PWS and possible KT Syndrome - freaking out a little!
So after 33 years of gracing the crust of this Earth with my presence and having done nothing with my huge PWS (covers much of my right leg), I've finally taken the first step towards getting some kind of treatment. I didn't count on it being so difficult to find information about first-time treatment as an adult; there's so much information out there for parents of kids with PWS's, but not a lot of information for adults treating their PWS's for the first time (what to expect, the amount of pain, bruising, time off from work, etc.).
I emailed one of the doctors on the VBF list because I didn't know where to begin. I described my birthmark (flat, some minor enlargement of toes, some cellulitis, some bleeding, darkening of the mark itself, increased vascularity), and he came back with the answer that my first step should be to go to my primary care physician and ask for a gadolinium contrast MRI to check for Klippel-Trenaunay Syndrome.
I feel fine. I have no pain with my birthmark. Apart from the birthmarked toes being a little bigger than the others (I wear the same size shoe on both feet very comfortably), I don't have any visible hypertrophy. I've fainted unexpectedly a few times, presumably from blood pooling in my leg. Oh, and I'm cold all the time, which is probably related to the vascular wonderfulness in my body. But otherwise, I feel great, completely fine.
If I had Klippel-Trenaunay Syndrome, wouldn't some pretty big symptoms have manifested themselves by now? Is it progressive?
I'm seeing my new primary care doc in a few weeks to look at the thing (my old doc just got thrown into jail for insurance fraud and selling oxy on the street!!)... but I guess at this point I just want to hear some stories from people with/without KT.
And I'm praying that my new doc has a semblance of a clue about vascular birthmarks and can help me get a correct diagnosis and a good course of treatment... which also has me feeling all bajiggity.
I'm kind of freaking out, and it feels better talking to people who really know where I'm coming from.
hey don't freak out. I think it is natural to though.
Your taking important steps for yourself. Takes courage. Keep going.
I'm a adult and hoping to have something done for my pws. yeahhh freakin me out taking first steps. Had some disappointments but you just need to keep trying.
Get those tests done. Find the right doctors. its your health. You live in the US right ? make use of every resource available.
I have an appointment with my new primary care physician (my old one is in jail for fraud! :eek: ) on November 19. He has a specialty in internal medicine, so I'm hoping that he'll be at least a little familiar with this. Over the years, I've found that more often than not I have done more educating of my primary docs re: my PWS, rather than the other way around; they've seen it more as a curiosity than something that may require serious medical treatment.
IMHO, I think that calling it a "birthmark" somehow undermines the seriousness of what it actually is. After all, birthmarks are supposed to be harmless, right? :rolleyes:
Anyway, thanks for listening. I'm trying very, very hard to not freak out!
you know freakin out makes you human right ? :D
Doctors are very interested in birthmarks. I am a distraction. I'll never forget my mother was being wheeled to surgery and her surgeon saw me an forgot about her to give me a look over. But he was the first doctor i've met who had an idea
But recently i've met a few who even its not their field seem to know what it is and what treatment needs to be done. And i live in a " developing nation " so theres hope for you yet. ha ha ha ha.
I wish you luck. if this doc gets locked up keep trying :) Got to be one somewhere
Thanks, kaykay - I hope you're right!
I'm actually kind of angry that all of my primary docs to date - from my pediatricians all the way through adulthood - have not given my birthmark a second thought. They merely note it as "interesting" and that's it; nobody's even breathed a word about anything like Klippel-Trenaunay or possible vascular issues. The only reason I'm focusing on it now is because my dad's wife has a tiny one on her face, on her left cheekbone, and she told me I should have mine looked at; had I thought it could be serious before, I would have done something about it much, much sooner.
Grrrrr, so frustrating!
come to think of it, its been younger doctors that show a greater interest in me. May be because they are more advanced info wise with the internet an all and so more aware of whats out there even if its not their field. A doctor has an interesting case and with a click of a button its pass it out for opinions. Not dissing older doctors ! just saying maybe its a generation thing.
Remember like you said before, when you were born no one knew anything about birthmarks. I had the same problem. Doctors really didn't know what to do. This is not an excuse. Doctors do not know everything. an maybe they just ignore what they don't know if its not an immediate concern. i dunno.
You will find a doctor. Look for the closest area on the list of this website. And try to get there if your new doctor can't help. Or give the doctor as much info as you can with contacts. If he's a good doctor he will look into it.
The past is the past. What you need to do its think of now. But i do understand how you feel. I feel if my family did not migrate from Australia maybe eventually i would of had help alot earlier in my life. I had argo laser up the the age of 7/ 8 i think and it was stopped cause it wasn't doing nuthin and they thought it may affect my health. But i can't know that for sure right ? things happen. if i took that path i'd be a very bitter person hating my mother for the rest of my life. So i think maybe now i may have an opportunity and i want to see what happens. My last shot probably but we'll see what happens.
hang in there and save your frustration for the next doctor caught for insurance fraud !
Have you seen a doctor since your last post? I too thought I had KT syndrome and when I got in to see Dr. Driscoll and his colleagues at the Mayo Clinic in Rochester, I found out I've got the even more rare vascular condition called Servelle Martorell Syndrome so you might want to ask your doctor if it could be that as well.
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