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My mother is 78. She doesn't have Scoliosis, but she does have degenerative
disc disease, and she leans forward (but has no pain so far from it.)
I bought her a used Pentium at the Salvation Army store (complete with
monitor, keyboard and mouse) added an internal 56K modem, and AOL. She
loves email, especially the animated greeting cards people send her.
You've got her beat by 1 year!
:-)
She has had a bypass and has Parkinson's, and she says it's opened up a new
world for her, but it is very difficult for her to undersand even how to
get around AOL. I've bought her several books like AOL for Dummies, do you
recommend any general books about getting online or using computers that
might be good for her?
Nancy in the East Bay

PRAYER CHAIN

Dear Heavenly Father,
We are moved by the alarming news
and crisis that our country is
facing. This is the greatest nation, founded in
the belief that "In God We Trust" the Land of the
Free
Please have mercy on those
suffering, hurting and in fear, and give wisdom,
strength to
those who are assisting. May the forces of evil be
broken by
your power and may we be humble before thee, our
strength and refuge.

Give wisdom to our President, our
leaders and bring your comforting
peace through the power of your Holy
Spirit. Help us reach out to
those that have been affected by this tragedy

In the name of our Lord and Savior, Christ
Jesus. AMEN

Please send this to all your friends and create a
prayer chain throughout this nation.

Hello Tricia!
We are glad to have you! We are a fun loving diverse group with one
thing in common, we all hurt! Well, most of us do. A few lucky ones
have had excellent results from revision surgery. Some of us are just
thinking about it, some have decided not to have it, and some of us
just don't know yet!
I'm going to have to look up "radiculopathy" myself, but it sounds
like a fancy word for radiating nerve pain. What part of the country
are you in? It is possible someone here might be able to direct you
to a good doctor in your area. If you haven't done so already, you
might want to go to front and read some of our stories.
Kathy
Txbluebelle

Laura, Short people get scoliosis too. I'm 60 and
had surgery last Oct. at 59. I used to be 5'3" and
lost hg. to under 5' before surgery. Now I'm 5'1".
If the doctors had straightened me any more, it would
have paralized me. They did get me balanced/alined.
I'd hoped to be about 5'5" afterwards, but it wasn't
to be. I waited to late to get that much improvement.
I had A/P T2-L5 over two days.
=====
Jeanette

Hope all of you feel well !!
we r in shock & don't believe that the terror now is
every where
):
now we in Israel worried about what happened in USA
hope who live in USA fill well
Sarah

How is everyone?
I am having many thoughts about what happen yesterday and I have found
sollis in some of the righting on this page hope it doe's the same for
you all.
IF you want to vent here about what happen feel free to.
http://www.trauma-pages.com/index.phtml
Karl

Here is a quick resource for you...
http://www.back.com/symptoms-radiculopathy.html

Thank you Melanie. I have had a computer since 1995, a Mac and the only one
in this town of 1000. I had to learn it all the hard way. Had to be think
different. Lexi
From: MAHendon@...

This came via scoliosis mailing list just passing it along.

Try and have a good one.
Despite the plane crashes.
Karl

(i apologise for sending this to this list, but i had several request this info)
this is the link for the high functioning autism/asperger syndrome support list
for individuals & families (including adults who have HFA/AS)
http://www.consultmac.com/AS/
click on "F.A.Q." (on the left side)
then click on "Subscribing and Unsubscribing" (on the right side)
TBTG!
~beth, mum to shane & grace
angelus@...
"all children have gifts, some just open them later than others."

Denise, you can use any of my story you want.

Joyce E

http://mysocialsecurity.org/

But, Nutty, aren't you concerned that L1 and L2 may fuse together in a
position that causes nerve entrapment and pain? If a surgeon does it he can
monitor the nerves and put your vertebrae in the most advantageous position
(or so we all would hope).
BTW, it's great to see you posting on the site, Chica.
Sharon

I am sarahn from sarahn@...
I change the mail to this because it was hard to get
mail from thr group...
so I'm 34+
i have daughter 2+ yo
i has/had a idiopathic scoliosis, that include
kiposis, lordosis(Big) & scoliosis
i used "Boston brace" between 14-16 and i was wear
brace who made from plaster (gypsum)
I'm not English native speaker so maybe i have grammar
mistakes
Sarah (used before email from walla)

For those of you who get the digest, I am afraid you will have to
suffer through an entire "kam" digest!
Suzie, thank you, too for the warm wishes. I ahve been so happy and
light-hearted today. It is amazing what a little change of schedule
can do!
I did four presentations between 10 am and noon today and in the
second one, I said, Super-fantastic! and a girl leaned over to the
person next to her and said, "She just said super-fantastic." It made
me laugh. I might be a little extra-perky today. I hope I continue to
find perky moments through my recovery. My life is truly blessed!
kam

http://www.ejbjs.org/cgi/content/full/83/8/1285#R2

Laura,
You sound terrific. I really enjoyed your response and your attitude. I also
agree that hyperlexia is cool. I'll have to keep an eye on Boone for
scoliosis. He's very tall like his sister. They both have good muscle tone.
In fact, Amber being double jointed, was an excellent gymnast before her
scoliosis got the best of her.
Dillon's a shorty like me, so I don't think he'll have a problem, but I
still have to watch it. Bless their hearts, the boys have enough problems
without scoliosis too.
Sissi
Amber 16 (scoliosis, spinal fusion 01/16/01)
Dillon 9 (HSP Nephritis, Nephrotic Syndrome)
Boone 3 (autistic, hyperlexic)
Kids' Page
http://home.isoa.net/~nitetrax/dillon.htm
Life is just one damned thing after another. ~ Elbert Hubbard

Hey Nutty. My last doc kept telling me that I was on my way to natural
fusion without surgery. If you can manage the pain in the midst, I
suppose that one to go about it, but I am losing way too much quality
of life in the interim. I know you will make the best decisions for
you, and in the meantime, you will have us in stitches from time to
time with your wit. I wish you super-fantastic outcomes!

thanks... that sounds good...
Hugs, Ida
--- In life-with-scoliosis@y..., María Alicia Migoni <amigoni@i...

Denise - You are welcome to use my story also if you like!

Hugs - ~Mary~

Hello Ida,
I spend 8 hs a day in front the PC, like you. So, I know what it means for
your back.
About a year ago I bought an "ergonomic chair" (is the same "lumbar chair"?)
and I finished with the contractures caused by the computer.
Hope you can solve this matter.
Alice

I am finding it more difficult to sit at the computer for any
length of time... my computer chair is a lumbar chair.. but, not
of any great quality... was wondering what kind of chairs you all
have... ?? i have been spending about 8 hrs at the computer each
day, but, can't do this anymore, since my chair feels so
uncomfortable..
Hugs, Ida

In a message dated 2/11/01 11:25:24 PM Central Standard Time, GenCarrie
writes:

Hi Laura,
Whether you want to call it "flatback" or not--being fused all the way
down can cause major problems later in life. The lengthy fusion gives
you a "totally ramrod straight, flat back" causes much wear and tear
above and below the fusions, musculature problems and much, much, more.
The lordosis and balance is often out of whack and over the years you
try to compensate for all of this which leads to other problems (ie
knees, neck, etc.) Seek help and advice while you can and make sure you
have a bone density test done soon.
Good luck,
Diane Popiuk (1967 Harrington Rod Fusion)

thank you... i am already on zoloft, but wonder if i need more... i
have been taking it for 2 yrs..100 mg once a day.... but, with the
pain worse in these last months... h-m-m-m-m-m!
Yes, that medication, Zanaflex, is the name he mentioned... so
that really gives me hope... it's terrible to not be able to play
with my one & only grandchild...
Thanks again.
Hugs, Ida
--- In life-with-scoliosis@y..., Karl & Penny Coan <coank5531@b...

That's assuming that that's all that was fused, and/or that what I was
told about it was at all accurate.
Unfortunately I've rarely been told much of anything by doctors, and
most of the medical care I've gotten has been poor to borderline
criminal. For example, the doctor who diagnosed a degenerating spine
did so in about five minutes, without medical records or x-rays, and
sent me on my way.
Usually the only way I've gotten any sort of passable medical care has
been to research the subject, figure out the possibilities myself,
then keep at it until I found someone willing to look at things. Until
yesterday I didn't have any information at all about what happened to
adults with fusions. Now I've got somewhere to start with all of
this.
I do know the nurse practitioner has been willing to go to great
lengths to try to pry services and specialists out of medicaid. So
while I'm not expecting the world, I figure I might at least get some
physical therapy and pain management.
--
Laura A. Tisoncik
tisoncik@...

Ida don't let the dull drums get the best of you sounds like the pain your
suffering with is causing
you depression. This can be a very bad thing it was for me. Depression will make
your pain much
worse
And suffering with severe pain will do it every time at least it has been this
way for me. This
depression is natural we all go through it form time to time but dealing with
pain every day can
increase pain 10 x having to constantly deal with pain is very much different
than the normal
depression we all experience so please keep that in the back of your mind and
don't let it get to
you. If this happens have it look into. I have been reading for people with mild
depression St.
John's Worth works and there is other new medication's that if this happens ask
you Dr. about.
I have been taking Zoloft for my depression and it has done wonders I let
depression take over me at
one time don't let it happen to you.
The name of the med. you can't remember the name of is Zanaflex
it has really help me a lot it gave me back some of my life of the life I once
had I can finally
think about my loved ones and other stuff instead of pain all the time my wife
has gotten really
tired of it me complaining about this stuff even though she has not said so I
can see it in her
eyes. Pain will do that sorry to say.
Good luck with the test and keep us updated and feel free to post anytime you
wish vent, vent, vent
it helps so much.
Have a good one!
Karl
P.S. Just wanted to say that I am just one of the worlds many average guys I
don't know med. terms
I am just speaking to you from experience so don't get intimidated by this med.
stuff like I did.
Our sons a D.O. finishing up his schooling in medicine hope he always keeps
himself updated though
knowing him I am sure he will.
But I have been around the medical field as a patient and am very aware of all
the pros and cons of
medicine and the tremendous pressure med. students go through as well as the
tremendous ego's
they develop and it can intimidate the average person don't let this happen to
you they are all just
humans not GODS like most of them think.

Welcome, Laura !
Hey, I've gone to many doctors who just threw up their hands because I had
degenerative disc disease, and a small scoliosis curve under my previous
fusions in 1966 and 77.
They basically sent me to "alternative" treatments, for my pain, mostly. I
tried 2 osteopaths, massage therapy, 2 chiropractors, acupuncture, nothing
really worked for the pain except a combination massage therapy AND
accupressure.
I was finally in so much pain, and beginning to bend over, that I began
searching for help on the Internet.
Then I found this list, and saw there was something to be done.
Although due to my present post-operative complication (one of the screws
keeps sliding in and out of the bone) and I wish I had not had the
scoliosis fusion and hardware installed, I am glad I had the discs removed
and fused, since they were pressing on my nerves and causing pain. You
might check to see if this is why you aren't straight.
Keep searching for a good doctor, don't give up hope!
Nancy in the East Bay

I am really starting to feel sorry for myself... so thought if i
write to you all, it will make me feel better...
Today was my first time to the orthepedic specialist, whose
main work is with the spine.. he said (after x-rays) that the
osteoarthritis in the spine is severe and the curve is severe... & i
have shrunk a total of 3" in the last 4 yrs... But, he wants a
CTScan done and a bone density test.. then i go back to him..
I know you are all used to this type of information, but, i
didn't think mine was that bad, but, knew the pain was getting
worse..
He did say that after the CTScan, if it shows what he thinks it
will... he will start me on the prescription that you were talking
about, around 3 wks ago.. right now the name has escaped me...
Thanks for listening.. now i am going to rest..
Hugs, Ida

Over the years I have experienced many things that could not be explain and my faith in a greater power has keep me and many like me around able to suffer the nerve racking experiences we have to deal with. It's just good to see the two combining together, though there are many Quack's in Alternative medicine.
it's off "topic" but of great import.

Have a good one!
Karl

P.S. Click on the link depending on your browser it might not all get downloaded.

Sorry to read about your child I am one who has rejected the normal way
of medicine over the years have to many bad experiences. I think it is a
very good thing your not exposing your daughter to unneeded xrays's and
surgery just wish it was not needed but what can I say.
I have never heard of the treatments your using I will read up on them.
I don't have a successful story to post either sorry, I setup this site
hoping that people would get informed unlike myself so they will not
have to go through the stuff my wife and I have it's be very unpleasant
to say the least.
Good Luck!
And have a good one!
Karl

21.08.2001 (NEW ZEALAND)
My daughter Anna was diagnosed with scoliosis in February 2001. We
first noticed something was wrong when she constantly complained
about a sore neck. We also noticed a difference in the way she was
walking. Anna is 13 years old and was told by her specailist that
she would eventually require surgery as she was too mature for a
brace. Her curvature was 43 degrees right thoracic curve and 24
degrees left lumbar. There was a noticeable increase in her curve
after seeing the specailist. At this point I had decided with Anna
to try every alternative means possible. The first place I came
across was "Raindrop Therapy" a kit especially designed for
scoliosis. I started using these oils once a week, giving Anna back
massages which not only relaxed her muscles but also we were amazed
at how the area where the curve in her back was, was the only area
that went hot and angry looking. Hence, their theory that scoliosis
could be a virus in the spine. At the same time I gave her the
maximum dosage allowed for calcium and magnesium - (Calmax) and she
also took
homeopathy silica for normalising the bone and Rhus tox for the pain.
Instantly we started to see results. I decided to try Anna on
bach flowers to help her emotionally to get through all of this in a
positive manner. She responded well. I had heard of cranial/sacral
therapy;, a gentle healing done by qualified practioners working on
the spinal nervous system. We started this in March 2001 and continue
to have it done once a week. This would be the main therapy that has
decreased the curve the most.
The results have been amazing. Her spine is basically straight
again. I haven't had another xray done on Annas back as she had so
many previously, I don't want her exposed to that if its not
necessary. We are absolutely delighted in the results and needless
to say we were pretty excited about passing this knowledge on to
others. I have created this website to help other families going
through this. I can remember the feeling of hopelessness after
seeing the specailist until I found some alternative therapies on the
internet. At once I felt both Anna and I had a part to play in this
and we didn't have to stand on the side lines and watch it happen.
Very self-empowering.
I wish you all the best. I understand not all of these therapies may
work in every case of scoliosis, but it is definitely worth the try!
DIANA MOORE (Annas mother)
This is not intended for you to self diagnose. It is Annas sharing
of her scoliosis condition and the part she and her parents had to
play in it.
http://www.scoliosis.homestead.com/index.html
(Please come and share your positive experiences with us)

Here's another ad that posted to the list. Looks like we are still
receiving ads.
NB

Hola Hun

I hope your surgery is a great success for you in the next few months to come, will be thinking of you, I myself am seriously thinking about revision, however, I worry about my discs and deteriation if I do go for it, surely if I just let the L2 disc go of its own accord then L2 will fuse to L1 anyway so the same thing as surgery as they will do the same, I am very dubious for myself right now, either that or I am going to discuss with my surgeon in September to see if we can remove the disc that causes the pain and be done with the damn thing!

Nutty xoxoxoxo

to view the many products and services Big Planet has to offer
including for those that are interested a Opportunity to start your on business.
Contact us if we can help.
Have a good one!
Karl

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What type medicines does the pain management doctor
have you on? I need to see one.
=====
Jeanette

Dear Denise,

You could use my story, but alas, for the reason you need it, since I'm pain free I don't know if I'd be a good one to use. I still have a lot of function issues, Not being able to bend, numbness over my entire back and left thigh, I can't pick my feet up off the ground in a seated position, have to use my hand to assist them up. I also have trouble getting in and out of cars because of the leg thing, and shape of seats in cars because of the major fusions give me trouble. Any car close to the ground is impossible for me to get into, and since I can hurt myself trying I just don't. I can't twist my torso at all so driving is more difficult, especially getting a visual before trying to turn to change lanes. Am I disabled, you bet, in all the classic terms, and for now while I'm younger, I manage with these drawbacks but worry how I will be when age catches up with me. With time we will better know how diasabiling this condition ( post Flatback Surgery) will be. Doc's sure
don't give us an exact picture of what we will be like twenty years down the road, they just don't know. I know personally that I have concerns about my knees and my neck. When you take a whole segment of your body that doesn't work properly such as your spine, It just makes sence to me that your knees and your neck will become overworked. Since in the past we have experience with our lumbar disks wearing out below our fusions, I'm wondering out loud if maybe our Cervical disks may do that for those of us who are fused up very high like me to T1. So I'm very careful with these two areas of my body to make sure I will be able to function as well as I can despite my very large fusion area from T1 to S1.Hope this helps, I wish you luck with your claim!

Susan

Colorado Springs

ENJOY.
Karl

http://www.funstun.com/asmile.htm

I had my posterior hardware removed except a Hook encased at the 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.
The doc refuses to take out the anterior stuff. We already know my 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.
Life is uncertain, EAT dessert first. K@|-|Lee|\|

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THOUGHT SOME OF YOU MIGHT BE INTERESTED IN THIS.
KARL

I had all of my hardware removed in December and in some ways it was easier
than having it put in. That was the second surgery for removal. After the
first, I still had all the wire and one rod. The first surgeon did not want
to remove any of the wires. The reason I was given was because of the bone
and tissue growth that covered the area. Plus one doc suggested that there
was a risk due to the fact that these wires were originally put in and meant
to be permanent. the surgery in Dec. was supposed to take around 21/2 hours
and took almost 6,because of the difficulty getting everything. So right now
I have nothing except a couple of titanium clips marking the weak spots in my
fusion.
Gina

Though we travel the world over to find the beautiful, we must carry it
with us or we find it not.
- Ralph Waldo Emerson

Karl

My hook is loose from the Bone. I have decided not to do a thing about it.
I just watch everything I do. Take a lot a advil.
I will never let them touch me again. I have heard over and over from people
getting revision after revision. So am I better off or are they?
Katie

Language was invented to ask questions. Answers may be given by grunts and
gestures, but questions must be spoken. Humanness came of age when man asked the
first question. Social stagnation results not from a lack of answers but from the
absence of the impulse to ask questions.
- Eric Hoffer

I wish I could tell you more information but I can't. Perhaps Linda
Racine has heard of this happening. I have the rod that came out of
my back. You couldn't bend any part of it. Not even the smallest
pieces without a vice and several pounds of force. That is one tough
piece of metal hardware. The hooks themselves are great big things
and bending them would be next to impossible. However I really don't
know about them becoming unattached. It is probably easier than them
bending the rods though. Having said all that the rod and parts that
I have are a mangled twisted weird looking piece of metal. I can only
imagine the struggle they had getting them out and I really can't
even begin to figure out how they managed to screw up that rod so
bad. It must have been some fight.
Paul

I am not sure what they recommend anymore in terms of removing old
hardware. In my experience it was definitely a lot easier having it
removed. I had things taken out in two operations spread apart by 12
years though. I still have a rod left and a bunch of junk, like wire,
left in there and I have never found out why. The last orthopaedic
surgeon that looked at it thought it was probably so embedded in the
bones that it couldn't be taken out without resorting to drastic
measures. The wire and junk shows up on x-rays and it was an x-ray
technician that showed me all the stuff that was there. The
instrumentation that I had were Harrington rods, etc.
Paul

Sense moneys is a big problem for some I invite you to view Paris Finleys site.
it will explain how one start a home business. Get back to me if you have any questions.

Have good one!
Karl.
* http://coank5531:karl001@.../web/UNDERCON.htm

P.S. If a screen pop up asking for a password it's karl001 all in small caps.

I like that practicing on me answer. I will have to use it!
Denise

http://www.defendyourprivacy.com/

yes scoliosis takes a lot of moneys and if the firsttime is not a
success it wil cost depending on how one hanlds it a lot more like
everything one has!
Karl

Hey Nutty, I am taking the Schiff Move Free formula. Plus the
Chiropractor had me taking MSM before I started that even. My doctor
has me on Avinza 60mg it is a time released morphine and it really
seems to be helping me out alot. He was actually surprised I was OK
with just 60 mg he thought with the way my back looked I would need
something much stronger LOL Plus I am on Ultracet for breakthrough
pain and soma for a muscle relaxer. Are you on any prescribed
medications to help you with your pain.?
Yes I missed you and I am sure others did as well your posts were
always fun to read. Take care :)) Margaret
taken for a minimum of 6 weeks before it will take effect, this is
what my surgeon said and I quote:
it regularly for their spine. I think it is a good idea. In Spain
you can by it in the Farmacy as Cartisorb, polvo para sol. oral
1500/sobre each day for 3 months and after that two months without"
taken that advice and went to get myself some, what is the formula
that you use?
the few treatments that the naturopathic and traditional doctors
agree upon.
documented that the combo can diminish pain for people with
osteoarthritis and other connective tissue disorders.
tissue such as cartilage, and it has been documented to reduce pain
and inflammation.

Dear Nancy,
I'm so sorry to hear about all you are going through. I plan to look up the
ADA -- no doubt you are right, yet I am incredulous that it would leave
first-year employees unprotected like that.
I second the litany of protest over the assembly-line screws -- what's wrong
with the medical-devices industry, anyway?
And the pain management fiasco! Well, for what it's worth, that new JCAHO
reg went into effect January 1st. UCSF must monitor your pain management and
do right by you in that area or --presumably if this is reported too many
times -- risk losing its accreditation. I hope the staff is more with it for
your next surgery. My heart goes out to you.
As ever,
Eliana

Paul, just came across one of your older messages, and noticed this part:
At 08:38 PM 09/29/2000 +0000, you wrote:
I have
never heard of a broken hook either. The hooks themselves are pretty
big pieces of metal. However they can probably become detached from
the bones.
Do you have any experience or know of anyone else who had the hooks (or
screws) becoming detached from the bones?
I'm trying to research what other things can be done to correct it.
Thanks!
Nancy in the East Bay

Tori got her brace this morning. Tonight will be the first night she sleeps in
it. She didn't wear it for the car ride home (2 hours), and the orthotist
recommended that she not wear it Saturday when she has to fly back to upstate
NY. I just hope her father doesn't try to take over something he knows nothing
about! She doesn't need her treatment screwed up and I'm afraid that might
happen just so he can keep "control" over everything.
They took an x-ray of Tori in her brace. If the curve is not corrected enough,
they will call the orthotist to make changes to the brace. Unfortunately, he'll
have to call an orthotist in New York and tell him how to correct the brace. I
wish she could just stay here! The brace goes up into her armpits and way down
on her hips. I need to find some tight-fitting t-shirts for her to wear
underneath it. This plastic braces are so lightweight! Mine was leather and
metal bars! She may have to switch to a Milwaukee brace if this one doesn't
correct the curve enough.
Peggy Greene
JPG Unlimited
Antiques & Collectibles
jpgreene@...
Jesus laid down His life for us, so that He could give His life to us, so that
He could live His life through us!

I'm sitting here in an emotionless state of shock. After reading the
webpage on SOS I now realize that I have it. I have each and every one of
the symptoms indicated.
I buy thousands of dollars of clothes (to feel good about myself and look
normal and sexy), I spend hundreds of dollars on make-up, always buying from
places like Bergdorff or Saks (because they are the best and the best
make-up will make a beautiful face that people will see and will mis-direct
them from looking at my body which is in a state of perpetual stiffness from
the fusions and is ugly). (I perpetually daydream that I am a supermodel.
Funny, my father was a fashion photographer in N.Y.C. I grew up looking at
these perfect creatures whilst I stayed in the background wishing upon
stars.)
I am thought to be an emotionless bitch from many of my loved ones who have
called me "Cold Hearted" and "Selfish" and "Ice Woman", because I keep my
true feelings from emerging. I just don't know how to express feelings
anymore. Even being loving to my husband is an acting job. I spend more
time thinking about how my face looks and what my body is looking like in a
certain position than feeling "love". And for that matter I have never felt
"real" love in a physical sense since I was fused while I was still a
virgin. When the time came to make love I found that I could not move in
the manner necessary for love making and thus never achieved physical bliss,
if you know what I mean.
People who work with me have called me "ruthless", "dragonlady", "ice queen"
or they love me because I act like a truly caring individual. They are
jealous (and even my husband) because I am very successful. Coming from a
poor family I now have my own software company, have a million dollar house
and many cars. BUT, everyone in my family tends to forget that I take care
of them financially. They live in my house, I pay the bills and buy them
whatever they want. But they forget that. I never asked them for anything.
I just can't express my feelings. The only person I can be at ease with
and truly love in all ways is my only child, my son Bryan. With him I feel
normal. I can forget the pain, the torture, the feelings of being
different. The horrors or going to school in a brace with big baggy clothes
(that in the end didn't work), the traction, the scars, the loss of movement
and the pain of loss of love. With him I am just Mommy. Someone who he
loves unconditionally.
I guess I have this disorder that is described. How I will handle it, who
knows.
Sorry to chew everyone's ears off. Just had to speak to someone who would
not judge me. And on the e-waves I don't have to pretend.
Di/Autumn
AutumnAngl - September Moon

Hi everyone,
I am new here. I have scoliosis and had the rod/fusion surgery when I was 17,
back in 1993.
Jennifer

Here this might help.
Karl

Nancy...
No one bends at the waist. We actually bend at the hips.
Unfortunately, some of us don't fuse very quickly. And, any amount of
movement during the early post op period can cause screws to pull out.
I'm sorry that you're going to have to have more surgery.
When you were in the hospital the first time, didn't Dr. Koo or one of
his students come to visit you? He's the pain management specialist,
and I thought he visited all the UCSF spine patients.
Regards,
Linda

Peggy - What a touching story! Isn't it amazing the miracles God performs in
our lives? I am so happy for you and Tori!
~Carolyn
In a message dated 2/7/01 8:37:31 PM Central Standard Time,
jpgreene@... writes:

Kam,
I'm so very happy for you! After all, that wonderful old movie "Meet
Me in St. Louis" IS a Christmas story with that wonderful song "I'll
be home for Christmas, if only in my dreams!" You have plenty of
time to do a bit of early Christmas shopping AND get ready for
surgery.
Hugs,
Kathy

Kathy, I am truly at a loss as to what it is that you are disputing. My
exact words were:
"As to whether flatback is inevitable in Harrington rod patients, I believe
it is related to how far down your rod extends. If it extends to L3 or
lower your chance of having it is very good."
Since I was answering a question dealing with the inevitability of flatback
in Harrington rod patients, I don't know why you should wish to take
exception to it.
I am fused to L4, and I have flatback, so that is what I know, and I chose
not to comment on those in the other category.
I don't think anyone here would say for one moment that those who don't have
flatback, or who are "borderline", or even who don't have a Harrington rod
but are experiencing fusion-related problems are any less in need of help or
less welcome in this group. I actually have a sister in the last category.
I believe that anyone who identifies with us should feel welcome among us,
and if I seem to have implied otherwise, then I publically apologise for my
poor communication and sincerely hope my intentions are now better
understood.
Sharon

Medline give one all shorts of info. on medical conditions, medicine and lots more.
Good luck have a good one...
Karl
* http://www.nlm.nih.gov/medlineplus/scoliosis.html

Well, the cat scan showed that the screw is pulling in and out, and that's
why I've been having more pain and I can't stay up straight.
But they apparently cannot replace the screw--she said they do not have a
larger size screw. I don't understand why a custom-made screw can't be made.
So to stabilize the area, they would have to fuse the rest of the spine
down to the sacrum. For those who have had the fusions extended that far,
what is the difference in mobility? I haven't been able to bend from the
waist since the 1960's fusions anyway.
The suggestion was made that we try a leg brace to stabilize the leg while
the bone tries to heal. But she said she thought this wouldn't work and
they would have to then operate.
So, I opted to try the brace, and the next surgery dates are the end of
Feb. or March.
She said I would stay in the hospital 1 week. I asked for a pain management
specialist (thanks list members, for suggesting this) and I'm getting one.
I felt o.k., but now I"m afraid of the additional surgery. I feel the extra
fusions will set me back to where I started in Dec., and I'm also very
afraid of the 3 days of hellish pain I went through.
Nancy in the East Bay

We took Tori to Greenville this morning. I told the guy that makes the braces
that we didn't have coverage for this first brace and asked how much it would
cost. $1300-1400. I thought, Oh Lord, how are we going to pay for this, their
father will never agree to pay half and we have no income! Then Ed told me the
metal frame had broke this morning, and they wouldn't be able to use it to put
the cast on. Praise the Lord! Tori didn't have to be stretched as far as she
could go. Then Dr. Reeg came in to see Tori between surgeries, and he said the
curve had been measured wrong. It is actually 40 degrees, just 10 degrees more
and it will require surgery. She will still be put in a low-profile brace but
there's a good chance it won't work. The brace will be ready tomorrow afternoon
or Monday. The girls are hoping for Monday so they can stay a few days extra.
Dr. Reeg is from the Center for Scoliosis and Spinal Surgery. I didn't even
know there was such a place!
I called their father and he was really angry that I took her and had her fitted
for the brace. He thought we had agreed to do it in NY. I told him we never
agreed to that. He had told me she could be treated here and if we could get a
brace for a reasonable fee, he would pay half. He didn't feel it was reasonable
but he agreed to pay half anyway. He also agreed to let them stay longer if
needed. He called back a little while later. The insurance company will pay
80% for any brace, regardless of where she gets it!!! This put our cost down to
$140! Then someone gave us a gift at church tonight. The Lord laid it on their
hearts to give me $140 for the brace! It's all paid for and we don't even have
it yet!!!
Joanna told her father today that she wants to do school here this fall. She
told him she wants to alternate between us. I came up with a plan yesterday
that will give their father and I six months with the girls each year! The Lord
flipped the light switch and the idea came on!!! He doesn't like the idea but I
know in the end that he's going to agree. I've always had doubts before but I
know the Lord is going to make it happen this year! It is a win-win situation
for all!
Thanks for your prayers!
Peggy Greene
JPG Unlimited
Antiques & Collectibles
jpgreene@...
Jesus laid down His life for us, so that He could give His life to us, so that
He could live His life through us!

Laugh it helps!
ENJOY!
Karl

Peggy...
I think it depends A LOT on the area in which you live. I seem to
remember someone posting to one of the lists recently that a brace cost
about $2,500, but I don't remember what type of brace it was. I suspect
that if the orthotist knows you're paying for this out of your pocket,
s/he'll give you a break.
--Linda

know the approximate cost before tomorrow morning because I will probably have
to pay for this brace out of pocket. Anyone that can look it up on their bills,
please let me know. Please email me privately at jpgreene@...
going to meet us at the hospital where they fit the braces. He wants to put
Tori into a low-profile brace, and she will need to wear it 23 hours a day. The
brace-maker says he can make a brace in 48 hours. Dr. Reeg will also recommend
someone in Rochester, NY so that she'll have a specialist in both states.

From another group I did not clean it up please don't to the person
sending the post if you want just subscribe to the group but please get
another e-mail address save you box for personal stuff.
Karl

Can anyone tell me how much a Boston (low-profile) brace costs? I need to know
the approximate cost before tomorrow morning because I will probably have to pay
for this brace out of pocket. Anyone that can look it up on their bills, please
let me know. Please email me privately at jpgreene@...
We are going to see Dr. Scott Reeg in Greenville, NC tomorrow morning. He is
going to meet us at the hospital where they fit the braces. He wants to put
Tori into a low-profile brace, and she will need to wear it 23 hours a day. The
brace-maker says he can make a brace in 48 hours. Dr. Reeg will also recommend
someone in Rochester, NY so that she'll have a specialist in both states.
Thanks,
Peggy Greene
JPG Unlimited
Antiques & Collectibles
jpgreene@...
Jesus laid down His life for us, so that He could give His life to us, so that
He could live His life through us!

Dear Kam,

So HAPPY for you. I did two of my surgeries in the same december time frame, and I thought it was perfect timing, kids off from school and husband home to help. Plus it's great to wear the brace when it's cool, I can't imagine wearing that thing during summer months. I planned my surgeries for december and january and I had no regrets. What a Christmas gift it will be to have it all over!

Susan

Colorado Springs

From my view point scoliosis involves many aspects so please flee free
to talk about anything after all I do believe in free speech just please
keep as clean as possible.
THANKS!
Karl

Hi Kam....
I'm so glad you finally have dates that work!
I don't want to frighten you, but think you should be prepared for a
sharp drop in the level of service in the few weeks around Christmas.
If you've got someone who will be staying with you around the clock,
and I really hope you do, just be sure you find out who will be in
charge of your care after the surgeries, and how they can be reached
directly if necessary.
Regards,
Linda

You need to visit the website of this group....

People who have to live with the content pain from scoliosi suffers much
leading to may kinds of trauma there are links to info. here that may
help.
Karl
http://www.trauma-pages.com/index.htm

Hi all.
What a day! Bernie (Dr. Bridwell's nurse) called me this morning and
left a message saying that, if I wanted, I could have my surgeries
on December 13/December 20. I began crying and couldn't stop. Last
night I asked my sweetie how I was going to "keep this up" until the
end of February. He said he didn't know. The pain and exhaustion
have been interfering with my productivity and when I do "normal"
errands and such it wipes me out. I realized just how deep the
defeat was running when the water works started. Rest assured, these
were VERY HAPPY tears.
These dates work out perfectly for work (both mine and my hubby's),
will most of the medical expenses to be on this year's out-of-
pocket, and keep me from missing two full semesters of on-the-job
stuff.
I am feeling SO relieved. This is truly an answered prayer. I know
the emotional roller coaster will kick in and it may seem a little
strange that I am happy to be looking at spending the holidays in
St. Louis, but as one colleague said, this may turn out to be a
wonderful Christmas present.
You all are the best. I am so grateful you are here to go this
portion of the journey with me.
kam

In a message dated 2/6/2001 3:29:45 AM Eastern Standard Time,

Enjoy!
Karl
http://home.golden.net/~soul/saden.html

In a message dated 1/31/2001 6:12:20 AM Eastern Standard Time,

"Tell them you fancy the surgeon or something and that's why you
thought you would have another surgery."
That's the best one I've read yet!

Although stress can not be totally done away with there might be so ideas you can adapt to your life it does make ones pain increases very much.
Karl

I live in the Po Valley (if any of you have read the Don Camillo stories
you will recognize the name) where the fog settles in in November and moves
on its way in march. These days every time I go out I wrap up with heavy
coat zipped to the neck, heavy scarf, hat and gloves and I STILL come back
with a stiff neck. Have to use the heating pad afterwards it is so painful.
I am sure of the correlation because as I feel the cold creeping in I sense
the neck stiffening up. Would love to move to Liguria (near Nice) but it
doesn't seem to be in the cards.
Best,
Nancy
PS before this last surgery, (when i could get out) I found saunas quite
comforting. Steam was good too, but I just liked the sauna better. For me
it was a question of the heat I think more than damp or dry. A hot shower
helps nearly as much.

Those of you dealing with flat back still a little know side effects
ofscoliosis surgery with rods.
Karl
http://www.users.nac.net/mina/scoliosis.html

Karl
http://www.vh.org/Patients/IHB/Ortho/Peds/Scoliosis/Questions/Scoliosis.html

Peggy...
Please be sure that the orthopaedist that you're seeing is very
experienced in scoliosis. You can find a list of specialists at
http://www.srs.org/htm/mbrlst/mbrlst.htm. Some orthotists use off the
shelf braces. Others use custom fitted braces made from plaster cast
molds. I've never seen any research, but I would suspect that the
custom made braces are probably more comfortable and have a higher
success rate.
Since you've got limited financial resources, you might be better off
with Shriners.
http://www.shrinershq.org/Hospitals/ortho.html
It appears that the closest one to you is probably in Greenville.
http://www.shrinershq.org/shc/greenville/index.html
Good luck.
Regards,
Linda

Not a spreadsheet, a web page :-)
http://www.scoliosislinks.com/PreparingforSurgery.htm

http://users.nac.net/mina/overcompensation.html

Actually I find steam more effective than most other pain relief
methods. However it is short lived and if you get a chill afterwards
then it defeats the whole exercise. I have never found the hot tubs
or whirlpools much good. I only wish I could make one at home.
I wonder if it is a reverse process of damp cold air. When the
weather turns, and I live in the Maritimes where fog and cold are
normal, I get very sore. However steam seems to make things better. I
wonder if this is the experience of other people.
Paul

Janet,
Welcome to our own little corner of the world! I always use the word
welcome with some angst, since this is not a condition I wish on
anyone...but at least you are here among friends.
On the one hand I know you sound cavalier about the diagnosis
because you already knew you had it, and just had it confirmed by a
doctor....but it is a big deal, at least it was for me. At the
oddest times, I would find myself crying over it...usually when no
one was around to see my self pity. It sucked.
So indulge in sorrow if you feel like it...that is my recommendation
anyway. It is a pretty stunning thing to have happen again in your
life, if like me, you thought this was all behind you.
We will all be thinking of you and hopefully helping you prepare for
the "big day". Will you have staged surgery? Being fused to L-1 will
you escape having an osteotomy? When you get a minute it would be
great if you would take the time to tell use about your "scoli-
journey" til now and then we would like to set it in the files and
database so we can all have it for reference moving forward.
I will check and see if I uploaded my what to bring to the hospital
document...posts I recieved when my surgery was coming up last
winter...and I know Linda has a link up also to a spread sheet so
you might want to check that out.
I think you and Lisa will be surgical twins...we will have to get
both your dates on the calender! (Note to Dianne!)
Take care and count on us, Cam

My daughter Tori saw an orthopedist in New Bern last Friday. Her first x-rays
show a curvature of 30 degrees from T 4-10. He said it was a significant curve
for her age (8) and needs bracing. Therefore he called another specialist in
Greenville. This doctor is trying to squeeze her in this week and have her
fitted for a brace the same day. The doctor did not like the idea of waiting
until April when she returns for a visit. Please pray that this will happen
this week so that we can get treatment started before she returns to NY on
Saturday. Also pray that she can stay longer, if needed, in order to get her
brace and pray for finances to cover it. Insurance will not cover this visit
and we have been without an income since October 16.
To the scoliosis group: Do they still use plaster to make a mold for a brace or
do they have braces ready made that they can fit to each patient? Her curve is
from T4-10, will it require a Milwaukee brace or will she be able to wear a
low-profile brace? Does anyone know?
Thanks for your prayers,
Peggy Greene
JPG Unlimited
Antiques & Collectibles
jpgreene@...
Jesus laid down His life for us, so that He could give His life to us, so that
He could live His life through us!

Cam,
A FEW WEEKS! Cam, nobody said you could be gone that long. I thought
you were only going to be gone for a week! I'm already having "Cam"
withdrawal!
Kathy

Hi Diane B. and group. Just found out that I have flatback. Not a big
surprise since had Harrington rod and fusion surgery in 1976 (T4-L1).
Am having fusion extension on October 12 in Raleigh, NC with Dr. Lloyd
Hey. Please keep me in your thoughts and prayers as I do this group. So
thankful that you are all here. Wishing you all well. Janet in SC

Hi to all who were able to log into chat last night. Once again it
was a fun and enjoyable chat with friends. I wanted to say goodbye

Twinny

Hey hun I didn't realise you were feeling like that and I am surprised at your friend's so close to you being that way, tell them you fancy the surgeon or something and that's why you thought you would have another surgery LOL.

If any of my friend's spoke to me like that I would more than likely give them a very hard slap!

Nutty xoxoxoxo

test

I bought this one at Sears. The deck of the treadmill is supported by
springs. These springs take a lot of the force when you are either
walking or running (I wish) on the treadmill. I guess technically it
is a jogging treadmill. At the health centres that I have been at the
treadmills all seem to have a solid deck. There is no give when you
walk on it. So the force of walking or running (I wish) comes
straight back up your leg and into the back causing pain....
Perhaps it is just me but I really prefer the spring versions. I
think the best thing to do is bring a pair of running shoes to the
store and try out the various machines until you find one that is
comfortable. Some are as yielding as a concrete floor. And if it
hurts you then you won't use it right.
One of the main reasons why I do a lot of pool exercises, when I can
afford to go, is that they don't stress the back. With a floatation
device around you waist you can walk back and forth in the deep end
without causing lower back pain.
Paul

Denise,
I think it is normal for friends and family to "project" their
worries on to us in ways that are hurtful and unhelpful.
Of course our mothers feel guilty and worried, and our friends know
that recovery will require them to act like "friends"...which
includes a commitment of their time and energy...
I don't know if it is possible to really educate anyone who doesn't
want to know...but perhaps you could print out our "member stories"
and share them with folks who can't understand that this particular
malady doesn't have a track record of being a "one shot deal". The
human spine was intended to bend and twist and any surgery that
compromises those characteristics is certainly is going to test the
limits of any surgeon's abilities and patients body to bear.
I can understand you when you say that you would not want to live
out your natural life with this much pain, but you are too young to
consider that there is not a solution. You only have to re-read
Susan Kirkaldie's story to know that it can take awhile, but better
days can come. Take heart and know that we all understand. We are
just a point and click away.
I wish you the best, Cam

Here is the scoop on this group I started it a to have something to do
was researching some of my own stuff. I used then started taking it
serious when I saw that the info. I had come across would be benefical
to others with the same problems people like me ones who werte in sever
pain and just trying to understand what was happening to them also so of
us sorry ton say are people that the system has mess up and lied to. Yes
scoliosis is the main topic but life with it consist of much more and
other that medical stuff per. and post opp. you are no alowed to talk
about it. Well I though that a place was needed for that reason and post
links to info. I subcribed to several other groups (something you might
want to do will type down the URL for you later.) I never for one minite
though anyone would be interested in what I was doing yet I continued
out of curisioty I realy to old for help and I have been exray so many
times cut on I realy feel like no more than a ginny pig. Seeing others
benefit is what keeps me going now hope they won't incounter so of the
stuff I and many others have.
I am in no way trying to send you else where please do not read thinks
into what I say this happens much around here.
As far as this group more than conversation it is a good place for links
to info. please use them.
Sorry for any missspelling and bad grammer going to work to pay bills
incured by the bullet I had to stop school.

I took yoga before surgery, and couldn't do any of it.
Just no flexibility, everything hurt, and it felt like I was making my body
do weird things it just didn't/couldn't do!
:-)
I do several exercises with the ball. Leaning over it on my stomach,
stretching legs and arms, then I stretch one leg out the front, one out the
back while sitting on it.
Then I put it in bed, and put one leg flat on the bed (I'm on my back) and
the other one on the ball, stretching.
The last one helps the most---I put the ball behind my back against a wall,
and stretch my back over it, arms over my head, then bend my knees and roll
the ball up and down the wall.
After I do these, I'm much straighter.
Hope this helps, hard to explain via email.
Nancy in the East Bay

Dear Nutty, I was so sorry to read you have been in bed for four days.
Please take good care of yourself. You know your presence in the group
is a definite asset.
Love,
Diane B.

You can find out information on spine doctors at:
http://www.spinerep.org/doc/ratings/index.html
Paul

We here just don't talk about that much people are shy I guess.
Karl

i dont get for 2 days any massege from this e-groyp
(-;

btw
i wrote massege in my native lang. but it's not pass

sarah

Here's more on Zanaflex/Tizanidine.
Karl
* http://www.wemove.org/tizpi.html

Hola!

Long time no see, thanks for saying you missed me, makes me feel loved LOL ;-)

The Glucosamine/MSM/Chondrontin joint formula is required to be taken for a minimum of 6 weeks before it will take effect, this is what my surgeon said and I quote:

"Glucosamine is good for any joints and some of my patients take it regularly for their spine. I think it is a good idea. In Spain you can by it in the Farmacy as Cartisorb, polvo para sol. oral 1500/sobre each day for 3 months and after that two months without"

He wrote to me by email as I asked his advice, and I have also taken that advice and went to get myself some, what is the formula that you use?

Don't know if you went on my site to view the page I have about this stuff so I will put it here just in case.

This is one of the most research natural supplements, and one of the few treatments that the naturopathic and traditional doctors agree upon.
There are virtually no side effects, and clinical studies have documented that the combo can diminish pain for people with osteoarthritis and other connective tissue disorders.
The combo seems to help people plump up and repair connective tissue such as cartilage, and it has been documented to reduce pain and inflammation.

Take car chica

Nutty

ok, where do i go on the net to look up a doc's backgound?
i read in Child magazine to go to www.questionabledoctors.org, &
www.docboard.org (both of which had very little info, unless i missed something
which is very probable - check them out!)
TBTG!
~beth, mum to shane & grace
angelus@...
"all children have gifts, some just open them later than others."

I am perhaps a bit more advanced in terms of disabilities so my range
of exercise is a bit limited.
When I go for physio once a year I usually end up following this
routine. First I get a half an hour of stim or ultrasound. I then
walk with a flotation device in the deep end for about 1/2 hour. That
builds up my muscles without putting up and down pressure on my back.
That really helps limber me up. I also do stretching exercises, again
in the deep end. As a matter of fact between the deep end and the
kiddie pool I do a lot of the same exercises that are recommended for
bad backs but in the water. This prevents a lot of pain in me so I
can strengthen my back without stressing it.
Following this I spend a lot of time in the steam room. I found that
if cold damp weather makes me hurt then hot moist weather might have
the opposite effect. It does and I feel great in there. However I
have to watch it when I get out not to get a chill.
My home routine includes walking the dog a few times a day. Dogs are
great because they don't care how much you hurt... so they don't
particularly mind dragging you around despite the pain. If you want
to walk a lot then buy a dog. I also have a treadmill that is spring
loaded. This is great for walking about 1/2 hr. a day. That is about
all the stress I can stand but the springs help. The solid ones at
health centres are murder.
Anyway this is my exericise routine.

If you have a dog, you might not need the treadmill because you have to walk
the dog so much.
Lol
Betty

When people comment about you having another surgery, you can always say that "the surgeons are still practising on you and haven't got it right yet!" Most people don't want to have surgery, but sometimes there are no options. I've even asked some of these people if they would like to trade places because I would love a life without constant pain. I haven't come across anyone yet, that is willing to take me up on my offer. I wonder why?

Llweyn

Perhaps we could tell each other what specific exercises seem to help
the most.
I have one of