Anyone have nutcracker syndrome?

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?

I have Nutcrackers Syndrome and it has me mostly bedridden, I’m totally disabled from it currently

IDK if it’s possible to have both Nutcracker Syndrome and Jackhammer Syndrome but I believe the Doctor is going to tell me this in a few weeks. Just 2 days ago I thought I was having a heart attack just beginning to sip my coffee, my chest muscle hurt so bad I couldn’t swallow and chest hurt all day and night

I just found out I have Nutcrackers Syndrome

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.

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.

Hi I was diagnosed with Jack Hammer Esophagus which is extremely rare disorder but it’s hard to get diagnosed unless you are referred to the right specialist. I’m from Indianapolis, Indiana and I was referred to the IU Hospital Motility Clinic for evaluation of my terrible symptoms I was having. Nausea, Vomiting, Choking, Chest Pains, Felt a lump in my throat all the time when I swallowed, Heartburn, LPR Laropharengeal Reflex Disorder,Shortness of Breath. After several choking episodes, going back and forth to the ER for chest pains thinking I was having a heart attack, they sent me to several different doctors and specialists before they found it! Started with an ENT , Swallow Study, then Cardiologist, Pulmonologist, Gastroenterologist then a Motility specialist and I had 2 extensive tests first was a test where they put a probe at the back of your throat that goes up your nose and then back up your throat and the give you a monitor that you wear for 24 hours to collect data every time you had to cough, belch, vomit,heartburn, chest pains to say this was an easy test it was NOT ! The probe made me gag all night long! It was horrible to say the least and I found out it was waking me up in my sleep as well! So when I went back to specialist they downloaded all my data from the monitor and they were absolutely shocked because my Acid Reflux was so bad but also my PH level was abnormal it was extremely low they said that they had a hunch what I might have but it was extremely rare it’s something that you are born with! So they said we are going to send you for one more test to confirm the diagnosis of what we believe you have! The procedure was called a Esophageal Manometry test and it measures the pressure you have in your lower esophagus and stomach. But this time I had to have copper tubes that were much bigger than the first test I had and they make you take like 20 sips of Gatorade and then they slowly insert each tube up each nostril and go all the way down to your stomach and LES Lower Esophageal Sphincter. First try was unsuccessful because I threw up as soon as I started to drink the liquid and the tubes we’re getting stuck on something! It was a nightmare trying to get past this blockage I had that was making throw up every time but the 2nd try was successful and they were able to see in the inferred screen what was making me so sick and choking all the time! They said oh here’s your issue and the problem right here! I was so relieved that they had finally found it and it actually had a name! Jack Hammer Esophagus it’s a very rare condition where the LES Lower Esophageal Sphincter wasn’t functioning right so that caused all my food to propel quickly back up into my throat and upper esophagus causing me to choke as soon as I ate or drank! They said that my pressure in my esophagus was so powerful that I also had bad Acid Reflux Disease as well. I said well ok what can we do about it? I was told oh there’s only one fix that is surgery to reconstruct your lower esophageal sphincter and also have a surgery called a Nissen Dysplundification on my upper esophagus to get rid of the Acid Reflux Disease that medications did not help at all! So I ended up having 2 different rare disorders at the same time and 2 surgeries to fix it ! The surgery for my lower esophagus is called a Hyler Myoectomy I probably butchered that spelling! I was in surgery for 6 hours and ended up staying 10 days in the hospital to fully recover but the prep for the surgery was the worst because I could only do liquids for 4 weeks and then afterwards nothing but liquids for 4-6 weeks it was a long process but it was so much worth it! I’m almost 2 years out from my surgery and I feel great ! No nausea, vomiting, chest pains, Acid Reflux, GERD, no more shortness of breath, no more choking! I can now eat anything I want without any issues or problems! This surgery saved my life! My doctor who did my surgeries was amazing! The Nissen Dysplundification surgery consisted of the surgeon shortening my esophagus and bringing my stomach up higher and wrapped it around my esophagus to prevent acid reflux from ever happening again! It’s the only sure thing for severe acid reflux disease but it works! Now there are some disadvantages with the Nissen though! You can’t throw up or vomit anymore but if you have to belch or if you have to vomit it can make you have diarrhea and belching can cause belly pain but after the gas has been expelled then you will feel fine! Also another downfall is that chocolate will be your enemy meaning you won’t be able to digest it well and it causes diarrhea as well as break down of your Nissen from the acid content in chocolate so that totally sucks if you can handle that then the surgery will be worth it! I suffered for 3 years before I got diagnosed! Like I said with it being extremely rare disorder it was hard pinpoint the problem. I would start with a motility specialist first and go from there ! So sorry you’re going through all this! If you want my surgeons information I can give it to you as well! Good luck and stay positive and hang in there and be your own advocate!

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!

Thank you for sharing your story! In the GI realm, I too have GERD, as well as Eosinophilic esophagitis (EoE), but have never heard of Jack Hammer Esophagus. I'm so thankful for you sharing your story and I will keep it in mind moving forward!