Hyper-mobility syndrome and Marfans syndrome operation question

[lizzylegz]

Hi i have Hypermobility syndrome in most of my joints and also have Marfans syndrome too.... after being under several hospitals for 30 years they finally diagnosed me with both 3 years ago.... the question is i am due to have both knees realigned and the tendons and ligaments shortened in the hope that this will give me a few years free from dislocation ... Has anyone had this surgeory that would kindly tell me their story as i am very scared i am a mum of a 2 year old and live in constant pain :-(

[Silkncardcrafts]

Whereabouts are you based ?

I have EDS Hypermobility type and have had both knees realigned with a fair amount of success.

Bony operations tend to work on us best.

[lizzylegz]

Hi i'm based in welling ... i have EDS (hyper-mobility) with Marfans syndrome one of the symptons of this is that i have very thin skin and dont heal properly so will end up with bad scaring on my legs so am hopeing it will be worth it... can u tell me how big scars are and what to expect as in healing time etc etc ... please

[lisa424]

Different doctors can do the same surgery with different incisions. Some make small incisions, others not so much. Ask your doctor. Also I think that tight, layered stitches tend to heal better for hypermobile people. Leave steri strips on for awhile to keep the skin from stretching. Vitamin C supplements are also helpful.

[lizzylegz]

Thanks Lisa,been told by specialist he will go on via key hole then open me up from above my knee right down past my knee approx 30cm depending on how much work they need to do once in surgery ... only 8 days till operatiion getting very nervous and hoping it works...and i'm taking lots of Arnica and have some very strong vitamin E and Arnica cream to put on scaring when stitches come out.

[lisa424]

 I think I've had the same surgeries and my 3 scars are probably 15 cm all together. You should also look into buying silicone strips, or silicone gels. It helps scars heal better. I think vitamin e has been shown not to be effective and may cause irritation.


Good luck with your surgery !!