First appointment tomorrow!
I have my first appointment with my new primary tomorrow, with the sole intent of discussing my PWS and hopefully finally getting down to the bottom of what else it might be affecting (KT, deep veins, etc.). I'm hoping that my new doc won't just gloss over it like all my other primary care docs; as I've said before, other docs over the years merely found it to be a curiosity, and not one of them ever told me that it could have potential, serious complications. Really wish that an observant doctor would have told me sooner! :mad:
Anyway - I'm making a list of concerns that I'm going to take with me on my visit. Chief among them are:
1) possibility of KT syndrome - testing necessary?
2) weeping rash on my birthmark, esp. in winter - cellulitis?
3) slight hypertrophy on my toes?
4) I feel cold all the time - connected with PWS, circulation issues?
5) Should I switch birth control - on hormonal b.c. now - potential high risk for clots/thrombosis?
I am finding that making lists and taking notes about the things I want to discuss is really helping me stay organized and not be overwhelmed.
For those of you who only just became aware of the risks associated with your PWS as adults - how did you go about talking to your doctor about it? Did you find that you had to really be a "squeaky wheel" about getting the tests and treatments that you needed? Did anyone here ever feel like they needed second opinions?
Just looking, I guess, to hear stories from folks who are/were in my situation - i.e., folks who are only just now addressing their PWS's as adults.
I just wanted to say hi and let you know that we'll be looking forward to an update tomorrow. Stick to your guns and best of luck!!
Update - sorry for delay!!
Why does life get so CRAZY this time of year??? The time just slips through my fingers!
Anyway, as expected, my primary doc took a look at the birthmark and knew nothing about it except it was a PWS. I talked about being concerned about KT syndrome, which was met with a blank look. I even showed him my email from Dr. Nelson, and he almost seemed dismissive of it.
At the end of the appointment, he referred me to a dermatologist. I wanted to cry because I really thought I'd get some answers/knowledge/information - not just a dumb look and a referral!!! So I did just that - called my BF and cried my eyes out. BF told me to "hold on, let me call my mom" - and he did. Turns out my BF's little brother has a pretty extensive case of KT - and his mom is very familiar with the many treatments, surgeries, etc. Turns out the derm my doc referred me to was the same guy that treated my BF's little brother for his KT stuff. I was really relieved after hearing that. :)
So - that's where I am now. I will be making my appointment with a fella by the name of Dr. Panzer in the coming weeks, before the New Year, if I can. Delaware's a microscopic state (most folks don't even know it's a state! Dela-where?), but I figure I'll ask anyway: anyone ever hear of him, treat with him? I'd be interested to hear stories.
Thanks, folks - so blessed to have a "sounding board" here.
So glad to have an update!! At least your new doc referred you to someone who won't give you that blank look!
On Delaware... when I used to live in NY and would drive down south to visit my mom, my favorite place to drive through was Delaware! There's this amazing college station on the radio there. I remember driving down 95 in July singing the theme song to "How the Grinch Stole Christmas!" Priceless.
I'm a huge fan of the tiny state!
Yeah, it's probably the University of Delaware's station, I'd bet. I live a stone's throw from there.
So I'm again at a point of frustration. I called Dr. Panzer's office and spoke with the receptionist to make an appointment as a new patient. She asked me why I needed to be seen, and I said that I need to have my port wine stain evaluated.
Guess what she said?
Are you freaking kidding me??? I had to sit there and explain to her that I have a port wine stain birthmark - which she'd never heard of (at a derm office??? really??? really??!!) - and that I'm not coming in for anything cosmetic, it's a venous malformation and it needs evaluation, blah blah blah blah...
Silence. Silence on the other end of the line.
But they scheduled the appointment with me anyway. Guess even though she doesn't know what the heck I'm talking about, she'll be happy to collect my $25 co-pay.
I have an appointment on February 9 with the guy who started the practice... and I am hoping to G_d that he knows what I'm trying to do here: get a clear picture of what exactly is going on with my PWS and what I need to do about it.
I'm seriously crying out of sheer incredulity and utter frustration. WHY does nobody - even a receptionist at a dermatologist's office - know what I am talking about???
I seriously want to punch a wall.
:mad: :mad: :mad: :mad:
Oh, don't get upset about that.... the receptionist shouldn't have ANYTHING to say about it at all.
Once, I went to a gyn and the receptionist questioned me about something medical while I was standing in the waiting room. I blasted her about 1. practicing medicine without a license (she was telling me that bells' palsy isn't painful, so that wasn't what I had) and 2. blowing my privacy by discussing anything with me while I was in the presence of other patients.
Wait to see the doc before you evaluate the practice.
Of course, you're absolutely right.
I guess I'm just tired of going to people who are (in my mind) supposed to know what I'm talking about and not getting any helpful information. It's my fault, I know; I created the expectation that the receptionist at the derm office would know exactly what a port wine stain is because the office even says on their website that they treat them. I was looking for understanding and maybe expecting it, and that was wrong... but still, my head exploded a little.
I come here, I get all the understanding in the world. I go to a doctor, and they give me the "blank stare" reaction!
Anyway - my appointment's not until February 9, so I guess I'll hang in there until then.
Thanks, Missy. :)
Sure thing... that's why we live here.
Maybe she was a temp. <<shrug>>
Anyway... write it down. Make a list of all the questions you have AND at the end of that list, make a note that you were not pleased with the receptionists' lack of professionalism.
I mean, face it. It would have been totally appropriate for her to say, "I'm sorry...I'm not qualified to answer medical questions at all. May I have someone return your call about that?"
But write it down so you don't forget!!
And take care!!
And I'm sorry your head exploded a little.
hey thanks for the update !
don't worry about the receptionist. screw her. You got an appointment so try to think of that as the prize. You are there for YOU not her. She's just a desk you need to pass to getting somewhere.
oh an no matter what airs people give not everyone knows everything ! do that cartoon bubble thing that says " dumbass " above peoples heads.
ok so i'm not a socialable patience person but it gets me threw the day. ha ha ha ha ha
I met some US Army docs and nurses from Delaware. I have an email address for one of them but she's in training to be sent to Iraq but she'll pop up again. I'll leave her a note. But do some research on the net about Dr. Panzer if you are still unsure.
Pazner is the name of a German tank during WWll
chin up ! your getting somewhere
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