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Does anyone have nutcracker syndrome?
Kidney & Bladder | Last Active: Mar 21 2:18pm | Replies (38)Comment receiving replies
I don’t know of anyone specifically with experience in nutcracker syndrome (and also I’m not in AZ, sorry =\) But I’m being evaluated for a similar or related condition: pelvic congestion syndrome (aka pelvic venous disease). I had never heard of it until a Mayo physician brought it up (long story).
Anyway, I live in Illinois, and when I got home I learned that it’s typically an interventional radiologist who treats these conditions. You might know that already, but I thought I’d mention it in case that might give you any ideas or a way to narrow down your search.
Thankfully, my PCP knew of someone. She works in the Vein Center at the academic medical center where I’m seen. Interestingly, none of my other providers, even those who sometimes come across patients with both nutcracker and pelvic congestion syndrome, knew about the vein center or that there were other IRs there who treat those conditions.
I was seen at Mayo Jacksonville and they did have me to a consult with an IR who I believe treats both. Maybe there is still someone at Mayo in Scottsdale?
Replies to "I don’t know of anyone specifically with experience in nutcracker syndrome (and also I’m not in..."
Hi I have been diagnosed with Nutcracker Syndrome through Dr Hong Park an Interventional Radiologist with Lutheran General hospital in Park Ridge IL. He treats pelvic Congestion with stents but recommends surgery for Nutcracker syndrome. He has told me he is now bringing my case to a board of drs at the University of Chicago who have unit there that specializes in this syndrome/surgery.
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Thank you! I appreciate your help and I am waiting for a call with Mayo Clinic to see if they can help me find an available provider.
I have been experiencing pain for a long time but these past 3 months have been rough, which led me to a long, drawn-out process of test after test. I did a CT scan and I too was diagnosed with Pelvic Congestion Syndrome. I was referred to a Vein Center to be treated for the syndrome, however, after this new provider reviewed my CT scans, he also diagnosed me with Nutcracker Syndrome (NCS) and May Thurner Syndrome. (So I went in with 1 syndrome and left with 3). The provider literally told me to go home and "Google" it and said that he wouldn't be able to help me. He said he wouldn't correct the May Thurner Syndrome until my leg was swollen and in extreme pain, and also told me to go on birth control (hormones) to at least treat the PCS ... which my PCP strongly disagrees with due to hormones causing clots, mixed with my other syndromes, would put me at a high risk of stroke.... But anyways, he said no one would be able to treat the NCS. This obviously made me feel pretty defeated, but I started doing my own research and spent an entire day calling all across Arizona looking for someone who a) knew what I was talking about and b) didn't think I was a nutty-nutcracker/crazy person (I can't blame them, I mean it sounds like a joke diagnosis). But, I stumbled upon 1 provider here at Mayo Clinic in Scottsdale, but apparently he's been doing an out-of-state fellowship for the past year or so. So I seem to be out of luck for the time being.
I hope you are able to get the care you need and I will be curious to hear if your new provider will be able to treat your PCS. I have learned there are a few options to treat PCS, but haven't been able to determine the best route. Looking forward to hearing positive news from your journey!