Does anyone have nutcracker syndrome?

Posted by taphillips001 @taphillips001, Aug 4, 2011

Does anyone have this.....I need help!!

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Yes I have it too. Have you been seen by a urologist and a vascular surgeon. What are your symptoms ?

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My daughter is seeing a vascular surgeon this month. She has had pain after eating and nausea all her life.

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@lincolnlady

Yes I have it too. Have you been seen by a urologist and a vascular surgeon. What are your symptoms ?

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I have pain and nausea everyday I don't even want to eat anymore. They said my Colon doesn't function properly so that's what they think is causing it but I also have a compressed renal vein which can cause nutcracker syndrome. I don't know what's going in but they said not to worry about the renal vein unless my red blood cells are low or peeing out blood... Life is getting hard.. I hate feeling like I'm in this alone

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@lincolnlady

Yes I have it too. Have you been seen by a urologist and a vascular surgeon. What are your symptoms ?

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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.

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Yes I had nutcracker syndrome, I was diagnosed and treated at Mayo Clinic for this. Did you ever find the help you needed?

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@vbperez1

Yes I had nutcracker syndrome, I was diagnosed and treated at Mayo Clinic for this. Did you ever find the help you needed?

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Thank you for offer of support @vbperez1 and welcome to Connect. Can you tell us more about the treatment you had, your recovery and how you are doing today?

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@vbperez1

Yes I had nutcracker syndrome, I was diagnosed and treated at Mayo Clinic for this. Did you ever find the help you needed?

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No new treatment with regard to Nutcracker for me.
Being on disability for > 5 years, I've taken time to find as many helpful therapies as possible. I'm doing somewhat better than when I posted originally, but there has been no magic bullet. In general, here are some (there are MANY more, but I've never figured out how to put them all in one place) thoughts on surviving:

ROUTINE:
If out and about 1 day, next day or 2 are for resting, gentle stretching, sunlight (if available) -- NOT for paying bills, etc.

NEVER: Lay on my left side.

NEVER: Lean in a chair in a way that stretches my left side.

If sitting, and I get the sharp, burning pain in LLQ - GET UP! !! Lie down, elevate hips, Heating pads. Sitting through the pain for even a few minutes, I believe, cuts off blood supply to LLQ organs, and pain (which then lasts for DAYS) is due to ischaemia (tissue damage from lack of blood (oxygen) supply).

THERAPY, etc:
Pelvic Floor therapy - I need multiple sessions every few months to keep muscle spams calm.
- I've found using a different therapist every so often allows me the benefit of varied treatment ideas. The last one had me work methodically at belly muscle control, and now (6 months later), I'm able to LIFT organs in my belly up (WHILE BREATHING COMFORTABLY) so they leave my colon and bladder uncompressed, which has a significant impact on pain.

Trigger point injections vaginally every few months (I have scar tissue that complicates this whole mess).

I finally found a seat cushion that works for me in the car.

Car seat heater - bought one cheap to put on my normally cold seat.

Cupping of tight muscles. I found very affordable cupping kits online.

Hot Epson salts baths.

Infrared light is very effective for relieving tight muscles.

Lymph massage with essential oil infused lotion and/or cupping of sore lymph areas.

DIET / SUPPLEMENTS:
When I am consistent, these good habits help:
Lesten food cravings
Keep digestive system functioning, reducing constipation issues.
Keep energy level up.

I have excess urine crystals, which cause irritation to ureters and severe spasms in the area. Many foods and supplements make it worse.

NO (not even a little):
Dairy.
Eggs.
Oats.
Rice,
Foods high in both calcium and phosphorus seem to cause urine crystal problems for me.
Asparagus.
Spinach.
Peanuts.
Plums.
Walnuts.
Cashews.

Only 1 new food, med, etc at a time for at least 2 weeks -- pay close attention. Often I can't figure out if ok or not, so after multiple trials, I trust my gut feeling: "It seems that asparagus causes problems, but I don't know for certain." I've learned to follow my instincts. They're always spot on.

BONE BROTH.
I keep a "perpetual" small crock pot of broth and add water and roasted bones as it depletes (along with a little apple cider vinegar, onions and garlic - and sea salt). I add strained broth to cooking every day.

Vitamin B1.
Vitamin B2.
B6, B12 (METHYLcobalime), Folic Acid combo.
Digestive Enzymes
IB Gard.
VSL #3 Probiotic
Zinc
Cosamin ASU

ESSENTIAL OILS:
Oregano (mix w coconut oil for thrush).
Eucalyptus
Lemon
Sometimes I keep a pot on the stove, just steaming and drop some oil in the pot and breath it in.

Coconut Oil

Thai curry paste (in cooking).

All fruits and vegetables I can tolerate must be cooked (except citrus, but I wash citrus peels with soap first).

Low fiber.

Lemon juice first thing in the morning (allows stomach to work like it's supposed to - triggers release of bicarbonate from the stomach lining in response to the acid infusion, which then alkalyzes the system).

Fresh squeezed grapefruit juice.

EVERYDAY SMOOTHIE (many of the ingredients increase mitochondrial function) containing:
Cooked, tolerated fruits (pears, apples, cherries, blueberries, cranberries), cocoa, brazil nuts (selenium), cinnamom, coconut cream/coconut milk.
Magnesium Citrate powder (Natural Calm prepared with hot water).
Powder Combo: L-Glutamine, Acerola cherry vitamin c powder, cranberry extract powder (from capsules), D-mannose (cranberry/mannose combo clears u.t. junk).
L-Carnitine liquid.
Lugols iodine.
Colloidal silver.
Ground flaxseed (tiny amount - this is my current new food that I'm testing at this moment.
Lemon juice.

MEDS:
Too many to mention, but I'll hit on the ones I think are most helpful for direct nutcracker problems:

DITROPAN XL (only the brand name works). Anticholinergic that relaxes urinary tract spasms.
THYROID MED - without it, allover spasm issues are unbearable.
XYZAL - antihistamine - without it my body is way too reactive to everyday allergens that affect me, be it sinus swelling, body aches, bone pain or muscle pain.

DAUNTING?
You bet.

OVERNIGHT CURE?
No Way.

FULL TIME JOB:
Seems like it.

WORTH IT?
Seems to be the best route I know of at the moment.

I am, by no means, cured. I do, however have more good days than I used to (not yet more good than bad, but it's progress.

Every sinus infection, virus, injury sets me way back, but even though it's a slow process, I now can climb "out of the hole" with a process I don't have to guess at as much as I used to.

Everyone is different. What works for me may not for you. But, if anybody finds this is useful, maybe it will jump start your path.

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@vbperez1

Yes I had nutcracker syndrome, I was diagnosed and treated at Mayo Clinic for this. Did you ever find the help you needed?

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Who were u treated by and what tests did u have to confirm the diagnosis?

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Has anyone been diagnosed with this? Seen a dr at mayo for it? If so which campus? Outcomes? Please respond!

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Hi @skye13,
I merged your discussion about finding others with nutcracker syndrome with this discussion, so that you could reconnect with the members who joined the discussion. You may also wish to view this conversation on Connect, https://connect.mayoclinic.org/discussion/does-anyone-here-have-or-heard-of-nutcracker-esophagus/ where @blackoutthesun @maureercria @tweaty1962 have discussed a similar condition.

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