My Nut Notes

My Nut Notes

Below are some of my notes and reflections on the Nutcracker Syndrome, otherwise known as renal vein entrapment.  I feel somewhat scattered and random about all my thoughts on the "Nut" but I hope these notes can possibly help someone else in the future when reading this blog. 

First of all, I should provide a definition and description of this syndrome to give my readers background information and better understanding of what's going on inside me.  From Wikipedia, "the nutcracker syndrome (NCS) results most commonly from the compression of the left renal vein between the abdominal aorta (AA) and superior mesenteric artery (SMA).  The name derives from the fact that the SMA and AA appear to be a nutcracker crushing a nut (the renal vein)."

After learning of my possible--now almost confirmed--extremely rare condition called the Nutcracker Syndrome back in February of this year, after the gastoenterologist sent me for a CT scan for what the ER doctor had called the month before “unidentified GI pain” that happened to return right around the same time of my menstrual cycle a month later, I felt overwhelmed and hoping it wasn’t this strange syndrome that had something to do with my kidney…my kidney?!  I was having lower abdominal pain way south of my left kidney.  I had been told I was really healthy.  So why was I having this extreme pain?  But when my gynecologist attempted to get rid of what he thought was endometriosis causing my symptoms, through a laparoscopy in late February, it came up void of any signs of endo but confirmed the presence of big-time varicosities over my left ovary, a very rare thing for a gal like me who hadn’t even had a baby yet.

So I stocked up on loose-fitting pants without zippers after the laparoscopy in February, thinking I’d only need them till I healed from the so-called “simple” laparoscopy day surgery, but I continue to use loose-fitting pants over 3 months later.  I noticed that when I feel achy pelvic pain coming on that can extend to my thigh and/or sciatica, sometimes I also feel a weird type of nausea that kind of overcomes me and makes me want to lie down and cry.  This feeling and type of pain I really struggle with and I’ve noticed it also makes it extremely difficult to stay positive.  I usually cry and feel hopeless when this type of pain hits.  This could be because I have tended to have this pain on the day when a stabbing pain attack occurs also and the memory of those attacks has traumatized me a bit.

The stabbing-in-my-uterus pain I’ve experienced hits once or twice on roughly Day 6 of my menstrual cycle ever since my first “attack” in January.  This is the kind of pain that sent me to the ER and urgent care center two months in a row.  This is the kind of pain that makes me cry out uncontrollably until I almost puke.  This is the kind of pain that makes me feel like God has prepared me well for labor.  When combined with nausea, it is literally UNBEARABLE.   Taking one vicodin with food and then a little later a half a pill seems to take away the stabbing feeling, and then I’m able to calm down but still left with the underlying pain.  I’m thinking valium could help calm me down quicker and then be able to breathe more deeply and not tense up as much.  Because my whole body can ache after an attack like that.

I have to believe that all this has happened when it happened for a good reason.  I believe a higher power, the Divine intervened and protected me from this pain until I was ready.  Even though I may not have felt quite ready to handle this pain when the first pain attack hit in January of this year, I was already physically fit, more emotionally stable after a tough and unexpected breakup and divorce in 2011, fully loved by a wonderful man, beautiful friends, amazing mom and supportive family and I had done many things I hadn’t even dreamed of doing in the past year, like pole dancing and burlesque performing.  I had begun to feel the weight of overactivity from the year before but I was beginning to center myself and try to be more balanced by caring for myself and having fun.  I also think that my stopping of the birth control pills I’d be taking since I was 16 because of extreme menstrual cramps back then and my weight loss may have contributed to the timing of the “Nut” surfacing (or resurfacing) in me.

I also have to trust that fixing the nutcrackering of my left renal vein will in turn relieve the pressure on my left ovarian vein and thus lower or eliminate the pain I am currently experiencing.  I know that for some women their varicose veins need to be tied off or coiled through embolization because they are too shot, but I have to trust what the vascular surgeon at the University of Washington, who sees 1-2 Nutcracker cases each year, says about my varicosities, that they are “unimpressive.”  This is positive!

I’ve become very “proactive” or as I may call it, obsessive lately about researching topics like: healing pain, chronic pain, managing stress and emotions, assertiveness, and anything to do with pelvic pain.  But I now feel inspired to share what I’ve learned or at least what I’ve experienced so far with the world, in hopes of helping someone in a similar predicament.  I think I’ve almost fully decided on going through with the open surgery, despite the 6-inch incision, 4-5 days in the hospital and at least 6 weeks of recovery.  It sounds like this is what’s best for my future, because my future includes having babies and being a momma.  If I only focus on my health and not on outside factors like being gone from work after taking on the supervisor role, the ugliness of a big scar down my newly skinny belly, the lack of energy that’ll come from surgery, the long recovery time, I think the open surgery is the best long-term solution.  I will not need to live my life in fear of the stent moving or live my life with constant pain whenever I try to dance or walk or stand for longer than a few minutes.  I just have to keep telling myself this, especially when the big surgery day comes and after when I’m healing slowly and starting to get antsy.  

Things that have helped me with my “Nut”

• Acupuncture and cranio-sacral therapy have allowed me to stand and walk around during my period for a couple of hours or more
• The heating pad is my friend and Castor Oil on a soft flannel with a plastic baggie over it and the heating pad on top is very soothing
• Soaking in Epsom salt baths has at least helped relax me and the magnesium is supposed to help minimize the bulging of varicose veins
• Envisioning and regarding my overworked, varicosed ovarian vein as “Vampirita” after watching the latest Twilight movie where Bella unconditionally loves her unborn vampire baby despite the baby sucking the life out of her
• Not being afraid of the pain and feeling strength in knowing or at least having a better idea of what (the heck) is actually going on inside me
• Affirmations have also definitely helped me come back to a positive outlook and attitude about my life when I feel like all hope has been lost or when I’m just plain frustrated, tired and in pain
• I've also been trying some different supplements to help improve circulation and to help decrease the bulging of internal varicose veins.  These are a few that the nice folks at Super Supplements recommended: Diosmin (a special bioflavonoid that strengthens the capillary walls), horse chestnut seed extract and butcher's broom root (both good for circulation and vein inflammation), Gotu Kola extract, celery seed extract, hesperidin (also good for regulating body temperature fluctuation), hawthorn and vitamin C
• I think following an anti-inflammatory diet might be helpful as well for general wellness and to help decrease the pain of inflammation
• Finding a supportive community of women who are going through similar struggles with their health called the Pelvic Congestion Syndrome Support Group, found on Facebook

Helpful links about the Nutcracker Syndrome

• Personal accounts of people suffering from the Nutcracker Syndrome: http://www.medhelp.org/user_journals/show/220007/My-Nutcracker-Syndrome
• Description and images of the Nutcracker: http://en.wikipedia.org/wiki/Nutcracker_syndrome
• A different perspective and hypothesis on the Nutcracker: http://thinkccsvi.com/2012/01/20/lrv-youre-so-vein-you-probably-think-this-post-is-about-you/

I'd like to also include the names of doctors with experience treating the Nutcracker, as I have heard in some parts of the United States and other areas in the world, some doctors refuse to treat this syndrome because of its rarity and lack of information about it available.  My vascular surgeon, Dr. Mark Meissner at the University of Washington Vascular Center has treated various cases of the Nutracker Syndrome.  I feel very lucky to live in the Pacific Northwest where there are doctors who know about this rare condition.

If you are suffering from this rare condition, please don't give up hope. There are answers and solutions out there, but it does require a lot of patience and perseverance. Best of luck to you!