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Think I\'ve got \"May-Thurner Syndrome\" (MTS)

10 years 1 month ago #27604 by Melodie
Funny you should mention compression stockings...have been thinking about going out this week and checking some out. I have a prescription from months back but put off getting any because menapause always has me feeling so overly warm, seems to me that will overheat my foot. But maybe it s worth a try and if I were to fly I think I would be smart to wear them.

My urologist suggested I first see my family physician and get some tests done to see if I have May-Turner syndrome and then see a vascular physician. I don't intent to see my family doctor, however, because there would be no point...she would only charge my insurance to send me on to another doctor...I don't have to get a referral so I can make my own appointments. I've heard of a group of vein specialists in the high rent district outside Seattle so I might try them to see what they would do. My pain occurs usually at the end of the day and sometimes iceing it when I go to bed helps. I guess there is just no way anyone can get through an RC without some kind of after effects. :(

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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10 years 1 month ago #27593 by balihigh
Since my RC last September, I have had swelling in my right leg, ankle, and foot. My doctor ordered an ultrasound which showed no blockage or problem with the arteries or veins. My problem is lymphedemia which is fairly common among people who have had their lymph nodes removed especially breast cancer. I have gone to physical therapy to learn how to massage my leg and have a special compression stocking I now wear. I wish I didn't need to do this but it is my side effect and it does help. I am also going to look into a new surgery that is being done in a couple of locations, MD Anderson for one, to return the flow of lymph in my leg.
Balihigh

female 60
1/08 dx 4 tumors TURB
T1 G3
12 BCG + interferon
5/08 another tumor/TURB
9/08 RC illieal conduit

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10 years 1 month ago #27584 by Melodie
Pat - I know you mean well with your comments...sometimes I just get impatient with the much and mire of the system we have to wade through to get something done. When my urologist got my email, he was happy to find that I may found an answer to my complaint...he said he was unfamiliar with May-Thurner symdrome. Well, if nothing else, at least he is a bit smarter now. I'll keeping looking for a "good" vascular physician so I can get this taken care of...was just hoping it would go away but it seems it isn't. :ohmy:

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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10 years 1 month ago #27577 by Patricia
Only thinking of you sweetie........
The scope of practice varies widely between jurisdictions, and naturopaths in unregulated jurisdictions may use the Naturopathic Doctor designation or other titles regardless of level of education.
I would definately get a follow up with a vascular specialist as any swelling in the foot, ankle , leg should have a cardiac work-up. Thats how they found my DVT...mine pretty obvious so the doppler confirmed it and the exact location but i also had follow up echo cardiograms as some swelling persisted in the foot and ankle for about 6 months after surgery and treatment for the DVT.
Sorry your doctors won't listen.
Pat

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10 years 1 month ago #27575 by mmc
Good deal. So I'm guessing the next step is to see someone who specializes in this for confirmation and treatment plan?

Given the reasons for it, it would actually seem that surgeons doing abdominal work would be somewhat familiar. Go figure.... Well at least you have a path to follow now to check it out and get it taken care of.

Let us know how that goes.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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10 years 1 month ago #27571 by Gracie
Melodie - I'm so glad that you finally have an indication of what it could be! I suppose that you might look for a vascular doctor that could confirm the dx and treat the condition.

I agree - most doctors don't listen, really listen - just process patients through.

Please keep us posted.

Best,
Gracie

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