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.
There’s a Facebook group Nutcracker Syndrome that has a lot of information on doctors and procedures for NS. Make sure you go to a knowledgeable and experience physician that has treated others. So sorry you’re dealing with this.
i also was told, w/o blood in urine - not a problem, although my nephro at home disagrees. my colon also gets worse every year. severe llq pain and spasm prevents gas and stool from passing. i suspect my compressed renal vein has impact on llq colon blood supply issues - as well as a duplicated {LARGE) left kidney that has trouble staying up. on rare occasion, when pain is absent, the only way to keep it gone is to not eat. stopped working at 45 yrs. old after YEARS of relentless stabbing, burning, spasming pain. nephro wants me to go back to mayo and i want to but the last trip caused me major pain for weeks. i don't travel well. dysautonomia, scarring problems, chronic bronchitis & sinusitis, carpal tunnel surgeries, thyroid surgery, fibromyalgia, etc also make it hard to fit in my schedule. with my med record, major surgery could cause problems, but i'm so tired of living this way. if you saw me though, I look like an amazingly healthy, vibrant, strong, middle-aged female.
37 yr old mom of 2. I feel every word of this. I'm going on 9 yrs without treatment other than May- thurner. I believe I have nutcracker and popiteal at the same time. I pray for you. Stay strong.
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?
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.
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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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 ReactionsThere’s a Facebook group Nutcracker Syndrome that has a lot of information on doctors and procedures for NS. Make sure you go to a knowledgeable and experience physician that has treated others. So sorry you’re dealing with this.
37 yr old mom of 2. I feel every word of this. I'm going on 9 yrs without treatment other than May- thurner. I believe I have nutcracker and popiteal at the same time. I pray for you. Stay strong.
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.
That’s great! Thank you for letting me know, I don’t live too far from there! So grateful. I hope your surgery goes well!