My PCP first said that you can't have this condition if you are post-menopausal. Wrong - any woman who has had multiple pregnancies can have it no matter what age. Men can also have this condition - my young son (age 26) has it. Also, a vascular electro-physiologist can treat it from what I was led to understand. It is treated using hormone therapy, embolization or surgery to remove vein.
Ah, I see! Thank you for sharing your story, and it is true... you need to be your own advocate.
So from what I understand, from research and from the vein specialist showing me the Nutcracker Syndrome (NCS) on my CT scan, in my case, it appears the Left Renal Vein (from my Kidney) is being compressed between my Abdominal Aorta and Superior Mesenteric Artery (causing the nutcracker effect). The Vascular specialist said he couldn't treat me and said I probably developed the syndrome when my veins and arteries were forming in the womb. I'm 32 and relatively healthy minus these issues.
I can't do the hormone therapy, as my PCP says it could cause blood clots and put me at higher risk of having a stroke. (I was also diagnosed with Pelvic Congestion Syndrome and May Thurner Syndrome, all at the same time of the NCS diagnosis). I haven't heard of a "Vascular Electo-physiologist", but I will definitely check that out! I am desperate for a solution here. Any treatment recommendations are welcome and if they helped or not!
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.
She actually does now but not back in feb when she was dx with mals. Mals is more upper pain with nausea vomiting and weight loss. My daughter seems to have more than one issue. we are still trying to find the source of her pain. But in regards to MALS - it can be dx with a special velocity flow ultrasound and a specific CT scan. I apologize i did not see this post until now. I hope you have found answers and your daughter is better
She actually does now but not back in feb when she was dx with mals. Mals is more upper pain with nausea vomiting and weight loss. My daughter seems to have more than one issue. we are still trying to find the source of her pain. But in regards to MALS - it can be dx with a special velocity flow ultrasound and a specific CT scan. I apologize i did not see this post until now. I hope you have found answers and your daughter is better
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!
Ah, I see! Thank you for sharing your story, and it is true... you need to be your own advocate.
So from what I understand, from research and from the vein specialist showing me the Nutcracker Syndrome (NCS) on my CT scan, in my case, it appears the Left Renal Vein (from my Kidney) is being compressed between my Abdominal Aorta and Superior Mesenteric Artery (causing the nutcracker effect). The Vascular specialist said he couldn't treat me and said I probably developed the syndrome when my veins and arteries were forming in the womb. I'm 32 and relatively healthy minus these issues.
I can't do the hormone therapy, as my PCP says it could cause blood clots and put me at higher risk of having a stroke. (I was also diagnosed with Pelvic Congestion Syndrome and May Thurner Syndrome, all at the same time of the NCS diagnosis). I haven't heard of a "Vascular Electo-physiologist", but I will definitely check that out! I am desperate for a solution here. Any treatment recommendations are welcome and if they helped or not!
I am looking into this now as it is suspected that my daughter has NCS. there is a group in Maryland and in Texas that treat this with surgery. I didn’t save the information but I found it and I googled doctors that treat NCS
I was just diagnosed this year with Nutcrackers Syndrome, I’ve been suffering for years now the pain is barely manageable but I’m hoping to get help from the doctors at the Vascular Institute there at Mayo Clinic in Rochester
@vlk420 I have suffered with both vascular disease and CKD for many years . I have had many vascular surgeries over a 40 year term and hsve also been treated by Mayo vascular docs in Scottsdale, AZ. It sounds like conservative measures have not worked for you, unfortunately. I have never experienced Nutcrackers syndrome, but it appears surgery may be needed, possibly including a stent. Obviously, I am not a doc, but he/she should be informed for additional testing,, and possibly the need for surgery.
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Ah, I see! Thank you for sharing your story, and it is true... you need to be your own advocate.
So from what I understand, from research and from the vein specialist showing me the Nutcracker Syndrome (NCS) on my CT scan, in my case, it appears the Left Renal Vein (from my Kidney) is being compressed between my Abdominal Aorta and Superior Mesenteric Artery (causing the nutcracker effect). The Vascular specialist said he couldn't treat me and said I probably developed the syndrome when my veins and arteries were forming in the womb. I'm 32 and relatively healthy minus these issues.
I can't do the hormone therapy, as my PCP says it could cause blood clots and put me at higher risk of having a stroke. (I was also diagnosed with Pelvic Congestion Syndrome and May Thurner Syndrome, all at the same time of the NCS diagnosis). I haven't heard of a "Vascular Electo-physiologist", but I will definitely check that out! I am desperate for a solution here. Any treatment recommendations are welcome and if they helped or not!
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3 ReactionsDid you see a Vascular Surgeon yet
She actually does now but not back in feb when she was dx with mals. Mals is more upper pain with nausea vomiting and weight loss. My daughter seems to have more than one issue. we are still trying to find the source of her pain. But in regards to MALS - it can be dx with a special velocity flow ultrasound and a specific CT scan. I apologize i did not see this post until now. I hope you have found answers and your daughter is better
aslo ,we are looking into nutcracker syndrome, may thurner and elhers danlos
I think the Mayo Clinic in Rochester,MN has a vascular surgeon that has experience with this Nutcrackers
I also was diagnosed with PCS before the Nutcrackers. Did you get any treatment for the PCS?
Also look into MALS. GI can diagnose a specific ultrasound then a ct angiogram
I am looking into this now as it is suspected that my daughter has NCS. there is a group in Maryland and in Texas that treat this with surgery. I didn’t save the information but I found it and I googled doctors that treat NCS
I was just diagnosed this year with Nutcrackers Syndrome, I’ve been suffering for years now the pain is barely manageable but I’m hoping to get help from the doctors at the Vascular Institute there at Mayo Clinic in Rochester
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2 Reactions@vlk420 I have suffered with both vascular disease and CKD for many years . I have had many vascular surgeries over a 40 year term and hsve also been treated by Mayo vascular docs in Scottsdale, AZ. It sounds like conservative measures have not worked for you, unfortunately. I have never experienced Nutcrackers syndrome, but it appears surgery may be needed, possibly including a stent. Obviously, I am not a doc, but he/she should be informed for additional testing,, and possibly the need for surgery.
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2 Reactions