Wooohoooooooooooo Kam! I certainly hope it wasn't the same restaurant that was highly recommended to us in Amarillo! Glad to hear you weren't thoroughly disappointed with Dr. LaGrone...and it is reassuring to hear one doctor agrees with another, isn't it? I believe we both will be having out surgeries around the same time now, so the very best to you in St. Louis from San Francisco!
~Mary~
I received my information package from the Florida Spine Institute (FSI) in
Clearwater today. Seems pretty impressive. A neurosurgeon referred me there.
This facility was also recommended by my PCP.
The info package explains what a three day evaluation involves and it seems
pretty thorough. (That is if you don't live in the area and want to come
down for an evaluation) It will also tell you what is available and what
kind of tests they usually do as part of the evaluation, as well as some new
spinal procedures. Most of the information is also available on the
internet.
I don't know how many scoliosis cases they see each year, but will find out
when I go for my appointment. As far as I know there is no SRS dr there, but
the neurosurgeon said the dr he referred me to, does scoliosis surgery.
FSI's website is www.spinepain.com The info package can be requested by
filling out a form on the website.
Sanette
Hi Everyone,
Sorry I haven't posted, I have had a crazy summer! Got stuck in
Hurricane Emily in Cancun and came home with Viral Menangitis!! UGH!
Anyways...we just returned from Utah with Nicholas for our cast
change. I was horrified when the cast came off because his skin
breakdown was awful! I wasn't sure how they would do a new cast
with his skin in such bad shape. We have had 7 or 8 casts and NEVER
has it looked like that. We also had an eval. at Primary Childrens
for the Titanium Rib. Honestly I didn't think he would be accepted
because his curve is only 50 right now, but he did. YEAH!! I swear
I never thought I would be saying this. I couldn't even stand the
surgery word but I am SO...ready for it. Mark and I decided not
cast Nicholas anymore since his surgery is scheduled for Nov. 7th in
Utah. For those of you who don't know us, Nicholas had been in
casts
since he was 8 months old and is now 26 months old. He has a very
rigid curve and rib hump so everytime his cast comes off his back
goes back to 50 degrees in 24 hours. We live in California and have
been traveling to Shriners in Utah for casting all this time.
Casting has been a great way to maintain him, I am sure we would be
100 degrees plus by now bevause his RVAD has always been aroung 45.
He did get the Miss Mehta cast in May from her and it still didn't
help his back. It was time to look elsewhere for us. Oh, also
Nicholas has Idiopathic Scoliosis not Congenital. They think it
could be caused from inutero positioning with a genetic link since 2
of my brothers had it mildly and never had to even wear a brace,
they both self resolved.
I have been so out of the loop I need to go back and start reading
posts on your group Celia.
Anyways, just wanted to let everyone know about Nicholas.
Crista
The membership on this group goes up and down regularly. For some
people it is just not for them. However if anyone has a comment,
suggestion or critism please let me know. Just send me a personal
note, etc.
Just my comment for the day.
Paul
I found the following passage in the Weinstein article:
"Mehta also created a classification based on the relation of the
head and the neck of the ribs to the vertebral body at the apex of
the scoliosis. If the convex rib does not overlap the vertebral body
on the anteroposterior radiograph, it is classified as phase I. As
the curve increases, the head of the rib on the convex side overlaps
the vertebral body. This is termed phase II, which was associated
with nonresolving curves.
In Mehta's study of 138 cases of infantile idiopathic scoliosis, 80
curves were in phase I. Of these, 46 resolved, and 40 progressed;
the RVAD was smaller in the resolving curves. If the apical rib head
was in phase II, progression was certain and calculation of the RVAD
was not necessary."
Celia
Deshea,
Deirdre started junior kindergarten last year and this year she will be
going into senior. Lucky for me, her classes are only half days !
Next year she will go into grade one and of course I'm worried. Just
to add another worry to my long list ! :) It's physically IMPOSSIBLE
for her to wipe after a bowel movement, but I think the same will hold
true when she's in a brace ???? The few times that she did have to go
potty in class, she did the best she could - I basically had to bathe
her and change her underwear when she got home. As for sleep time -
I'm happy to say that I only had one accident throughout all of this
and that's because she had a huge mug of hot chocolate just before
bedtime. As a rule I don't give her any liquids within two hours of
bedtime.
Celia
Hi Dianne,
I believe it is a choice each individual member makes...if they want
to "hide" their address then they choose it as a membership choice and
you won't see it. If you want someone in particulars address, send
them a private email, the form does look similar to this format for
the board but it is a private email. Email me and I will prove it if
you don't believe it! Then if they write back you will then have their
address! Slow but effective. Cam
Someone asked about syptoms of allergy to stainless steel. First of all it
isn't stainless steel, it's nickel that causes the allergy. Lots of people
have a slight nickel allergy - that's why so many of us can't wear cheap
earrings. When they tested me for the nickel allergy they taped a 1 franc
coin to the inside of my wrist and left it there for 24 hours. When they
took it off, there were no red marks or signs of any sort. At the "second
reading", done 24 hours later, there was a yucky red round blot where the
coin had been with little pustles. It was extremely itchy. That was when
they decided on the titanium.
I had had stainless steel instrumentation for years and didn't think I had
allergy problems. However, over those years - after the Harrington and a CD
operation, I had developed a "condition" called palindromic rheumatism - a
low grade fever, swollen and reddend joints, especially in the fingers,
wrists and ankles, and general malaise. For this condition I took an
antimalarial six days a week, called Chlorochina in Italian (that may
translate as Chloroquinine). It helped, my fever went away, but the joins
would flare up sometimes anyway. Since the last op and the removal of the
stainless steel instrumentation I have stopped taking the chlorochina and
have had no return of any of those strange symptoms nor any fever. The only
thing I can liken my symptoms to are those of the women who had the breast
implants and then began getting those rheumatoid arthritis-like symptoms.
Tuirty-five percent of the cases of Palindromic rheumatism eventually
develop into rheumatoid arthritis. The rest of the cases just continue in
this strange pattern of swelling, some fever, etc. The Rheumatoid factor
tests and other lab tests are generally negative, although my complement
was low. The pain was so bad that sometimes I had to bind my wrists with
ace bandages in order to work at the computer, so it was more than just a
bother. Also it is no fun having a low grade fever for two years. (That's
how long it took them to figure it out).
Hope this helps.
Best,
Nancy from Italy
Hi....
There was some debate in the past week, about whether or not back
exercises were advisable after long fusion surgery. I apologize for not
remembering on which list(s) the debate occurred.
Anyway, I talked to Amy Selinger who is a PT with a lot of experience
with post-op scoliosis patients. She said that as far as she knew,
trying to build one's back muscles post-op was not a good idea. Also,
especially for those fused in the lumbar area, one wants to limit motion
in the vertebrae and discs below the fusion. Mostly she thinks that
back exercises would be of no benefit. She feels that abdominal
exercises are of far greater value.
And, an aside from me... I'd like to encourage everyone to be very
cautious about exercises. I've been surprised to learn how much
movement occurs in the spine when abdominal exercises are not performed
correctly.
Regards,
Linda
Hi guys,
I was flipping through the articles this morning and the ones that I
found the most useful to our situation are the following:
I) Infantile and Juvenile Scoliosis by Dobbs and Weinstein
II) The Part-time Milwaukee Brace Treatment of Juvenile
Idiopathic Scoliosis by Kahanovitz, Levine and Lardone
III) The Characteristics of Juvenile Idiopathic Scoliosis and
Results of its Treatment by Tolo and Gillespie
The article by Nash and Moe: A Study of Vertebral Rotation, I found
to be VERY technical and there is already an article in the FILES
section which describes their technique very well.
Hope this helps,
Celia
Suzie,
If it really IS menopause, you probably need to go on estrogen. You
really need to go to a GYN who specializes in infertility (whether
you want kids or not). There is often rapid bone loss with the onset
of menopause, especially that early. Does early menopause run in your
family?
Hugs,
Kathy
Well, I suppose these folks could have the old "bone fusions with body
casts" and therefore not have any hardware. Or do they still do this anymore?
Very tough on teens, though.
Nancy in the East Bay
okay, here's a question to throw out here. lucas has been potty
trained during the day for 6 months or more, but i still double
diaper him at night since i'm too nervous about accidents and getting
the cast wet. we had a home visit by lucas' preschool teacher last
week (this is the norm for this school). she asked about his habits
and asked if we could try to get him to wipe himself after a bowel
movement. we have always been helping him with this with toddler
wipes to make sure that he's clean. well, this past weekend, we did
really try and get him to wipe himself after a bm, and i don't think
that he can physically reach! for those with older kids in cast, is
this true for all of you? i think that i'm just going to have to ask
the teacher to do this for him. i didn't want him to "stand out" in
preschool, but i do believe that this is a physical limitation for
him. thanks for any advice.
deshea
Hi all,
I mentioned this before with no response, but I'm begging now.. HOW can
I figure out what a persons full email address is ? Even in
the "members" section the emai addresses cut off at the @whereever.com
and if I click on the "email" option, the only thing that comes up is a
form like the one I'm now typing on that, I assume, posts to the group
at large, and again, the full email address does not display. I have to
Sinceit is a relatively new medium for fusion hardware, what did those who
had allergies to stainless steel do prior to the usage of titanium? Wait
until the fusion was solid and then had the hardware removed?
what was the alternative hardware/treatment?
Also, I would like to know how the allergic reaction manifested itself and
how long did it take for the symptoms to appear post surgery. How was the
problem corrected?
C.P.
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Well, we just got back to the hotel and it was really sweet to see
all the well-wishes and responses about my foot woes. Thank you for
the insight.
The long and short of my visit is this...
Dr. LaGrone practically puppeted what Dr. Bridwell said. He would
remove enough instrumentation to make room for the new stuff, fuse
to the sacrum, go in from the front and put in cages and bone graft,
and he thinks he would be able to achieve enough lordosis with the
cages that an osteotomy wouldn't be necessary. It was weird to hear
the exact same thing from both. There was ONE notable difference.
Dr. LaG would want to do it all in one day.
I sensed a bit of healthy competition and mom said that he WANTS to
do the surgery. But, after talking through it, we decided that the
healthiest thing to do is stay on course with Dr. Bridwell and have
the surgery in STL. It is enticing to get it all over with at once,
but the strain of dealing with insurance and all the x-rays, tests,
etc. a new doc would require is more than I think I'm ready to deal
with. He is a very nice man and he definitely took time with us
(although we were there until almost 6 pm since we had to wait for
about TWO hours), but I am just as comfortable with Dr.
Bridwell...that's my two cents.
Overall, I am very happy that I came here and it is incredibly
reassuring to hear that they agree...although I would prefer that
they agreed I would just get better in a few weeks...
Thank you to all of you for just being out there and so positive and
encouraging and all that stuff!
Mom and I will head home tomorrow, but for tonight, we are going to
a restaurant that was highly recommended. We'll see.
kam
jennifer,
if you go to a fedex place, they should have a fedex envelope specifically for x-rays. i had gone to a place near gov center in boston, and they had a specific envelope for x-rays. i don't know if they have that on hand in the city just because the number of people sending x-rays or what, but you should ask you fedex place or even ask them to call a place in boston near a hospital, and they would be able to find out from a more knowledgeable person. good luck on that.
as for becoming obsessed over things, it's really only natural. by doing as much reading as you can, then you are at least arming yourself with the information that you need to make well-informed decisions regarding your child's care. especially in the beginning, this is a steep learning curve to understand the terminology regarding scoliosis. we're not orthopaedists!
i know in my marriage, i was the one doing most of the research on-line and discussing things with other parents, but i did try to inform my husband about all of the information that i was learning. he did probably think that i was becoming obsessed as well, but he allowed me the space to deal with lucas' diagnosis the only way that i knew i could -- research! later on, he was very happy that i did so that after bracing lucas for a year and not being happy with the results, we had other options to turn to. we all deal with things differently so hopefully both of you can give each other the support that is necessary to deal with jake's diagnosis whatever way you both need. -- only a little marriage advice =)
overall, i do really try to live my life the way that i think i would if lucas did not have scoliosis. i try not to treat him differently -- especially during tantrums and such. i don't want a spoiled brat on my hands later on to deal with. i especially think that when you are uncertain what direction you might be going, bracing versus casting, for example; you think about things more. once you settle into what treatment would be best for jake and your family, then you can just go forward and relax a little bit more.
talk to you soon,
deshea
SPONSORED LINKS
Scoliosis child Scoliosis Privy
Medical professional
Sharon,
I am with Cam all the way! Get all your thoughts in writing. Make a package of anything you can think of which shows how you were, how you are, anything. He sits there helpless, like, waiting for you to produce stuff which will show him what you are talking about.
Just my two cents' worth. Nobody asked.
Love,
Carole
Hi Kam~ I hope that you had a good go today! I've been thinking about you all day...I can't wait to hear the news! Suzie
Jennifer,
Yep, phase II is an indicator of progression. Are you sure you're
looking at the right thing ? :) No big deal about the poll. Maybe
someone else can help you with the x-rays, I have no experience.
Hugs,
Celia
Deshea,
I didn't realize that ! I don't want to create extra work for
anyone. :( I have copies of all the articles, I just thought we
could have it in the files section for other members. Since you
mentioned 1990 as the cutoff, the first article listed below is
REALLY GOOD in case that's the only one you could get your hands on.
If not, no big deal. :)
Celia
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]
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.
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Gang,
I need some help. I'm finally sending Jake's x-rays and MRI results
to another doc. (Dr. Sanders-to see if he agrees with diagnosis of
progressive and to see if Jake is a candidate for casting) How in the
world do I send x-rays? The FedEx envelope isn't large enough. Is
it possible to roll them up and put them in a tube? Or will this
distort/ruin them? I would appreciate input from anyone with
experience.
Also I've been doing a lot of reading in the files section. Am I
making too much of things? Jake's ribs overlap his vertebrae. I
understand this to mean he is in Phase 2? A definite indicator of
progressive infantile scoli. Did I understand this correctly?
I'm trying to take each day as it comes. My husband thinks I'm
becoming obsessed with Jake's diagnosis and am letting life slip
right by me. I will try to do better and concentrate on the now, but
it's hard. Jake's diagnosis IS always on the forefront of my mind.
Celia, I would love to vote in the new poll, but I am ignorant of the
vertebral numbers. I never asked, they never told.
Hope all is well with everyone.
Jennifer
Deshea
I forgot to add the following important article to the list, apparently
Nash and Moe are referred to frequently when orthos discuss rotation.
1: J Bone Joint Surg Am. 1969 Mar;51(2):223-9. Related Articles, Links
A study of vertebral rotation.
Nash CL Jr, Moe JH.
PMID: 5767315 [PubMed - indexed for MEDLINE]
celia,
since all of the articles that you requested are old, they are generally not available by pdf unless a librarian scans them in by hand. when i return to work tomorrow, i will see what my librarian can do. anything 1990 - is usually available to me without any assistance, just for future reference.
deshea
Hi Celia,
My son Harlee has a right sided thoracic scoliosis.
Judy Scherrenberg, Mum to Harlee Timms, Born 1/11/99 with LS CDH. Repaired at 5 days old. In NICU for 45 days. Umbilical hernia repair and repair of undecended testicle at 5 years old. TLSO brace fitted for progressive scoliosis March 2005. Inguinal hernia repair pending.
Once again, I'm up at a way too early. I'm making all these spelling
errors and hitting the "send" button too soon. Sorry guys !
Celia
Keep in mind too that some people, like me, are allergic to stainless
steel. This titanium was the only choice.
Best,
Nancy from Italy
Hi Theresa,
It sounds like you had a somewhat encouraging checkup. I am wondering
what I will find on my next visit. I know our situations are not
exactly the same..but I have a similar frustration with the fact that
on the one hand you can't do strength training or stretching after
surgery...and yet without it, it seems that other parts of the body
act up. I am anxious to get permission to slowly start working on the
hamstring area as they are so tight I feel like they are working
against me! I have never been so unstretched throughout my body!
Welcome back to your life and I hope you are not too overrun with news
media down there! Cam
kam - after surgery, my rt foot got worse too. I have that pins and needles feeling in my right foot all the time. It is numb, yet very sensitive to the touch. I feel like I have strings tied around my toes and they are being pulled up. I am having difficulty driving, for I can't really feel the pedals. My son said I need to get a pedal extender, so I can use my left foot. The numbness starts below my knee on the right side. I am sorry to hear that your foot is numb. Kathy G.
advokam <advokam@...
Hi all. I have a question. In the last week or so, I have noticed
more and more "sensations" on the top of my right foot...like if
something brushes the top of it or if I step funny, it feels kinda
tingly. I remember that after my surgery, the doctor would use one
of those little wheel things to test my nerves on my back and see if
I had feeling back around the incision and as it came back, I would
feel this feeling that I now have in my foot. It is kinda scary to
me because I wasn't expecting to "go downhill" quite so rapidly. Did
anyone else experience this? My right foot has not really ever
bothered me in the past, but I started noticing about 6 months ago
that sometimes when I shaved (yes, I shave my feet - blonde hairs
just glow when I get sun on my feet!) that I would feel that tingly
feeling. Now, it is almost constant. I wonder if it has to do with
progression (if that's the right word) of the stenosis at L5.
I guess my real question is whether others have noted a rapid
progression in symptoms at some point in time. Am I going to be
completely miserable by December? How I feel now makes a year ago
seem like a picnic. So, it would be nice to hear if anyone else had
a similar experience.
Of course, I will ask Dr. LaGrone tomorrow, but real-life
understanding first-hand opinions are more meaningful.
Thanks,
kam
[INLINE]
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From some final stronghold of sanity and evaluative clarity the rational Paul Sheldon had thought: She looks like a widow who just got fucked after a ten-year dry spell. Forgetting. Hezekiah said: "Nothing can do now, boss but she is in no danger. The in-house paper was identified, in Annie's neat hand, as The Gurney. ""After I found one of my bobby-pins in the lock? Just as he came to believe that nothing Hezekiah could say would convince M'Chibi to leave his hut, he heard sounds of movement. He took three dry, then crawled back to the door and lay down against it, blocking it with the weight of his body. NY Yankees
celia,
my sister was visiting from st. louis for the last week, and we
travelled down to nj to visit my other sister so i've been out of
touch and a little overwhelmed by all the posts. before i forget
though, i wanted to ask you if there was an article that you wanted
me to try and get as a pdf? let me know the details, and i'll do my
best.
deshea
Celia,
Taylor (11 1/2 months) has a left thoracic curve. Thanks as always for the information. You have been an invaluable resource to me.
Annie Nason
Hola Chica
I was so shocked to read what happened to you and I am so sorry that you had to go through that and that you are still dealing with it. I hope everything goes well for you in October and I will be thinking of you and sending positive thoughts your way.
All the best
Nutty
Thanks, Jeanette for your recommendation. I will contact
Dr. Crandall and let you know how it goes.
-Nirav.
Hi Suzie,
I have some ideas for car travel. First, of course, is to get out of the car about every hour (I stretch that to an hour and a half), even for just so long as to walk around the care four or five times. I use a seat cushion in the car. I've tried the ones with the tailbone area cut out but don't like them, so I use a regular memory foam cushion and push it forward enough so that my tailbone area hangs off the back of the cushion. Thus, no pressure on the spine. I also have an airline sized pillow that I put behind my neck area as I push the seat back toward a reclining position. Beware, though, that seat belts don't work so well when your seat is in a deeply reclining position. Or so I'm told. And I don't drive more than 5 hours per day. Good luck.
Bonnie
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Kam,
I have tingling etc. in my left arm if I hold up the phone to talk on
it. It becomes quite annoying. I also have a tingling, warm feeling
that comes and goes on the inside of my right ankle. This is fairly
new--last few months and if quite pronounced at times. I still have
an "odd" feeling around my scar, and that was 38 years ago. It still
seems somewhat numb.
Hang in there!
Kathy
Allow me to share some info that I gathered from my days working at a
bicycle store
Titanium is lighter than stainless steel. It is strong, but much more
ridgid than stainless steel, therefore it doesn't have much flex. Now don't
go jumping to the conclusion that that would be a better option for us scoli
patients. Here's why a doc has to look at each situation to determine the
best instrumentation to use:
Titanium is harder to shape, which the surgeon does in the O.R. so that the
patient has a natural lumbar curve, etc. Special tools are needed and, I
think, possibly heat to shape titanium.
Although, one might think having that much rigid strength is good, that's
not neccessarily the case. Titanium will break under stress when stainless
steel may not. In other words, scoli patients need a little flex. Also,
there is a shock absortion factor that is better with stainless steel that I
bet none of you have ever thought about. Anybody that has ridden a bike
with a stainless steel frame and then immediatley rode a comparable titanium
bike would be able to feel the difference.
As I understand, titanium has been used succesfully in very short fusions -
maybe a couple for vertebrae fused - but it doesn't seem to make sense for
longer fusions like those performed on scoli patients.
Find a doctor you can trust. (I'm not going to even touch the office staff
issues for the moment.) Let her/him make the decisions about
instumentation.
C.P.
Excision of hemivertebrae in the management of congenital scoliosis
involving the thoracic and thoracolumbar spine
Journal of Bone and Joint Surgery, May 2001 by Deviren, V, Berven,
S, Smith, J A, Emami, A, Et al
ABSTRACT
We present a study of ten consecutive patients who underwent excision
of thoracic or thoracolumbar hemivertebrae for either angular
deformity in the coronal plane, or both coronal and sagittal
deformity. Vertebral excision was carried out anteriorly alone in two
patients. Seven patients had undergone previous posterior spinal
fusion. Their mean age at surgery was 13.4 years (6 to 19). The mean
follow-up was 78.5 months (20 to 180). The results were evaluated by
radiological review of the preoperative, postoperative and most
recent follow-up films.
The mean preoperative coronal curve was 78.20 (30 to 115) and was
corrected to 33.9 (7 to 58) postoperatively, a mean correction of
59%. Preoperative coronal decompensation of 35 mm was improved to 11
mm postoperatively. Seven patients had significant coronal
decompensation preoperatively, which was corrected to a physiological
range postoperatively. There were no major complications and no
neurological damage.
We have shown that resection of thoracic and thoracolumbar
hemivertebrae can be performed safely, without undue risk of
neurological compromise, in experienced hands.
J Bone Joint Surg [Br] 2001;83-B:496-500.
The management of spinal deformity caused by a hemivertebra is
controversial. The progression of the deformity is unpredictable and
requires continuous evaluation. The location of the hemivertebra is
an important factor in predicting the need for surgical treatment.
When the lesion is in the lower thoracic or thoracolumbar region
surgical treatment may be required to prevent deterioration of the
curve.I The optimum method, however, for the management of a
hemivertebra at these levels has yet to be determined.
Excision of a hemivertebra is a well-established procedure, although
its use has been largely limited to the management of anomalies of
the lumbar and lumbosacral spine. In a classic description of the
aetiology of scoliosis, MacLennan' described the technique of
resection of a vertebral body through a posterior approach, followed
by immobilisation in a cast. He reported "surprisingly little"
correction, however, because of the rigidity of the retained
posterior elements. Von Lackum and Smith carried out a combined
anterior vertebrectomy and posterior fusion in the management of a
fixed lateral deformity, but concluded that the removal of thoracic
vertebral bodies was impractical because of the risk of haemorrhage
and shock. Wiles 11 reported progressive kyphosis in two patients
after excision of a lumbar hemivertebra. Subsequent discussion
revealed that follow-up of the earlier experience of Compete 12 and
of Von Lackum and Smith9 also demonstrated progressive kyphotic
deformity.
Leatherman and Dickson5 introduced the concept of a two-stage
correction using a closing wedge osteotomy with shortening of the
spinal column. Their results gave a mean correction of 43% at follow-
up, with a transient neurological deficit in two patients.5,6 Holte
et al 3 described hemivertebral excision and wedge resection in 37
patients with congenital scoliosis, but reported eight neurological
complications; six followed excision at LS or S1, one after excision
at T10 and one after excision at T9. Bradford and Boachie-Adjei 2
reported on single-stage, lumbar and lumbosacral hemivertebral
excision in seven patients, aged from one to ten years, with a mean
correction of 64% and no neurological compromise.
In spite of these reports showing effective correction with limited
neurological hazard after excision of hemivertebrae, the technique
has usually been used for lumbar and lumbosacral deformities only.
Excision of a hemivertebra above the lumbosacral junction is
controversial as deformity at this level has less impact on spinal
balance, and the risk of neurological damage has been thought to be
very high, especially above the level of the conus medullaris.
Hemivertebral excision has a potential advantage over alternative
techniques for the surgical management of congenital scoliosis by
addressing the deformity directly and allowing immediate, better
controlled and more predictable correction, particularly for
coronally decompensated patients.4,6,7,10
Our aim is to review the outcome of hemivertebral excision in the
treatment of congenital hermivertebrea of the thoracic and
thoracolumbar spine.
Patients and Methods
From our database we identified all patients with the diagnosis of
congenital spinal deformity and the records of patients who had had
thoracic or thoracolumbar hemivertebral excision were reviewed. There
were ten patients with a follow-up of at least two years. In seven,
the procedure had been carried out for coronal deformity, and in
three for both coronal and sagittal malalignment. The excision had
been performed anteriorly in two patients, and through a combined
approach in the remainder. Before this operation, seven patients had
had posterior spinal fusion (Fig. 1). Operative technique. Either a
standard thoracic or retroperitoneal thoracoabdominal approach was
used according to the level of the hemivertebra. Once the level had
been exposed, the discs above and below were excised as far back as
the posterior longitudinal ligament. The hemivertebra was then
removed with a rongeur and curette, including the base of the
existing single pedicle on the convex side. If the hemivertebra was
located at the thoracic level, the head of the rib which articulated
with the hemivertebra was removed to facilitate exposure and
subsequent closure of the space remaining after hemivertebral
excision. The space was loosely packed with autologous bone graft.
As a rule the remainder of the hemivertebra was excised posteriorly
including the rest of the pedicle. Correction and stabilisation were
carried out posteriorly using segmental instrumentation. The extent
of the fusion was based on the preoperative assessment of the
magnitude and location of the deformity, the rigidity of the curve
and the presence of decompensation.
Hemivertebral resection was carried out through an isolated anterior
approach in two patients (one at Ll and the other at T12). In these
cases, in addition to excision of the vertebral body, the convex
pedicle, transverse process and other bone remnants were removed
entirely through the anterior approach. The posterior elements were
not developed substantially; these patients had had no previous
surgery to the spine. They were stabilised by anterior
instrumentation and fusion only.
The effectiveness of the surgery was evaluated by a review of the
radiographs taken before and after operation and at the most recent
follow-up. Absolute measurements were made of the coronal and
sagittal curves, trunk shift, coronal decompensation, thoracic
kyphosis, and lumbar lordosis. Coronal and sagittal curves were
measured according to Cobb's method.14 Trunk shift was determined by
relating the central point of the trunk to the central point of the
pelvis. Coronal decompensation was defined as displacement of the T1
vertebra by more than 25 nun from the central line of the sacrum.
Sagittal decompensation was defined as displacement of the Ti
vertebra by more than 40 mm from the posterior superior sacral
margin.
In addition to the radiological analysis, inpatient and outpatient
records were reviewed. Data were recorded regarding the age at the
time of surgery, the levels fused, the level of the hemivertebra, the
type and level of instrumentation, estimated blood loss,
complications and any additional surgery.
Results
The mean age of the ten patients at the time of surgery was 13 years
(6 to 19). The mean follow-up was for 78 months (24 to 180). Seven
patients had had previous surgery; five a posterior spinal fusion
without instrumentation, one an anterior and posterior spinal fusion,
and one a posterior fusion with Harrington fixation. Four patients
had excision of two hemivertebrae each (Table I).
The mean size of the coronal curve was 78deg (36 to 115) before
operation, which improved to 34deg (7 to 74) at follow-up, with a
mean correction of 59% (45 to 85). The mean compensatory curve was
28deg preoperatively and 11deg at follow-up, giving a correction of
61%. Balance in the coronal plane improved from a mean offset of 36
mm (0 to 60) before operation to 11 mm (0 to 40) at follow-up. The
mean trunk shift was 35 mm before operation and 9 mm at follow-up.
Balance in both planes improved for all patients except one, in whom
there was imbalance in both planes in the cervicothoracic region
after operation (Table II). This patient underwent further surgery
four years later for progressive deformity.
The mean thoracic kyphosis was 35deg (-25 to 76) before and 42deg (18
to 64) after operation. The mean lumbar lordosis was 65deg (28 to 98)
before operation and 52deg (28 to 70) at follow-up. Three patients
with congenital thoracolumbar kyphosis improved after surgery. The
measurements of 80deg, 50deg and 32deg before operation, improved to
32deg, 18deg and 120, after. Alignment in the sagittal plane was
either maintained or improved in all patients.
Two patients required additional surgery during followup. One had
transpedicular subtraction osteotomy for a fixed cervicothoracic
congenital deformity and the other removal of the internal fixation
because of pain. There were no postoperative neurological
complications and no breakages of implants. All patients achieved
solid fusion at the latest follow-up.
Discussion
When congenital deformity of the spine causes an imbalance of growth,
progression of the deformity is rapid and relentless.1,15-19 The
development of a curve is variable depending on the location of the
deformity and the growth potential of the bony elements involved.
Thoracic and thoracolumbar deformities often have a poor prognosis
and usually require surgical intervention. 2,20 There are four basic
procedures available to the surgeon treating congenital scoliosis;
posterior fusion, combined anterior and posterior fusion, convex
growth arrest (anterior and posterior hemiepiphysiodesis), and
excision of the hemivertebra. 2,3,15,19,21-25
Posterior spinal fusion alone has considerable limitations. The goal
of posterior surgery is stabilisation in order to prevent further
progression rather than correction of the curve. Winter 26 reported
290 patients with congenital scoliosis who had posterior fusion with
or without Harrington instrumentation. Correction was limited to 28%
in those fused without instrumentation and to 36% in those in whom
Harrington implants were used. Instrumented distraction across the
concavity was associated with the risk of paraplegia. Deformation of
the fusion mass because of continued anterior growth, was observed in
40 patients (14%). Hall et al22 reported a mean correction of the
curve of 12% in posterior fusions without instrumentation, improving
to 35% with Harrington instrumentation. Slabaugh et alg compared
hemivertebral excision with posterior fusion in situ for lumbosacral
hemivertebrae and found better correction of the curve in the group
who had excision.
Combined anterior and posterior fusion offers several advantages over
posterior fusion. More substantial correction can be achieved by
discectomies, the potential for a crankshaft effect is eliminated,
and the occurrence of pseudarthrosis is reduced. Since this technique
does not address the wedge deformity directly, the entire measured
curve must be encompassed in the fusion, including normal segments.
Convex epiphysiodesis of the spine was designed to arrest convex
growth while allowing concave growth to correct the deformity. The
surgery must take place when sufficient spinal growth remains,
usually in children less than five years of age.15,21,23,27,28
Concave growth is, however, unpredictable and kyphosis in the region
of the anomaly may develop as growth of the posterior elements
continues. It is necessary to perform convex hemiepiphysiodesis
across the entire measured curve, often including a normal segment
above and below, in order to achieve a satisfactory improvement. The
results of this procedure have been variable and unpredictable.
Roaf29 described unilateral hemiepiphysiodesis in patients with
spinal deformity, and proposed that further growth would correct the
deformity. He achieved correction of more than 200 in 23% of
patients, but less than 10 in 40%. Andrew and Piggott 20 demonstrated
mixed early results in a series of 13 patients treated by convex
epiphysiodesis. Long-term follow-up of 33 patients from the same
centre showed correction of the curve in 23 (70%), with better
results in patients treated at a young age.27 Winter and Moe 24
reported early results in ten children treated by convex
hemiepiphysiodesis, with only two demonstrating significant
correction at follow-up at two years. Long-term follow-up of a
similar group of 13 patients showed arrest of the curve in seven
patients (54%) and improvement of more than 5 in five (38%).28
In contrast to the above techniques, excision of the hemivertebra
addresses the deformity directly and allows reliable correction
immediately. It is well established in the management of lumbosacral
curves, which are responsible for pelvic obliquity, apparent leg-
length discrepancy, and truncal listing. Correction cannot be
achieved reliably by other methods. In the thoracic and thoracolumbar
spine, less imbalance is produced but even so, there is often
considerable cosmetic deformity and continued spinal growth may cause
the curves to progress. Hemivertebral excision allows more complete
correction of the curve in these patients, producing improved
cosmetic results and restoration of balance. Our mean rate of
correction of the major curve in these ten patients was 59%, similar
to previously reported results for hemivertebral excision, and much
superior to the radiological results reported for hemiepiphysiodesis,
anterior and posterior fusion, and posterior fusion alone.
Some authors have questioned the safety of such a procedure in the
thoracic and thoracolumbar spine because of the risk of kyphosis and
neurological deficit above the conus. 16 Our results suggest that
hemivertebral excision involving the thoracic and thoracolumbar spine
is not associated with an increased risk of kyphosis or neurological
complications. In ten consecutive cases of hemivertebral excision did
not encounter permanent neurological deficit or progressive kyphosis.
Based on our experience, the correction and balancing of congenital
thoracic or thoracolumbar curves are more effectively achieved by
resection of the hemivertebra than by alternative treatments for
patients with significant, rigid curves.
Hi Linda
It is only to find someone with specific experience in the kind of surgery I
had. (I'm not unhappy with my surgery and am not planning to have more, but
so far the drs that I've seen around here, couldn't answer my questions
about *my* back) I believe if I see someone with experience in this field,
they would know what would be normal for this kind of patient at a specific
time post op etc etc. I didn't mean to imply that that is what defines a
good surgeon. I was trying to say you can save time and money by being
specific on the phone when you make an appointment. I can't recall whether I
mentioned it, but I have an appointment with an osteoporosis specialist
coming up and I only found that out afterwards...I was looking for a
scoliosis surgeon...and obviously wasn't specific enough, or she didn't
listen or really had no clue.
Take care,
Sanette
Hi all. I have a question. In the last week or so, I have noticed
more and more "sensations" on the top of my right foot...like if
something brushes the top of it or if I step funny, it feels kinda
tingly. I remember that after my surgery, the doctor would use one
of those little wheel things to test my nerves on my back and see if
I had feeling back around the incision and as it came back, I would
feel this feeling that I now have in my foot. It is kinda scary to
me because I wasn't expecting to "go downhill" quite so rapidly. Did
anyone else experience this? My right foot has not really ever
bothered me in the past, but I started noticing about 6 months ago
that sometimes when I shaved (yes, I shave my feet - blonde hairs
just glow when I get sun on my feet!) that I would feel that tingly
feeling. Now, it is almost constant. I wonder if it has to do with
progression (if that's the right word) of the stenosis at L5.
I guess my real question is whether others have noted a rapid
progression in symptoms at some point in time. Am I going to be
completely miserable by December? How I feel now makes a year ago
seem like a picnic. So, it would be nice to hear if anyone else had
a similar experience.
Of course, I will ask Dr. LaGrone tomorrow, but real-life
understanding first-hand opinions are more meaningful.
Thanks,
kam
I just realized I didn't answer your question on casting ! That's
something you might want to discuss with the new ortho. I've read that
some congenital curves respond well to bracing/casting, but usually
these are curves that are long (i.e, involve many vertebrae in the
actual curve) and are flexible. Bracing/casting congenital curves is
NOT unheard of - if something like this will buy you time before
surgery, then go for it ! Since your daughter's curve is in the lumbar
area, I don't think that it's affecting her ribs so the argument of
chest wall deformities - that many doctors like to put forward - will
not be used.
Celia
Cam, that's another huge question for me; how much damage am I doing to my
knees, and will surgery allow them to heal?
I'd better start writing these questions down. Oct. 6 with Dr. Rand will be
here before I know it!
Sharon
Celia, I was wondering, I noticed your list of doctors that do
casting. Is casting a good thing or not? My daughter is going in to
have surgery in the fall, and Dr. Hedden @ HFSC is her surgeon. I
think i had seen somewhere that this was the doctor your family was
seeing, if so I was wondering what your input is on him? Have any of
your children had surgery by this particular doctor? Also, can they
brace instead of casting after surgery? My daughter has lower lumber
scoliosis caused by a hemivertibrae.
Thanks for listening,
Karey
Nancy,
I am somewhat new to the list, live in Marin, and would love to meet
you. Maybe before surgery? or even visit you at the hospital if you
would even want visitors. I've been to see Dr. Hu last year (didn't care
too much for her, however, it was pointed out to me "Don't shoot the
messenger"). I guess recently there was a scoliosis meeting that I
must have missed...
Hang in there.
Deirdre
Dear Terry
Hang in there, girl! I know it's tough finding the right doctor but I
believe they're out there. We just need to look for them....
I'm also playing the shuffling game here, trying to find someone to follow
me up here and give me some answers after we moved last July. Have seen two
ortho's and one neurosurgeon. Another two ortho appointments lined up and
seeing another neurosurgeon on Monday. I'm also getting tired of this, but
somehow just find the strength to go on. With every doc I see, I learn how
to ask what. My PCP also suggested I phone first and ask to speak to the
nurse and ask questions to her over the phone, in stead of waisting my money
like this. He didn't refer me to someone specific, but referred me to "back
institutes" in the area and encouraged me to do my own research about the
specific doctors at the institutes. There are two good ones in the area, the
thing is to find the right doctor there. I've already ruled out some drs
that way (over the phone and from what I've read on the internet- eg I had
an appointment with an osteoporosis specialist- still have to cancel that
one- can you believe it? I tell them I've got scoliosis, and I read on the
internet that the specific dr is an osteoporosis specialist- whatever.....).
In my case, now I ask how many adult scoliosis patients this dr sees, how
many adult scoliosis surgeries he does. Does he have experience with pedicle
screws and titanium instrumentation, etc etc. (I think it was an
"appointment girl" of an SRS SPECIALIST who asked me if scoliosis is in
your back....uhmmm yes, was my answer......haven't cancelled that one, am
still considering to phone the nurse and hope that it wasn't the nurse that
I spoke to...) I nearly kissed another nurse over the phone when she said
today that the dr "specializes in scoliosis surgery only". I don't want one
that does knees and hips, the whole works, you know?
I feel part of feeling better is to know what's wrong with you....
Anyway, I think the way to do it, is to find a good ortho doc who can send
you to a neurosurgeon whom he (the ortho) knows is also experienced with
scoliosis patients. Long story, but as you say, thanks for the list....
Take care, let me know how you're doing
Sanette
Nirav...
With only a 15 degree scoliosis, the patient may not get much attention
from a specialist. Unless there is something else wrong, the only
advisable treatment would be observation. If the scoliosis is not
structural, treatments such as physical therapy might be helpful.
Regards,
Linda
Can anyone refer a SCOLIOSIS specialist in this area? If someone
has found a good orthopedic surgeon in the Phoenix are, that
would be fine as well.
This is for a patient (age 27) with 15 degrees of scoliosis. The patient
exerts uneven pressure during normal gait with 10 lb. more on the right feet
than the left generating noticeable limp.
Thanks in advance.
Regards,
Nirav.
______
For help on using this list (especially unsubscribing), send a message
to "scoliosis-medical-request@..." with one line of text: "help".
Hey Gals,
I got a hold of the two articles mentioned previously:
The characteristics of juvenile idiopathic scoliosis and results of its
treatment.
&
The part-time Milwaukee brace treatment of juvenile idiopathic
scoliosis. Long-term follow-up.
Very interesting articles ! If Deshea can't get a hold of them in pdf
format, I highly recommend that you try to get a copy for yourselves.
I don't have a scanner, otherwise I would post it to the group :(
In a nutshell, persistent vertebral half wedging on the concave side of
the curve, high RVAD (20 degrees in one article and 10 degrees in the
other !) and large cobb angle (average 45 degrees) coincided with poor
prognosis for part-time bracing. Large increase in curves were
reported at the age of 11 and 12 coinciding with growth spurt. One case
looked VERY good, the girl was 11 years 5 months with a 20 degree
curve - the CRAZY doctor then recommends that she discontinue brace
wear for a period of six months and during that period her curve
progressed 20 degrees !!!! Renewed bracing failed to stop the
progression and she ended up with spinal fusion !!! Which goes to
show, ALWAYS QUESTION AUTHORITY.
Celia
benadryl works wonders if you get 8 hrs off sleep less than than can cause a groggy am wake up
Christine
Celia Vogel <celia_vogel@...
Hey gang,
Can stress cause insomnia ? I haven't been getting any sleep lately :(
Maybe it's the stress of losing our doctor ?
Celia
Hello everyone,
At this moment I don't know what I would do if I didn't have
you all to talk to. I went to my neurosurgeon today and guess
what!! I get to play doctor shuffle again. She wants to send me to
a spine specialist now. She raised my neurontin to 900mil 3 times a
day, said she can't do anything for me, and did a 360 on me about the
brace. When she told me to get the brace she said to wear it all the
time except when sleeping. She said that I should only stand or lay
down. Today she said that I should have been wearing it only when up
and around. She had said that the brace was ment to avoid surgery,
now she said that it was supposed to somehow tell her if it would
help. When I mentioned that I have been researching flatback and its
causes and possible solutions she became almost angry. She said that
most of the stuff I have ared about online is junk. Most of what is
on line never makes it into professional journals etc. etc. I really
hate playing this game and part of me wants to just say F--- it and
go back to work. But the other half is afraid that the intense pain
will return and I will not be able to teach my kids anthing. I'm so
bummed I just dont know what to do. Oh yeah, what does everyone
sleep on. She told me to get rid of my waterbed. She actually told
my husband to let me sleep on the floor. My waterbed has been the
only thing I could sleep on for the last 10 years. But, tomorrow we
will drain the waterbed and put the new spare bed in the master
bedroom.
Take care,
Terry
Nancy,
I wrote you a message and then deleted it because I accidentally
directed it to "Nan," taking that from your e-mail, instead of Nancy
and we have another Nan here! Sorry about that. Anyway, I just wanted
to say I was concerned about you, have thought about you often and
you are in my prayers.
I sincerely hope that this surgery with Farcy works. You were brave
to have taken the risk; it is wrong you had to pay such a high price.
Hugs,
Kathy
Does anyone know anything about one of these doctors?
Antonio Castellvi, M.D. (Tampa, Florida)
Davis, Clinton B, MD (St. Petersburg, Florida)
Neustadt, Jeffrey B, MD (Tampa, St Petersburg)
Thanks
Sanette
Kam - Best of luck with Dr. LaGrone tomorrow! He's wonderful.
Amarillo leaves much to be desired.....but I'm sure you'll find him
quite satisfactory. Can't wait to hear about it!
My best -
Mary
Dear Terry,
Years ago I had a shot - am honestly not sure if it was an
epidural - but it was a shot of cortisone and lidocaine or novacaine
straight into the area of my lumbar spine that was very irritated. I was
not warned about getting a headache. When I walked out of the room where
they did the procedure (they did it under xray to get the exact spot) I
could barely walk - had that shooting pain down my leg that you described.
It hurt like heck for a couple of days and I thought the whole thing had
been for naught, then slowly I began feeling better and it DID take care of
a good deal of my back and leg pain for several months. As I stated above
I'm not sure I had the same thing you did, but it sounds similar, and it
did work. So good luck. I hope you're already feeling better. Your family
are acting like jailors because they love you and are concerned about you,
but of course you know that. My husband and kids do the same and it's
frustrating, then I remember how much they care.
All the best,
Nancy from Italy
Had my X-rays and appt. today with Dr. Hu. The good news is the pin hasn't
moved any further (as seen in the X-rays.)
We discussed my second opinion. She said she really thinks because I was
bent over so soon after surgery that something went wrong with the
hardware. She also said she has an alternate plan if they get in there and
the hardware is o.k. Something about adjusting the rods so the correction
was greater, so I would be more upright.
She also said she would call me if there were any cancellations and move my
surgery up earlier.
The surgery should take 4-5 hours, and I should be in the hospital 5-7
days. She also said it wouldn't be nearly as hard on me as the other surgery.
Soooo, guess that's what I'll do.
Wish me luck.
Nancy in the East Bay
NB
Hey gang,
Can stress cause insomnia ? I haven't been getting any sleep lately :(
Maybe it's the stress of losing our doctor ?
Celia
Hi It's me again. I'm pretty sore now and I was wondering if anyone
else who had an epidural had pain afterward. I know I wasn't
supposed to get up but they said I could get a headache if I did. No
headache but my sacroilliac joint and leg have a specific pain down
my leg. I could almost draw a line down my leg where it hurts. Has
anyone else had this happen to them? It certainly is a new one on
me.
Take care,
Terry
Hi Jeanette
I'm glad everything went well. My neighbor had it done and she
said it is not that bad. Heck, with all you have been through that
must have been nothing.I had my epicural today and he actually got it
in. No change yet so keep your fingers crossed!!! I am supposed to
be in bed and my daughter and husband are acting like jailers.
Bye for now,
Terry
Christine,
It was really great talking to you too ! :) There's an article on
Katharina Schroth in the "FILES" section, it basically has to do with
physiotherapy. There is also a link to the SpineCor brace in
the "LINKS" section. The other day when you mentioned the straps on
Kalibus brace, it reminded me of the SpineCor brace.
Celia
Christine,
I think the RVAD has to do with whether the ribs are symmetrical or
not - just a layman's guess.
Celia
Reminder Reminder from the Calendar of Flatback_Revised
Kam's appt. with Dr. LaGrone
Thursday September 1, 2005
3:30 pm - 4:30 pm
This event does not repeat.
Event Location: Amarillo, TX
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Well, I just got a Fed Ex letter from my company. If I don't report for
work onsite 7 days from March 16, they will terminate me.
Guess I'll have to file an EEOC claim, and live off disbility for now until
I'm well in June. Then it's off to the job search for me.
:-)
Anybody know a good Disbility attorney in the San Francisco, CA area?
The good new is, my house won't be blackouted in the power crises. We live
near a fire station, and aren't subjected to the block outages that others
have endured. Saw a frightening thing on the news--at the mall where my mom
shops in San Francisco, the power suddenly went off, and they had to carry
some of the elderly folks who had walkers down the escalator. Some were
trapped in the stores because when the power goes off, the security doors
close automatically. Luckily my mom was at home at the time, and she's
also near a firestation, so she won't be blackout either.
Wish Jerry Brown had been re-elected govenor--he put up those windmills and
instituted a lot of solar power/wind development. Those are all helping but
our reliance on those dead dinosaurs is still too much.
:-)
Nancy in the East Bay
NB
Hi!
I'll just give a quickie cliff-note update because my story is
unfortunately way too long.
In a nutshell, Last November I had a total spinal reconstruction
with stainless steel rods done by Dr.Farcy. But he left L5-S1 free
so that his friend Dr. Bitan could experiment with the new Charite
disc a month later. (just newly FDA approved for a single
application not in conjunction with any fusions--I had 19 fusions
above)
The disc failed miserably with fear that it might slip into my
spinal canal because it couldn't support the 19 fusions above.
It was then removed a week later by Dr. Bitan who finished the
fusion to my sacrum and pins into my pelvis. He was out of his
realm and really screwed me up. He didn't know what he was doing.
He tipped my pelvis so far that my tailbone now sticks out at
almost a 90 degree angle and I now have way too much lordosis.
Plus he bent the rods within my body and disrupted the new fusions
that Farcy had just done. Those fusions aren't healing. Plus he used
all these tiny metal clips to pinch off the blood vessels that now
have caused a lot of scar tissue. And he put a cage way to close to
my spinal canal- so close that the problem can't be fixed. Dr.
Boachie and Dr. Farcy both said it would be way to risky to try to
correct the problem at the source because that cage could slip into
the spinal canal.
I have alot of nerve damage down my left leg and foot that still
burns like crazy, and have severe pain in my lower back and pelvis.
When I stand with my hips level my upper body tips way back, and
when I stand with my upper body level, my butt sticks way out. I tip
back 22 degrees. Extremely uncomfortable. I can't walk without pain
and need pillows to sit and lots of foam to lie down. Clothing
doesn't hang right, and I'm miserable. (nothing like complaining! I
never really do, but it sure feels good!)
So, I've been living on a lot of pain killers and working on
getting some strength back so that I can go back in for another
surgery.
I saw Dr. Boachie again who planned on a 3-step surgery to remove
all the rods, then go in through the front to cut out bone wedges
from 4 vertabrae above the problem spot to bring my upper body
forward, then again through the back to cut more wedges and to
replace all the hardware. Kind of a "false fix" since the problem
area can't be disrupted. But nonetheless a solution to bring me
into a more comfortable posture. I scheduled surgery back in April,
but had to cancel because I was still very weak.
In the meantime I went back to Dr. Farcy for a post-op visit and to
discuss his opinion.
Dr. Farcy and his team came up with a similar solution as Boachie,
but feel that they can achieve correction at just one level by
cutting wedges from both front and back and removing only a segment
of the rods. Also a 3-step surgery.
After much discussion with my husband and both doctors, I have
decided to go with Dr.Farcy. My next surgery is October 19th. I
dread the surgery, but look forward to a more comfortable posture.
Nancy from Long Island
--- In Scoliosis-Medical@y..., NB <wrdtech@i...
Nancy
I looked at your pictures in the files and your brace is like mine
except that mine does not go over my shoulders. I have the leg
extention and your right it does remind me of being in my cast. But
then I couldn't take a shower or use the bathroom. It really isn't
as bad as it was when I first started wearing it. My doctor said
it's all in the "mind set", like she knows!!I've been in mine for 2
weeks and if I am still sane you will be too. Think positive. I'm
here everyday so if you want to talk just drop me a note. I'll
respond fast OK. Hang in there.
Terry
What is this ???
Also Celia do you have any good info about the spine cor brace i could read
Thanks
PS nice to talk with you the other day...
Christine
Celia Vogel <celia_vogel@...
Hey gang,
I found out from a reliable source that there is a clinic at the
University of Wisconsin in Stevens Point where they are beginning to
treat adult scoli patients employing the Schroth method and they're
having very good results. Maybe this is a new trend here in North
America ? One can only hope :)
Celia
Maybe he did not get the message they get crazy in the hospital
why don't you see if he will let you email him questions??
some of the doctors are doing that now and it cuts down the phone messages.
just a thought
I would keep calling till he calls you back...
Christine
jviv314 <jviv314@...
Gang,
Dr. H did not give me Jake's RVAD. I saw it written on the x-ray at
the apex (right word?) of Jake's largest curve when we were there in
early July. I thought then that it was a 16. My husband saw said x-
ray this week @ Children's and we agreed that the number written there
is a 12! Isn't this supposed to be good?
When we were at the hospital picking up Jake's brace this week, I had a
list of questions for doc. When it was time to see him, we saw him in
passing in the hallway! He breezed right by us and VERY briefly look
at the brace. I was so disappointed that he didn't give us the chance
to sit down with him. One of the questions I had for him was - based
on what info. did you conclude that jake's scoli is progressive? I'm
dying of curiosity and cannot wait until our next appt Sept. 8. By the
way, I called him 2 weeks ago with a question and he never called
back! I feel like we're just a number.
Disgusted and still scared,
Jennifer
Suzy,
Two quick suggestions. First of all, do NOT try to drive more than 5
or 6 hours a day. AND about every hour or two at the MOST get out and
walk and stretch. I have not had revision surgery, but that is the
best I can do. Also would some sort of pillow or cushion help? And I
am hoping someone else will actually be doing the driving? You will
just be riding?
Regarding menopause, the best thing about that for me was finally
getting rid of migraine headaches that have bothered me since I was a
teen.
With the cost of gasoline and motels are you SURE flying isn't about
the same cost?
Kathy
Txbluebelle
I think that is the degree of the rotation they measured I am not sure if there is a true difference in the RV AD and the rotation but it is never a clear answer
The RVAD is the RIB VERTEBRAL ANGLE DIFFERENCE it is the difference in the ribs if angle from the vertebrae it is attached to. There are articles that deshea has or at the infantilescoliosis.org site that are really descriptive and goes into great detail. it is s a term that Miss min Metha describes in idiopathic infantile scoliosis. Your child is congenital correct?
Maybe that is why they never brought it up. Also I don't think they they use it at children's unless you ask for it
They use it as a marker to see if the curve is "progressive" or not it is about 80 percent correct and RVAD over 20 usu sally are progressive and under 20 are not but 20 percent can be .....
it is a interesting article you should read it
Christine
btpalmer2001 <family@...
What is a RVAD? It's a term I haven't heard before and it's not in
the reports that Dr. S has sent to us. In those he refers to a 7deg
right thoracic trunk rotation measured with the scoliometer. Is that
reading from her exam somehow comparable to an RVAD?
Tanya
Nancy...
Kyphosis is the natural curve of the upper back. When people talk about
"having" kyphosis, they're usually referring to an abnormal amount of
kyphosis.
Also, I'd like to encourage everyone to use the online medical
dictionary at: http://www.graylab.ac.uk/omd/ for easy answers to this
type of question.
Regards,
Linda
For some reason, some folks on the list didn't see this, and I didn't get
much of a response, so I'm reposting it.
Also, can someone please let me know what "kyphosis" means? Thanks!
Nancy in the East Bay
Dr. Slabaugh said that he thought it wasn't proven (from CT scans and
X-rays) that the screw was going in and out of the bone. He did not think
that stabilizing it by fusing down to the sacrum would fix the problem. He
said the X-rays showed I already had hardware screwed into the
sacrum/pelvis, so my mobility if they fused further would be the same
(that's the only good news.) He thought that the reason I am bending
forward is due to the extreme pain that is cause by the hardware that is
screwed into the sacrum/pelvis. He said that type of procedure should be
"banned", because it irritates the sacrum and vertibrae down there very
often. Has anyone else had this experience or been told this?
In his opinion, he would not operate, but he would either put me in a body
cast from breast bone down the leg, or a brace like I have with the leg
extension, but in both cases, I could not bend, or even sit in a chair for
3 months!
Obviously, as I am already stir crazy from being mostly housebound since
the end of December, I couldn't do that. I have nobody who could take care
of me, and couldn't afford that type of care.
My appointment with Dr. Hu is for this week (Wed.), so he advised me to
share my concerns with her (Dr. Slabaugh knows her) and see what she says.
His other concerns were about the fusions in the middle, where they fused
the disc (where I had degenerative disc disease), he said I had "kyphosis",
I think he said.
He was concerned that the fusions weren't straight, and that the bone
fusions would have to be broken and fixed later on.
I've forgotten what this term means, can someone enlighten me?
Thanks!
Nancy in the East Bay<<
Hi everyone~
I just wanted to check in and let you know that I will be heading up to NJ next week for my 6 month check up. I am quite nervous about the trip...I am going to have to drive and the trip will take about 11 hours. I don't have alot of endurance still and am quite uncomfortable sitting for long peroids of time...who am I kidding short peroids of time beat the tar out of me as well! I can't afford to fly so this is really my only option at this point. Does anyone have any suggestions? The bulk of my pain is in the tailbone area.
I have been quite down the past few days as I have learned that I am going through menopause. Couple that with everything else and I guess that I've been a bit of a bummer.
Anyway, if anyone has any ideas for my jouney I would be forever grateful! Thanks!
Suzie
Dear Nancy:
What exactly does Dr. Slaybaugh expect to achieve by putting you in a body
cast for 3 months?
C.P.
Theresa,
I'm glad you are doing so well. Who did your surgery again and where?
I'm sorry I forgot! Take your time healing. Maybe when it gets a bit
less hectic us Houstonians can do lunch.
My husband has family in Mississippi on the coast. I don't want to
say exactly where. We have not heard from them, but are hoping all is
okay.
Kathy
Txbluebelle
Woo-hoo :-) I love how adaptable kids are!
Tanya
Hi...
St. George's Hospital Medical School (London) is interested in finding
out experiences of pregnancy and childbirth for women with scoliosis,
and how scoliosis may have affected these experiences. They have a 7
page questionnaire that takes about 15-20 minutes to complete. If
anyone is interested in participating, they should contact:
Michael Page
Room 2.238
Department of Cardiological Sciences
St George's Hospital Medical School
Cranmer Terrace
London SW17 0RE England
Phone: 020 8725 5893
Email: m.page@...
Regards,
Linda
I have been to a physiatrist (pain management doctor); however, I was
wondering if anyone knows if there is a difference between a physiatrist and
a "pain clinic", or if they are basically one in the same. The physiatrist
has referred me to a psychiatrist who only treats people with issues dealing
with pain management, including cancer and AIDS patients.
Richard S.
Hi all, I haven't been on here for awhile since going up to
Conneticut. We got home on a Saturday and went shopping on and off
throughtout the week for items for our son's first apartment. He
came home the following Saturday from his summer job in Maine. We
moved him up to his college about 4 days later then I began work. My
kids and husband gave me a surprise 50th B'day party this past
Saturday! My dad was in from Florida, my older brother and his wife
from Atlanta, my younger brother and family from Dallas, my son from
school, and my daughter from Colo. Springs. I had no idea! Yesterday
I had my 3 month checkup. My xrays look good and my correction is
excellent considering how bad the curve was beforehand. The bad
thing is that my body is fighting and resisting the corrections. I
guess after being bent for a good 35 years it doesn't like it's new
position. The doctor wants to give me another 3 months to heal and
then after my 6 month checkup as long as everything looks good I'm
to start PT AGAIN! I just finished AGAIN! This time he said it would
be for extensive strength training therapy. He also said the pain
that I am having in my lower back seems like it is coming from the
hip graft area. He said that should slowly go away with time. I have
just gotten feeling back in the lower back in about the last 6
months. I guess that's why I'm feeling if more now than before. I
still have lots of muscle spasms on the right side of my body where
the thoracotomy was done. Right now, I'm to keep stretching and
walking, keep with the 15 lb. lifting restrictions, and the usual no
vaccumming or mopping type of things. I will try to get on the chat
tomorrow night. I really enjoyed the first one. I hope nobody was
affected by Katrina. The stories coming out of New Orlean, Biloxi,
and the Gulfport area are horrible! Here in Houston we have had
people from Louisiana just pulled off along the freeway with no
where to go. Listening to their stories really makes my pain seem
like such a minor thing with what they are going through. I hope
everyone here was safe. Theresa
Wow. I wrote my knee comment before reading the ones from you two. Goes
with the territory, I guess. :^(
Hey gang!
Just a fast note to let you know Jake started crawling/scooting/inching
around the house this morning in his brace. He IS figuring out how to
get around!!! I left him on the floor with his brother and cousin to
go to the restroom. When I came back, he was clear across the living
room floor! I'm so excited for him. Now he needs to learn how to get
up from his stomach. Not an easy feat I'm sure, but baby steps.....
Proud mama,
Jennifer
P.S. He does very well walking with his brace on - holding my hand of
course, but he really goes!
Mary...
It was truly a pleasure meeting you and MaryLou. You have an amazing
spirit, especially considering all you've been through. I hope that
if you decide to have the surgery, it will finally be your last.
Best of luck with your decision.
Regards,
Linda
Can anyone recommend a good Canadian Scoliosis Surgeon with experience in
revision surgery?
Thanks
Sanette
Yikes.
I hadn't heard of that. I'll be sure and tell all my friends with kids (and
friends who are kids.)
Sharon
Hi again,
Has anyone else had trouble having an epidural?? Has anyone had
problems with the caudal type. When I had my kids many years ago
they wouldn't even try.
Hi Dana,
I went to messages, then at the top it says previous, next.
After that it says first, last. I clicked on first and went back to
#1 or you could type in the number where it says search messages.
Hope this helps you. I have a much better attitude today as I slept
13 hours last night in my brace and on my sofa without any sleeping
pills. That's never happened before.
Terry
Mary,
This sounds like good news! At least it sounds like there is real
HOPE. Linda thanks so much for all you do and thank you for helping
Mary.
Kathy
Txbluebelle
Reminder Reminder from the Calendar of Flatback_Revised
Weekly Chat
Wednesday August 31, 2005
9:00 pm - 12:00 am
This event repeats every week.
Event Location: Flatback_Revised Chatroom
Notes:
Weekly chat just for fun, discussion is open unless otherwise noted. Look in the files section for an easy guide for getting into the chat.
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This alternative of staying in bed or wearing a body cast/brace is like
back to the future for me.
They had me do this in 1966, with my first bone fusion. I was put in a body
cast in the hospital, came home in an ambulance, and my mom or dad had to
stay with me for a month while I was in bed. They had to have neighbors
come in when she went shopping, because my parents were told if there were
a fire, I couldn't even crawl out, because I had been in bed so long!
I had to use a bedpan for 4 months--imagine how a 13 year old felt about
neighbors doing that duty!
So I know I couldn't go through it--my parents are now close to 80, and my
18 year old son isn't up to it.
My parents took out my twin bed and put the hospital bed in my bedroom, and
put the t.v. up on a shelf behind me. The bed had a mirror so I could
watch t.v., backwards! I learned to read backwards. And this was way
before cable!
:-)
I'll keep everyone posted.
Nancy in the East Bay
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This warning came from another message board that I belong to and I
know that there are some of us with kids.
http://www.snopes.com/toxins/dustoff.asp
After reading it, it shows how important to be aware, at all times,
and keep the lines of communications open.
Llweyn
Hi Terry,
I had a caudel block instead of an epidural when I delivered my last two
babies. It shouldn't be too painful, especially after what you've already
experienced...why this should be a piece of cake. It is done by the tail
bone, but I had fabulous relief with