Klippel-trenaunay syndrome or KTs for short.

[Established89]

Hello my name is Terry and I've had KTs since birth but it took 32 years to actually come across a Dr who had actually delt with it before to get that diagnosis, up until jan of 2023 I've been told by every specialist in pain management, physiotherapy, aquatherapy, massarge therapy.

An movement therapy told me there was no treatment and no cure.

I am currently going through some testing and different types of scans to see if I qualify for an experimental course of treatment.

KTS is Klipple-Trenaunay Syndrome. Which is a portwine stain birthmark. Mine covers my left arm, left peck abdomen back and then patches throughout my entire left leg which was like my arm (completely covered) until I was about 12 and I hit a growth spurt.

What KTS has done internally to my body on my left side only:

The bones are thicker, longer,

I have dozens of extra veins that are only causing issues such as swelling, increased body heat, and several blood clots in my left leg.

It has also made changes to the fibers in my muscles, ligaments tendons which has then made changes to my skeletal structure for example my left leg is 4.5cm longer and my left arm is 3cm, an thus i have hip displacement which has then caused complications to the spinal column, the complications with the spin has then caused issues with my shoulders and neck.

The muscles, ligaments, tendons and the bone size and length differences between left and right has caused the spine to twist and curve into a position that can not be medically chamged. It is extreamly painful day in day out

[Babaika]

Man, Terry to be honest I’ve never heard of KT. As far as physical therapy I’ve only gone to improve my balance and strengthen my right leg. I have an AKA on my left leg. I was having some neck pain I think it was more muscle pain than anything. They used heat and massage for that and it helped with that pain. Do you wear a lift on the leg that shorter. I have to wear on on my right leg . I injured it and can’t straighten it all the way so it makes it a little shorter. I wish I could help you out but I really don’t know anything about your disease. Prayer sometimes helps if you are a praying man. God can do wonderful things, if you just believe. Hope you find some relief soon it sounds like such a terrible disease. God bless you. I said a prayer for you asking for healing and comfort.