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Cuety83 02-02-2009 02:23 AM

FED UP!!! Discouraged and depressed!!!
Before you read this, you might want to read "fairly new hi guys" that was posted a while ago by me Cuety83. Hi, im Stefi. I have Capillary vascular Malformation of my entire right leg. Last february 2008, I had my entire right greater saphenous vein removed because it was not working and causing me pain. Well a few days after, i developed phlebitis on my inner right thigh the size of a football, the pain was so bad, I just wanted to die, went to the hospital twice for it and they said there was nothing they could do, i would have to wait for it to go away on its own. Well three months later it did, but it left a little soft lump, through the months that lump got bigger and bigger and then it branched out all over the inner side of my leg from my grion to my ankle. The pain is umbearable most days, sometimes at work, I just start to cry, but I know I got to keep working. The pain is a burning sensation and then a throbbing aching feeling. I have tried stocking, motrin and I practically stalked my vascular doctor to do something. So I have had A MRA done and all this time I thought, it will be okay, something will be done, I will be normal again. I would rather take the pain before the surgery than the pain that I have now. For some reason, the pain makes me tired a lot of times. I am miserable, not my active self anymore, the though of doing normal things scares me because Im afraid i'll be in pain and start limping. So
I went to the doctors for the results and he said THERES NOTHING THAT ANYONE CAN DO!!!!!!! do you think he made a mistake with the first surgery? I have cried and cried, There is no way I want to live the rest of my life with this much pain, I just passed my test to get into a nursing program in my area, im not going to be able to do it if I can't stand the pain from working. I'm almost ready to quit my job because of this, not only that IM SO SCARED because as the months are going by the pain is getting WORSE!!!! The doctor said that all these veins that are bulging out and causing all this pain are veins that are working for my circulatory system in my leg, my leg made these veins to pump the blood. if he takes them out, my leg will blow up. He's sending me to interventional medicine for a second opinion, but he said that he will say there's NOTHING HE CAN DO EITHER!! I don't know what to do, I am so discouraged, If I can't stand this pain, I can't live the rest of my life normal. When I was young, I used to wish I didn't have this because of cosmetic problems, but now, I don't even care, I just want the pain to go away. I want to try getting a referral to the vascular center in Boston if I can, see if they can do something. I don't know if my regular doctor will give it to me, she's kind of strict. What do I do?????? If he really made a mistake, is there anything I can do about it?? This all started after the Surgical procedure that he did.....

sweet pea 03-15-2009 09:08 PM

I'm sorry to hear you're going through all this. I personally went through months and months of what I considered my own personal hell with all the pain I was in. I went to over a dozen doctors looking for help and eventually one said that he would do something about it and I had surgery that same month with that doctor. You can send your information for evaluation at Children's Hospital Boston without a referral, but it does take a while for them to look over it and get back to you because of how much high traffic of information they get from people. Keep looking for another doctor to help you, if this one won't do anything, move on to another one. I don't think it was something that the doctor necessarily did, it's just how your body reacted. That's when my pain started too, after a surgery I had a few years back. Then went through severe pain and had my surgery to fix the pain last year, almost exactly a year ago to be precise. So don't give up looking for someone to treat you, you'll find one eventually.

Cuety83 03-30-2009 02:44 AM

Okay, so I went to a interventional radiologist he is awsome, helpful and so nice. I am officially diagnosed with KT Syndrome. Which is not severe as some other cases I have seen. I live in RI, which is the smallest state in the country, but they are holding a clinic here with the best DRs in April, I am doing some minor things right now for the pain. Hopefully, I can get more answers in april. The doc says that the surgery caused surgical trauma, and thats why i developed vericous veins everywhere, and they are sooooo painful. They might try something less invasive for me to get rid of them, but not right now. thanks for your response. I'll keep it updated

Leece 05-01-2009 06:31 PM

Sorry you have been going through so much, I can really relate how you feel my problems have been so much worse since my last operation (see my thread, My story) Im in a similar place no one seems to be able to help and am always waiting for someone to get back to me, which they never do, I have 2 young children age 5 and 8 and so much want to be better so I can do more with them, my vascular malformation has completely taken over my life, It used to be a pain I could put to one side. but now it has become out of control and I fear for where I will be in 10 years time. My vm affects the right side of my back and is encroching now on my spinal area, I have headaches most of the time, a spinal fluid leak causes the headaches which the vm probably is the cause. any physical activity increases my headaches so am doing little, I was a windowdresser for 18 years which I loved to do but had to give this up because of my back & headaches, I now manage to do a desk job where I am sat down all day.
I did take legal action after my last op but really I dont have much hope these things always take forever and really I expect the only winner will be the solicitor.

sweet pea 05-09-2009 06:08 AM

It's good to hear that it's not too severe. KT needs to be monitored and really kept up on. They can do injections to get rid of varicose veins, I think. it'd be something to ask about. hope all is well.

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