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Think I’ve got “May-Thurner Syndrome” (MTS)
Posted by Melodie on August 28, 2009 at 6:42 pmGod answered prayers in the most unexpected ways. :) Following the removal of bladder stones in July 08, my left foot and ankle remained swollen. As time moved on, none of the four doctors I talked with could tell me how to relieve the swelling. Since it didn’t really bother me much, except for the fact that I could only wear sneakers and fip flops, I ignored it most of the time….until summer weather set in. Recently it seems to have gotten worse and so I began to pray about it.
Yesterday while going home with my vanpool, I rode shotgun so I could keep the driver company…I always sit in the third row back. I began to talk about my foot problem and she mentioned there was a radio show on where two local naturpathic doctors answers questions. I called in. I was nearly certain they would advise me to take 1/2 teaspoon of cheyanne pepper in warm water 3Xs a day or something similiar.:huh: Lo and behold…I was told I have “May-Thurner Syndrome (MTS). And also that they can put a stent in to help resolves that problem.
I was so happy to finally find someone who could give my aliment a name and they in turn said how happy they were that I was healthy enough to be here after fighting BC…I then mentioned I had designed my own website and they mentioned it on their show. I’m not sure now which I am more excited about…the fact that I finally got dx’d or the fact that my BC website got some good exposure.
http://my.clevelandclinic.org/disorders/vascular_abnormalities/vs_may-thurner_syndrome.aspx
(guess I don’t know how to make these links happen)
Anyway….I’m a much happpier warrior! :laugh:
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightMelodie replied 15 years, 5 months ago 5 Members · 9 Replies9 Replies-
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. WrightSince 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 conduitPat – 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. WrightGuestAugust 29, 2009 at 2:50 pmOnly 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.
PatGood 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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.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,
GracieNo, dear, the radio didn’t make the dx…these are actually two doctors, male and female, who have their own practice just outside of Seattle. And why shouldn’t I accept the response they offer….makes sense to me…and besides….none of the yawhoos in the medical profession who have looked at me, have even tried to give me a clue as to what is wrong or what can be done. They just said something like, “that’s interesting, that’s odd” etc.:angry: I find that annoying. They could at least send me to another doctor or check with another physician…or something. I guess they figure that since my life was saved by the RC that I should be thankful enough not to let other problems disturb me. If so, they are wrong. I am thankful, VERY thankful…but I do have high expectations and think the medical profession should do a better job of “listening” to us patients…no matter what our concerns. :angry: Thanks for listening. Now I feel better and will be quiet.
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightGuestAugust 28, 2009 at 9:59 pmMelodie..you let a radio show make a diagnosis? MTS is usually caused by a DVT…..which then you should have a doppler to have it checked out. And it would be a good idea to see a cardiologist and an echo cardiogram just to make sure all things are working in that department.
PatSorry, I forgot to add some definition of this MTS…
this is caused when left iliac vein is compressed by right iliac artery which increases risk of deep vein thrombosis in left extremity….result of pelvic surgery. Oh joy!
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightSign In to reply.
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