Hi friends
1 year ago, I underwent a successful bilateral transoral styloidectomy for ES. Prior to this, MRI veinogram showed compression of internal jugular vein and carotid as well as a possible small stroke of the distant past/anatomical anomaly.
2 months ago, I began experiencing edema in my legs alongside pain in my pelvis and lower right back. Swelling was worse in the right leg. ER doctor ordered an ultrasound of my leg to check for DVT.
No DVT but Dr found reduced femoral blood flow and lymphadenopathy of groin nodes. He suspects something called May-Thurner syndrome.
Sounds like this is a vascular disorder that tends to present in third to fourth generation of life. I’m a 33 year old female.
Anyone else have this with your Eagle’s? Recommended approaches for testing or treatment?
So sorry to read you’re having problems, but pleased that the ES surgery was a success. I’d never heard of May-Thurner Syndrome, so learnt something new! I’ve not heard any mention of any members having it either. I hope that you’re able to get this officially diagnosed & treated, sending you a hug
I have been having trouble with my legs. A few months ago, Dr. Hepworth suggested that I may have this as well. I googled it, and the symptoms didn’t really fit. But you are making me think maybe it would be worth pursuing an ultrasound.
I’m so sorry your body has come up with yet another rare syndrome! I, too, have never heard of May-Thurmer Syndrome. Has the doctor made any recommendations for how it’s treated or was it just suggested as a possible diagnosis? It sounds uncomfy but hopefully not debilitating & even more hopefully it’s treatable if that is what you have.
I’m sorry for your situation, too. How distressing to be dealing with potential M-T Syndrome when you already have ES in your radar. I hope your leg trouble either resolves on its own or ends up being something easy to treat.
Seems to me that one compression syndrome is often associated with others…many of us with EDS seem to find themselves investigating Renal Nutcracker Syndrome, May-Thurner, and other potential compressions. I started out investigating NCS due to an MRI showing comoression at the renal vein, but blood seemed to be flowing fine.
I know people who have blood flow issues from head to toe, and the question for them is which way to treat? Bottom up, or the other way around? I think it’s very important to assess the whole vascular system and make a plan with a very experienced team. Consider a venogram with sonogram which takes into account the entire system, perhaps. And find a doc very experienced in May-thurner. I’m on FB groups for pelvic congestion syndrome, NCS, MTS, etc…seems there are many crossovers.
Thank you for this information. It never ceases to amaze me how many things can go wrong w/ our very complex bodies. It does make sense that some things are linked to others.
