Does anyone have nutcracker syndrome?

Aftern15 years, I have just been diagnosed with Nutcracker, but have other issues so going through more testing.

I have finally got a diagnosis of Nutcracker Syndrome. I suspected that I had it after reading in my medical report from 2017( unfortunately never was told of the results) the radiologist seen prominent pelvic congested syndrome and my GI saw that I have SMA all my symptoms pointed to Nutcracker, but when I told my GP he told me he didn’t believe it because I am menopause now, I told him I had been suffering severe pain on my left side for nearly 20 years now, they have been getting injections in my hips but not helping, they want me to do physical therapy but I can’t even walk sit or stand very long, I’ll keep you posted, this scary

Have you looked into Mals?

I hear and feel your pain and frustration, I hope you have a excellent team working on your side, it took so many test and yet my condition worsened till I got this Nutcracker’s Syndrome Diagnosis, CT with contrast, just last week, and now I’m still stuck because it’s so rare that only a couple specialty doctors know how to treat it, before it attacked my lower body I suffered nausea and vomiting , I had 2 heart attacks because of this, my veins on my left arm get tight and hurt 😞 too before returning to normal? I’m still very confused

Can you share with me on what else they did for you after the diagnosis of Nutcrackers, or what kind of treatment your currently receiving? Did they biopsy your kidneys?

Does she have a lot of nerve pain and issues with left sided pain

She initially had the severe pain mainly on the left. Then it moved to the right and now it is mainly right but it really is all over. And it never goes away. It’s constant.

So far I am waiting to see a specialist vascular surgeon who has experience with this diagnosis but it’s so rare that help is extremely limited it seems, I’m scared and bed ridden now daily, how can this happen?

Hello all!
I was just diagnosed with Nutcracker Syndrome and I am struggling to find answers on next steps. Has anyone here received care from a specialist to treat this rare phenomena? If so, how and who did you see that you can refer me to? I did some researching and called all over the state of Arizona to find someone who has a) heard of it and b) has experience treating it, but to no avail. There was one surgeon I found at Mayo Clinic here in AZ that was listed as being experienced in NCS, but they just took a fellowship in WI... so I am not sure what to do next. It blows my mind that there are now zero people here in AZ who have experience with this, but I am willing to travel to be treated. I am the kind of person that doesn't want to put a bandaid on it; I want to solve the issue now no matter what it takes so that I don't have so many more problems as I age.

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?