Klippel-Trenaunay Syndrome

Sigyn

Hi there,

I was just wondering if anyone else has it?

Now that my son is 18, Crumlin are washing their hands off of him, not that they ever did any good. Every visit there was the same, trotting him out like a circus pony to Interns and that was it.

UHG are equally as bad. None of the meds prescribed helped with the pain (we never went with the opioids they wanted to start him in when he was 11, for obvious reasons).

Anyone on here who can point me in the right direction regarding a knowledgeable doctor? Most have never heard of the condition and just shake their heads...

Graces7

I will look this up and come back if I may? Thank you.

Gremlinertia

@Sigyn I share your frustration with pain clinic, if it's rare or difficult it appears the team 'checks out' as it were unless as you say to trot out infront of stucents/visiting specialists - ask in pain clinic if there's anyone you could be referred to if you are insured, i think it was them that referred me to a place called the Eccles clinic (attached to the mater hospital if my info isn't too out of date) which got me closer to diagnosis. Note, obviously a different clinic could be required for your son as i'm unfamiliar with the finer points of that syndrome

Sigyn

He hasn't even been seen by the pain clinic, we we've been waiting for that but have been informed now that the referral is not longer valid since it came from Crumlin and he's now 18. To be perfectly honest, he has given up. I had to drag him to the last appointment but he turned out to be right: circuspony and off back home. I've asked and asked. His leg is so full of varicose and spider veins that it often feels like it's on fire, he has sponge bleedings as well which are very hard to stop. His ankle, hips and spine are all affected by now.

He has a medical card.

Graces7

That is SHOCKING. So sorry. As someone with M,E who was misdiagnosed for 30 years and brushed off wth eg tranx.. And even then no support. My support comes from eg ME Association... and even now I dread having to be in hospital as they do not know what CFS/ME is..Nor do most GPs I cannot afford private care so rely on voluntary. Is there any such for this ie generic for any aspect of this terrible illness ? The only meds that work are codeine and at my advanced age that is fine as I MUST stay mobile whatever the cost (Nearly 80 years)

Ave Sodalis

There is a rare diseases unit in the Mater, that I got in touch with via Rare Diseases Ireland (an advocacy group) when I was seeking direction on where to go with my own medical journey. It might be worth getting in touch with them.

Sigyn

https://www.boards.ie/discussion/comment/119927855#Comment_119927855

Thank you VERY much, that sounds like a real good route to take!

Strumms

https://www.boards.ie/discussion/comment/119900171#Comment_119900171

Rare conditions that involve a bit of research, legwork, etc and medical people in this country as Gremlinertia says…. They check out… no interest…

its not just the pain clinic. This attitude is so prevalent and endemic amongst consultants accross the board . In various departments…The department im attached to im back to see in January and while I’ve tried to be patient, understanding and courteous etc… I’ll be telling whomever now if there is so much of a syllable of smartness, disinterest or fobbing off that now I’m more or less better, to stick it…. my dad has been having terrible trouble too…

consultant #1 “ too old to operate, we’ll manage the condition “

consultant #2 “:god no, that can’t be left, we’ll operate “

i don’t know what the answer is for the OP, just keep trying….