I realize you posted this over a year ago, but wondering if you ever received a true diagnosis? My daughter is 18 and recently experienced these symptoms but on both sides, not just left. Her nephrologist seems to think it's loin pain hematuria, not Nutcracker. We are looking for answers and support.
What tests has she had done? I have nutcracker syndrome with pelvic congestion syndrome and have pain on both sides. The nutcracker is causing the pelvic congestion with reversed blood flow from left to right gonadal veins. I had a CT angiogram, left renal and left gonadal venogram and ultrasound to diagnose. The venogram is the gold standard test to diagnose nutcracker syndrome.
A Dopplar ultrasound, but her nephrologist thought she might actually have Loin Pain Hematuria, even though the Dopplar showed the narrowing of the vein. I found a website for Loin Pain Hematuria and her symptoms more closely mimic.
Question: is the venogram the same as Dopplar ultrasound?
I have a 17 year old daughter who was diagnosed with Nutcracker Syndrome when she was 14 yrs old. An interventional radiologist here in Concord, NC placed a stent in her left renal vein(she still had back pain, stomach pain & fatigue). She continued to do quite a bit after her surgery and last week all her symptoms of extreme incontinence, left flank pain, stomach pains and feeling like she has a UTI/Bladder Infection and pain trying to do things that she normally does came back. They did a CT Scan and her stent was pinched and the fluid was backed up into her renal vein again. On Tuesday she had another surgery. They did an incision on the right side of her neck and went thru her jugular vein and all the way through til they reached her left renal vein and performed an angioplasty. They ballooned her left renal vein (4) times the size and that extended the stent back out and the clamped the stent and they are hoping because the renal vein is now 4 times the size that the blood flow will be so much more that the strength of the extra blood will keep the Aorta and SM artery from causing the stent to collapse. So far she has been having a pretty hard time. The problem is she continues to feel like she has a UTI/Bladder infection and has to push to urinate and has burning along with pain. She also still has incontinence(it's not as bad as it was)She also has quite a bit of left flank back pain and stomach issues. Now she has chest pain and stomach pains when she tries to eat certain foods. She also has bloating of her stomach. She wants to go back to school and wants to try on Tuesday. I am concerned on how long she will last because right now she is on percocet and we have taken her back to the hospital where they gave her morphine again for pain. She is on long term pain meds through her primary care physician. We stopped using a pain specialist because she does not use percocet long term. We actually use arthritis meds and they did help some until the stent pinched again. We are praying that the angioplasty will help. Right now since it just happened it seems that her body is struggling with the renal vein being 4 times it's normal size. Praying again that this will help her. Has anybody else had an angioplasty done. Also my daughter is struggling with feeling like she is the only one with NCS and would like to find another teenager or person close to her age who also has Nutcracker Syndrome to talk to so she doesn't feel so alone. Thought I would reach out here to find someone who may can tell me if they have had the angioplasty and how did it work for them or their child. From what the doctors have told us my daughter right now is the only one they know of in NC. If there is anyone else in NC who has this I would like to know that. But it would be great to reach out to others who are going through this so she doesn't feel so alone. Thanks for the help of anyone who can help me with any info.
I am diagnosed with nutcracker syndrome in March 2017, So I had multiple kidney stones and had stent inserted for a month. It did not help me with my pain. I still severe pain, I am having appointment ay Mayoclinic this month.
Could you please update me with your treatment plans and success rate.
Could you please update me with your treatment plans and success rate.
Can you please help me? I am diagnosed with nutcracker syndrome, this March. But i have pain on my right side-flank, back pain, pain to right thigh and right upper back. I read this syndrome has pain only on left side?
I have appointment at Mayo clinic this month. I had stent for a month.,
who was your doctor?
I have appointment at Mayo clinic this month. I had stent for a month.,
who was your doctor?
I had the same, pain on right side and diagnosed with nutcracker. Have you had any treatments ?
My daughter has a similar, but all of her lower back not just one side. She has micro bleeding as well. We are in Wisconsin. The doctor said she couldn't call it Nutcracker because pain all in back, but her Doppler scan showed the compressed vein. She called it "loin pain hematuria". She's been doing well on blood pressure lowering meds for the pain. She still has micro bleeding.
Hi Jenny , I have been Dx with PCS and looking for a Dr . in Canada to Tx me , I am living in NL and no one here is familiar with this my OBGYN didn't even know about nutcracker syndrome and she is the best here . Could you please give me some contacts? I have the same symptoms. please help I have had surgery that was life threatening and ended up in hospital for months , FOR unnecessary surgery. thanks Allison
I have !! That's how we found it out
I have !! That's how we found it out
I am in NC and have NCS as well. I am 32 now but have been dealing with it for years.
our daughter went through surgery and still has bleeding. the surgery was 3 weeks ago and wondering how long before it gets better?
I was just recently diagnosed with this after years of pelvic pain in middle school sitting at the dinner table I remember my spine was hurting so bad I freaked out and now 30 going all my 20's in pain and fighting with doctors where told me to be in porn another told me to end my life and one even gave me pills for lymes CT scan sound the vein being compressed but doctors had no idea at the ER (when a clinic appointment turned ER visit really fast) it took them 6 hours to make phone calls to understand what the nutcracker is I went in Friday to see a specialist but all she told me was to gain weight I was so disappointed, I used to 126 already struggling to keep the weight on but after my last period I thought it was just left over cramps that went bad but my whole left leg would paralyze me when I moved and knew it wasn't just any normal cramps I got on the scale and seen I was 110 I cried and she had the nerve to tell me to gain weight when this pain is unbearable to walk! I fear now no one will help me get the help I need for this.