Updating

Well, I have seen two different doctors recently. One was a vascular specialist who said that he has seen avm’s but has no experience in treating them. At least he was honest enough to tell me that my condition was above his expertise. The second one was the Director of Hemotology in Tampa out of USF. He told me that he has heard of avm’s but that AGAIN he’s never treated them, except THIS doctor asked me if he could do research on me! Can you believe it? Well, I said no! He did do testings on me though (my blood) to reinterate to me what my bleeding disorder is because I explained to him my confusion from my childhood. So, I am again in search of a doctor that knows what they are doing in my treatment/care. It’s so hard not having insurance to get a doctor to see me anyways, which I think is RIDICULOUS because if I were a doctor I would be in it for the ability to help and save lives, not the money. That would just be like the pretty ribbon around the package. Anyways, if anyone knows of a doctor here in FL that could help me I would really really REALLY appreciate the referral. In the meantime, please keep me in your thoughts and prayers. All of you are always in mine! God Bless and I hope everyone had a magnificent Thanksgiving!

I went to the Mayo Clinic in Rochester, MN. They also have a facility in Jacksonville, FL. This is a wonderful organization - and they handled my situation so easily. They really knew what they were doing.

Cassandra…these doctors just don’t get it…you are correct. However the best I can do is I have an appointment with my doctor on the 16th and will ask him. He goes world wide lecturing and teaching on AVMs. I will try to call him this last however I am having surgery this morning for probable breast cancer on top of all this “head” stufff. I keep all in thought and prayer on this site as no one ‘gets it’ - what we are going through just to feel well is tough enough and then the fact the support isn’t there…not right. Keep hope going; I will try to cal my dr. in NY for you this week…keep me in prayer too…leaving in a bit for the hospital. God bless you and none of us are for ‘research’…if I stayed with my first neurologist I probably wouldn’t be here…you need skilled doctors who know about this rare conditoin. Will get bac to you asap xoxo Mare PS I stopped looking for pretty ribbons in the health care system…

Hi Cassandra,

I’ll keep you in my thoughts and prayers and hope you can find a doctor who actually can help you.

Take care,

Debbie

Mike Guarino.
You said you know some doctors in Tampa?? Let me know what you know please because my face is swollen where my AVM’s have been centrally located and these doctors in Bradenton don’t know what they are doing with me and I’m so over it. My face is pulsating and throbbing and they gave me AMOXICILLIN AND LORATAB for it! They said they never even HEARD of my condition and that they there for and understandably couldn’t treat me for it. I am tired of the run around. I am tired of wondering if and when I’ll be okay. I was suppose to have a check up surgery again by over a year ago. I’m at a loss almost. I have Dr. Cliff Davis out of Towers Intervention that has it set up with USF for me to be able to have a procedure done after New Years but before that he can’t really do much without me having some kind of insurance. He said he’d write me a physician’s referral when applying for emergency medicaid so I’m going to do that ASAP as in tommorrow but uuuggh. I’m about to pull my hair out!
&. To top it off. MY JOB. My job as a waitress and I won’t say where. Told me that I cannot work until I know for sure what is wrong and even then if they don’t want to deal with the liability of it?! HOW AM I SUPPOSED TO LIVE OR MANAGE? I don’t know what to do… I don’t know what to do!! Applying for disability, they denied me 3 times saying that I have too much drive and ability to succeed and therefore I am not disabled. OK, so I am ambitious, I want to do amazing things with my life and I COULD do amazing things with my life but HOW am I supposed to do ANYTHING if I am not okay HEALTHILY? Makes NO sense to me! & what the heck is the difference between disability and temporary disability?? I’m only 21 years old. They say kids don’t come with instructions. Well I was a kid that went out into the world on and as my own once I tured 18 and I don’t know what I’m supposed to be doing or what is out there or HOW to go about all this. I’m scared. I’m confused. I’m determined and strong and stubborn and I’ve got a LOT of life in me but I DON’T KNOW WHAT I’M SUPPOSED TO BE DOING ANYMORE it seems like no matter how hard I try to be successful or happy something always has to be a problem or an obstacle or diversion from the path that seemed to be going well…
:’(