hi, I've never posted to this list before, so forgive me if I sound like a
teenager, cuz I am. :)
I had my surgery oh...four years ago and over the time I've noticed some
changes, moreso recently. First of all, I know my spine is 'slipping' as I
call it. I can feel it moving back into place almost, despite the steel rod
attempting to hold it straight. Not drastically, but it is worsening. Should
I go back to the doctor for that? It's not causing any pain.
Secondly, I used to think that every pair of pants I owned were uneven; the
right leg shorter than the left. Well, I've finally realized that it's not
the jeans, it's me. I looked in the mirror and I can see that my right hip is
higher than the left. This causes no pain either, but it's bothering me more
and more for apperance reasons. Not only is one hip higher, but the right is
also more in front of by body. Should I be worried? I'm sure they weren't
like this before the surgery, but what caused them to shift?
Any help or comments apprieciated,
Emily
Hi all. We went to a friend's house this evening and took along
Bonedust. He "discovered" the joy of mud puddles and was rewarded with
a bath when we arrived home. Turns out it is relatively easy to bathe
him since his hair is so short and he is so small. I will likely pay
for this tomorrow, but after the bath, he was SO snuggly and peaceful.
I think he really appreciated it! He has been so uncomfortable with
the teething thing and I just melted when he curled up and wanted to
snuggle while I dried him off.
Anywho, I hope I will get to join you all again soon. I was really
looking forward to it. However, I still have warm fuzzies knowing that
my "baby" loves mud puddles followed by a warm bath...
kam
Pantyhose or any hose--you gotta be kidding. That's
out of the question. After what all of us have been
through, who cares if our legs are bare? If anyone
gets offended by us going without hose, that's their
problem. I could care less. I still cannot shave my
legs--can others do that yet? I usually wear slacks
to cover my legs, but when warm weather arrives, maybe
my husband or daughter will shave them once in a
while. I want to swim as soon as the new pool opens,
so I'll let hubbie have that job; besides, it's more
enjoyable to let him do it. :)
=====
Jeanette
Okay--who else did I forget? I'm sorry I disappeared so suddenly. I
have dial up, and my daughter called me long distance right in the
middle of it! And as usual it was a minor crisis! LOL She doesn't have
a home phone so I have to talk whenever she calls.
Peggy, it was great to meet you tonight. Post when you can.
Kathy
Txbluebelle
This is really great to know! The Health Network is also on AT&T
Broadband Digital Cable. I searched at THN web site, the Life's
Respiratory Function at Maturity in Infantile-Onset, Non-Congenital,
Non-Syndromic Scoliosis
Caroline J. Goldberg, M.D.
Children's Research Centre
Our Lady's Hospital for Sick Children
Dublin, Ireland
Imelda Gillic
Children's Research Centre
Our Lady's Hospital for Sick Children
Dublin, Ireland
Olivia Connaughton
Children's Research Centre
Our Lady's Hospital for Sick Children
Dublin, Ireland
et al
Abstract from the SRS 2003 Annual Meeting
Background Data: The natural history of infantile onset scoliosis
varies from complete resolution to severe and relentless progression
throughout the growth period. Historical studies of untreated cases
have shown an increased morbidity and mortality from respiratory
compromise in those with severe deformity. Treatment aims to reverse
the deforming process and prevent these sequelae. Because the
condition is uncommon and results cannot be finally assessed until
the end of growth, outcome tends to become lost in the discussion of
newer methods.
Study Design: Prospective review of respiratory function in patients
with non-congenital, non-syndromic, scoliosis of infantile onset
(before age 4 years) who were at least 15 years old at the time of
study. Method: After ethical approval and informed consent, patients
with infantile onset scoliosis (N=23, 11 male and 12 female) were
recalled for full pulmonary function testing (spirometry, lung
volumes, gas diffusion) and surface topography. Results were
correlated with radiographic and surface topographic parameters and
with treatment history.
Results: Those whose scoliosis resolved or stabilised at an
acceptable stage, (N=6, 1 male, 5 female) with (N=3) or without (N=3)
serial casting, had normal cosmesis and pulmonary function at a mean
age of 21.1 years (mean FVC=98.83%, FEV1 = 98.7%) Those who were
managed by casting or bracing and had avoided surgery until after age
10 (N=6, 3 male, 3 female, mean age at surgery 12.9) had variable
cosmesis and good pulmonary function (mean FVC=68.33%, FEV1= 71.5% at
a mean age of 20.3 years). Those who received surgery before age 10
(N=11, 7 male, 4 female, mean age at surgery 4.1 years, and at
testing 20.5 years) had significant recurrence of deformity and
respiratory restriction (mean FVC=41%, range 12-67%, FEV1=41%, range
14 - 72%). In all cases, measures of respiratory function correlated
positively with age at surgery and negatively with the most recent
Cobb angle and surface topography parameters. DISCUSSION: The aim of
early surgery was the preservation of respiratory function, and the
control of deformity. It was recommended only for those who were
failing to respond to or inappropriate for serial casting, i.e. the
malignantly progressive. Those who had the worst prognosis in
infancy, now have the worst outcome. While there is variation, there
is also a clear pattern of continued progression of deformity after
early surgery and a concomitant decline in pulmonary function, such
as would be anticipated in an untreated case.
Conclusion: In this type of scoliosis, numbers will always be small
and natural history plays out over a long time, making meaningful
assessment difficult. It is not possible to form an opinion on the
efficacy of non-operative management, but the evidence suggests that
early corrective spinal surgery has not prevented deformity or
preserved respiratory function.
I was only afraid that you would develop a stilted gait, is all. I wish you well, along with painfree days.
Sincerely,
Carole
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Someone mentioned a program in Canada broadcasting a piece on a girl facing a
spinal fusion for scoliosis. "Life's Little Miracles" is also broadcast in the
United States, at least I am hoping it is the same program! It is broadcast on
The Health Network which I receive as a part of my digital service with Time
Warner Cable. Maybe others have access to this program through their cable
network or satellite dish. "Life's Little Miracles is listed as being on
tonight (Friday) at 9:00 pm EST, and Saturday at 12:00 am EST and 10:00 pm EST.
Unfortunately my television guide does not list the subject of each episode.
I'll try to remember to watch and video tape it.
Peggy Greene
JPG Unlimited
Antiques & Collectibles
eBay ID: jpg-unlimited
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!
I was 14 when I was diagnosed and my mom said that I was complaining
of pain before the diagnosis. It was found after months of tests
that my pain was being caused not only by twisted muscles but also a
pinched nerve. The doctor also said that because of my "minor"
curve, I was not a candidate for surgery of any kind and to take
tylenol. Unfortunately, 16 years later, I need something stronger
than Tylenol, Advil, Motrin, and Aleve. I know everyone experiences
different symptoms.
I would like to know, does anyone else, or rather, how many others,
experience pain 24/7 like I do? Do you ever have paralysis? I
sometimes suffer from Paralysis. Sometimes just one leg, other times
everything below the waist. Anyone else experience this?
Ann
It's strange how people react in different countries. When I told my
mum, she burst into tears, knowing the seriousness of it immediately
(despite never having heard of it before). She, or anyone else, has
never questioned the treatment of casting for Erin. Maybe because
it's done so routinely over here, I don't know, but there were no
battles and no questions.
My sister hasn't told my mum that her 12 yr old daughter is currently
going through the initial diagnosis of AIS - not looking forward to
that one.
Why have you guys come up against resistance to casting - I'm really
interested?
Hello. I am new to this group. I suffer from Scoliosis and have
been told that I have to live with the pain. I am unclear as to what
other options i have besides Advil. I am also suffering different
symptoms since I had my son two years ago. I am so open to any info.
I am glad to join this group!
Ann
That is funny that is how I got my mom to stop saying " today people over react" I bet this will go away.....You are too much of an over reactor.......after the xray she said ohhhhh.now it make more sense
Christine
Celia Vogel <celia_vogel@...
Jen,
"I know I'm doing and considering what is best for Jake, and I won't be
swayed by their opinions. Anyone else face this situation?"
My mother in law was very much against casting Deirdre in the
beginning. She was FOREVER on my case ! Finally, I decided the best
way to keep her quiet was to show her a picture of Deirdre's original x-
ray - IT WORKED ! :)
Celia
Nancy,
I remember that now! I knew someone else had problems with Broachie's
office. How are you doing? You have gone through so much. We would
love an update from you!
Kathy
Txbluebelle
Okay, I just have to share on the sock issue...I too got tired of asking for
help with my socks. I have a hard time putting my foot on my knee, I'm just
too stiff so instead I sit on my bed and bring my foot up just the opposite
way to the bed and then slide my sock on, which I have slid over one hand
...(if you can visualize this, big toe is on the bed, little toe pointing to
the ceiling, knees touching each other) It works, except with pantyhose, and
I just try to avoid those all together. Here's to the simple sock pleasures!
Best to all, Dana
Hi Nancy...
It's good to see you back. I'd love to hear what's happened since
your artificial disc surgery.
Regards,
Linda
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I'm with you Janet. I have been on No Mail since day one (I just log
in to read the new messages so I don't have to receive or even read
the spam) and it still annoys me!
Unfortunately, the responsibility is on the moderator to block or
delete spam. Since our moderator died and his wife never responded to
those of us who offered to take over (she left the site running in his
memory but does nothing as far as deleting junk or even checking for
messages to her now) there is nothing we can do to reduce the mess.
I try to keep watch in case somebody new comes on so we can say hello
or answer questions, but it is hard to keep a good group going with
all of the spam clogging up the board. See ya' around...through the
brambles!
Lorena
Thanks Andrea ! I think the U.K. is far ahead in treating progressive
scoliosis non-operatively.
Celia
Jen,
"I know I'm doing and considering what is best for Jake, and I won't be
swayed by their opinions. Anyone else face this situation?"
My mother in law was very much against casting Deirdre in the
beginning. She was FOREVER on my case ! Finally, I decided the best
way to keep her quiet was to show her a picture of Deirdre's original x-
ray - IT WORKED ! :)
Celia
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Carole,
Nope, no physical therapist or physician either who really cares about
my gait. I'm all on my own! At least for another 7 months. :-) In
actuality, it is hard to figure out which leg is the worst, so maybe it
doesn't matter? Besides, it hurts my hand too much to use it in my left
hand.
Kathy
Hi Maryann...
Every email posted to the list goes to everyone in the group.
Fortunately, I don't think there are not a lot of adults with severe
congenital scoliosis.
Regards,
Linda
Reminder Reminder from the Calendar of Flatback_Revised
Weekly Chat
Wednesday August 24, 2005
9:00 pm - 9:00 pm
This event repeats every week.
Event Location: Flatback_Revised Chatroom
Notes:
Weekly chat just for fun, discussion is open unless otherwise noted. Look in the files section for an easy guide for getting into the chat.
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