My daughter has Nutcracker Syndrome

"The last endocrinologist that I visit suggested that maybe I am clinically depressed and that the pain is due to physiological systems stemming from the alleged depression."..."It appears that when doctors cannot identify the reason for the pain I experience, I had a doctor informed me that the pain may be due to depression."

YOU SAID IT!!!! Please, my friends, do not let doctors tell you you're depressed the minute they decide they can't do anything to help you any further. This is an epidemic among the medical profession. Stay strong, fight your battles, and remember doctor's EGOs are involved. It is NOT all in your head. You are NOT crazy. Doctors don't always tell the truth and some will do anything they can to not get sued, not get their precious egos bruised or have their perfect reputation ruined. KEEP FIGHTING, think OUT OF THE BOX. We can change the system if we refuse to automatically believe anything someone with an MD after their name tells us. We need to keep ourselves EDUCATED and always be one step ahead of the game!!!!! God luck to you all. It's a hard road.

I understand what everyone is going through! On top of my failed renal vein bypass, I have been seeing an interventional radiologist for the May Thurner syndrome. That had to be addressed before correcting the nutcracker failure. They stented my iliac vein, I was told it would take minutes, they completely put me under( intubated) and all, it took over an hour! I was in so much pain! Besides the pain I live with everyday ! All my doctors can say is your case is so rare we just don't know enough about it!!! You start to feel crazy, your family has had it cause it's been so long already....you feel alone!! No one understands and doctors are to arrogant to say they don't understand it so you must be crazy or exatterating your pain level! I hate living on pain meds! I feel like I live double lives!!! I don't tell anyone I have nutcracker and may Thurner cause they don't understand!!! It is to complex to explain! I lost faith in ALL doctors! There is no doctor that seriously wants to help you, I have been fooled before! But I won't give up and just remember people (doctors) are ignorant when it comes to what we have! We need to educate ourselves!!! We can only count on each other and share what works and what doesn't and the same with doctor experiences!!!

I am a 20 year old who also suffers from the same symptoms and have been diagnosed with Nutcracker Syndrome and Wandering Kidneys. I have had two surgeries so far and am getting prepared for a third. The first two surgeries failed and like your daughter I experienced some relief and then it came back. The first one they stapled my kidney to my back to attempt to stabilize everything. The second one they were going to place a stent but decided not to at the last minute because of complications. And the surgery I am preparing for is the renal vein transposition in which they will uncoil and reattach everything, there will be no stent placement. They may also do a renal autotransplant in which they take the kidney out and implant it lower and hook it up to my ischial veins. They are optimistic that this will work. I hope this is helpful and let your daughter know that she is not alone and that the strength from support and positive thinking cannot be out weighed.

Hello!! I was curious to see how your daughter is doing? My daughter had surgery at mayo the end of January 2013 for nutcracker. A few weeks after her surgery the symptoms started to return. They did an ultrasound of the vein and it appears to still be open. They basically sent us home and told us to wait and see what happens. Much easier said than done! She has an appointment April 4th with a pain management doctor. She is on the caringbridge under Whitney O'Brien. I am interested to see what management steps you have taken. Thank you, Melissa.

I was just diagnosed with this due to the pain I am a physician and started ordering my own tests and able to speak with the radiologist as the tests were being done.  I am in my 40s and had a history of frequent UTI as a child.  I recently had a lot of weight loss.  I have been doing some natural supplements to balance the fluid in the kidneys and have great success with the reduction of pain in my flank and pelvis.  the supplements are Standard process renofood and renotrophin pmg.  hope this may help someone.

I just got diagnosed with this after years of pain. I do not know what to do the pain is so unbearable! I am 32 and have felt like I was loosing my mind until I read your posts thank you!

My nephew just had surgery for nut cracker syndrome, unfortunately he hasn't stopped  bleeding since he left massgeneral hospital. We dont know why he is still bleeding, any of you has symptoms 

Did you have surgery? The renal transposition surgery. My daughter had it done twice,both with failure. That is why I am asking. Thank you. I wish you the best.

Hi,
I am very interested to hear that you have Nutcracker like my daughter, and that you both also have a history of frequent UTI. My daughter had over 50 and almost a dozen pyelos. Only about 50% would culture out to be something, and the urologists toyed with interstitial cystitis, until we discovered the Nutcracker.
Afte two unsuccessful Renal Transpositions, we are at a standstill as to where to go from here.
How are you doing now, Dr. Heather?
Thanks.
Dianne

I have recently been diagnosed with the nutcracker syndrome, my doctor is telling me that a stent will not work long term. Why did you (and your daughter) choose the stent instead of the surgery?

I am at the Mayo clinic this week for the same thing. Not sure what they are going to do but I know they do not think a stent will work. I will let you know what they say.

 

This sounds like your daughter has a larger circulatory problem as her hands should not be turning blue. I would suggest a Vascular evaluation with a venous color flow duplex scan or ultrasound of the greater vessels around the Vena Cava and Heart in addition to the local site of obstruction. If these tests show nothing serious, consider that your daughter may have a developing kidney stone or developed an abdominal cavity adhesion that is causing a sympathetic reaction or vasovagal response secondary to kidney function. A visceral adhesion could also be the origin of the originally diagnosed Nutcracker Syndrome.

Visceral adhesions can form following a significant fall or impact, as well as in chronic cases of gastrointestinal inflammatory diseases. They can be relieved by gently mobilizing the viscera via various manipulative medicine procedures. Consider looking for an Osteopath who is trained in Osteopathic Manipulative Medicine as well as visceral manipulation. Gentle mobilization of the renal fascia and peritoneal wall can provide great support and ease post surgically as well. The Cranial Academy, American Academy of Osteopathy, the American Osteopathic Association websites can direct you towards Practicing Physicians in your area. Best wishes

my niece is 20 and has been suffering for 3 years. she was just diagnosed w nutcracker syndrom. her vascular surgeon told her it is too risky to do surgery and that no one will touch her. im so confused that no one can help her!! i read about this surgeon at mayo clinic, but our surgeon said mayo clinic will not touch this either! my niece was born prematurly with a hole in her bowel. she did well until three years ago, when all her real troubles began. is there someone out there that can help this poor girl?!? if not surgery, anything that can help?!?!

What physicians/surgeons are experienced with treament?

My 20-year-old daughter has had gross hematuria most of the past 4 years. Our diagnostic journey was similar to yours - 18 months of inconclusive testing before we were referred to the Cleveland Clinic, where the diagnosis of Nutcracker syndrome was made. After conservative monitoring for about 6 months, the amount of blood in her urine increased and the blood became clotted. When she started to require transfusions, the vascular surgeon who made the diagnosis recommended a stent. The stent was placed 18 months ago and only worked for two months. Since then she has had chronic hematuria with mild to moderate anemia but it hasn't been severe enough to look at other surgical options. She tried an iron infusion last month and had an anaphalactic reaction to that so we're afraid to try that again. I worry about what happens next. I keep reading about people who have the more invasive surgery and it doesn't help or helps only for a short time. I also wonder whether childbearing will be problematic when she's ready to start a family - I don't know if the collateral veins that have forms will lead to infertility problems or if she'll have difficulty maintaining a pregnancy because she's chronically anemic. The doctor says the stent should withstand the intrauterine pressure associated with pregnancy, but if it hasn't withstood the pressure from Nutcracker syndrome well, who knows. We're not sure what to do.