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Nutcracker syndrome
I am a 50-year-old female dealing with Nutcracker syndrome and May-Thurner syndrome diagnosed in February. I also have neurological disorders, including adult onset, epilepsy, and brain aneurysms. I am a four-time survivor of cancer in addition to issues unknown to me until recently With my bladder, and which I am seeing a urologist that is a specialist in the field. I had a hysterectomy which I found out was not the root cause of it, and I was misdiagnosed. I am experiencing extreme pain on the left side there is severe stenosis coming up into the bladder in the kidney. My balance is off my entire left side from the lower abdomen, traveling up on and over the iliac crest, and up to the middle of my rib cage are completely affected and is affecting my quality of life. Has anyone else ever experienced this. I am a physically fit individual, never had any children do not have diabetes however I’m also experiencing highly fat accounts and also going through multiple testing for cancer. Any input would be greatly appreciated because my quality of life at this point is terrible I have also been going through testing and had malignant neoplasm removed for my colon and have to want to go more testing before they will even consider doing the surgery, but I am not a candidate for a stent to open up and so it will be a transposition I was sold of veins and arteries. Again, any input would be greatly appreciated or if someone on the Mayo Clinic staff sees us please feel free to contact me in my email. I would be so very appreciative and grateful. Thank you.
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Hi, @erinegannons, and welcome. What you’re going through sounds really challenging, especially with so many changes happening. I’m so sorry you're experiencing so much pain. Being in pain for that long can be so exhausting.
I've added your conversation to the Heart & Blood Health and Kidney & Bladder communities so that others experiencing Nutcracker or May-Thurner syndrome might be able to offer their experiences.
May I ask, have any of your doctors talked with you about options to help manage your symptoms?
Hello, my name is ERIN. Elizabeth GANNON SOLEM and I have brain aneurysms and conjunction with Nutcracker phenomenon as well as May Thurner phenomenon. An addition to that I’m a full-time survivor of cancer as well as what they believe a high extreme white blood cell count, which is possibly a leukemia issue with cancer. My main issue is as vascular. I am currently working with rochester General, Dent Institute, UB neurosurgery, and I am at my wits end. My quality of life is horrible. I am very concerned about how all of this affects my brain aneurysms as there are white spots now affecting around the current active brain aneurysms of which I had three and now they only considered two to be active on the left upper temporal lobe and the rightlower at the base of my skull. How do I get in connection with someone at the Mayo Clinic . I just had my MRI which showed positive evidence of more white spots around the current active aneurysms which have not shown any change however, they are still present but the white spots have increased due to the increase in the migraines and the intensity which have become worse in the last four years due to the Nutcracker and the May thurner phenomenon . I’m a medical massage therapist - or I should say I was because I cannot work and my quality life is horribleand I know that this is vascular and it’s an innate form. I am also having issues with a bladder which again affects a lower extremity of Nutcracker, but I need a lot of coordinated care. Can someone please help me?
@klp I need some assistance with coordinator care because they are treating the body individually instead of as a whole and I’m really struggling to find the right care. I have posted another comment if you could please assist me in this I would be so gratefully appreciative thank you very much.
@klp it is an anomaly for an individual to have as many things going on however, I know I’m not the only person that could have something like this, but I just turned 51 and I don’t know where else to turn. I’m at my wits end on how to figure this out except for doing it myself. I need some professional advice on where to turn and get everyone on the same page to get my life back on track so I can go back to doing what I love in which I cannot do right now. I cannot work any lead environment as a physical work was my last resort and to help people as a medical massage therapist and I miss it so very much my business part of the ground in 2020 and rebuilt it and then became ill late 22. Grateful for anything you can do to assist me. My kindness and I hope you have a blessed weekend. Thank you.
@klp
I apologize for all of these, but that was supposed to say lighted environment. I walk around in sunglasses all day due to my aneurysms my epilepsy I don’t even drive currently and haven’t due to my neck and shoulder issues. My head going through a window this is become a nightmare, but I wanna get well and figure this out. Coordinated care is the best way to do it in addition to what is happening with my lymph system, everyone is so segregated on it and I can’t get it done when everyone is so segregated can you please assist me with this?
@erinegannons, if you would like to seek the opinion of vascular experts at Mayo Clinic, you can submit a request here: http://mayocl.in/1mtmR63.
You can find more information about the appointment process and the answer to some common questions here: https://www.mayoclinic.org/patient-visitor-guide/all-about-appointments
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1 Reaction@klp yes thank you I will do so in the morning. I am very concerned and needs definite help with coordinating care. Thank you so much for the response back and I apologize for the late reply this evening. Have a wonderful day tomorrow and I will be in touch with details. Again, thank you so very much. I appreciate your efforts in my endeavor to better my health. Erin Elizabeth Gannon Solem.