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Jen

Who are you seeing in Boston???

Christine
jviv314 <jviv314@...

Celia,
Thank you and God bless you for all the info you can dig up. You are
a
jewel. Deidre is a lucky girl!
Mindi,
I, too, am worried about the amount of time the doc wants Jake (now 1
year old) in his brace - a boston brace only at night. With all the
info I've read, this worries the heck out of me. We will soon be in
the same boat as you are as far as worrying about if we're putting
the
brace in the right spot. Jake gets his first brace Aug. 3 in Boston.
Not sure if this is the right course of action. I worry that it's
not
aggressive enough. Thanks to Celia and the good people in this
support
group, I now know some statistics that make me want to take action
immediately while he's still so young and flexible! Good luck with
everything.
Jennifer

Celia,
Thank you and God bless you for all the info you can dig up. You are
a
jewel. Deidre is a lucky girl!
Mindi,
I, too, am worried about the amount of time the doc wants Jake (now 1
year old) in his brace - a boston brace only at night. With all the
info I've read, this worries the heck out of me. We will soon be in
the same boat as you are as far as worrying about if we're putting
the
brace in the right spot. Jake gets his first brace Aug. 3 in Boston.
Not sure if this is the right course of action. I worry that it's
not
aggressive enough. Thanks to Celia and the good people in this
support
group, I now know some statistics that make me want to take action
immediately while he's still so young and flexible! Good luck with
everything.
Jennifer

Maryann, I'm 60. I had surgery at age 59. E-mail me
at zjcole@.... I clicked on your name, but did
not get your address.
=====
Jeanette

Hi ,
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Flixster is a free service that lets you see at a glance which movies your
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Click here to join Kathryn's community and see all her reviews:
http://www.flixster.com/servlet/invite/20425690olvhujbutwA118037264B010606
We hope you like the site!
Sincerely,
The Flixster Team (Joe & Saran)

In reply to the cane issue.
I too have been using a cane often when out. I don't use it at work but just
limp along. It's bad when your patients say "gosh, you walk worse then I
do!", etc.
I have several. A carved red one with a dragon head & marble in the mouth.
But the handiest is one that folds up to about 12 inches or so. I got it at
a drug store while visiting an aunt in Michigan. I put it in my carry on bag
when we travel as I especially need it after being on a plane.
Joyce Taylor, RN Atlanta

Hello everyone. I am 43 years old and I have a 48 degree lumbar
curve.I was diagnosed in my late twenties with a 30 degree curve and
needless to say I have experienced quite a bit of pain since that
diagnosis. I saw a Spine surgeon in February and he suggestedI have
surgery. I would like to hear from any members who are about my age
and my degree of curve, who have had surgery. I don't really fear the
surgery but I have alot of anxiety about the recovery time. I have
heard it is a long and painful process!
Thank-you,
Joan

Celia,
Interesting. I guess I am a little confused because everything
I've read and everything Duke has told us says that bracing is MORE
effective in children younger than 4 because they are so flexible and
still trying to develop their growth pattern. Believe it or not, my
husband and I can actually see a difference in our son's back from
just wearing the brace a couple of weeks. We can actually see his
right shoulder blade now whereas we could never see it before due to
his curved spine. We are praying the curve will straighten.
However, I do appreciate the research. I am going to share this with
his orthopaedist the next time we visit Duke.
- Mindi

Yikes, Lorrie! I have Anthem too, but it's NH. Dr. Rand's secretary didn't
mention anything about them being bad at paying for revision surgery. I've
actually had the impression they are very good. They are paying for my MS
injections that cost $1000 per month. I've been paying a $15 copay, though
that is going up soon. It will still be a small fraction of the cost, I'm
sure.
It also sounds like this Theresa doesn't know much about the difference
between revision surgery and initial scoliosis surgery. If I were in your
position I think I'd say anything necessary to get the letter from Dr.
Boachie's office.
I remember a couple of years back people were saying Dr. Boachie doesn't
accept insurance. I guess the idea is to put the burden of negotiating with
the insurance company on the patient, so his staff doesn't have to deal with
the hassles. I wonder if that is the real issue, and not that Anthem is bad
about paying.
I wouldn't get too worried until actually hearing back from Anthem. And if
it doesn't work out with Boachie, there are quite a few other surgeons
around the country who also have excellent reputations as revision
specialists.
I hope this works out for you. Please keep us posted.
Sharon

Di_wells...
Have you seen a scoliosis specialist about your pain? It's entirely
possible that there is a specific reason for the pain, that can be
corrected by therapy or surgery.
Regards,
Linda

please unsubscribe me to this group due to the spam and unless
nonsense it is a very big dissappoinment

celia,

Sure

thanks have fun

how many kids do u have??
Celia Vogel <celia_vogel@...

Hi Christine,
This week is NOT good, dear hubby is STILL on vacation and he's forever
planning things for us to do ! Non stop action jackson ! I have no
idea where he gets the energy.... so we're still busy busy busy with
the kids. Call me next week "K" :)
Talk soon,
Celia

You've got that right, Carole. Sometimes all her energy wears me out, like a puppy. But today her eagerness to help meant I don't have the chinchilla cages and parrot stand to clean tonight; we did it together at 7:00.

:^)

Sharon

Hi Christine,
This week is NOT good, dear hubby is STILL on vacation and he's forever
planning things for us to do ! Non stop action jackson ! I have no
idea where he gets the energy.... so we're still busy busy busy with
the kids. Call me next week "K" :)
Talk soon,
Celia

Mindi,
I was doing a search on bending braces and I couldn't find any
studies applicable to the infantile/juvenile group. I did come
across the following sobering articles:
Rev Chir Orthop Reparatrice Appar Mot. 1986;72(5):355-66. Related
Articles, Links
[Results of the orthopedic treatment of scoliosis in children under 7
years of age. Apropos of 75 cases]
[Article in French]
Mener G, Rigault P, Pouliquen JC, Tanguy D.
Seventy five children suffering from scoliosis under the age of 7
years have been treated by the authors. The treatment was commenced
before the age of 4 in infantile scoliosis and before the age of 6 in
juvenile scoliosis. It was based on the use of the Milwaukee brace
used directly in cases of angulation less than 50 degrees and
preceded by a plaster cast in other cases. The treatment was
continuous with sometimes a few hours of freedom from bracing.
Occasionally the treatment had to be stopped. The development of the
curve was very variable. The authors have distinguished seven
different types of development. The prognosis was therefore difficult
to establish and was mainly based on the specific features of the
progress of the curve. At puberty, deterioration was often seen
despite bracing and there were many indications for spine fusion.
Publication Types:
Case Reports
PMID: 3786855 [PubMed - indexed for MEDLINE]
J Pediatr Orthop. 2002 May-Jun;22(3):279-84. Related Articles, Links
Juvenile-onset scoliosis followed up to adulthood: orthopaedic and
functional outcomes.
Masso PD, Meeropol E, Lennon E.
Shriners Hospital for Children, Springfield, Massachusetts 01104, USA.
This retrospective review describes 52 children with juvenile-onset
scoliosis followed up for at least 2 years after skeletal maturity
and completion of treatment. The purpose was to compare clinical and
radiographic characteristics and curve progression, as well as
orthopaedic, functional, and psychosocial outcomes in children
treated by observation, bracing, or surgery. Seventeen percent of
patients were treated with observation and 33% with bracing; and 50%
required surgery. Median rib-vertebral angle difference and mean
level of apical vertebra differed by treatment group. Neither brace
nor surgical treatment negatively affected self-esteem. Results
suggest that juvenile scoliosis is more likely to progress, less
likely to respond to bracing, and more likely to require surgical
treatment than adolescent idiopathic scoliosis.
Orthop Clin North Am. 1999 Jul;30(3):331-41, vii. Related Articles,
Links
Infantile and juvenile scoliosis.
Dobbs MB, Weinstein SL.
Department of Orthopaedic Surgery, University of Iowa Hospitals and
Clinics, Iowa City, Iowa 52242, USA.
The diagnosis and treatment of scoliosis in the infantile and
juvenile age groups is a challenging and demanding endeavor. The
diagnosis must be firmly established. Once a deformity has proven to
be progressive, surgical intervention will likely be necessary
because orthotic treatment is less effective in these cases. The
surgeon is then faced with the dilemma of deciding on the most
appropriate surgical treatment.
Publication Types:
Review
Review, Tutorial
PMID: 10393759 [PubMed - indexed for MEDLINE

I would say a good deal of the people on this list have developed
chronic pain due to surgery. That was the original intent of the
list.
I would say that what you describe is pretty much a normal part of my
day. I would suggest that you get the fusion checked out by a
qualified orthopedic surgeon to find out if there is a specific
reason for the pain. Something might be wrong with it and can be
corrected.
At least you found a place where people will understand your problems
and offer you some hope.
Paul

I'm planning on having revision surgery on November 8th, 2005 with
Dr. Boachie. I saw him and his staff July 1st. He has no problem
with the type of surgery I am to have. I'm fused from T6-L2 with a
Harrington Rod and he plans to fuse L2, L3, L4, L5 leaving L5/s1
free. Anterior and posterior surgery. I explained to his assistant
Teresa, that my insurance is Anthem Blue Cross/Blue Shield. She
wasn't too pleased that I had this type of insurance. It is a PPO
but it is from the state of Virginia. My husband and I live in
Maryland and my husband works in DC but his company is headquartered
in Virginia - therefore the Blue Cross/Blue Shield insurance we have
has its origination in Virginia.
Theresa told us on July 1st that she knew of a patient that had
difficulty getting coverage for surgery with Anthem. But her advice
was to send the letter from Dr. Boachie describing the surgery to
Anthem and find out what was to be covered. She told me to wait
till I received word from Anthem and then schedule my surgery date
I could schedule my surgery before receiving word from Anthem
but
that was my choice. I did I scheduled the surgery for November
8th.
Well I've been waiting for word from Anthem as to what they
would
cover. So far I haven't received notice. I called Anthem and
they
said they have not received a letter from Dr. Boachie's office,
so I
decided to call Theresa. She said my letter has not gone to the
insurance company but she would try to expedite it being sent to
Anthem because I chose a surgery date.
Theresa started to explain to me again that Anthem Blue Cross was
not cooperative with covering for this surgery. About 3 years ago,
she said that she had a patient that had the same coverage and told
me that Anthem didn't want to cover any of the surgery. I told
her
the Hospital For Special Surgery was on my PPO list and she said
yes the hospital is on all PPO lists but that doesn't mean
they
will cover the surgery nor the other doctors and anesthesiologists.
I told her I understood. She asked me "What are you going to do?
I said I was going to beg and plead with the insurance company and
try to appeal if they deny me. She again said "How are you going
to
pay?" I said, "I guess I go into debt to pay". I
started to plead
my case with her and say how much I needed the surgery and how I
researched for a year to find the best surgeon and how I know there
are only about 5 very qualified revision surgeons in the country.
Then she said to me "You don't have to tell me."
She then
admitted that she couldn't remember if this patient was a 1st
time
scoliosis surgery candidate or a revision candidate.
After getting off the phone with her I started to cry. I will
do
everything in my power to pay for this surgery. If it was my child
and it wasn't me, I would do everything under the sun to pay for
a
qualified surgeon to operate on my child. As it is I have an 18
month old and if I don't have a qualified surgeon performing on
my I
feel as if I'm letting my child down in having a competent,
healthy
mother for her life.
Looking back on the conversation with Theresa and her question as
to "what I'm going to do to pay", I feel like I should
have said
that I'd be willing to get jobs night and day to pay for this
surgery. I feel like I should have told her I'd be willing to
take
up prostitution to pay for the surgery!! Great a prostitute with
scoliosis ha! But really I'm so hurt that she was so
demeaning
this surgery and disease is horrible enough to endure that I
don't
need to be questioned about my financial status in order to have the
best surgeon perform my surgery.
Sorry, I just needed to let off some steam.
Lorrie

I forgot to mention, Erin also has a kidney reflux, which was
diagnosed at 10 months. In our case I believe the two are
coincidental as Erin's scoliosis is ideopathic and didn't occur until
between 12 and 18 months. She will grow out of the reflux in time and
it's not severe enough to warrant surgery or other treatment.
Just thought i'd add that as kidney problems I see are under
discussion.
:-)

Please is there anyone else out there that has developed chronic pain
due to spinal fusion. At the time of surgery (1989) I had no pain at
all, now at the age of 24 I wake up every morning with awful back,
neck and hip pain. The pain is due to the 'extra' work that my spinal
region has to do to compensate for the fusion. I dread the thought of
the pain a decade from now and fear having children due to the added
strain on my back. PLease let me know if you understand what I am
going through..

Hi all. Sorry I haven't been on much recently - life is being hectic.
For those who don't know me, a quick intro - we live in London, UK,
and
my daughter Erin was diagnosed with ideopathic scoliosis at 20 months
with a 62degree thoracic curve and rotation. Since then, she has been
in a series of casts, which reduced the curve down to 35 degrees (in
the cast). She is now in a brace for the summer (standard pattern of
treatment here - a brace in the summer and casts at all other times).
She has a brace similar to those that some of you have described and
wears it 23/7, sometimes more. We go back to the hospital for a check
up next week, when we will find out whether the brace is holding her
curve and when we are likely to go back into a cast.
We are being treated at the Royal National Orthopaedic Hospital at
Stanmore, Middlesex.
I'll try and be on a bit more from now on and hope to get to know you
all a bit better.
Andrea

sorry for my ignorance but where exactly was your fusion? I am
experiencing chronic pain due to spinal fusion of the 5 discs
starting at L6 up. At the time of surgery (1989) I had no pain at
all, now at the age of 24 I wake up every morning with awful back,
neck and hip pain. I think that the pain is due to the 'extra' work
that my spinal region has to do to compensate for the fusion. Did
removing the hardware really 'free' your back? Did your conditions
sound similar to mine?
--- In Scoliosis-Medical@y..., Twisted Sister <twistedsister_33@y...
old fusion top and the surgeon did not want to break the fusion mass
and then have to re do it again. My hardware removed was all titanium
from the revision surgery. Now I can see why I was horrible and still
have pain. This removal surgery was the easiest to undergo out of any
surgery. My surgeon was excellant, I had three days hospital and in
about three weeks I felt back to my 'normal' self with the great
relief of not sitting on the flipping screws in my bum. Those were
the buggers! Even though I have a solid mass still, my upper torso
kind of realigned itself. Before the removal I felt stiff and pushed
into tilting forward. Since the pelvic bar and the other stuff was
out it has allowed the muscles a chance to get back to work. One
morning I awoke with a pop and felt like I had the world crushing me
down. I had this squashed feeling for a week or two then it
diminished and I no longer am pushed forward and have a more normal
feeling and looking torso. The pelvic bar apparently was moving.That
pelvic bar I hated from the first xray I saw and I really felt this
was a big part of the problem of pain because the part moved
constantly and wearing away and iritating ect.
SI's are next someday and now my knees ache but I am thrilled to have
gotten most of the metal out. EVERYONE should have it done. I was so
scared out of all of these procedures. I guess I thought I'd flop
over like a rag doll, not so. No horrific body presentation. Its not
the end of my pain or problems but I am finally progressing and feel
like my body chemistry and strength has gotten better. I believe I
was "allergic" to the metal even though my metall allergy anti-gen
test said no. I would have unexplainable fevers and all of other
wierd stuff. I thought I would do something cool with the bits of
metal but I was too upset to open the bag. I was shaking. Something
like this surgery was min blowing and life altering. At least my
crrent surgeon is compassionate and caring and HELPS!!! He does not
see surgery as ever the best solution even though he is a surgeon!
And having pain management doc is very good too.

[LINK]

Find the hole in the paper. in 1897 in 1931 "What?

You tell them you'd like two reams a ream is a package of five hundred sheets "I know that. ""Yes,»Paul said. How close had he himself come to sinking on the night of the axe? That, and the panic in her voice. "That's all right. It could be spoiled, he knew that but in spite of the reputed fragility of the creative act, it had always been the single toughest thing, the most abiding thing, in his life nothing had ever been able to pollute that crazy well of dreams: no drink, no drug, no pain. It might have lain undiscovered in the forest for another month or another year but for merest coincidence. Virus

Hi,
My name is Maryann and I have uncorrected congenital scoliosis of the
spine. I'm 54 and would like to hear from anyone who has any type of
scoliosis and just talk about what they have gone thru. I live in
Fla.
Take care and I would love to hear from anyone.
Maryann

Mindi,
What kind of correction are you getting with the brace ? Did they do
an in-brace x ray before you went home with it ? I think you
mentioned that your son's curve is 49 degrees without the brace ?
Yes, you should be concerned about the number of hours he's wearing
his brace (mother's instincts are usually right !) If I were you, I
wouldn't worry too much about muscle atrophy because if the curve
continues to progress, you'll be looking at more serious issues such
as pulmonary compromise and quite possibly major spinal surgery -
these are not pleasant issues to discuss but better discussing them
now rather than later when it's too late. I read that wearing the
brace during sleep is VERY important because that's normally when
growth occurs. Which brings me to the following....if he is only
wearing his brace mainly during sleep, why not go with the Providence
brace or the Charleston bending brace, which over corrects during
sleep ? There is a really good study on the Providence brace that I
came across a while back and I'll try to locate it for you. At this
point your goal should be correction, correction, correction.
Anyhoo... what am I doing up so early ???? I'll try to find that
article and then off to bed :)
Celia
--- In

In Italy you can take them back to the pharmacy and they see to
redistibuting them. Also there are places like the "Caritas" which is the
Roman Catholic relief agency - Caritas also works abroad a lot and sends
stuff to the missionaries. I would imagine there would be something
equivalent in the States. You might call the Council of Churches or the
Roman Catholic Diocese. I don't know much about Jewish charitable entities.
You could perhaps check the phone book. Hope this helps. (I'm afraid it's
a bit obvious).
Best,
Nancy from Italy

As I have mentioned in a previous post, our son received his brace for
scoliosis on July 12th. The first few days were rough trying to get
him to wear the brace, but now he is wearing it with little to no
problems at all. His orthopaedist told us he should wear it 16 hours a
day, but I am beginning to wonder if that is enough time each day after
reading some of your posts (?). I guess his doctor's thinking is that
he would like for him to have 8 hours a day to be active and keep his
muscles/bones strong without the brace. We try to reserve the brace
for sleeping times and his more inactive times of the day. We are
scheduled to go back for an x-ray on Sept. 13th. Should we expect any
positive results from the brace by then? If so, how much better should
his curve be, or should it remain about the same and just not get
worse? Do you expect his doctor will upgrade the number of hours he is
to wear the brace at his next visit? What is the protocol as far as
what happens when you go back for subsequent visits? Do they tighten
the brace's straps, etc.? Thanks for your input! :)

Kathy,

No problem!

We also just returned from visiting kids - it's exhausting!

Bonnie

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Our son just turned 3 June 20th. He got his brace July 12th. The
first few days were terrible trying to get him to wear it. He cried,
and we cried! But after a few days, he just began to wear it with
little problems. Right now he is supposed to wear it 16 hours a day,
so we have him wear it from 8:00 at night to 12 noon the next day.
So this leaves him 8 hours during the day to play and nap without
being confined. However, I must say, the brace is cumbersome and I
often question the exact place to put it. I always feel like I'm
putting it on too high or too low. I am constantly rechecking it to
make sure it's okay. I guess this gets easier with time. Hope this
helps!

It's the little things that affect how we feel, both on a stress level and comfort level. These little things affect how we deal with our scoliosis and not everyone sees it that way. I find sometimes it's the little things that get me to think of how to make my own life better, despite how the scoliosis physically affects me. The physical, I might not be able to control, but the emotional side I can have some control and that can make all the difference in the world. To me, getting to know others more personally with the same condition, helps me emotionally feel less isolated, so I agree with you, Margaret, this is one of the great bunches of people that I've come to know. I, also belong to Nutty's group, which is another great bunch.

I actually belong to several sites, but they are not as personable. They do have a lot of valuable information, which helps me along my journey and with my Scoliosis Association Chapter, though.

Llweyn

Hi Nancy
A "halogen" lamp or fluorescent light is also better than using a regular
"globe" and is also helpful in preventing/counteracting SAD. I've used both
while living in Canada. Liked the halogen light best. The tan parlor was
suggested to me a while back, but although I've never tried it, I think it
must be bliss with the surrounding heat and light, especially if the days
have been dreary.
Sanette

I just wanted to say how much more comfortable I feel in this group.
The other group I felt like if I posted anyting I would be chastised.
It is also nice to be able to post little things about each others
lives, not just about our scoliosis. Even though I know that is what
we are all here for. It is nice to get to know each other on a more
personal level and get to know each other by other things other then
how long our fusions are. It is also a great group of people here so
that helps too.....
Margaret

Hey Gang,
I just got off the phone with the care co-ordinator at Shriner's
Montreal and I found out that we have an appointment with Dr. Rivard
August 30, bright and early ! Now what are the chances that Dr. Hedden
is going to schedule Deirdre's final cast change for that day ?! I'm
betting that the cast change will probably be set for Aug 31. We'll
have to leave for Montreal August 29 since its a five hour trip - talk
about pressure ! I've almost completely lost it now - time for me to
visualize calm peaceful rivers/oceans and breathe DEEPLY.... anyone
having a good day ? :)
Celia

Kam,
Both my pets look pure breed. My dog is a black lab. I got him
from a local animal store they usually have animals that come in
from shelters. Though Toby was a little different, he belonged to a
neighbor of one of the girls that worked there. The lady got him at
8 weeks old and did not want him because he was peeing and pooping
on the floor. Can you believe it. When I got him he was 11 weeks old
and the first thing he did when they took him out of the cage was
poop on the floor in the store LOL They told me he was half golden
retreiver, but my vet swears he is pure black lab. My cat I got from
Friends Of Gummi in Naples Florida. This organaziation posts there
pets on petfinder.com. If you look them up on the web the story of
how they started is just heartbreaking. I got him as a kitten and he
was simply gorgeous. He had very unusual markings and when I looked
it up on the web I found a picture of a silver Tabby maine Coon that
looks just like him. Though I did not pay for a specific breed it
looks like I did. The kitten was also living with a foster Mommy who
was very careful who she choose to be a new Mommy to her little guy.
He was very shy and needed time to trust us humans. So they wanted
someone who was patient.
I lost my two cats one in 2003 and the other in Febuary of this
year. They were sisters and I got them when I was living up North
from the North Shore Animal League in Long Island. That was in 1989.
I also lost my rabbit in 2004 so I lost one pet every year for the
past 3 years. I honestly did not think I could get another pet
because of the pain I felt when I lost them.
The house felt so empty though without a cat around and I wanted a
kitten because my dog never got along with my cats. The kitten has
really taken to my dog, though the dog gets annoyed with his antics.
The lady that runs Friends of Gummi Janice E-mailed me a picture
of a little puppy last week. He was missing half of his one leg. The
mother dog had a litter of pups and ate them. She was starting to
eat this little dogs leg off when they found him. He needs to have
the rest of his leg amputated but they have to wait until he is a
little older. They brought him to Petsmart over the weekend and she
said people were very generous with money to help the poor little
guy.
As you can see I am a big animal lover. Cause I am going on and
on.......... Again lots of luck with the new addition.

Does anyone know of a non-profit agency you can donate unused meds to? I've
heard they can redistribute the meds to foreign countries, but nobody seems
to have a name or address.
Knowing that these meds are quite expensive without health insurance, I
hate to just throw them out just because I can't tolerate them.
Thanks!
Nancy in the East Bay

I've also heard a "light box" helps, since during winter, we may be
suffering from S.A.D.
However, I haven't been able to find an inexpensive one. Has anyone on the
list found one yet?
It's been very rainy and grey out here in California, and this California
native gets low without her sun.
Nancy in the East Bay

Hello Carole, Bonnie, etc.
I started using a cane several months ago. It really does seems to
help. I only have two so far. A black one that folds up and a plain
silver metal one with a padded handle. I use the metal one most of
the time and the black one for "dress."
Carole, I can't seem to get the hang of using the cane in the hand
opposite the leg that bothers me. For one thing, that
hand/wrist/etc. seems to hurt a lot more, and second I just can't
coordinate myself correctly using it in the opposite hand! LOL
Kathy

i so agree
Janet Arnott <janetarnott@...

I see the spammers have been EXTRA busy & more of a nuisance than
usual. After reporting three & then going to the message page, I see
that at least half which are displayed are for computer software. I'd
be more than happy to approve posts before they get posted to the
group. So, if Mr/Ms Moderator needs a hand let me know.
Janet.

i know that rusty will give you some tips on wearing the brace, but if i'm
remembering correctly, we had to gradually increase the amount of time lucas
wore
it, and only tighten the straps to the first marks that they put on the velcro =
looser in the beginning. then once you go back for your next appt where they
will
probably tighten the straps as much as jake will allow and take an in brace
x-ray.
then you will keep the brace at those tight marks at night.
i don't remember it being too traumatic for lucas wearing the brace at night.
we
kept to our normal routines. he was 18 mos then. they are amazingly resilient.
is he a good sleeper now?
deshea
---- Original message ----

Gang,
Jake will get his first brace on Aug.3. He will be only 1 year old by
then. Any tips on how to get him to adjust to wearing it? Our doc
only recommends doing it at night for now? Did your children have a
hard time adjusting to this? I'm afraid we won't get any real sleep
for a few weeks!
Jennifer

If you do an internet search for lortab, there are many references.
According to one site I found, the ingredients are Hydrocodone and
Acetaminophen with pronunciations given as hye-droe-KOE-done and
a-seat-a-MIN-oh-fen.

oh celia,
how disappointing for you both and of course she has stopped sneezing! it's
just
how things work out. at least it is only a month away until your next appt. i
hope for the best then.
deshea
---- Original message ----

I see the spammers have been EXTRA busy & more of a nuisance than
usual. After reporting three & then going to the message page, I see
that at least half which are displayed are for computer software. I'd
be more than happy to approve posts before they get posted to the
group. So, if Mr/Ms Moderator needs a hand let me know.
Janet.

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I took a technology fast over the weekend and am just catching up on
posts. I don't think I mentioned that my brother adopted Bonedust's
brother, Buckwheat (now he is Buckshot as he lives at a sporting clays
course). The entire litter (owner surrendered) was living with a
WONDERFUL foster mommy so they were very well socialized and cared for.
All were "altered" and up-to-date on their shots and the adoption fee
was only $25/puppy. I have a registered parti cocker given to me by my
parents for my 21st birthday and I love him dearly, but do not
anticipate ever paying for a "bred on purpose" pet again. It is such a
good feeling to adopt and the adopted ones seem to appreciate life much
more!
I would recommend it to anyone considering a special companion.
kam

Jennifer,
An RVAD of 16 is excellent news ! What degree curvature does Jake
have again ? You're probably aware that the majority of infantile
scoliosis is the resolving kind. It's a shame Dr. H didn't give you
the RVAD for the previous x-ray so that you could compare it. I
don't understand why some of these doctors are so secretive and yes
if it were their own children, I'm sure they would do things
differently ! No doubt about that...
Celia

Hi Gang,
Yesterday we spent the big bucks getting Deirdre one of the nicest
bathing suits - the plan was to take her to an amusement park with
lots and lots of water because this is the one thing she misses out
on. Everything was a go this morning - we got up, had breakfast and
headed out for our 9:20 appointment. On the way to the subway, I ran
into a neighbour and we were happily chatting on the train - ten
minutes into the trip Deirdre starts sneezing and has all this stuff
coming out of her nose (bubbles and all ! ) I'm thinking OMG she's
coming down with an upper respiratory tract infection !!! Anesthesia
and URI don't mix. We get to the hospital and the sneezing
continues - we waited two and a half hours to see Dr. Hedden and it
was decided that it wasn't a good idea at this point in time to
change the cast, given her past history with laryngospasms. He'll
try to fit her in sometime towards the end of August when he's back
from vacation. All in all, the day was kind of a let down :( She
was really disappointed she couldn't go swimming. What really upsets
me is that the sneezing has stopped completely.
Celia

Dear Kathy,

Just take care of yourself till your insurance kicks in. You may have a lot of the issues I had, and hopefully the doc's can do something to help you. Where are you located? Are you close to any of the Good Doc's? I'm so sorry that you must wait all that time to be seen, not fair! Pain can really mess up your life, so just take it easy, sit when you need to, and hopefully the seven months will go by fairly quickly.

Susan

Colorado Springs

Bonnie,
I found your story! I'm sorry, but my brain is still a little fuzzy.
We took a trip to visit the kids over the weekend and I am still not
recovered!
Kathy

Someone was looking for therabands "elastic type thingies" that you use for
resistance exercises. I found it at the same site where you can find the
Thera Ball for exercise. I don't remember which list it was, so I post it to
both.
http://www.thera-band.com/

Celia,

The current RVAD is 16. I don't know what the previous one was. Dr. Hedequist did not tell me. In fact, he didn't want to give me very much info until after the MRI in August. Should I start gathering and sending Jake's x-rays to other doc now, or should I wait until the results of the MRI? I'm scared to wait any longer. I've read in a few websites how it's been documented that bracing for infantile scoliosis is virtually ineffective. Why are these docs doing it then? I'm so frustrated. What would they do if it were their child? Need second opinion maybe third opinion fast. Jake will be 1 year old next week.

Drop a line when you can. Thank you so much to you and all the other parents in this group for all your time and info and support!

Jennifer Viveiros

A few weeks ago, when the pain management doctor put
me on this drug, he stressed how closely it is
monitored here. I noticed the pharmisist called when
he saw the Rx--I guess, he called the doctor. I only
have 60 pills to take 2 a day. He said I'd have to
come in every month so he could hand-write a new
order. He added, if people call him and say they lost
some pills or anything else, he has to say "tough
luck". More is not ordered until time. That's one
way to prevent abuse.
=====
Jeanette

Hi Titch...
In the past few years, I've started missing curbs on occasion. I
think it's a drop foot, but I'm not certain. The last time I did it,
I did some damage to my ribs on the left side, with which I'm still
dealing. In general, I think I'm a real klutz, and often wonder if
scoliosis surgery contributed to that condition. It seems that if I
start to fall, I no longer have the ability to recover. Even the
slightest little imbalance usually ends up in a fall. It's a bit
embarassing, and as you know, can be quite painful.
Regards,
Linda

Hi Bonnie,
Thanks for all your good hints! Have you posted your story? I'm
sorry, but I don't remember reading it. Anyway, welcome, we are glad
to have you here.
Kathy

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The tan-parlor idea was to get into some "sun"light. The amount of sunlight
we are exposed to has a connection with the Seretonin levels in the brain-
which causes us to feel good. Anti-depressants actually causes the Seretonin
to "heap up and overflow", so that you can feel good. That's why it takes
2-3 weeks before it works. Chronic pain and lack of sunlight depletes the
Seretonin levels.
Cutting back (for post op adults):
My advice for cutting back on painmeds would be to give yourself a goal, say
three or 5 months- Then try to cut back on one of the medications (e.g. from
Tylenol4 to Tylenol3- that's one thing I like about that, 'cause you can go
from 4-3-2 etc, makes cutting back just a little bit easier. ) Cut back on
the dosage and not the interval. For example take less mg's of a medication
in stead of cutting back from eg four times per day to three times per day.
Once you've reached that goal, give yourself at least two or three months in
between cutting back on pain meds. Also, while still on enough painmeds,
it's best to start a good exercise routine, to build strength. It's
difficult to start an exercise program without sufficient painmeds/muscle
relaxants. Ask the dr/pharmacist if you can do exercise with the meds in
your system.
My first change in painmedication was when I left the hospital and then
three months later. I stayed on that regime for at least another year and
when I'm in severe pain, that is what I still take. I really don't think
after a long winter is the best time to start cutting back or even thinking
about it. Wait untill at least Spring and warmer weather (above 74F/24C, for
me) before you start. It is also not a good idea to change medication in the
middle of major changes (climte/work/family). I found it worked best for me
when I took the medication as prescribed and then one day "suddenly"
realized I'm okay without it (because I forgot to take it). This did NOT
happen at 6 weeks post op;-) Some people on the other hand, might feel
better by setting goals.
I still find things that I do that I haven't done since surgery- like this
morning I ran down the staircase! (first time in more than 2 years- when we
moved in here about 8 months ago, I carefully and very slowly walked down
the stairs, while clutching the rail.) I experienced a lot of frustration
after surgery and therefore now prefer to surprise myself than to be
frustrated because I expect too much of myself. I know not everyone are as
fortunate as I am with all the help around the house. But part of my
recovery was to accept the help and not to feel stupid for asking. This was
major surgery, ....I still have days where I feel sorry for myself and also
days when I don't feel bad for taking the "works" for pain. I'm human
too....and can only take so much. Fortunately these are now far and
inbetween and it also depends on how busy I am and how busy the guy on the
third floor is! (We have this BIG guy that just moved in above us and I have
a problem sleeping, 'cause we can hear him walk- in the middle of the night-
I'm afraid he might fall through the ceiling... He moved in after the
previous neighbours were evicted because of their loud music and all night
parties....When I can't sleep, I toss and turn and that increases my
pain...)
Don't feel bad when you have to take painmedication to cope. Be glad you've
got something that works for you. We're all different and I'm not going to
get a flag at my grave that says
"Here lies Sanette,
she was tough;
Painmeds she declined
even when life was rough
One day in heaven you will see
her sitting under the oak tree
a trophee she'll hold in her hand
while cheering on the
non-narcotic band"

Wow! She sounds like a really good kid. She must be fun to have around!

Susan,
I read this with great interest. I have been doing MUCH less to the
point where I don't do much of anything. I can't shop, clean, cook
without sitting, you name it! Unfortunately I have a 7 month wait
before my Pre-existing Conditions are covered by insurance. My son
just had decompression surgery two weeks ago. He has a "healthy" back
and he is already back driving and will start work part time today.
All I really know about my condition is that at one level the disc is
less than half the height it once was. I suspect that is part of my
trouble, though there really isn't anything I can do about it right
now. I have no idea what is really wrong below my fusion.
Kathy
Txbluebelle

If you are still in touch with Clelia she has experience with the
Milan pain clinic and maybe can help you with it. I think she is back
from Spain. She is a member of this group but I am not sure if she
reads it much.
Paul

Hi Titch,

My leg doesn't totally give way, but it does not work as well as the other (just always seems "late" to me) and sometimes that foot drags and scuffs. I've had falls. Doc says it is either from nerve damage or scar tissue from surgery. In other words, nothing much to do about it. Four of my best friends recently told me that I look unstable and even fragile on my feet and that I should use a cane. Next day I told that to my pain doc and his response was that if my best friends were telling me that, then I most likely need it. I also realized that their assessment was correct. Well, I cried a bit, then went out to buy a pretty cane and decided I will get several to coordinate with my clothing. If I have to use a cane, at least it will be a fashion accessory. So, I've been using it for about a month (outside the house) and do find it helpful. I use it on the right side, side of the dropped shoulder and bad leg and it does seem to keep that shoulder and leg awake and up
instead of droopy.

I went to Ireland for a few days last weekend, which was a really
great break. However, it nearly ended up being a break in more
senses than one!
The first morning I was there, having arrived at 11.30 the previous
night, we went off to collect another member of the party and then in
to Cork where, wandering along chatting, and minding my own business,
I got an unexpected attack of disappearing leg syndrome. It was
about as ill-timed as it could get - normally I get better warning
because I start finding my foot scuffs along the floor, or I notice
that things just aren't feeling quite right, because maybe I have
pins and needles, or a dragging sensation in my calf. Occasionally
though, there's little to no warning - and on this occasion it
happened, resulting in foot drop, as I stepped down from a curb. Of
course the result was that my foot rolled, and I went base over apex
into the road. I got a cut hand and a nastily scraped and bruised
knee, and a thorough jarring - not to mention how utterly irritating
it was, especially right at the start of the break (there's also the
fact that while I've got rather good at not hurting my back when I do
a disappearing trick, I do hurt other parts of me, which can't be
good! There's a general danger aspect to it as well, considering
I've thrown myself practically the length of a station platform,
narrowly avoiding falling to the tracks, and have slithered down some
distance of a Spanish mountainside on another occasion). On the
positive side, it does give me ample excuse to claim that the alcohol
I consumed the following evening was purely medicinal ;o)
While I'm not terribly worried by this - after all, it's been
happening for the last 5+ years since things got bad pre-revision,
I'm getting pretty good at not denting much more than my pride, and
despite above complaints of the danger of it, I've managed to avoid
anything serious thus far - I am certainly curious as to what it is
that's happening, and would of course be glad to be rid of it (not
holding my breath mind you ;o). Anyone got any ideas, or have
anything similar happen?
titch

[LINK]

You've known that for some time, haven't you? in 1828 Online A terrible, unspeakable mistake?

Mr Rancho Grande was ostentatiously not looking at Annie, whose teeth were bared. The place smelled musty, unaired, obscurely tired. "she screamed back. He forced his eyes open. She killed him. Sometimes all one really had to go on was a family resemblance and such resemblances, of course, never precluded the unlikely but hardly impossible coincidence of bastardy. Nasty as a hand-job in a sleazy bar, fine as a fuck from the world's most talented call-girl. I must be off

Michelle,
How old is Bryson? Our son just turned 3 June 20th, and he got
his brace July 12th. His orthopaedist just looked at the brace to
make sure it was on correctly, but he said we will not get any x-rays
until Sept. 13th. Is this unusual? From the way he talked, it will
take at least a couple of months to see any change in the curvature
at all. Thanks! :)

Nancy
I couldn't find Tramandol, but did find Tramadol (Ultram in the US). It is a
non-narcotic pain med. There is a risk of seizure when taken with
anti-depressants or narcotics. I'll get the rest of the information out to
you as soon as possible. I don't think I'll post it on the general list, as
I'm not qualified to prescribe narcotics, but would at least like to help
you get some direction. I'll write you a synopsis- just getting everything
together.
S.

Well Bryson had his MRI done on july 13 and thankfully everything
seems to check out ok.
then we picked up his brace on friday 7-15 and I do not think that is
going to be of any use at all the brace guy put him in it and then I
took him over to the hospital where my husband works to get an x-ray
in the brace to see if it made any difference and it does not we did 2
x-rays one in brace and one out of the brace and they are exactly the
same the brace does nt change his curve at all. I tried to call his
ortho Dr but was not able to get in touch with hime so hopefully on
Monday I will be able to speak with him
I think I will also make some calls on Monday to see about getting
Bryson seen at another hospital with more experience in Infantile
scoliosis anyone have any reccomendations? I am moving to PA in Sept
so I would like to find someone there.

Our two cats were shelter kittens themselves. One was "surplus,
surprise" and the other was found too young scrounging around. They
are great cats! I only recommend shelters to everyone! My husband
doesn't let me go visit cuz it's too painful cuz I want to take them
all home. It's hard at pet stores when they have adoption centers set
up too. :-)
Deb M.

Dear Folks,
Could somebody tell me what the active ingredient in Lortab is?
I'm 4 months post op and still in quite a lot of pain although I'm trying
to cut down on the analgesics. I take a medicine that is call "contramal"
in Italian. The active ingredient in it is "tramandolo" which I suppose in
English would be "tramandol". I take two pills a day - they are the
long-acting version. It says it's an opiate. I also have tylenol 3 or 4
(350 mg. tyenol + 50 mg. codeine) and morphine sulphate (10 mg) if the pain
gets out of hand. I find that the tylenol helps more than the morphine. I
also take two pills (morning and night, which I have cut down from 3) of
tipride chlorohydrate - the paper enclosed in the box states that it is a
neuroleptic in the class of the benzamids. Does anybody know what this
means? I am supposed to take an anticonvulsant at night called Rivotril
whose active ingredient is clonazepam - I found that one in an old
Physician's Desk Reference - it's an anticonvulsant. I take 2 mg. of that,
and although the blurb with the box states that it is toxic for the liver,
the dosage is one tenth of a dosage for epilipsy so I guess I'm not in too
much danger. I know tylenol can hurt the liver too so I have really cut
down on that - pre-op I lived on it after the NSIADS stopped working except
for burning my stomach. I'm not worried about addiction as I am still in
pain, but I am worried about the side effects of these drugs. They were all
prescribed in France, and our family doctor is not familiar with pain
protocols so he just keeps prescribing them for me. Pain centers are few
and far between here and right now I'm still pretty housebound - am not
supposed to take long car rides till mid-April or I would go to a
well-known pain center outside Milan. The one in our town, Parma, deals
almost exclusively with cancer patients. Also can someone tell me the
active ingredient in Paxil? I am getting more and more depressed - perhaps
it wouldn't hurt to try it. Anything rather than this sense of paralysis
which seems to overwhelm me at times. I suppose it's natural after seven
operations, but it's hard to fight. Any input would be welcome. Thanks in
advance.
Best,
Nancy from Italy

Hi friend,

My son was born with scoliosis so the first thing the doctors did was check his kidneys. Apparently the two are formed in the same weeks in the womb, so a child with problems in one are may have them in the other. (My son's kidneys are slightly small but otherwise normal).

Teni

(his dad) donated a kidney to him Jan. 31st of this year. They are
both doing great now, but our son's kidney disease caused scoliosis.
Currently his curvature is 49 degrees, and his doctor has just this
week braced him. This has been devastating to us because we have
already been through so much with his kidney disease. We are having
A LOT of trouble getting him to wear the brace. He is supposed to
wear it 16 hours daily. Any tips/suggestions on how to get a 3-year-
old to wear this brace?

This comes from the NY Times web site www.nytimes.com on 3/5/2001.
March 5, 2001
MEDICINE MERCHANTS / Uses and Abuses
Use of Painkiller Grows Quickly, Along With Widespread Abuse
By BARRY MEIER and MELODY PETERSEN

Hi....(((((HUGS to you and your family)))) What a heart wrenching
story !! It's devastating to find out your son developed scoliosis
after the kidney transplant. I wouldn't waste any time with your
son's scoliosis. I would seek out a doctor who does serial casting
and get him into it ASAP. He isn't co-operating with wearing the
brace...his curve will progress. Given his age and degree of
curvature there is still a chance that casting can help. Is his
curve rigid or flexible ? There is so much more I want to say but
our family is getting ready to go on a weekend getaway (fishing of
all things !!!!). There are some really intelligent moms on this
site who can give you some more advice. Oh, and welcome to the
group !!!!! *waves* :8)
Celia
--- In

Just a question--when do people usually have their meds cut, or as they
call it, the stepdown, after the hardware/fusion surgery, and when do you
go off it completely, if all goes well? I'm sure there is a range out
there, but just want to see what it is.
Thanks!
Nancy in the East Bay

Amber had surgery Jan 16. She stopped taking meds 2 weeks ago. She's only 16
though. I think probably the younger you are the quicker you heal.
Sissi
Kids
http://home.isoa.net/~nitetrax/dillon.htm
Work
www.thealbanyjournal.com
Play
www.thealbanyjournal.com/nitetrax.htm
Life is just one damned thing after another. ~ Elbert Hubbard

Well, I tried Percocet, but it made me throw up. I thought it was that
greasy burrito that my son brought home to me, but it kept up for days.
Also, without the Lortab at night, I couldn't sleep.
I called the on call doctor at UCSF--took 4 hours for them to get back to
me (last time it was 5 hours, what's the deal with that!)
The doctor suggested going back to the Lortab every 4 hours. I'm feeling a
lot better, and could sleep at least 4-5 hours at night again. It makes me
a little spacey, and have a few crazy dreams, but I feel much better.
Nancy in the East Bay

Hello Everyone!
My husband and I have a son who turned 3 June 20th. He was born
with bilateral hypoplastic chronic kidney disease, and my husband
(his dad) donated a kidney to him Jan. 31st of this year. They are
both doing great now, but our son's kidney disease caused scoliosis.
Currently his curvature is 49 degrees, and his doctor has just this
week braced him. This has been devastating to us because we have
already been through so much with his kidney disease. We are having
A LOT of trouble getting him to wear the brace. He is supposed to
wear it 16 hours daily. Any tips/suggestions on how to get a 3-year-
old to wear this brace? The brace is the kind that fits below the
arm on one side, and around the rib area on the other side. Also, is
there anyone else in this group who has a child this young with
scoliosis caused by kidney disease? In searching the Internet, it
seems this particular type of scoliosis is extremely rare. Last
question - our son's curvature progressed 9 degrees in three months
post kidney transplant. This sounds horrible to my husband and me.
Will the brace correct this curvature? Is there a chance he will be
able to get out of wearing the brace in a few short years, or is this
something we are looking at dealing with for the long haul? Also,
who are the best doctors/hospitals for this? Thanks so much! I look
forward to learning from you all and sharing what I can. :)

From Medscape General Medicine
Webcast Video Editorials
Open Access Medical Publishing Is Finally Coming Alive
Posted 07/01/2005
George D. Lundberg, MD
Taxpayers pay for most medical research and clinical medicine in the
United States and most developed countries. Then who owns the results
of that research? The taxpayers, obviously. And yet, forever it
seems, the researchers and authors have published their results, as
if they owned them, in whatever primary-source medical and science
journals they wished and have transferred their copyright ownership
to that publisher. The publishers of the journals then solicit
advertising, receive membership dues, and sell paid subscriptions for
access to the information back to the taxpayer, so taxpayer doctors
can treat taxpayer patients. Wait a minute! Am I saying that the
owners of the results have to pay for it again in order to use it
medically? Yuck. But now, we have open access publishing, first made
possible by the Internet, with full-text published articles available
free of charge to all. Does this threaten medical publishers? Oh,
yeah. Many of the biggest ones still refuse to participate.
Fortunately for doctors and patients, this is changing. Medscape,[1]
PubMed Central,[2] FreeMedicalJournals,[3] BioMed Central,[4] the
Public Library of Science/Medicine,[5] and others all provide full-
text, primary-source articles free to the doctor and patient user.
And the National Institutes of Health finally is exerting some real
leadership with the research community to make this a much larger
movement. It's about time.
That's my opinion. I'm Dr. George Lundberg, Editor of MedGenMed.
Readers are encouraged to respond for the editor's eye only or for
consideration for publication via email: glundberg@... .
Please include the title of the Webcast Video Editorial that you are
responding to in the subject line of your email.
References
Medscape Today. Available at: http://www.medscape.com Accessed June
21, 2005.
PubMed Central FAQs. Available at:
http://www.pubmedcentral.nih.gov/about/faq.html Accessed June 21,
2005.
The Free Medical Journals Site. Available at:
http://www.freemedicaljournals.com Accessed June 21, 2005.
BioMed Central. Available at: http://www.biomedcentral.com Accessed
June 21, 2005.
PLoS Medicine. Available at: http://www.plosmedicine.org Accessed
June 21, 2005.
George D. Lundberg, MD, Editor-in-Chief, Medscape General Medicine;
Adjunct Professor of Health Policy, Harvard School of Public Health,
Boston, Massachusetts
Disclosure: George D. Lundberg, MD, is an employee of WebMD.
Medscape General Medicine. 2005;7(3) ©2005 Medscape

Thanks for sharing this bit of "humor" with us conerning situations that we
all too frequently encounter. Humor can help us get through even the most
difficult of times.
Melanie :-)

Nutty, et al:
I see a number of websites that carry the memory foam seating pad that
I'm using at work. Google "Kensington Memory Foam Seat Rest" and/or
Back rest. I use both and I'm loving them....hopefully there
will be a site available to you across the seas.
Edie
--- In

I let this through because it really applies to some of the doctors I
have seen over the years. Frustrating as it may be it is all too true
in a lot of cases.
You can get an idea of what other people think of a doctor at:
http://spinerep.com/doc/Home.html
Paul

Dear Kam,

The pain difference between Flat back and Stenosis/ Nuerogenic Claudication was thus, The stenosis gave me severe pain that ran down my leg, like constantly being stabbed. The only relief was sitting down. It got worse as the day went on. Flatback gave an awful ache in my hip and a constant dull ache in my low back. This didn't resolve itself when I sat down, needed pain killers for that . Pain Killers never touched the Stenosis pain, it only resolved itself by sitting down. Hope that explains the pain difference better. I had three epidural injections, got Zero relief from them. I too had severe arthritis of the L-4 L-5 and L-5 S-1 facet joints.

Okay here comes my two cents, what was right for me may not be right for you. I'm a stay at home Mom minus the pressures of work and getting time off. I think with those pressures I would probably have opted to do the revision instead of the Decompression. Each of us with Flatback come into this with vastly different spines, no two of us are the same. I'm not sure how many opinions you have gotten, but I suggest getting a couple. Then you have to do what right for you and your family. And like I said before, doing a decompression before Revision only buys you time, and for me it was only a year, so maybe with your leave time that won't work for you.

Did the idea of revision scare the crap out of me? You bet!!!!! Did being scared of the " Big" surgery play a part in going for the Decompression, maybe. I read things in the other group penned by Elizabeth Mina, and literally shook while reading it. Everything I read scared me. My doc took this surgery very seriously, and said revision should be the last resort. So I went down the path I did. While revision was a big assult on my body, for me, it wasn't as bad as I had built it up in my mind. Let me say that I'm very lucky, everything went very well, and for MANY in this group, they haven't had the results I have had. I'm thankful everyday for my good luck, and am so sad that many here still struggle. You should have respect for the complextivity of the surgery and know these doc's can't give you any guarantee. You are weighing a huge decision, and I wish that I had someone to talk with before I did what I did, but ultimately it's your decision. My story is only one point
of view, I'm sure there maybe some out there with a different opinion.

For me, the decompression was my most painful surgery. My second surgery with Kumar, fusion to the sacrum while painful, was much easier to recover from than the decompression. Please note that my decompression was also removal of the Harrington Rod, which made for a big incision, and since that was my first back surgery in twenty seven years, maybe I just had a hard time with it. Maybe to as we went along with the surgeries Kumar got better with my pain control. Maybe I got used to recovering, knew what things felt like etc. I had my decompression and two revisions in twenty four months total. A total of 30 hours of surgery, 27 units of blood between them. While recovery for me was easier than expected, I've never not respected the fact that it could have gone another way for me. And while I'm now painfree, upright, level, It never leaves my mind that it may not be that way forever. I had a bout of Hardware irritation, and ran in and got X-Rays just sure I had a
pseudarthrosis, and when I have a twinge I'm sure I'm falling apart again. Not sure that will ever leave my mind. Just have to hope that since I'm good now I will always be. But in case I'm not, I keep this group close so I can know there is support out there and help weighing my options if I need to. Hope this helps, glad it's not me doing that decision making, it's so tough!

Susan

Colorado Springs

hi jennifer,
my name is deshea, and i'm mom to lucas 3 1/2 yrs old and ruby 1 yr old. i live
in woburn, ma. lucas was first diagnosed with infantile scoliosis when he was
18
mos old, but he had it much earlier looking back at pictures. he has a double
curve (right thoracic/left thoracolumbar) that at its worse was 68o/45o rvad? --
never was told the number initially, but assumed it was progressive. we went to
children's in boston and dr. hedequist was our ortho from 18 mos to 2 1/2 yrs
(until april 2004). at that point, we decided to do casting and since july 2004
we have been going to erie, pa to see dr. sanders.
while at children's, lucas initially wore a custom made (from a plaster mould)
bosotn/tlso during naps and nighttime. after getting some second and third
opinions, we asked to be more aggressive in his bracing. then we did this brace
during the day and had a charleston/bending brace made for nighttime. lucas
also
had a tethered spinal cord due to a fatty/tight filum and had the detethering
surgery close to his 2nd birthday at children's by dr. proctor (whom i highly
recommend). lucas grew out of the boston/tlso and had a new one made that was
only made from measurements (not a plaster mould). this one never fit him
properly and was uncomfortable. unfortunately, children's doesn't believe in
taking x-rays in the braces (except for the initial boston/tlso) so we never
felt
comfortable that the braces were working. we did really like rusty at the brace
shop (nopco) at children's, but he was only following dr. hedequists orders.
lucas got down to the 30s in an out of brace x-ray, but then come april 2004 in
the not well-fitted 2nd boston/tlso it started to creep back up again. by the
time we went to erie in july of 2004, it was back up in the 50s.
okay, i realize that this is very, very long winded, but personally, i admit
that
i did not have a good experience at children's although from another mom who has
gone since then (but then decided to do the casting route as well but in salt
lake
city with dr. d'astous), she did have a better experience with dr. emans (the
head
ortho), and he seemed more interested in casting (although not necessarily doing
it at children's). my advice for you is to be very, very proactive in your care
for jake. ask as many questions as you can in the short amount of time that
they
give you, and honestly, make sure you get a second and third opinion. we've
also
had some dealings with dr. michael goldberg at tufts/nemc or floating children's
(i forget the name exactly), and if you decide to do bracing, i would recommend
him over children's. i believe that he is more aggressive in his bracing
technique and takes x-rays in the brace so that you know how the brace is
affecting the curve. very, very important in my opinion.
of course, i would also recommend possibly sending your x-rays and medical
information to dr. sanders in erie to see if he thinks casting might benefit.
if
you need his information, i would be happy to send it to you.
oh, after reading your e-mail, i realized that you already have an ortho since
you've had several x-rays. where have you been going so far? if s/he is not a
pediatric orthopaedist then you are right in going somewhere else. also, have
you
had an mri scheduled? an x-ray can show whether or not there is any bone
malformations (fused vertebrae, hemivertebrae, fused ribs, etc. = congenital
scoliosis), but only an mri can show whether or not there is any neurological
issues going on. lucas had no external indications or developmental delays to
indicate that he had a tethered spinal cord so we were shocked when we found
this
out. of course, we believe that this contributed to his scoliosis, but it is
probably not the only reason. therefore, detethering was very important prior
to
treatment.
i tend to ramble =), can you tell? also, since we've been dealing with this for
2
years, i have gathered a bit of info and experience. anyway, ask more
questions,
and then i'll respond as best i can otherwise, i will just go on and on (or have
i
done that already????)
we could also talk by phone if that works better for you. just e-mail me
directly.
also, you are welcome to look at a website that i've taken pictures of lucas
over
the years with braces, casts and his x-rays:
http://homepage.mac.com/desheaharris/PhotoAlbum5.html
i look forward to talking with you more,
deshea
p.s. celia is correct that getting the rvad # is very important. it is really
the
true indicator of whether or not his curve is of the resolving or progressive
type
as you probably know from the mehta video.
---- Original message ----

Jennifer,
Find out what the RVAD number is.
Celia

Linda,
I started to tilt over after the surgery to S1. There is no hardware since
the fusion was only that last disc. He wanted to do whatever he needed to do
to make it straight but the surgery had been too long. The surgeon was James
Tozzi out of Washington, D.C. The surgery removed the little Harrington clip
that replaced the 14 inch rod taken out 5 years prior when l4/5 failed to
fuse. The original rod became displaced from the hook at the top. The
original surgery had been done in 81 at Johns Hopkins with Vernon Tolo. The
rod remained loose for 8 months because Hopkins never xrayed from the side.
Finally, the rod started to poke through at the bottom. I am very hunched
over and thge shoulders and knees have also suffered. Any advice?

Hiya Kam,
It's a quandry....I also have the same type of arthritic condition and
ddd that you do. I think your doctor was very honest in stating that
the laminotomy may help you get by for a while longer. The question
is, how long? For Susan, it was about a year. For me, it's only been
3.5 months, but I do feel like it has given me my life back
temporarily. If you had asked me one month ago "Was it worth it?" I
would have probably said that I wished I had just gone for the full
revision. Now, because I'm having a string of good days, I feel that
it was a good decision for me. How I'll feel next week, or in a few
months is yet to be seen.
Also, before I forget, I need to clarify that the injection I had was
an epidural, not trigger point, as I had originally stated--sorry. It
helped me a lot, and I was lucky in the fact that it was not a
horrible experience.
I can now do my job comfortably (I've only been back 3 weeks), but as
I think I've told you, I am constantly vigilant about swimming every
morning, using a cane outside (I'm weaning myself from it indoors at
work), taking the vitamins andm minerals we've spoken of in the past,
and stretching every evening. It's a lot of work, but for me it's paid
off.
Susan also had rod removal during her lami/disc, which I'm sure added
to the tremendous discomfort in her recovery. My recovery was really
really tough...I can't imagine if I had the rod removed at the same
time. I'm sure it was twice as tough for her.
I wish either of us could give you an answer. Both of us certainly
feel it was worthwhile for our own personal experiences.
The scariest thing about going for revision surgery right off the bat?
I was opting for whatever methods I could to stave off the revision
surgery and to keep whatever little flexibility I have in tact. I do
know that if and when I have another back breakdown, I'll have to go
with the revision at that point. I've managed my flatback/arthritic
condition for a good 7 years, and my hope was that I could get back
into the shape I was in before my March meltdown, and maybe buy myself
more time.
Lastly, you are certainly not whining at all. This is a really
difficult decision. Please ask me all the questions you need if it
will help you make the right choice for yourself. All of our bodies
are different, so our reactions to surgery will not necessarily be the
same, as you know.
So I will certainly go over and over and over this with you if you
like....anything I can help you with, I'll be more than happy to do
so. All I do know is that I could not live any longer with the pain I
was in, and this so far, has proved to be a very good temporary
solution for me.
Edie

I'm sending this to parenting_autism, henoch-schonlein, porphyria and
scoliosis lists and some friends, so some of it may be off topic for some
lists, but they're all my kids so if you don't want to hear it all, go ahead
and delete now.
Amber:
We saw Dr. Horton for Amber's follow up yesterday. She is doing great. After
her spinal fusion, Doc said he was only able to get a little correction --
ugh! He told us before surgery the best they could hope for was a 50%
correction. She started with a 64% curve and as of yesterday her curve is
17%!!!! That's almost a 75% correction!!!! Her rib hump is noticeably
smaller and her hips are aligned. Amber stopped taking pain meds two weeks
ago. Nurse Youngblood was very impressed with that since she was in so much
pain in the hospital. She goes back to school Monday. She can't wait to get
back.
Dr. Horton is a wonderful surgeon. We're in total awe of him, especially
after some of the experiences we've had with Dillon's and Boone's
specialists.
Dillon:
Dillon completed his testing for PAN and Wegener's today with a CT scan. The
results from the barium swallow are in. Ped emailed me that Dillon has
duodenitis. This is the source of his abdominal pain. Duodenitis is an
inflammation of the small intestine which could either be caused by
autoimmunity or it could be an ulcer caused by long-term steroid therapy.
We'll have to wait for the results of the immune panel to be sure. The rest
of the results should be in by Monday. He wants to discuss all the results
with the rheumatologist and nephrologist before we talk about the rest of
the results, so I'm waiting impatiently, as always with him (Dillon -- not
the ped, he's great). Poor kid never gets a break.
Boone:
Boone's teachers and I met with the autism task force, which Lee County has
never had before. They were wonderful. There was a parent of an autistic
child (she was the most helpful for me) A special ed teacher who specialises
in autism (she and Boone's teacher clashed on some behavior methods) A
psychologist who feels Boone is a genius (as does the task force sped
teacher) and that he is not being challenged academically because he's in a
learning disabled pre-K class. She feels his problems are sensory,
communication and behavior -- not a learning disability (I tried to tell
them that!!). They made a lot of recommendations and Boone's teachers (sped
and speech) are jumping through hoops to meet the recommendations of the
task force and the Marcus Institute. Since they paid for the
recommendations, I guess they can't refuse them! Isn't that great? It feels
like some kind of a dream. I can hardly believe it. The private speech
therapist we contacted put Boone on a waiting list, but she called today
and he starts Monday. This is in addition to the 5 days of speech he gets at
school. The school will also provide occupational therapy in addition to
what he gets from private OT at Pheobe.
Boone will receive behavior intervention through the school system,
which they say they can handle. We'll see. And I got a lot of great ideas to
start a program at home. We have a teacher's college here, so maybe I can
hire a couple of students to help.
All in all (with exception of Dillon, but I'm keeping my fingers crossed)
things are really looking up.
Sissi
Kids
http://home.isoa.net/~nitetrax/dillon.htm
Work
www.thealbanyjournal.com
Play
www.thealbanyjournal.com/nitetrax.htm
Life is just one damned thing after another. ~ Elbert Hubbard

Hi, all. I am new to the group. My 11 month old son was diagnosed
with infantile scoli in Dec 2004 when he was just 5 months old. He
has
a double curve. Thoracic curve was 20 degrees, lumbar curve was 19.
Dr. advised we wait and see. 2nd x-ray showed thoracic 20 and lumbar
14. We were ecstatic, thought we were out of the woods. Again wait
and see. 3rd x-ray showed thoracic 26 and lumbar 13. Scared to
death. (The final x-ray was the first time he sat unsupported for
his
x-ray. Does this make a difference?) He advised a soft Boston brace
worn 23 hours a day. Instead of being fitted for this brace, I called
Boston Children's Hospital and set an appt with Dr. Hedequist for
tomorrow morning. I have my x-rays and my questions ready to go.
Anyone out there ever seen this doc? Ever heard anything about him?
What can I expect? I've seen Dr. Mehta's video "A New Direction" and
found it very informative. Has anyone ever heard of a double curve
resolving itself? Or does it just get progressively worse? Looking
forward to hearing from anyone in the same boat as we are.
Sincerely,
Jennifer - Jake's Mom