Steph,

I have Larsen Syndrome which is a very rare form of dwarfism. I'm only 3'
2" tall. The reason for the fusion was because the vertebras were
decompressing and pinching all the nerves in my neck which was the cause of the
tingling
in the fingers and toes and the numbness in my legs. I'm not sure what the
reason was for me going in and having the screws tightened maybe they just
wanted to make sure the head part of the halo would stay in place?? I'm glad I
was able to help. I will ask my Dad later exactly the spots they fused
since I'm not positive about that and then I will let you all know.

Anna



In a message dated 3/1/2007 11:47:04 PM Eastern Standard Time,
tephylynn@... writes:




Anna,

Are you achondroplastic? I'm glad that you feel strong and functional and
complete after having been through some really difficult stuff as a child. What
was the reason for the fusion? What was wrong with your spine? I'm sure the
scoliosis didn't make matters easier for you or the medical process. I wonder
what made the constant visits and screw tightening necessary.

You and everyone else here have given my much to discuss with Dr. Ain. Thank
you so much. I really hope that you will be able to drive. The independence
is fabulous! But I know that you will be strong and independent anyway!

Thanks so much.

Steph

_bailey5774@..._ (mailto:bailey5774@...) wrote:
I had my upper neck/spine fused when I was in 4th grade. I'm now 22 years
old and other then not being able to turn my head anymore I do just fine.
The
interesting part will be if I can drive. I'll find out hopefully within a
year.

Just before I had my neck surgery I started to get tingly feelings in my
hands and feet and my legs would sometimes give out which caused me to fall.
It
was a routine x-ray of my whole body with my ortho doctor when he found out
I had something wrong with my spine. I do have scoliosis as well but have
not had anything done with that part of my back (knock on wood). My
orthopedic
doctor sent me to a neurologist and he was the one that got me right in for
surgery. I had to have a halo for 6 months. I will tell you the truth. For
ME it was awful!!! I would have to go in every 2 weeks to have the screws
tightened and then 2 of them collapse into my scull (caused major head
aches)
and I had to have them removed and have 2 new ones put in. I also had to
have
a wool vest that connected to the head piece which was AWFUL!! Part of the
time I had it was in the summer and winter. I also went to school during all
of this so It's not impossible to go to school, it just takes longer getting
ready in the morning and finding cloths that will fit over the vest and
around the bars. The surgery went very well, there were no complications. I
just
now have to be careful that I don't fall or get juggled too much that would
jar my neck. I have fallen since the surgery and I have had very good luck
so far. I hope I never do anything to my neck that would cause me to become
paralyzed. I did regain all the feeling and strength in my fingers and legs
after the surgery. They had caught it just in time. I hope this is of ANY
help to you.

Anna



In a message dated 2/28/2007 7:36:26 AM Eastern Standard Time,
_tephylynn@..._ (mailto:tephylynn@...) writes:

Not a dumb question. I will ask Dr. Ain exactly this question..and many
others. Dr. Campion said that his rods could be removed after his deformed
vertebrae would regrow normally. That was exciting information that I had
hoped to
hear. I'm wondering if removing the rods would realign the rest of his
spine.
I also need to know if the deformed vertebrae that resulted from the
kyphosis would become seriously threatening to him if allowed to exist. My
belief is
that the answer may be yes. I'm afraid that he may have a full spinal
fusion. I just hope that it won't be permanent. I've met many scoliosis kids
- and
they don't look "frozen" to me. They look healthy and normal with a full
fusion. It might be ok.

Everyone in this group is so lovely. It's great to share experiences and
help each other.

Steph

Grant & Patty Bowers <__gpsab@..._ (mailto:_gpsab@...) _
(mailto:_gpsab@..._ (mailto:gpsab@...) ) > wrote: Just a
dumb question, but what would happen if you removed the rods? I am AH, and I
broke my back at t12, actually shatterd it, and I had to have rods inserted.
I believe I was fused also. I had to have donor bone inserted.
After six months, it was discovered that one of my rods was bent! I knew it,
boy!!
There wasn't anything the doctor could do at that time, but baby me along.
He said I could have the rods removed after my back had healed the full
year.
I couldn't wait!! I could feel the rods from the inside tearing at me~ they
felt like my bra hooks were digging into me, but from the inside. We all
know
that feeling~ imagine feeling that night and day for 6 months and there
wasn't a thing to be done?
I practically danced down the hall to the OR and jumped on the table the day

of the surgery to take them OUT!!
Before the surgery to take them out~ I automatically walked like an old
lady, with a hump at the top of my back, so very attractive for a woman of
40
years old. The DAY my rods were removed, I stood straight up.
I agree~ rods are a scary thing! And I am amazed at the strength of the kids
who go through those sorts of operations and never feel a thing afterwards.
It was very hard on me~ I mean the first surgery, of course.
So please, excuse the rambling, but please don't forget the question~
Thanks,
Take care,
Patty :D
----- Original Message -----
From: Steph<mailto:__tephylynn@yahoo._te_ (mailto:_tephylynn@...) _
(mailto:_tephylynn@..._ (mailto:tephylynn@...) ) >
To: _parentsoflittlepeoTo: _parentsTo:
(mailto:_parentsoflittlepeopparentsoflittleppar_
(mailto:parentsoflittlepeople2@yahoogroups.com) )
<mailto:_parentsoflmailto:_parentsomailto:_parent
(mailto:_parentsoflittlepeopparentsoflittleppar_
(mailto:parentsoflittlepeople2@yahoogroups.com) ) >
Sent: Tuesday, February 27, 2007 6:52 PM
Subject: Re: [Parents of Little People 2] spinal fusion

My son, Noah, had a limited spinal fusion surgery in August for kyphosis. He
is 10 years old and has achondroplasia. His doctor is Edmund Campion at UNC.
We consulted with Dr. MacKenzie who wanted Noah to have a complete posterior
and anterior fusion. Well - we were NOT supportive of that idea. Noah is
unbelievably physical. He dances and is quite naturally acrobatic. He does
professional theatre in our home town. He's popular and dynamic. To "glue"
his
entire spine together was a traumatic concept for us. Dr. Campion believed
that
a posterior spinal insitu - just 6" rods in the lumbar area - would help to
correct the problem without the extreme spinal fusion.

Well - I have some regrets that I would like to share with you. I wish that
I had insisted upon MRI photographs before the surgery to specifically look
for spinal stenosis - which is expected in achondroplasia - just not usually

problematic until young adult life or later. WHY? Because the 6" rods nicely
straightened the kyphosis - but caused Noah's stenosis (of which we were
previously unaware) to compress upon his nerve roots and he became paralyzed
from
the waist down. He had to immediately go into another emergency surgery to
have a lamenectomy performed where the rods were taken out and then put back
in. If we had discovered the stenosis ahead of time, the lamenectomy could
have
been performed at the same time the fusion was done.

So - Noah has been recovering nicely. He's no longer in a wheelchair. He
uses a walker for long distances. Walks on his own with braces to support
his
ankles. He's getting his full motor skills back - except for his left foot.
He
still cannot flex his left foot. Dr. Campion doesn't know why since his
right
foot is great and his left foot has regained complete sensitivity. Also -
his bladder doesn't function normally. We occasionally have to cathetarize
him
- which has been a regular part of his life since the surgery in August. He
wears pull-ups to school.

BUT - the other scary thing for me is this........BUT - the other scary thin
thing for me is this........<WBR>........<WBR>...the area of the spine above
the rod
actually caving in. The top tips of the rods can be seen protruding from his
back. It's not comfortable for him at all. But - he still acts, sings and
dances - as much as he can. He's still the most popular

We are seeing Dr. Michael Ain next Friday for his advice about all of this.
We insist that we get our son back 100%. We are afraid that he will need a
complete spinal fusion. Honestly - he was completely fine before the
surgery. I
don't honestly know how bad the kyphosis could have damaged him. The rods
stick out much further than his kyphosis ever did.

Spinal fusion surgery is very common for orthopedic surgeons. They do it all
of the time without any complications. Dr. MacKenzie has done thousands and
has treated children with dwarfism - you know this. The surgery will be
fine.
You can count on that.

I want to ask you why your child needs the surgery.

I hope to help you by sharing my experience. I hope it didn't scare you.
I know how you feel.This was the first time anyone cut into my son - I was a
complete mess during the whole process. He is precious and sacred to me. I
don't want anyone messing with him. It's been a difficult time. But none of
us
are frightened about surgery anymore. Noah is totally fine with it. He says
"Having another surgery is totally fine with me, Mom. I'll be asleep
anyway."
He's the coolest kid in the world.

Good luck.

Steph

szclark78 <__szclark78@yahoo._sz_ (mailto:_szclark78@...) _
(mailto:_szclark78@..._ (mailto:szclark78@...) )
<mailto:szclark78%mailto:szcl>> wrote: --- In _parentsoflittlepeo wrote: ---
In wrote
(mailto:_parentsoflittlepeopparentsoflittleppar_
(mailto:parentsoflittlepeople2@yahoogroups.com) )
<mailto:parentsoflimailto:parentsofmailto:parent><WBR>, "Marji McIlva
<mcilvain@..m> wrote:
>Her surgery is in July and we are expecting a new baby in may so I
am just overwhelmed right now. Thank you for responding to my
concerns.
> Suzanne~
>
> Believe me, I can relate! When my daughter had just turned 4, we
had the
> same experience. A good number of parents will respond, I'm sure.
Vita has
> set up a new website to address this very thing. After our
experience, I
> wrote a little pamphlet called "The Halo and Your Young Child - A
Parent's
> Perspective" Perspective"<WBR>. Vita has it up on the website as a
best way
> I have for you to get a view of our experience.
>
>
>
> __http://pixelscapes.http://pix_ (http://pixelscapes.http//pi_)
(_http://pixelscapes.http://pi_ (http://pixelscapes.com/halo/) )
<__http://pixelscapes.http://pix_ (http://pixelscapes.http//pi_)
(_http://pixelscapes.http://pi_ (http://pixelscapes.com/halo/) ) >
>
>
>
>
>
> When is her surgery scheduled?
>
>
>
> Marji in NC
>
>
>
> -----Original Message-----
> From: _parentsoflittlepeo From: _pare From:
(mailto:_parentsoflittlepeopparentsoflittleppar_
(mailto:parentsoflittlepeople2@yahoogroups.com) )
<mailto:parentsoflimailto:parentsofmailto:parent>
> [mailto:_parentsofl [mailto:_pa [mailto:_
(mailto:_parentsoflittlepeopparentsoflittleppar_
(mailto:parentsoflittlepeople2@yahoogroups.com) )
<mailto:parentsoflimailto:parentsofmailto:parent><WBR>]
On
Behalf Of
szclark78
> Sent: Tuesday, February 27, 2007 11:51 AM
> To: _parentsoflittlepeo To: _parentsofl To: _pare
(mailto:_parentsoflittlepeopparentsoflittleppar_
(mailto:parentsoflittlepeople2@yahoogroups.com) )
<mailto:parentsoflimailto:parentsofmailto:parent>
> Subject: [Parents of Little People 2] spinal fusion
>
>
>
>
>
> Hi everyone,
>
> I havn't logged on in a while but need help. Wejust got back from
> Dupont and Dr. Mckenzie told us Breanna 3(SEDC) needs the spinal
> surgery and halo for 3 months. I am scared to death and wanted to
know
> if anyone can give me info or share there experiences. I would
greatly
> appreciate it very much.
>
> Suzanne
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

<BR><BR><BR><WBR>****<WBR>****<WBR>****<WBR>****<W<BR> AOL now offers free
email to everyone. Find out more about what's free from AOL at
_http://www.aol.http_ (http://www.aol.com./)

[Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]






<BR><BR><BR>**************************************<BR> AOL now offers free
email to everyone. Find out more about what's free from AOL at
http://www.aol.com.


[Non-text portions of this message have been removed]