my daughter is having bilateral tibial derotational osteotomy in 14 days

[vl7007]

Hi anyone out there. I am trying to find someone who my 17 year old daughter can communicate with on this site about her upcomming surgery.  In two weeks time kat will be having bilateral derotational tibial/fibula osteotomies, then once she has gotten over this, the surgeon will do the bi-lateral derotational femoral osteotomies.  The reason Kat needs this surgery, is due to her long bones/ muscles/ and ligaments all over stretching as she growes during puberty.  With marfans, you tend to grow longer at a faster rate than your muscles and ligaments can cope.  In Kat, this caused her bones to twist, with anteversion of femuro over 78 degrees, and torsion of the tibias and fibulas of 70 degrees in the past 8 months.  She has also grown over 6 inches in this time.  Since this started to develop back in december, 08, Kat  has progressively become wheelchair bound, and can no longer stand, or transfer from bed to wheelchair without assistance.  Kat is looking for someone around her age, who has gone, or going through this surgery.  So she can to chat with them as they would understand her feelings and concerns.   regards vicki

[FireAndIce328]

I am not having the same surgery your daughter is but however I am having tibial torsion surgery and am around her age. I apologize I have not responded sooner since I just joined kneegeeks and your daughter has probally had surgery by now. Is there any way I could ask her questions?That'd be great. I Pray her surgery went well.

[vl7007]

Hey FireAndIce328,

Kat had her first lot of surgery back in 2009, you can read her story under kneegeeks/waiting room/spiritual help & encouragement/journey of bi-lateral derotational osteotomies of the tibias for my daughter, her journey is still continuing but you can get a feel for what has happened to date.  She has now been diagnosed with EDS III with Marfans/POT/Tracheomalacia or  severe dynamic collapse of the airways amongst other things  However none of these explain why her bones keep twisting.  The doctors thought it would stop when she stopped growing.  Kat is now 6ft4in tall, but it doesn't seem to be the case.  Told Kat about you.  If you want to, send me a personal message with your email & I will get Kat to chat with you.  She has communicated with a couple of others from this site in the past.

Cheers

Kats mum  Vicki

[FireAndIce328]

  That would be wonderful. I'll send you my email address.