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-   -   First appointment with Vascular Anomalies Clinic (http://birthmark.org/board/showthread.php?t=3746)

sens71010 03-15-2010 10:42 PM

First appointment with Vascular Anomalies Clinic
 
I have my first appointment with the Vascular Anomalies Clinic at University Hospital in Cleveland, Ohio on Wednesday. I'm trying to think of what to say or ask but I just don't know. After 24 years it's like "what's the point?"

Oh, wait, I know what the point is. I had the worst month of my life in February while on YAZ birth control. I don't want to have to worry about things like that anymore!!!!!!!!!!!

What if they say it's too complex to do anything about? I'm not expecting miracles, honestly. But I do hope that I can get rid of some color (it's purple!) and bulbousness (it's not a word but it describes my malformation perfectly). I want it to not affect my salivary gland anymore either! It can be so painful! It is naturally swollen, all the time. After weeks of waking up with drastic swelling, I think my neck skin may have stretched out a little (on the other hand I could just be scarred from the experience and imagining things...)

Oh yeah, I have a venous malformation that encompasses my tongue, underneath my tongue, and top left side of my throat. I can talk and eat normally...until I have a complication and then my life can be quite horrible. I'm a teacher so waking up not being able to talk doesn't quite work.

Anybody have suggestions on questions to ask to help me learn more about my condition or about possible treatments?

cab 03-16-2010 02:22 AM

Hello! First of all, don't worry about "what's the point." If you are in severe pain, you definitely need to seek treatment, no matter how old you are. I have a VM from my right knee to my thigh, and the first thing they did with me was an MRI with contrast. Your doctor may not be able to offer treatment options until he gets a better idea of what exactly he is dealing with. I have been undergoing sclerotherapy treatments (3 so far, 4th one scheduled for May). With this, doctor's can use different sclerosing agents, so if your doctor suggests this as an option, you may want to ask what he will use and the risks associated. (Ex. ethanol has a higher risk of skin irritation) Since you are currently experiencing pain, I would also ask what medications you can take daily to control the pain. Alright that's all I can think of for now!

P.S. I'm a 21 yr old in Cleveland, currently being treated at the Cleveland Clinic. I can give you my interventional radiologist's name if you want a second opinion.

sens71010 03-17-2010 12:46 AM

Thank you!
 
Thank you! I would love to know the name of your doctor! That would be awesome as the Cleveland Clinic is technically covered under my insurance and University is not!

How is your treatment going? Are you having good results?

sens71010 04-18-2010 09:19 PM

Hey I decided to wait on treatment until AFTER I get married. Also, since I'll have the time, I think I'll see the doctor's at Cleveland Clinics Anomalies Clinic, too. I never knew they had one!
I had a good experience at University but didn't really get to ask questions or talk about other therapies besides sclerotherapy.

sweet pea 05-28-2010 08:32 PM

good luck with treatment! I'd write down the questions you have and bring them to the appointment, then you can basically hand the doctor your paper with everything you want to know about. haha. When are you getting married?? :)


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