RE: Laimi

[Guest guest]

Thanks, for the informed reply.

Olivias rotation/kyphosis is significant. 

That’s why we decided to pursue the dual VEPTR 2 attached to her iliac

crests.  Her surgeons and I felt that this modificationof the Veptr would hold

her rotation/kyphosis, better.  Instead, of attaching it to the spine.  While

this procedure has bought her almost 3 years of growing time, it hasn’t come

without its complications (as you know)…….Olivia has had curves of

over 100 twice, in her life…..Now, she is holding at approx. 60…..My

concern is that the current hardware is aggravating the forward push of her shoulders

and cervical vertebrae.  Not to mention the long term effects of tight

hamstrings, horribly affected gait/posture……Olivia is too small to

consider any definitive procedure at this point……Including fusion

of her cervical vertebrae….We have worked very hard for 10 years not to

get premature fusion, and I am determined to find a better solution…….Any

printed info or links that you could provide on the Shilla would be much appreciated!

Thanks!

HRH

From: infantile_scoliosis [mailto:infantile_scoliosis ] On Behalf Of L F-N

Sent: Saturday, November 22, 2008

12:58 AM

To: infantile_scoliosis

Subject: Re:

Olivia Update

,

This sounds very similar to how my son looks

right now. By the way, he is having surgery on Monday and the VEPTRs will be

removed. (I think I told you already). My son had three vertebral bodies

removed and the spine collapsed because the fusion in the front never " solidified " .

During the implant of the VEPTRs (2nd-3rd ribs down to illiac crest) the

kyphosis went down to 50-something degrees. Well, when the spine

collapsed again, it went back to 90 degrees and this was not noticeable

because the VEPTRs were hiding the curve. The ribs are still in the

VEPTRs' rings but they have bowed backwards and are not holding anything. It

was not until we got a CT with 3D reconstruction that all

this became obvious.

The way you describe Olivia's cervical and

shoulders sound very similar to '. Please, be aware of a possible

kyphosis that may not be noticeable in lateral views because

the VEPTRs are hiding it. Going from scoliosis to kyphosis is

relatively easy given the fact that in some cases of scoliosis, the

spine rotates. It is not necessary to have any missing vertebral body.

In any case, do not panic and do not run to fuse

please. I wonder if you want to forward your x-rays to our surgeon. Have you

heard about the Shilla? It is an extra muscular rod that eliminates the

chances of involuntary fusions because the metal does not touch the

periosteum of the vertebrae. It does not need surgeries to be extended

because the rod slides within the screws. Dr. Lenke in Saint Louis has been

doing this for some time.

If Olivia's surgeon is indeed correct, and there is

nothing else than the VEPTRs touching the scapulas, maybe they could be

repositioned (?????) Does she have the original VEPTRs or VEPTR II? VEPTR II

offers the chance for more attachement sites.

I am new in this group and don't really know each

particular case yet. You seem to be looking for answers everywhere though. We

went to Dr. Emans (Children's Hospital Boston) and Dr. Betz (Shriners

Philadelphia). I always suggest to every parent I meet that, if

things start looking " funny, " it is time to go see these two

doctors. You may have been there already. Again, I don't know the particulars

of Olivia's situation but the similarities with my son caught my

attention.

Good luck! I hope you find what you are looking for.

Laimi

From: Hyatt

<heatherinfantilescoliosis (DOT) org>

Subject: Olivia Update

To: infantile_scoliosis

Date: Friday, November 21, 2008, 4:29 PM

Well , Olivias rods are not eroding through her

ribs. That¢s the good news. The not so good news, is that her

posterior hardware (dual Veptr 2 attached to iliac crests) touches her right

scapula (shoulder blade), which makes her not want to hold her shoulders

back. Her shoulders are rolling forward (for almost 3 years now), which

is also making her cervical vertebrae lean forward and that¢s why the rods

are now so much more prominent. She has literally developed a shelf at

the top of the rods in back and the progression and leaning forward of her

cervical vertebrae, is quite concerning. The only way to address this

that I am aware of is fusion of segments in that area. I don¢t want to

sit and watch this get worse, until we have no other course but to fuse, so I

am doing more research. I have just placed a call to her physical

therapist, in order to be proactive about this until we figure out what the

best plan of care for Olivia is, at this point. Does anyone out there

have experience/advice on this? I think this a common occurrence for

children with hardware of all types, but am not 100%......

Liz, I am so sorry we didn¢t get to meet!

it was wonderful meeting you and your beautiful

family. Please let me know how the kiddos are doing after their edf

cast applications, yesterday.

Have a great weekend.

HRH