drum roll, please!

2008-06-30 22:24:53

Well, my sweetie and I have been quite busy the last two days because
we adopted a nine-week old. He is so precious as you will see (if you
click on the link below) and has been minimal trouble, all things
considered.
http://www.petfinder.com/pet.cgi?action=2&pet=4829490
Theadore, our 13-year-old likes him pretty well and Bonedust, our baby,
is CRAZY about his big brother.
I don't know how long this link will stay up, but hopefully for a few
more days...
Grinning so much my cheeks hurt,
kam

Question

2008-06-30 15:11:47

Hey Group,
Does anyone know where I can get one of those wrist band weights ?
They were popular a couple of years ago but I can't find them
anywhere ! :0( I got the brilliant idea of getting Deirdre one of
those things to wear on her right wrist (her curve is to the left) so
that she could strengthen the concave side of her curve. What do you
think ? I'm also a little peeved that the hospital hasn't mentioned
anything about physiotherapy, it's like...this is something I have to
research on my own ?!
Celia

Re: Lumbar Laminectomy - Susan K. & Edie

2008-06-30 04:16:06

Susan,
I have a question about your laminectomy. How long would you say
your recovery was? I know you opted for revision within a year, but
it is interesting to me that you noted the decompression was the
toughest.
Also, for both you and Edie, how would you describe your mobility or
lack thereof prior to the "simpler" procedure? I know you can't
speak for my local OS, but it still baffles me that he made this
option out to be such a short and sweet recovery time. It makes me
wonder if he said that because it is for "healthy" spines or if you
two were just that much worse off than me before you went through
with it.
Either way, I am so grateful to both of you for detailing your sagas
because I cannot imagine continuing my career and working two major
surgeries into the equation even in the next five or six years!
Perhaps if I had a more flexible schedule or weren't so driven to
advance at my job it would be different, but I don't know. That's
not meant to sound haughty at all, I just have a tough time thinking
through more than one recovery (which to me sounds like a setback).
I hope that reads the way it plays in my head...
Just thinking "out loud."
kam

Re: Rigo Article

2008-06-30 03:15:43

Erika,
I must be really dense, but where exactly on your website do you
detail the exercises for scoliosis according to Katharina Schroth ?
Celia

Re: Staging of surgery and blood donations

2008-06-29 11:53:27

Joyce,
I have been considering this carefully since I found out I'd be
revised. My surgeries will be one week apart, posterior first. It
was also interesting to me to note that Dr. Bridwell does not want
me to donate my own blood prior to surgery because he believes it is
causing patients to be too weak and interfering with recovery. I
suspect this might be a "hot topic" but here is my thought process
on the matter.
1. I have had blood transfusions with three surgeries, the second
one for which I donated blood, but the amount was insufficient. To
donate blood and then still need someone else's seems like a big
pain in the rump. When I donated for my second surgery (age 14), I
had to go to the blood institute four times to donate three
pediatric units. It was very difficult and stressful for them to get
any blood out of me!
2. It seems logical that if your body has been donating blood, it's
going to be a little depleted during recovery (I am pretty sure
someone has cited research to the contrary of this, but I guess the
research is not yet conclusive).
3. The screening done on blood now has improved tremendously and
I've made it through three transfusions without any "problems" so
there isn't a lot to scare me this time.
4. I HATE needles and the sensation of being stuck in my veins (even
typing this is giving me the eebie geebies). I am happy to avoid as
many as possible, which of course, is relative.
So, it would be interesting to hear others' thoughts on the matter,
but I am grateful to have a surgeon who is so amazingly thorough
and thinks and rethinks his decisions to ensure that his patients
will have the very best possible outcome.
kam

Re: [Flatback_Revised] A Quick Note for Ann M./Memory Foam Seat Cushion

2008-06-29 10:58:01

Dear Ann and Edie: Could you tell me the name of the memory foam seat cushion you have, and where did you purchase it? I have the wedge shaped one, which is OK, but not good for extended sitting. Thank you. Paulette

edie_scratch <edie_scratch@...

Hi Ann,
I just wanted to say a HUGE thank you for recommending this memory
foam seat cushion for my chair at work. It has made all the
difference in the world. I mean, I can't even believe how much of a
difference it has made... I am now able to get around the office
without a cane.
I love it so much that I'll definitely be buying one for home.
Good luck with your gyn. issues. Nothing sends flare ups to my lower
back worse than "monthly maintenance", so fibroids must be doubly
excrutiating.
Anyway, know that you have the best of my thoughts, and eternal
gratitude for your seating suggestion.
Edie

Re: Andrea

2008-06-29 10:55:24

Hi Celia, and everyone else. *waves back*
For those who don't know me, I'm mum to Erin, who is nearly 3. We were
diagnosed with infantile scoliosis 13 months ago and have been in a
cast ever since. This summer we're trying out a brace for the first
time - should get it in about a week. We'll go back into a cast for the
autumn/winter.
Good to be here (as it were).
Andrea

Re: anna's surgery

2008-06-28 23:44:32

Dear Mary Kay
Tylenol 3 and Darvocet are from the same category of medicine and are
similar in their effect. The Darvocet seems to be stronger than Tylenol 3.
If you still have some of those, I would suggest giving that, but not along
with the Tylenol 3- Give the Tylenol3 OR Darvocet (whichever you still
have), strictly as prescribed. For instance, if it was prescribed one every
8 hours, or three times a day. Give it like that. Please remember that you
shouldn't give both these medicines at the same time. It might be a good
idea to clear this advice with your doctor or pharmacist. It is too soon to
cut back on her painmedication.
About moving around..What I did after surgery, was, I took painmeds and a
muscle relaxant even before I got up in the morning. I would put it beside
my bed and after I woke up, drank it and waited at least 30-45 minutes
before I tried to get up. I started "waking up" by just moving my feet up
and down (sliding along the bed, not lifting). In the first weeks post op I
also got up in the middle of the night and walked around the house- I found
this helped for overall stiffness. The first couple of weeks post op
consisted of mainly resting, with periods of activity in between. Try to
give Anna her painmeds before any activity and try to get her to go for a
(short) walk, at least twice a day. (By short, I mean something like out
your driveway and back- depending how long the driveway is) Build from there
by adding a few more steps as she feels comfortable with. It's more
important to get her moving, than to worry about unecessary painmeds. If she
was prescribed a muscle relaxant, give that too.
I also used (and still use) slippery pajamas, to make turning in bed easier.
Also use something slippery to slide on when sitting down/getting up out of
a chair. I also couldn't sleep on my one side for weeks, if not months,
after surgery. That's okay, as long as she alternates between her back and
the other side. She also gets up, so it's not like with a bedridden patient
that you want her to turn on all sides. As Linda has mentioned before,
shoulder pain after this surgery is very common. It will go away, don't
worry about that. I had trouble using my arms after surgery for quite a
while, because of this...Added to that, immobility with resulting stiffness
can actually make you feel worse. I did not lie on my stomach for two years
post op and still find it difficult. As a matter of fact, as far as I know,
it's not advisable, because it can cause twisting of the spine, and because
her fusion extends from the thoracic spine to L3, I don't think she will be
allowed to try to twist for some time to come. I still use a body pillow to
put under my knee (eg when I am on my left side, I bring the right leg up
and put my body pillow under that knee and under my right arm- as if holding
onto it for dear life) Use lots of pillows to make her comfortable. I also
put a pillow against my back for warmth. She can get the same feeling as
lying on her stomach by holding unto pillows. If she still needs help with
turning at night, she does not need to be turned more often than every two
hours. If you can, have her call you or ring a bell or something when she
needs you to help her. You might find that she sleeps a good stretch of four
hours or so without any help. I'm just concerned if you keep on waking up
every hour, you're going to be drained one of these days and she needs you
for emotional support as well.
Sounds like you're a great mom. Good luck.
Sanette

Re: [Flatback_Revised] Lumbar Laminectomy

2008-06-28 17:29:18

Dear Nutty,

I had decompression / laminectomy surgery before my revision. My surgeon Dr. Anant Kumar and Dr. Michael O'Brien of the Denver area thought that this would be the best approach, to save my ability to bend and to wait on the fusion to the sacrum till it was absolutely necessary. I was fairly young( 41) and they wanted to keep my L5 open so I could bend. The decompression surgery did take away the awful leg pain, and for that I was so thankful, but I still had hip and low back pain associated with the Flatback. After a year of Med's ( Vioxx and Celebrex and Nuerontin) and spinal injections, I was fed up with the pain and we went onto fusion to the sacrum. Am I glad I had the decompression, Yes. I do think that it ultimately made my revision go smoother, that there was less work for the doc's to do during the revision since some had been handled during the decompression. During my decompression my Harrington rod was removed, so when it came time for the Revision there was less
work to do. I also think that my revision would have had to be staged if that earlier work had not been done. I bleed badly during big proceedures, and if I hadn't had that earlier surgery I'm sure my Revision would have been hours longer, and the blood loss greater so it would have had to be staged. I found the decompression surgery to be the most painful of my three surgeries with Dr. Kumar, just felt like I had been hit by a bus. I'm sure if the decompression had given me more than a year before I had to go on with the fusion to the sacrum I'd be more pleased, it's a crap shoot at best, and I thought it was worth the gamble. In hind sight I'm glad I did it the way I did, but did end up with an " Extra" surgery. You can go back and read my story in past posts, there is a complete timeline of my surgeries. Hope this is a help to you, ask and I'll answer any questions!

Susan
Colorado Springs

New File Uploaded, Vert Mooney: The Role of Resistance Exercises in Scoliosis

2008-06-28 16:09:20

Interesting article... Why not use weight training as an adjunct to
bracing vs bracing alone ?
Celia

Re: Lumbar Laminectomy

2008-06-28 05:13:58

Hi there Nutty, I don't believe we've "met".
My name is Edie, and if you look back at our personal stories files,
you'll read a little about my lumbar laminectomy and disc decompression.
I had this procedure done on April 28th of this year. I was in very
good physical shape until the nerve pain in my left leg got so bad
that I had to do something. I am also trying everything I can to avoid
revision surgery until it's absolutely necessary, and this is the
course of action I've chosen.
So far, I feel that the surgery was a great success in removing my
nerve pain, but did not do anything to address my flatback.
But I've been doing tons and tons of swimming and water workouts for
rehab, and am now back at work 4 days per week, and even standing up
straight again for a good part of the day with minimal pain. During
the day, I've felt my strength returning, and at night I take 1 pain
killer and stretch for about 1/2 hour. This, so far, is working well
for me.
I am cautiously optimistic at this point that this procedure has
bought me some time. How much? I'm not sure. Susan Kirkaldie also had
this surgery before her revision, and can give you her invaluable
perspective.
There's a lot more to say, but fire ahead with any questions, and I'll
answer them the best I can. I think you should ask Susan as well, as
she is much further down the road than I am.
So far, (3.5 months post op) this surgical approach is working great
for me.
All the best,
Edie

Andrea

2008-06-28 03:46:06

We have a newbie to the site, Andrea. She's my good friend from
Scoliosis Support in the U.K. Welcome Andrea ! *waves*
Celia

Re: Little about me

2008-06-27 19:52:17

Hi Karey,
I sent you a PM on NSF, I wasn't sure if you got it because I couldn't
find it on my "sent" list.
Dr. Hedden is also our doctor. I have nothing but praise and
admiration for him. He saved my daughter's life and he will always be
remembered and will hold a special place in our family.
Congenital scoliosis is very different from idiopathic and sometimes
it's necessary to surgically intervene early on i.e., before there is
sufficient growth. If I remember correctly, your daughter's curve is
in the 30's range ? I can probably guess that Dr. Hedden is allowing
you to make the final decision. Bracing is normally not prescribed for
congenital scoliosis, although I have read of cases where children have
benefited. It really depends whether the curve is long and flexible,
that's usually when bracing can help. Have you discussed bracing with
Dr. Hedden ?
There is also the TRP, but I don't know if Sick Kids has been approved
to do the procedure. Something to think about.....
Maybe some of the other members have info that can help.
Celia

Little about me

2008-06-27 08:58:44

Hey everyone i am new here. I am 27, married with 3 kids. It happens
to be my middle child, Kasanndra who has scoliosis caused from a
hemivertebrae. This is in her lower spine. Now we have gone ahead
and put her on the active surgery list for the fall but as months go
by i am doubting that i am doing the right thing. I would love to
chat with others in the same horrifying experience. We go to The
Hospital for Sick Children in Toronto and my daughter sees Dr. Hedden
who so far has been absolutly wonderful. Look Forward to hearing your
input. Karey

Re: [Scoliosis-Medical] anna's surgery

2008-06-27 08:35:51

Mary Kay...
It sounds like your daughter is not getting enough pain medication.
Having her take only Tylenol at this point is cruel. Call the doctor
today and get her on something stronger. It's more important, at this
point, that she starts moving, than to get her off narcotics.
For anyone who is about to undergo surgery (or who has a child about to
do so), please try to get a sense of how your surgeon feels about pain
medication. If they tell you that you'll be off narcotics quickly, go
elsewhere.
Good luck Mary Kay.
Regards,
Linda

oh...another thing

2008-06-26 18:01:46

Have you received the cd on the TriaC brace ?

Re: [Scoliosis-Medical] Michelle

2008-06-26 16:02:52

Michelle,
I have a lumbar curve only as well. I was also put in a Boston brace as a
teenager. I had surgery at the age of 20 when my curve reached approx. 60
degrees. I had an anterior fusion as opposed to the more standard posterior
surgery. The surgery lasted 14 hours. I was in the hospital for about 10
days, but they had me up, out of bed, and starting to walk on the 4th day
after surgery. I recovered at home, in bed, for about 2 weeks after that.
I was back at college 1 month after surgery (against doctors orders...but I
was doing well enough to be there with extremely helpful friends around me
and lots of pain meds, and there was no way I was going to miss my senior
year of college). I had to be extremely careful about lifting, twisting,
bending, or getting bumped into for 6 months. After 6 months, I was
vaccuming and doing laundry, and was even able to go skiing (again, against
doctors orders, but I was determined to prove them wrong). I would say that
for me, at 1 year, I considered the recovery complete. The post op pain
(immediately after surgery) was pretty bad, but I barely remember it with
all the meds they put you on. They also inserted an epidural into my back
immediately before the surgery, which I had in me for many days after the
surgery. The epidural made all the difference.
Every situation and every person's recovery is different, but that was my
experience. Hope it helps.
Ashley

A Quick Note for Ann M.

2008-06-26 15:54:04

Hi Ann,
I just wanted to say a HUGE thank you for recommending this memory
foam seat cushion for my chair at work. It has made all the
difference in the world. I mean, I can't even believe how much of a
difference it has made... I am now able to get around the office
without a cane.
I love it so much that I'll definitely be buying one for home.
Good luck with your gyn. issues. Nothing sends flare ups to my lower
back worse than "monthly maintenance", so fibroids must be doubly
excrutiating.
Anyway, know that you have the best of my thoughts, and eternal
gratitude for your seating suggestion.
Edie

Surgery in April

2008-06-26 06:24:38

Apparently one of the spinal surgeons has to have surgery, so they cannot
schedule the surgery to correct the loose screw until April 19. I have my
appointment with Dr. Slabaugh on March 15. I am also going to call each
week to see if he has a cancellation. Perhaps he will come up with
something else.
Meanwhile, I'm still in a lot of pain. I talked to Dr. Hu's nurse, Dr. Koo
is on vacation or something, but they are going to try another medication
besides Lortab at night (it makes me itch).
I'm really afraid I'm going to lose my job. I still haven't heard from my
workplace about that.
This just seems to go on and on. Imagine, I thought I'd be back at work
after New Year's!
Nancy in the East Bay

Re: Staging of surgery

2008-06-25 17:50:02

Hi Joyce...
I also never heard of the stages being separated by so much time (at
least intentionally). However, I think it's become relatively common
for posterior surgeries to be done first.
And, interstingly, I think the literature shows that there is less
blood loss and fewer complications with one stage vs. two. Perhaps
your surgeon's experience differs. With all that said, I had a both
stages of my scoliosis surgery done in one day. If I had to do it
over again, I would have them staged.
Regards,
Linda

Re: New here

2008-06-25 12:05:50

Hi Patricia,
Welcome to the group ! I'm sorry to hear that your daughter has
scoliosis. If I'm not mistaken, levoscoliosis means curvature to the
left. I just read your post and I haven't had a chance to google
search FG syndrome on the internet - It's been such a day here ! What
does FG Syndrome entail ?
Regarding your daughter's diagnosis, a 12 degree curvature is very mild
and I would doubt that most doctors would take action at this point.
probably what they'll do is monitor it for the time being. But if you
think about it, most curves whether they are progressive or resolving
start out small. What I would do, is get another x-ray in a few months
time and compare it to the first one to see if the curve is progressing
and what the RVAD number is. The RVAD is a very important number
because it can show a doctor whether the curve is of the progressive or
resolving variety. In the mean time, while you're waiting for things
to happen, it's not a bad idea to get your daughter into physiotherapy
to strenghten the weak (concave) side of her back.
Celia

lumbar scoliosis and activities of daily living

2008-06-25 11:44:24

Sanette's comments about the difficulty of getting into and out of a car
made me realize that there is an advantage to being short. I'm fused T2 to
the sacrum and have no difficulty getting in and out of my station wagon
provided I follow the procedure I was taught at rehab. I suspect that
entering and exiting a low to the ground sports car such as a Miata might be
difficult.
I have no difficulty doing laundry provided I use my grabber to remove
clothes from the washer and dryer. I have to remember to bend my knees to
reach items in the top loading washer tub rather than bend my spine - a
taller person would of course have to bend her knees more.
I just recently got the all clear to resume vacuuming at my 6 month
check-up. I've never been much at domestic chores, but absence had made my
heart grow fonder for my vacuum. I'm glad to have renewed my acquaintance
with it and to have sucked up the seemingly ever present drifts of dog hair.
I find changing the sheets without bending my spine, twisting my spine, or
lifting the mattress to be a bit tricky. Scrubbing the bottom of the shower
door is probably not in my future ever again, but can't say as I will miss
that activity - it's worth paying someone to do that occasionally.
For the most part, these are really fairly easy and minor adjustments. The
restriction on lifting is a bit tough - much tougher I would think if you
have kids that are at an age that they want to be picked up. I used to ask
the baggers at the grocery to keep my bags light, but their definition of
light and my definition of light often did not agree. So I just pull
particularly heavy items out of the bag and put those items in the car loose
before lifting the bags into the car. Good luck with your decision. Alyssa

Helpers)

2008-06-25 06:42:28

LOL that website is buenisimo!

Nutty

Re: [Infantile_Juvenile_Scoliosis] Rigo Article

2008-06-25 03:19:45

Dear Celia,

All the information regarding my treatment and the exercises is available on my website: http://www.erikamaude.com

Regards,

Erika

Surgeon

2008-06-24 18:09:24

Anyone out there ever had surgery by a Dr. Michael Ford? Toronto,
Canada.

Re: Reconnecting to chat

2008-06-24 12:49:47

Scott,
Thanks for that hint. Like a dummy, I would say "yes" I wanted to
reconnect to chat. And then of course it would tell me that I couldn't!
I'll have to remember to try that next time.
Kathy

anna's surgery

2008-06-24 00:30:26

my 14 year old daughter, anna, had surgery 3 weeks ago. we went to
philadelphia shriner's hospital to have an anterior throscopic procedure.
we found out 2 hours before admitting her that it was no longer possible.
she ended up having a posterior surgery t2 to l3. the doctor postponed her
surgery to two months later than we planned and her curves continued to
progress very quickly to a point where the anterior procedure could not be
done.
anna had a difficult time in the hospital with vomiting and pain. she gained
1 1/2 inches and is now 5'8" and weighs 102 lbs. her curve looks like it is
down to 10 or 20 degrees. she had 5 or 7 ribs resected.
i think she is recovering very slowly. i try to encourge and push her to
move more but she does not want to get out of bed. we can only get her to
sit in a chair for about 15 minutes a day and she walks n the house about 5
minutes. at night she needs help changing position in bed so i help turn her
about every hour. she does not want to lie on her side or chest. she has
back and shoulder pain. i am giving her tylenol 3 or regular tylenol during
the day. she was taking darvocet. i am not sure if i should be giving her
more pain medication or if i should be pushing her harder to do things for
herself. any suggestions?
mary kay

New here

2008-06-23 18:10:41

Hi all
Just a brief note about my family. I am Patricia my husband is Jason.
We have two daaughters named Alexandria who is three and Sheridan who
is two. Alexandria was just found to have levoscoliosis with a 12
degree curve. They both have something called FG Syndrome. Please help
with any info you may have on the levosoliosis Please
Thank you,
Jason&Patricia

Re: muscle atrophy

2008-06-23 16:06:59

Dear Diane
With muscle atrophy as it is related to scoliosis surgery, the rule is
simple: if you don't use it you lose it (muscle strength). Because body
casts and braces inhibits movement and therefore usage of the muscles, it
could cause the abdominal and back muscles to atrophy to a certain extent.
If lack of use is the reason for loosing muscle strength, it can usually be
built up by using the muscle again in normal daily living, and/or with
exercise. The more muscle tone and strength is lost, the longer it will take
to rebuild. The more rigorous the exercise, the quicker it will build up.
There are, however, other conditions which could cause muscle atrophy, in
which case it might not be possible to regain muscle strength (such as
atrophy caused by nerve damage).
Sanette

Re: [Flatback_Revised] Staging of surgery

2008-06-23 15:50:17

Dear Joyce,

I was wondering why they are staging you a month apart instead of the usual week? I also have never heard of the posterior part being done first, I'm curious as to why, and will you be up and mobile between the two. I had my revisions in one day surgeries, and glad I did since I had kids and didn't want to be laid up for any extra time. I tend to be interested in the hows and whys different doc's do this surgery and how they go about it. Thanks for answering back, and again, tons of good luck!

Susan

Colorado Springs

Ugh!!!

2008-06-23 04:22:17

Hi Guys,
Major rant here. We went to the hospital yesterday because Deirdre
was complaining of pain near the arm pit area. It was stinking hot
outside, I think it went up to 34 degrees celsius and with the
humidity it must have been 50 !!! So we rush to the hospital to wait
three hours to see the ortho tech. I have to admit that the ortho
tech is the sweetest person on the face of the earth, I can't say
enough about the staff at the hospital. Anyhoo.... she cuts out a
window underneath the armpit area and then decides to reinforce it
with more fibreglass. So now Deirdre's cast is so much bulkier than
it used to be and the cotton sundress she wore to the hospital
doesn't fit any more. I have a picture of her with the sundress that
I took a few weeks back and she looks absolutely precious. NOW she
won't be able to wear it AND half the summer clothes she has because
they don't fit. So I guess I'll have to do some major shopping....
Celia

Staging of surgery

2008-06-22 20:22:58

Susan,
Dr Fackler explained that they have found that patients do better with
healing if they do it in 2 shorter surgeries instead of long (12 hr.)
one. You're less likely to need blood, your body has some time to build
itself back up before being assualted again, etc. Also you're not
dealing with a tired surgeon. Having spent a lot of time in the OR over
the last 20 years assisting, etc in some long surgeries I can tell you
that is a big plus, for everyone involved not just the surgeon but the
patient too! Less likely to miss something or screw up.
It's great to see some familiar friends!
Have a great day.
Joyce Taylor, RN Atlanta

Re: Lumbar Scoliosis HELP!!!!!

2008-06-22 18:02:18

Dear Michelle
My lumbar spine was fused in Oct of 1998 (T10-L5). At the time of the
surgery it measured 58 degrees and I was 32 y. old.
I had two surgeries, 4 days apart . Anterior release (through 2 inch
insicion from the front) took 4 hours (actual O.R. time, not including
recovery room), and the Posterior part of the surgery took 7 hours (again,
actual O.R. time, from my O.R. report)
Hospital stay was 10 days from the first surgery. I am two+ years post op
and not fully recovered.
First anterior procedure was nothing compared to posterior, which was the
worst pain of my life. Didn't think I was going to make it.....was on
continuous morphine pump, but still- the relentless burning was worse than
giving birth without any painkillers (which I did). I had to take narcotics
for at least 2 years post op.
I wasn't allowed to drive for 3 months post op. Limitations also include
total loss of flexibility. Getting in/out of a car still proves difficult
with some cars. As I'm 5'8" and can't bend forward/sideways anymore, if it
isn't a big car, my head hits the top when I try to get in. I prefer my van.
I am allowed to carry/pick up no more than 20lbs. As bending is still
difficult, my family help with laundry and general cleaning. I buy
groceries, but still need help to take things off of high or low shelves,
put in cart, take out of cart at cashier, into car, and carry into the
house. I have a "grabber", to pick things off from the floor, but find that
I use my toes more often than the grabber, or just leave things where they
are. I do go down on my knees sometimes, but that's still difficult to do.
I vacuum sometimes, but don't like it, because it hurts my back. This might
sound very bleak but the fact is that if your lumbar spine is fused, it
changes your whole lifestyle. Adaptations have to be made, which I have
done. For the most part I've learnt to live with it and sometimes do crazy
things like the polka. But that's not everyday.....
You can read more about "my personal opinion" about surgery at
http://www.modimoministries.com/ModimoMedical-Scoliosis.html
or type in www.sanette.net and follow the links. You can also look at my
x-rays there.
If you have any more questions, please feel free to write.
Sanette

List of Doctors who Cast

2008-06-22 10:09:10

Here is a (growing) list of Doctors who have stated that they
routinely cast young children. I intend to add to the list as time
goes by. The reason I'm compiling this list is because some parents
are frantically searching for a doctor who will cast their child.
John E. Lonstein, MD
Twin Cities Spine Center
(612) 775-6200
913 E 26th St #600
Minneapolis MN 55404-4515
http://tcspine.com
Adolescent, Adult Scoliosis, Juvenile/Infantile
Charles E. Johnston II, MD
Texas Scottish Rite Hospital
214-559-7559
2222 Welborn St
Dallas TX 75219-3993
http://www.tsrhc.org
Adolescent, Juvenile/Infantile
James O. Sanders, MD
Shriners Hospitals for Children
814-875-8700
1645 W. 8th Street
Erie PA 16505
Adolescent, Juvenile/Infantile
John P. Dormans, MD
Children's Hospital of Philadelphia
215-590-1527
Division of Orthopaedic Surgery
3401 Civic Center Blvd
Philadelphia PA 19104-4399
http://www.webstage.chop.edu/consumer/pat_care_fam_serv/staff_profile_
page
Adolescent, Juvenile/Infantile, Pediatric, Tumors
Dr. Michelle Prince
Children's Hospital, Austin Texas
http://www.childrenshospital.com/FindaDoctor/DoctorDetail.asp?
browseBy=detail&browseByItem=21431346
Children's Hospital Birmingham, Alabama
Dr. Scott Doyle
http://ortho.chsys.org
Children's Medical Center Cincinnati Ohio
http://www.cincinnatichildrens.org/...-div/orthopedic
Hospital for Joint Diseases Orthopedic Institute New York
Dr. Ronald Moskovich
http://www.hjd.org/
Hospital for Sick Kids Toronto, Canada
Dr. Hedden
http://www.sickkids.ca/orthopaedicsurgery/
Shriners in SLC Utah
Dr. D'Astous
http://www.shrinershq.org/shc/intermountain/

Lumbar Laminectomy

2008-06-22 04:51:16

Hola

Has anyone here had a lumbar laminectomy and what was your outcome, good or bad?

I am considering many options right now and this was a suggestion to me.

Thanks, Nutty

Casts and Muscle Atrophy

2008-06-21 23:54:13

In a message dated 2/21/01 10:05:03 AM Central Standard Time,
ElianaRefaya@... writes:
<< Is there some "point of no return," I wonder, beyond
which one is better off just living with the pain and disability?
I am at that same point. My doctor wants to operate again (actually a series
of two) which would be numbers 6 & 7. I am against this one, since the one I
had in December was not a positive experience. I am struggling with the
thoughts that this may be something that I have to learn to live with. Not
that I haven't been living with it since I was seven, but this is new. I have
not had the limitations that I now have. I went to the mall over the weekend,
of course being a weekend it was crowed, but I had to rest by the time I got
to the door and I wanted to forget about the shopping. I am beginning to
think that this is going to be the rest of my life.
Gina

Re: [Flatback_Revised] Joke time

2008-06-21 14:49:45

:^D

Joke time

2008-06-21 09:35:56

I figured it was time for another joke. My apologies to all blondes,
but I couldn't resist this one.
Three blondes were applying for the last available position
on the Virginia Highway Patrol. The detective conducting
the interview looked at the three of them and said, "So ya'll
want to be a cop, eh?"
The blondes all nodded.
The detective got up, opened a file drawer and pulled out
a file folder.
Sitting back down, he opened it up and pulled out a picture,
and said,
"To be a detective, you have to be able to detect. You must
be able to notice things such as distinguishing features
and oddities such as scars, etc."
So saying, he stuck the photo in the face of the first blonde,
and withdrew it after about 2 seconds. "Now," he said,
"Did you notice any distinguishing features about the man?"
The blonde immediately said, "Yes, I did. He has only one eye!"
The detective grabbed the photo, shook his head and said,
"Of course he has only one eye in this picture! It's a profile
of his face!"
"You're dismissed!" The first blonde hung her head and walked
out of the office.
The detective then turned to the second blonde, stuck the photo
in her face for 2 seconds, pulled it back and said,
"What about you? Notice anything unusual or outstanding
about this man?"
"Yes! He only has one ear!"
The detective put his head in his hand and exclaimed,
"Didn't you hear what I just told the other lady?
This is a profile of the man's face! Of course you can
only see one ear! You're excused, too!"
The second blonde sheepishly walked out of the office.
The detective turned his attention to the third and last blonde
and said, "This is probably a waste of time, but....
He flashed the photo in her face for a couple of seconds
and withdrew it, saying
"All right. Did you notice anything distinguishing or unusual
about this man?"
The blonde said, "I did. This man wears contact lenses."
The detective frowned, took another look at the picture
and began looking at some of the papers in the folder.
He looked up at the blonde with a puzzled expression
and said, "You're absolutely right! His bio says he wears
contacts! How in the world could you tell that by looking
at this picture?"
The blonde rolled her eyes and said,
"DUH ! ! ! With only one eye and one ear, he certainly
can't wear glasses!"

Re: Articles of Interest and such....

2008-06-21 09:14:48

That would be great Deshea ! I just noticed your post after copying
the article to "messages". It would be great to have a permanent
record of it.
Celia

Re: [Scoliosis-Medical] Lumbar Scoliosis HELP!!!!!

2008-06-20 20:07:55

Hi Michelle...
I had a thorocolumbar curve corrected at age 42. To answer some of your
questions:
The surgery was 11-1/2 hours long. I was in the hospital 12 days
post-op. Recovery is hard to define. For about 5-6 weeks post-op, I
did nothing more than lay in bed, go for short walks, and go back and
forth to the bathroom. I also was allowed into the swimming pool to
flat around and do the dog paddle. The pain for the first 5 weeks, in
my case, was pretty bad. If I had had better pain management, I think
it would have been a little more tolerable. After that, I was able to
be up for a few hours at a time, but needed to lay down for several
hours afterward. I didn't start cooking until I was about 8 weeks
post-op, and then only easy stuff. And, I needed help with getting
things from upper and lower cabinets. I didn't start doing laundry
until six months post-op. It wasn't until I was a full year post-op
that I felt like I was back to normal. At that time, I still had some
post-op pain. (The lower back pain I had before surgery was eliminated
by the surgery.)
It's going to be difficult for you with five children (unless they're
old enough to do everything themselves). The important thing to know is
that you need to keep yourself from bending, reaching and twisting for
at least 5-6 months post-op, to ensure that your fusion has started. If
you think about all the chores that you do in a day, you'll realize just
how much bending, reaching and twisting you do.
We're all very different, so there's no way to know what your recovery
will be like. I know several people who had very little post-op pain.
In general, I would say that people with longer fusions have more pain
than people with shorter fusions. You could have an easier recovery
than I did, if only your lumbar vertebrae are to be fused.
Best of luck with your decision. If possible, I'd like to encourage you
to get a second opinion, just to be sure that you've chosen the right
doctor.
Regards,
Linda

Article: 25 Year Follow Up of *RESOLVING* Infantile Idiopathic Scoliosis

2008-06-20 18:17:54

Hey Group,
I thought this article might be of interest to parents whose children
have progressive scoliosis but HOPEFULLY will resolve with casting.
Hey, once the curve resolves one has to consider pain issues,
right ?! ( NEVER EVER SAY NEVER :) )
A 25-YEAR FOLLOW-UP
Of 42 patients with resolving infantile idiopathic scoliosis, 34 were
followed up for more than 25 years. Twenty had been primarily treated
in a plaster bed and 14 by physiotherapy. The mean angle of the curve
at presentation was 17 deg and at follow-up it was 5 deg. No patient
had significant progression of the scoliosis during the growth spurt.
When adults few had back pain or an increased disability score and
there was no interference with work or social activities. The rib-
vertebra angle difference proved to be an essential radiological sign
when distinguishing resolving from progressive infantile idiopathic
scoliosis. There was no advantage of plaster over physiotherapy with
regard to either the time to resolution or the functional outcome.
Treatment of resolving infantile idiopathic scoliosis in a plaster
bed is therefore now outdated.
J Bone Joint Surg [Br] 2002;84-B: 1030-5.
Received 13 November 2001; Accepted after revision 3 April 2002
Infantile idiopathic scoliosis is a lateral curvature of the spine
with apical rotation and wedging, which may present before the age of
three years.1-3 In the 1930s, Harrenstein4 recognised that the course
of infantile scoliosis can be very variable. Some curves progress and
cause cardiopulmonary pathology 3-17 while others resolve or
disappear spontaneously within the first years of life.4,7,12,18-21
In 1951, James1 described this separate resolving type of infantile
scoliosis. Two theories have been proposed to explain its cause,
intrauterine moulding and postnatal external pressure on the spine.
The observation that plagiocephaly, the convex side of a curve, and
hip dysplasia all occur on the same side is evidence for the pressure-
moulding theory.6,17,19 The postnatal pressure theory is supported by
those cases in which scoliosis is not evident at birth.3,20,22,23
Some authors1,13,24 have divided resolving scoliosis into two types,
resolving and postural. The cause of resolving infantile idiopathic
scoliosis, however, remains unknown.
The review by Nachmenson25 and other long-term follow-up studies
during the last 30 years have proposed different treatments for
patients with idiopathic scoliosis.11,15,24,26-29 In order to achieve
sufficient numbers of patients many of these studies had poorly-
defines patient selection.16 Early-onset idiopathic scoliosis and
resolving idiopathic scoliosis have a different natural history from
adolescent-onset scoliosis, often making the groups of patients which
were investigated inhomogeneous.15,16,24,26,27,29 Varying forms of
treatment within these groups and the paucity of information do not
allow conclusions to be drawn. As yet, only short- and medium-term or
minor long-term observations concerning resolving infantile scoliosis
are available.2,5-7,9,10,12,17,19,21,30,31 In contrast to progressive
infantile, juvenile and adolescent idiopathic scoliosis, little is
known about its natural history at and beyond skeletal maturity.
While there are guidelines concerning the treatment of progressive
idiopathic scoliosis which have been verified in many clinical
studies, there is not a standardised concept for the management of
resolving idiopathic scoliosis. Treatment may be by a plaster shell
in and overcorrected position or by physiotherapy, and some authors
claim that no specific treatment is required.3,5,12,19-21,32,33 The
differing forms of treatment which are recommended probably reflect
the fact that it is difficult to differentitate between resolving and
progressive curves before the age of five years.2,21
Our aim was to describe the long-term outcome in patients with
resolving infantile idiopathic scoliosis, and particulary to consider
whether there is recurrence or progression of the deformity in
adolescence. We have also compared the correction which may be
achieved by either a plaster shell in the overcorrected position or
by physiotherapy.
Patients and Methods
Our study was based on a retrospective review of 73 patients with
infantile idiopathic scoliosis, who attended special clinics between
1964 and 1974 in two university hospitals. All the children had
developed a curvature before the age of three years. The mean age at
diagnosis was 15 months (2 to 36) Since differentiation of resolving
from progressive curves in the first years of life is difficult, we
classified the curves retrospectively according to the radiological
course during the first six years of life. The focus of the study was
the long-term observation and management of resolving infantile
idiopathic scoliosis, which was diagnosed in 42 of these patients.
Thirty-four (15 women and 19 men) were followed up for at least 25
years. Three had been lost to follow-up and for five the radiographs
were incomplete. These were therefore excluded from the study. The
mean follow-up was 28 years (25 to 34). Table I gives the details of
the patients.
Radiological Evaluation
At the last follow-up, all 34 patients underwent radiological
evaluation (Fig. 1) with a standing anteroposterior (AP) view taken
on a 30 X 90 cm film. Observations and measurements were based on all
fulllength erect AP films of the spine made at the first visit and at
the final follow-up and any intervening radiographs. These were
interpreted and measurements made by one author (OD). The study
considered primary curves only. Lateral radiographs were often not
available and thus kyphosis, lordosis, and sacral inclination were
not studied. The Cobb34 angle was measured, and we compared the
course of short and long primary curves, setting the limit of
differentiation at nine spinal segments. We also determined the rib-
vertebra angle as described by Mehta,10 the rib-vertebra angle
difference (RVAD) at the apex of the primary curve and the
relationship between the rib head and the vertebral body (phase-I or
phase-II rib). In order to assess the predictive value of the RVAD in
the diagnosis of a resolving or progressive curve we retrospectively
measured it on the first available radiograph. Two of 31 patients
with progressive curves had incomplete radiographs and were excluded.
Methods of treatment. After the initial diagnosis of resolving
infantile scoliosis which was made at a mean age of seven months, 20
patients were treated in a plaster bed with the child supine and the
curve overcorrected in lateral flexion as was first described by
Harrenstein.4 It was retained day and night for at least 12 weeks. As
the children grew older or with improvement of the curve, it was used
only at night and physiotherapy was started.
Fourteen patients with infantile scoliosis were treated by
physiotherapy alone. Parents were advised to place the children in a
prone sleeping position. At that time the higher incidence of sudden
infant death syndrome in the prone position was not known.35
Back pain and work activity. The subjective clinical status was
assessed at final follow-up using two scores. We used a scheme
described by Weinstein et al15 which differentiates between the
frequency and incidence of spinal symptoms and whether
hospitalisation was required. The assessment of subjective disability
was based on the Oswestry Disability Index (ODI) version 1.0.(36)
Occupational activity was divided into three categories, heavy
(construction workers, farmers), medium (including household tasks)
and light work (office job).
Statistical Analysis
The independent t-test was used to analyse the differences in the
radiological data between the groups.
Results
Resolving scoliosis was diagnosed slightly more often in males (56%)
and was predominantly left-convex (56%) on the initial radiographs.
All 34 patients had single curves. The residual curve at final follow-
up was 10 deg in three (9%), with an overall mean of 5 deg (0 to 13).
None had significant progression of the scoliosis during the
adolescent growth spurt (Fig. 2). Treatment by surgery or with a
brace was not required. Although the curve was not clinically
apparent radiography had been performed in 16 patients (47%) during
adolescent growth.
Rib-vertebra angle difference (RVAD)
Figure 3 shows the RVAD. In cases in which it was
sensitivity was found to be 90% and specificity 85% in the diagnosis
of a progressive scoliosis. In all cases of resolving scoliosis the
RVAD decreased with skeletal growth. In none of these patients were
the ribs found to be in phase II. However, in 17 of the 29 patients
(59%) with a progressive curve there was an overlap of the head of
the apical rib on the convex side on the upper corner of the
corresponding vertebral body on the initial radiograph. In a further
seven progressive cases (24%) the rib-vertebra relationship converted
from phase I to phase II during the following six months.
Pattern of curves. Patients with resolving infantile idiopathic
scoliosis had either a C-type thoracic or a thoracolumbar single
curve at the initial presentation. In six infants flexion radiographs
taken within the first year after birth were available; five showed a
fixed lateral curve. In distinguishing between short and long C-
shaped curves we set the limit at nine spinal segments, measured from
the apical to the distal vertebral body of the major curve. Only four
patients had short major curves.
Degree of Initial Curve
The mean angle of the curve at presentation for those with resolving
scoliosis was 17 deg (5 to 36); 26 patients (77%) had a curve of 30
deg. At the final follow-up the mean decrease was 12 deg (-29 to 3).
In five of eight patients, in whom the initial curve was
there was a virtually complete (20 deg it was 4 deg (0 to 8).
Methods of treatment. The median treatment time for a resolving
deformity was three years (nine months to 15 years). Both groups
showed most improvement during the first four years of life (Fig. 2).
There was no significant difference in the time to resolution between
the two treatment groups. At the final follow-up the lateral curve
had decreased by a mean of 11 deg (-26 to +4; SD 8.0) in group I and
by a mean of 13 deg (-29 to 0; SD 9.9) in group II. There was no
significant difference between the groups with regard to either the
decrease in the curve during the period of observation or the
persistent curve at the time of followup.
There was conversion from single C-curves to double S curves in three
of the 20 children, who had been treated in a plaster bed (15%). In
group I we also found a change in the direction of the primary curve
with a slight permanent overcorrection in four of the patients (20%).
No similar complications were found in group II.
Back Pain And Work Activity
At the final follow-up 13 patients (38%) claimed not to have suffered
from back pain. One had been hospitalised and six (18%) had visited a
physician with back pain at some time (Table II). Figure 4 shows the
ODI for resolving curves at the final follow-up and compares it with
normative data of healthy control subjects and patients with
adolescent idiopathic scoliosis.37 There are no significant
differences between patients treated in a plaster bed (group I) and
those treated by physiotherapy (p = 0.46).
At the final follow-up only two patients (6%) were unemployed. None
had retired prematurely or was unable to work because of spinal
symptoms. Twelve patients (35%) assessed their occupation as light
work, 14 (41%) as medium strenuous and eight (24%) as heavy work.
Only two patients (6%) claimed that they were restricted in their
occupational or recreational activities because of spinal symptoms.
The occupations were not significantly different between the
treatment groups.
Discussion
The reported incidence of resolving infantile idiopathic scoliosis
varies between 17%(38) and 92%(19) of all patients with infantile
idiopathic scoliosis.5,7,10,17 The true incidence is clearly unknown
since many minor and resolving curves are not diagnosed;(21) 58% of
our patients had resolving curves.
There are few studies which deal with early-onset resolving scoliosis
from the time of diagnosis to skeletal maturity. Most authors observe
patients only until or just after the adolescent growth
phase.5,9,21,30,38 At the time of the final follow-up most of our
patients had a residual curve of
Radiological Findings
Rib-vertebra angle difference (RVAD). Our results underline previous
studies2,5,7,10,21 which have shown that the RVAD is an essential
radiological sign in distinguishing between resolving and progressive
curves. In all resolving cases the RVAD decreased during the period
of observation. In none of these patients were the ribs found to be
in phase II. This confirms the conclusions of Mehta10 that the
diagnosis of the rib head in phase II is a definitive sign of a
progressive scoliosis. When the rib head is in phase I, the RVAD is
even more important since it determines the prognosis. This
diagnostic tool has a marked influence on the treatment of infantile
scoliosis.
Pattern Of Curves
The most common pattern of resolving infantile idiopathic scoliosis
is the long single C-type lateral thoracic or thoracolumbar curve
with a slight rib hump on the convex side. In contrast to progressive
infantile and juvenile idiopathic scoliosis, double primary curves
are rare.10 Five of six patients who had lateral lexion radiographs
within the first year had a fixed lateral curve. Although
statistically not significant this suggests that resolving infantile
idiopathic scoliosis can be associated with structural changes which
may be identified radiologically.
Degree Of The Initial Curve
In our study most resolving infantile idiopathic curves had a Cobb
angle of 30 deg. The most pronounced curve which resolved was of 36
deg. Curves of 40 deg have been shown to resolve
spontaneously.7,10,21 The Cobb angle at the final follow-up was not
related to the severity of the curve at presentation.
Back Pain And Work Activity
According to the ODI patients with a resolving infantile idiopathic
scoliosis graded their disability as minimal. Few patients sought
advice for back pain and only one required hospitalisation. Almost
identical ODI values were found for the normal population in the meta-
analysis of Roland and Fairbank,37 who also showed that patients with
adolescent idiopathic scoliosis had slightly higher values. Patients
with a resolving infantile idiopathic scoliosis, when compared with
the healthy population, do not have increased back pain or disability
scores, and the variety of occupations pursued is not limited. The
treatment of resolving infantile idiopathic scoliosis had no effect
on disability at skeletal maturity.
Treatment
The treatment of early-onset resolving scoliosis by means of a
plaster bed which was common practice until recently, now seems
incomprehensible. Although it was accepted that infantile idiopathic
scoliosis may resolve spontaneously, the fear of missing the
progressive form led surgeons to advise this form of treatment for
all infantile idiopathic curves. More recently, numerous authors have
proposed that resolving idiopathic scoliosis should be treated by
early physiotherapy.3,5,12,21,23,33 We believe that once a resolving
idiopathic curve has been identified no further treatment is
required.
Critical Aspects
Although the importance of long-term reviews for a better
understanding of the natural history of spinal deformities is well
established,1,10,16,19,38 the design of retrospective studies remains
controversial. The inevitable initial selection of patients, flaws
resulting from irretrievable patients and insufficient documentation
justify some scepticism when interpreting the results. Our
observations may not represent the normal incidence found in an
unselected group of patients. However, there will be few prospective
studies with a follow-up of more than 25 years.

Re: [Infantile_Juvenile_Scoliosis] Articles of Interest and such....

2008-06-20 15:55:02

celia,
do you want the pdf file of Longterm Follow Up of Resolving Infantile Idiopathic
Scoliosis? i noticed that you only had the text file as an abstract. i just
got
it so i could upload it to the group.
deshea

Reconnecting to chat

2008-06-20 00:56:37

When I get booted at the 50 minute mark (which we all know and love),

Lumbar Scoliosis HELP!!!!!

2008-06-19 23:40:43

I'm 33 and the mother of five, at age 10 I was diagnosed with
scoliosis and at age 12 I was put in a Boston Bucket brace. I wore
this till I was 16 but I never had surgery. At 16 my curve was about
50 degrees and now it's progressed to 68 degrees. Over the past 5
years my pain has become unbearable at times. I recently had an MRI
and I will be seeing my surgeon in a couple of weeks. My question to
others is have you had a lumbar curve fixed as an adult? If so how
long was the surgery? How long was the recovery? How long where you
in the hospital? What kind of post-op pain did you experience? How
long did it take till you could resume a regular daily routine ie:
laundry, vaccuming, running errands? I appreciate any information
anyone could give me. Thank-you,
Michelle

Re: I've popped in/Joyce

2008-06-19 18:46:14

Joyce,
It is good to hear from you! Check in when you can!
Kathy

Re: Casts and Muscle Atrophy

2008-06-19 07:21:25

Hi, Diane --
I was interested to read your speculation regarding body casts and muscle
atrophy. I remember feeling like "jelly" when sprung from my final cast, 12
months after my first spinal fusion. (I had been in casts for a total of 18
months.) But the weakness and sense that my muscular support system was gone
forever did not last -- with normal physical activity, I soon felt prettty
normal once again. Of course I was just 14 at the time. No doubt recovery
would take longet now, at age 52,
The worst atrophy, however, took place during the middle six months
immediately following the fusion, when I was confined to bed in a body cast
that extended to my right hip and my left knee. My legs were very, very weak
after I got my "walking cast," and I needed -- besides a modicum of PT -- a
whole lot of practice being mobile. I remember the stairs in my house were
absolutely terrfying! And the pain and swelling made it necessary to wear
"Supp-Hose" for a few weeks. Once again, none of this lasted very long.
My own concern right now is how my muscles will ever adapt to flatback
revision surgery. At this point the delays in insurance-approval have been so
excessive that I am markedly deformed and rather inflexible in my
hunched-over position, which has resulted in asymmetries and
even structural damage from my
neck to my toes. I believe I should have had surgey when my flatback was
first apparent some 15 years ago, except that no one told me about my
condition. (The surgeon who had caused it merely made a note of it in my
records, which I did not see at the time.
) Is there some "point of no return," I wonder, beyond
which one is better off just living with the pain and disability? I sure
hope not. I don't know if anyone has data on this, but I too would be
interested in hearing about other people's experiences in this regard.
Best,
Eliana

FW: [SpineTimes] Treatment of Spondylolisthesis

2008-06-19 06:25:34

i subscribe to this .Lexi

Re: [Flatback_Revised] I've popped in

2008-06-19 05:06:26

Welcome, Joyce. It's good to have you here.
Sharon

Articles of Interest and such....

2008-06-18 16:30:27

Hey Group,
Over the next few days/weeks/months I'll be adding articles to the
files folder. I'll also add pictures of my little cutie and I
encourage any and all of you to do the same. I also want to compile a
(growing)list of doctors that I KNOW cast children. There are quite a
few out there, it's just a matter of organizing all of this.
Deirdre will soon be fitted for her Milwaukee brace and I'm scared to
death, to say the least. I'll post a picture of the modified Milwaukee
(without the neck ring) when we get possession of it. It's not
pretty ! When she saw the dreaded thing, she started crying and
repeatedly said "UGLY" :) I'm looking at physiotherapy in conjunction
with the Milwaukee. I can't afford to go see Dr. Rigo in Spain -
although it probably would be a wonderful vacation ! Have any of you
had any success with physiotherapy ?
Anywho....that' it for now. Oh, before I forget...I'd also like to
welcome Bethann and Christine to the group ! Hi Guys *waves* :)
Celia

Re: New to the list!

2008-06-18 08:50:23

Hi Amy
Bracing is usually used to stop curves from progressing and surgery is the
only proven way to correct it. (unless of course a teenager "grows out" of
her curve, like my daughter did, without any treatment). But in adults it's
usually a different story, with certain curves on average progressing with
one or two degrees per year. So it might be best to find a good reputable dr
and see him for regular follow ups.
Your situation sounds a lot like mine- was diagnosed at 12, never had
treatment apart from chiro- and physio-. Ended up with surgery at age 32. If
you stay on this list you will soon see that surgery is not the magic cure
for scoliosis, but in stead you trade one set of problems for another.
I.m.o. one must have such problems pre-op that the trade off for post-op
adaptations and limitations isn't that big. But that's just my opinion. Only
you can, with the help of knowledgable doctors, make the decision of what's
best for you.
Good luck.
Sanette
www.sanette.net

I've popped in

2008-06-18 06:11:23

Hi, Cam, Kathy, Scott, & everyone,
Finally got around to joining the group. Have been busy with work, etc.
& getting things situated for my upcoming surgery.
The posterior fusion is set for Oct. 19th. Getting new rods and screws,
(gee could they add spark plugs to pep me up?).
Then the anterior part is set for Nov. 30th.
After seeing doctors at both Emory Spinal Center & Sheperd Spinal
Center I've decided to go with Dr Carl Fackler who is associated with
Sheperd Spinal.
Read some of the posts tonight & it sounds like I've missed some
interesting subjects.
Later,
JoyceTaylor, RN Atlanta

Rigo Article

2008-06-18 03:26:19

Darn, I was hoping the article would mention the type of exercises
prescribed :( Erika, would you be able to help us out ? I read
somewhere that each exercise is specific to the type of curve ?
You actually worked with Dr. Rigo, did you not ?
Celia

Helpers)

2008-06-17 15:22:22

Ok, I thought you all would like to see some of the indignities suffered by
these oppressed prisoners...
http://www.stuffonmycat.com/

Re: Linda

2008-06-17 10:38:00

You'll need to send an email to me at linda @ scoliosislinks.com.

Oops missed my email address

2008-06-17 06:32:30

Hi Linda

My email address is:

nutty@...

:D

Re: Deshea

2008-06-16 20:13:41

hi celia,
i'm happy to be a member, and the first even!
lucas is doing well in his new cast. i think it took me more time to
adjust to it than him. as you've probably read elsewhere, he is not
getting any more correction than he was in past casts =(, but he is
being held low, and i'm happy about that. maybe we've reached a bit
of a difficult spot and over time the curve will open up more as we
keep gently pushing on it and allowing him to grow. hopefully you've
seen a picture of the new cast, but if not, here's my website with the
newest one at the bottom.
http://homepage.mac.com/desheaharris/PhotoAlbum5.html
i did finally get a rotation measurement from dr. sanders:
"the perdriolle rotation is 10 degrees (=phase 1) which is fairly
small, but not zero"
i'm hopeful that over time the serial casts will be effective since he
does not have severe rotation. now i have to read the paper that i
just uploaded to the site and the one in your last post to keep up to
date.
also, whenever you are able to get your hands on a picture of the
modified milwaukee that you are putting deirdre in, please, please
post it. i'm curious!
deshea

New file uploaded to Infantile_Juvenile_Scoliosis

2008-06-16 14:00:23

Hello,
This email message is a notification to let you know that
a file has been uploaded to the Files area of the Infantile_Juvenile_Scoliosis
group.
File : /Rigo2003PedRehab.pdf
Uploaded by : desheaharris <deshea@...
Description : Radiological and cosmetic improvement 2 years after brace
weaning
You can access this file at the URL:

Linda

2008-06-16 13:26:39

Hola Linda

Could you please send me a copy of the synopsis of the Harrington Spine Symposium that you visited?

I would be very grateful

Thanks

Nutty

re[11]

2008-06-16 02:08:29

[LINK]

He turned his head and looked dully out the window. Women Games "All right.

The tone of their protests had been Annie's exactly not bereavement but outrage. almost every day. It was even working. Yes. Stupid, fearful woman! It had been five days since his expedition into the bathroom and the parlor, and he had recuperated from that experience faster than he would ever have believed. She should have died after I stuffed her head full of blank paper and busted pages, and I should have died then, too. The Sims

Re: How I reduced my curvature by 50%....without surgery!!!

2008-06-15 19:49:45

Hi Erika,
Thank-you so much for posting about your amazing success with
exercises. Would you be able to post before and after x-rays to the
photos link ? If I understand this correctly, you must continue to do
the exercises on a daily basis in order to maintain the correction ?
If so, the same is true for yoga.
I've read about Dr. Rigo and I'm quite fascinated by his method.
Does he apply the Katharina Schroth method in his clinic in
conjunction with the Cheneau brace ? Here is an article I've been
meaning to get my hands on. Deshea, if you could get a hold of the
article in PDF format and post it to the group that would be
absolutely wonderful!!! :)
Erika, I'm sorry I had to remove the link to your website in
the "LINKS" section. I read through your story, and although I find
most of it fascinating there was a link to "raindrop therapy" which I
don't believe in ( although I think massage is beneficial in
conjunction with bracing ) and also a request to provide names and e-
mail addresses as "proof" to your investors that there are people
seriously interested in the new clinic in England. Rather than
trying to second guess what all of this means, I just deleted it :(
Pediatr Rehabil. 2003 Jul-Dec;6(3-4):195-9. Related Articles, Links
Radiological and cosmetic improvement 2 years after brace weaning--a
case report.
Rigo M.
Instituto Elena Salva, Barcelona, Spain. rigo.quera.rehab@...
In the early international literature, up to now only very few cases
are reported with adolescent idiopathic scoliosis (AIS) and a
significant improvement of Cobb angle after conservative management.
In the recent literature the possibility of an improvement of Cobb
angle at skeletal maturity after brace treatment is mentioned no
more. The application of physiotherapy and braces is widely rejected
while the standards of conservative measures differ greatly
worldwide. So it seems necessary more than ever to present the
possibility of successful conservative measures nowadays. More
detailed case reports with long-term follow-up using defined
protocols are needed to provide appropriate standards for replication
by others. The purpose of this presentation is to demonstrate the
possibility of significant improvement of curvature angle and
cosmesis after the application of long-term physiotherapy and brace
treatment in a girl with a curve of more than 50 degrees where
spontaneous resolving is not usual. A pre-menarchial girl (although
being Risser 2) with a Cobb angle of 53 degrees was treated by
exercises and curve-specific bracing for more than 3 years. Two years
after the start of the weaning period, the Cobb angle was 36 degrees
with a marked and stable cosmetic improvement at the age of 18 years.
This case report shows that conservative treatment can improve both
cosmesis and curvature in immature patients with AIS. The results of
such treatment is appreciated by the patients because of the
significant reduction of the truncal deformity as documented by
surface topography.
Publication Types:
Case Reports
Celia

Re: [Flatback_Revised] Nutty

2008-06-15 18:22:20

Hola Love

Thanks for the well wishing I am now at a cross roads, I am a year on since I started considering further surgery but I wanted to exhaust Yoga, Swimming, Cycling and various other forms of helping pain, however I now feel I am at a cross roads and need to make a decision of what to do and discuss surgery further with my surgeon.

I have sent the wheelchair back to the rent shop and am continuing to attempt walking, albeit bent over, yes I wise crack all the time it's the only way to keep a smile on my face and getting myself down doesn't help me or the people around me.

Nutty

Helpers)

2008-06-15 14:26:00

hahaha!

Nutty

2008-06-15 02:42:11

Hi Nutty,
Don't sweat the late response, obviously I understand how things can
go. In fact, I need to quit apologizing for always having to catch up
on the board. This is just the way it is with most of us from time to
time to time to time.... we manage what we can.
I'm sorry to hear you've been having such a lousy time of it lately.
I
understand those tears of pain and frustration and hopelessness vey
well my friend, dispite how you may crack wise about it, and I guess
that keeps us strong, like whistling in the dark, but I hope you're
having an easier time of it as of this writing. Are you still using
the wheelchair?
xoxo Dianne S.

Re: Beautiful Taylor

2008-06-15 00:17:40

Annie,
Thank-you for the nice comments about my "knowledge" - believe it or
not I'm just muddling through and hoping to God I don't make any
serious blunders. I've had a lot of help from a few moms such as
Deshea and together we're trying to figure all of this out. Reading
and listening to other people's experiences really helps too.
I've asked my doctor about the risks of chest wall deformities and he
reassured me that there is NO risk of that happening because of the
way the cast is applied ( there is ample room for chest expansion )
and more importantly the casts are changed every so often. It's
amazing to me that some of the highest regarded doctors in North
America i.e., Dr. Emans and Dr. Betz refuse to cast children. It's
something I can't explain.
You're in great hands with Dr. Sanders - I have the highest regard
for this doctor. If Taylor has an RVAD of 47, rest assured that he
will cast her. There are no guarantees that casting will "cure" your
daughter of the scoliosis but the odds are very good given that her
curve is below forty degrees. There's a little blurb I wrote in the
NSF about what to do when waiting for the appointment, I'll just copy
it here:
1) Avoid placing your child for any length of time in car
seats/infant swings or anything that will perpetuate a curved spine.
2) Try to gently massage your child's back - the convex side in
particular.
3) Since your baby is so small it should be easy for your husband or
yourself to carry her in a snuggly (with her back against your
chest) . Children love to be held and at the same time you will be
applying traction to her little spine.
4) I can never remember if you should lay the baby face down or face
up ? Anyway, there is a "right" position. I know that if you lay the
baby face down there is risk of SIDS - just be close by when you do.
I think that by putting the baby on her tummy while she is awake is a
good idea - it will encourage her to use her back muscles.
Take care Annie,
Celia

Human-buttons

2008-06-14 21:57:15

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Hi there,
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Where you can read the rest of this message as web page.
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Beautiful Taylor

2008-06-14 15:04:49

Hi everyone!! Hi Celia!!
You seem to be one very knowledgeable lady. I have been looking for
a way to contact you and your link came to me.
I have a ten month old little girl who was diagnosed a month ago with
infantile scoliosis. She then had a 37 degree left thoracic curve.
I have seen a couple of very qualified doctors and given the old wait
and see.
Today, we finally saw a Dr. Randal Betz from Shriner's Hospital who
re-xrayed her. Today, one month later, he said she has a 38 degree
left thoracic curve with an RAVD at the apex of 47 and at its best
spot an RAVD of 5. I am scared beyond my wildest dreams. They want
to fit her with a brace for 3 months and see what happens. He claims
at this age braces can indeed bring down the curve. He does not like
to do casting due to deformity of the chest cavity. He claims he has
seen too much deformity to like to cast. Dr. Betz is clearly an
excellent doctor but I can't seem to shake this feeling that she
should be in a cast now. I have schedule an appointment with Dr.
Sanders out of Shriner's in Erie. I know he does the casting. I am
so worried about the RAVD. My appointment is not for another
monther. I am going to try to beg to get in earlier. We still need
to have an MRI done but they expect it to come back normal. She is
so perfect, as any parent does, I just want to fix this and do the
very best for her. I don't want to be in this same spot three months
from now deciding what to do because the curve has not responded to
bracing. I am an absolute optimist but I believe in complete
knowledge and preparation to make all miracles come true. Have you
ever heard of an RAVD being that high and still responding to either
bracing or casting at such an early age?
I would greatly appreciate your thoughts and advice. You seem to
have so much knowledge about this. Your daughter is a very lucky
little girl to have you in her corner. Mother's love is amazing.
We will be away for awhile but I will eagerly await your response. I
will check as soon as I can. Thanks for starting this group.
Sincerly,
Annie

How I reduced my curvature by 50%....without surgery!!!

2008-06-14 09:32:28

Hey everyone,
I'm afraid I have been lurking on here a while, before I actually
got around to posting!!!
I guess a formal introduction would be useful: - My name is Erika,
I'm 18 and come from Suffolk, UK.
And here is my story (it is written in the format of 3 articles; the
first 2 have been published in Backbone Magazine (SAUK) and the 3rd
is due for publication in there this May): -
Exercise Can & Does Help Scoliosis!!! - Part I
In 1997 around my 11th birthday my mother noticed a slight hump on
my right shoulder when I bent forwards. We consulted our GP who
dismissed it saying that he had seen a lot worse and not to worry.
My mother consulted the Internet and thought maybe I had Marfan's
syndrome she persuaded our GP to refer me to Dr Child, who said I
had not got Marfan's but scoliosis, which should be carefully
monitored. It was not.
A year later and our local GP still would not believe that there was
any urgency in my condition but mum went into action and we saw an
orthopaedic surgeon. He said my Cobb angle was 34º and it was a case
for immediate bracing. I wore a Boston brace for 2 years. He then
said I should discontinue wearing it since I had stopped growing and
if there was any sign of deterioration to return.
After a year mum said the hump was definitely bigger. She consulted
back issues of Backbone and found a book of exercises written by
Susan Swire. I wrote to Susan and she told me about the Katharina
Schroth Klinik in Germany which specializes in physiotherapy
treatment for spinal disorders but mainly scoliosis.
Unfortunately there is a 9-month waiting list for treatment at this
huge German clinic. Through them we found that not just Germany, but
in many countries throughout the continent, treatment based on the
Schroth system is given together with bracing of a totally different
type.
Before Dr Rigo accepted me as a patient I had to convince him that I
am sufficiently self-motivated to not only overcome the language
barrier but also to carry out his exercise regime for life.
When I entered his clinic I was filled with hope and optimism. Here
was a man who was totally dedicated to the rehabilitation of
Scoliotic patients. He cannot understand why Britain and America do
not use the Katharina Schroth system. A lot of research has shown
that rehabilitation does work.
I feel that this method of treatment should be the new way forward
for treating all Scoliosis, whether large or small and that for
anybody who wishes to avoid the trauma of an operation it is
certainly worthwhile to investigate this tried, tested and non-
invasive form of Scoliotic treatment that has proved to work for
myself and many others of all ages.
Exercise Can & Does Help Scoliosis!!! - Part II
Many SAUK readers have contacted me wishing to know more about the
treatment and from their response it is clear that there is great
interest in this method. I was very pleased that our progressive
editors have published an article by Dr Weiss, head of the Schroth
Klinik in Germany (SAUK No. 68) and to read the success story by
Geoffrey and Anna Walker. It underlines the fact that there are
alternative methods of treatment and it is good to know that SAUK is
helping to keep us informed.
I revisited Dr Rigo's clinic this summer for a check-up and
adjustment to my exercise regime. During my 1st session of
rehabilitacion treatment (Summer 2002) I halved my curve from 42
degrees to 21 degrees. When Dr Rigo re-measured me this Summer 2003
I was comfortably reassured to hear him say that my correction had
been maintained and my hard work and diligence in doing the
exercises had been repaid. (See My Website for photos to
substantiate these measurements.)
I believe that I am living proof that the Katharina Schroth method
works and is a viable alternative for people wishing to avoid an
operation.
No curve is too big or too small and no person too old to be treated
successfully with rehabilitacion. For example I met at the clinic a
woman who had a very severe curvature and who had been told her
scoliosis was beyond being treated with an operation. Prior to her
treatment with Dr Rigo she was unable to carry out simple day-to-day
tasks, work or travel alone. Having received the treatment and by
doing extensive exercises she is now able to lead a normal life,
work, travel alone and is improving all the time. Last year I shared
a class with a 28 yr old who had a severe lumbar curve and this
improved noticeably after 4 weeks of intensive training. 18
adolescent girls and boys were also there for the 4-week course and
they all showed significant improvement by the end of the course.
It must be emphasized that rehabilitacion requires discipline and
self-motivation. There can be no lasting benefit without diligent
regular practise. It can only help those who are prepared to help
themselves. It was all very well my mother arranging to take me to
the clinic but it would have been a complete waste of time, money
and effort on everybody's part had I not put in my share of the work
which involves getting up half an hour earlier to do my exercises.
No one can make you do this and no one can do it for you. It has to
come from your own desire to succeed.
I would love to hear from anyone who is interested in exploring
alternative routes for treating scoliosis or who have success
stories of their own.
Exercise Can & Does Help Scoliosis!!! - Part III
Living Proof
Having reduced my curve from 42 21 degrees and having maintained
that improvement for 3 years now I believe at 18 years old I am
living proof that rehabilitation based on the Katharina Schroth
method does work. My back is straight and strong. My own experience
and that of others proves that a personal exercise plan carried out
regularly and conscientiously is a successful alternative to the
operation. Indeed rehabilitation is the treatment of choice in
several European countries.
Dr Rigo has assured me that if I continue with my present exercise
regime my curve will not increase and I will never need the
operation.
Following the publication of my first article in Backbone no 67 I
received so many emails that answering them was interfering with
school work so I decided that the answer was to build a website and
at the same time to incorporate details of various treatment methods
both conventional and alternative that have worked for others as
well as FAQs about rehabilitation treatment. This has been a huge
success I now receive 400 unique visitors per month and frequently
receive emails complimenting me on the comprehensive coverage of
Scoliosis on my site. However the downside is when I visited Dr Rigo
last autumn he asked me to stop giving out details of his clinic
because he simply cannot treat more patients.
As I walked down the Del Portal de L'Angel eating my sorbet that
evening I felt so sorry for all those people who would not be able
to have the treatment. Then I had an idea. I would open a clinic in
England to teach others the exercises based on the Katharina Schroth
method! Back in the hotel later that evening I told my parents my
plan and that I also want to eventually help people who are
financially disadvantaged to have this treatment too. They were very
enthusiastic and 100% behind me. Next day I shyly asked Dr Rigo what
he thought of the possibility of my opening a clinic like his in
England. He told me that if anyone could do it successfully it was
myself and with characteristic generosity he promised to personally
train the staff and give all the technical assistance and expertise
necessary.
For more information see www.erikamaude.com
Erika Maude
www.erikamaude.com
PS. Big apologies for the length of this post, I just hope it helps
other Scoliosis peeps out there who want to avoid the operation as
much as I did!!!

Deshea

2008-06-14 04:27:25

Hi Deshea,
Thanks for joining ! Do you know you're the first bona fide
member ? :) How's Lucas adjusting to his new cast ?
Celia

Hi Group

2008-06-13 19:18:04

Hi Everyone,
This is a brief intro to my daughter Deirdre, who was diagnosed with
infantile idiopathic scoliosis at 18 months of age with a sixty
degree curve. The moment I discovered her scoliosis will be one I
will never forget. It's a day as significant as the day she was
born. However, I'm not one to dwell in the past and I've always
tried to live each day as it comes with hopes that each tomorrow will
bring a better day. I worry about literature which shows that the
prognosis for infantile and most juvenile scolisis is not a good
one. I don't think of myself as an eternal optimist but rather as an
optimistic realist :)
Some of you may already be familiar Deirdre's story, so I won't bore
you with the details. I'm really excited about this group and I know
it's going to be great :)
Celia

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What IS 0EM Software And Why D0 You Care?

2008-06-12 10:01:42

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TOP 10 NEW TITLES
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ON SALE NOW!
1 Office Pro 2003
2 Adobe Photoshop 9.0
3 Windows XP Pro
4 Adobe Acrobat 7 Pro
5 Flash MX 2004
6 Corel Draw 12
7 Norton Antivirus 2005
8 Windows 2003 Server
9 Alias Maya 6 Wavefrt
10 Adobe Illustrator 11
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Microsoft
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Microsoft Office Professional Edition 2003
by Microsoft [INLINE]

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ListPrice: $550.00
OurPrice: $69.95
YouSave: $480.05 ( 87%)

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Availability: Available for INSTANT download!

Sales Rank: #1
Average Customer Review: 5 out of 5 stars
(based on 44 reviews)

In Good Faith I Contact You.

2008-06-11 23:55:30

Dear Sir/Ma
In Good Faith I Contact You.
Please this is not a scam letter I am contacting you via email because I
dont have your telephone or fax number, if notthing is done someone will
reap where he or she did not sow.
I am Barriste