Re: electro-magnetic veptr

[Guest guest]

CLARIFICATION

There doesnt exist an electro-magnetic VEPTR, just yet. Its my

understanding that Prof.Dubousset and his protege' Zellar (sp?) in Paris

are trialing electro-magnetic subcutaneous growing rods attached to the

spine. No papers on this yet, that I know of.....(If you ever find

anything on this Deshea or anyone, please post). It seems that the VEPTR

manufacturers would be looking into making their hardware electro

magnetic. If they dont, their hardware competitors might, because this

seems to be the way to go. But, what do I know! ha!

HRH

> Oh, !!! I am so so sorry that your sweet little man is going

> through this. My heart aches for you and . You are such an amazing

> mother and I know you will continue to stay strong for . I hope the

> VEPTR or this motorized Veptr in France is the answer to your prayers.

> Please know that I am thinking of you and praying for .

>

> Sending loads of hugs all the way across the world to you both.

> (((HUGS)))

>

>>From: heather@...

>>Date: 2008/03/17 Mon AM 11:43:52 CDT

>>To: infantile_scoliosis

>>Subject: [Fwd: [Groupmail] ]

>

>>

>>----------------------- [Groupmail]

>>

>>Date: Sun, March 16, 2008 8:36 pm

>>To: " hearts of hope "

>> " scoliosis group "

>>----------------------------------------------------------

>>

>>Hi everyone,

>>

>>I am emailing two groups at once.

>>

>>Firstly I apologise for not addressing any emails. I know this is rude

>> and

>>selfish of me, and then to turn around and talk about our situation is so

>>insensitive, but I am in a shopping centre with two kids and 16 minutes.

>>, I would have taken up the offer of using you! (Your computer)

>> but

>>I am sure you guys are getting over this gastro like us.

>>

>>My computer is getting connected this thrusday, thank god! I will then

>>have the time to check all emails and address them all because you all

>>mean so much to me.

>>

>>OK, just quickly with 14 mins. is not going well. Again. His cast

>>was too tight, I was worried about cast syndrome, so were they, so it was

>>removed. NOw the surgeon is away for two weeks, so is having a

>>break. His back is terrible. I will send photos to the group. It is panic

>>time. Again. He is becoming much bluer and needs his fontan soon.

>>

>>HIs only chance now is surgery. I am furious that he missed early

>>treatment, and could have been cured. There are two possible surgeries.

>>ONe is growing rods, which attach to the spine. I have been researching

>>and studying the spine, and bone is formed by laying down layers of bone.

>>This process is called ossification. I asked the surgeon how

>> ossification,

>>and the point of fixation of the hooks and rods, are affected to a

>> growing

>>spine. He said it is affected, and what happens is called hypertrophy.

>>This is a thickening of the bone behind the points of fixation. So, I

>>don't want this for .

>>

>>The other option is the VEPTR 2. This is only in America. was in

>>the paper today, front page, saying we were heading to amercia to have

>>this done and please donate. Good lord, how misleading! I called the

>> paper

>>and they are doing another story, after calling my lawyers to find out

>>what else I can do about that mess. Though the truth is the VEPTR 2 is

>>only in America. I want to have then with the electro magnetic

>>motors on each side, not done anywhere yet. (The motors are done in

>> France

>>but not with the VEPTR) s surgeon here in Melbourne is open to this

>>idea, but how and where!!!!!!!!!

>>

>>So much stress. My little boy saw pictures of his back and burst into

>>tears, he has seen it before but never cried, he said " I want a straight

>>back "

>>

>>Damn it! Such a feeling of powerlessness. His entire thorax (chest area)

>>is completley twisted and just wrecked by this disease.

>>

>>Scoliosis Kids Australia, we need to do something here. We need to

>>schedule a meeting for April and get funding, serious funding going for

>>research. I would like to raise $1 million dollars in two years, and lets

>>head the the first scoliosis research project in Australia. Did you know

>>there is no research in Australia for scoliosis at all?????? We musn't

>>keep bandaiding the problem with surgery.

>>

>>Anyway, three mintues. $1,000000 or however many zeros is needed to make

>> a

>>million is happening. Sick and tired of seeing this deformity with

>> limited

>>options that are out of our reach. SKA are officially on a massive

>> mission

>>to save our kids from this puzzle that no one seems to be trying to

>> solve.

>>We have a lot to do.

>>

>>Gotta go,

>>

>>LOve MOnique

>>__________________________________________________________

>>New music from the Rogue Traders - listen now!

>>http://ninemsn.com.au/share/redir/adTrack.asp?mode=click & clientID=832 & referral\

=hotmailtaglineOct07 & URL=http://music.ninemsn.com.au/roguetraders_______________\

________________________________

>>Groupmail mailing list

>>Groupmail@...

>>http://scoliosiskidsaustralia.com/mailman/listinfo/groupmail_scoliosiskidsaust\

ralia.com

>>

>>

[Guest guest]

<<Its my understanding that Prof.Dubousset and his protege' Zellar (sp?) in

Paris

are trialing electro-magnetic subcutaneous growing rods attached to the

spine.>>

I also know there are some Japanese docs who are doing electro-magnetic

expandable rods. Not sure how successful they have been, yet. The newest

thought that seems more realistic for some kids is the self-adjusting rods, like

the Shilla rods. As with all new technology, very close eyes will be kept to

see how these kids are doing with the self-adjusting rods - what complications,

if any, there may be, etc. I've heard talk of them experimenting with

self-adjusting VEPTR type rods, but not sure they actually have them yet. Very

interesting.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and

Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient

#137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies,

missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic

constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic

bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96,

1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus

deformity, GERD, Gastroparesis, SUA, etc.

http://carmellb-ivil.tripod.com/myfamily/

Congenital scoliosis support group

http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

---------------------------------

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.