I don't know whether to cry or scream or what but here's how my visit went at the Lymphedema Wound Clinic today.
When I arrived I took a look around and everyone there had one foot on a banana peel. I thought they would send me home and tell me to come back for Mon, Wed. Fri. for massage treatments, cause I didn't look that sick at all.
The doc comes in , takes a 2 second look and says: Well, you have lymphedema, venous insuffienciency, and hema something or other which means I have deposits of protein and serum that has colored my skin with tiny brown dots. Honest, I could barely see them. He said your feet are cold and you have swelling up into your calves. There is no question about it.
(I thought I might have cellulite in my calves, but he told me on someone of my size Petite 8, that that isn't the case.)
And Heres the TREATMENT:
1) come in 5 days /wk for 3 hrs./day for manual massage, peripheral vascular leg pumping for 1 (maybe he said 2 hrs./ day, and then they will wrap my legs with thick ace bandages that I must wear for 6-8 wks 24/7.
WHAT??
And since lymphedema isn't curable, once I get to maintenance, I must pump my legs every day for 2 hrs./day for THE REST OF MY LIFE.
My quack cardiologist blew off my questions about the edema. Told me not to worry. Said it was nothing.
All this is the icing on the cake to other events of the day: the rheummy called and said I need an MRI of my neck as the x-ray that was lost for 6 wks revealed herniations and pressure on nerves that have made my fingers and palms numb (trading sides.) for the past 7 mos or so.
The lymphedema doc says I need to take the DVD of peripheral and arterial doppler test to another cardiologist and he will re-read the test. I'm wondering if we fix the venous insufficiency if that will help the lymphedema?? And the treatment: passing a tube through the femoral artery to ablate the vein. Great.
The neuro I will see on Mon. listed on one of my clinic visits that I have a lesion on a nerve in my left wrist. He never told me this or treated it. I only noticed it as I was getting this ready for the rheummy. I'm livid.
I feel like the docs have totally failed me. I had to fight for follow up. I had to fight for a diagnosis, all the while directing their dumb butts and suggesting what should be done next.
After all the lab tests and proof of illness, I still get labeled with this "it'a all in her head she's a nut case " diagnosis.
My high school friend died Mon after having left arm and shoulder pain. She went to an Emergency Clinic in Galveston , they gave her a cortisone shot in her shoulder and sent her home. She made it to the front porch of her house and died, where her family found her.
It's just too much. I am so disillusioned with medical care today. I don't know if any of this made sense. Sorry to vent this way.
Please ladies, don't give up and do your research. If you know something is wrong, keep at them.
And now my symptom du jour: glandular tenderness in my neck for the last 4 wks. What's happening to me now? More research. I must be in a flair.
No Florida Destin beach vacation May 13th. I won't be out of my mummy costume by then. I'm trying to laugh to keep from crying.
