NUTCRACKER SYNDROME!!! I HAVE THIS!

My daughter's pain was always on her left side right at the kidney. Still is. The only thing that relieves it is to lay down. She also had over 50 urinary tract infections, and over a dozen kidney infections. Funny thing is that the urologists always treated them with antibiotics even if they did not culture out a true infection. But, as I said in an earlier post, she was diagnosed in 2010 with Nutcracker, which was obvious on a special ultrasound, but after the first transposition surgery (which was a huge surgery)she had relief for only a short time and all the symptoms returned. Upon more ultrasound, and testing, it was determined that she still had Nutcracker. The vascular surgeon at Northwestern said that the left renal vein must need lengthening, so the second time he did the transposition, he also borrowed the sapphenous vein from my daughter's leg and used it to "lengthen" the renal vein. Once again, it did not succeed, as my daughter still has narrowing of the left renal vein. The vascular surgeon that performed both surgeries (one in 2010 & the next one in 2011)is no longer, to my knowledge, practicing or doing surgery. Just wanted to let you know before you make any surgical decisions.

I hope that you are still checking for questions - I have an 18 year old female friend who has Nutcracker Syndrome.. It causes her terrible pain, and she is having a heck of a time finding a doctor who will treat it. She has been going to specialists for months now. They make an appointment, usually 6 - 8 weeks out. Then they do "the tests", and it is another few weeks before she can get back in to get the results. They give her the results, then say they cannot treat her, because her condition is so rare. She is now seeing her 5th specialist. She waited 6 weeks to get in to see her, then only saw her nurse when she went in. She now has her next appoinment to actually see the specialist on May 21st, It is now March 19th. Nobody will prescribe her pain medication in the meantime. Which, actually, she would rather find someone who will treat her condition. She does not want pain medication to be the solution, as she is so young. Do you know anyone or anywhere in Colorado that has someone who knows something about this condition and may see her before she is 50? Thank you so much for your time.

My daughter has nutcracker, too. And she was about 18 when it was first diagnosed. She has had two Renal Transposition surgeries, and neither one worked. She had the first one in 2010, and the second (reconstruction- and "lengthening" of the renal vein) Both operations were HUGE, and she had complications the first time that left her convulsing. I do not recommend handling it surgically because they really don't know why this happens and how to correct it because it is so rare. Just my opinion from experience. Actually the surgeon that performed both of her surgeries has hung up surgery and quit practicing at the reputable hospital where he was on staff. Not sure why, but he does know that both of my daughter's procedures were unsuccessful. Since she still has the pain today, she lays down when it is at its worst, if she can, and it is relieved. Now, that will not be possible every time, but just thought I'd share that with you. One more thing that I think is noteworthy....she just delivered a healthy baby a couple of weeks ago. She had a normal pregnancy, and the best part is that WHILE she was pregnant, the Nutcracker was gone!

I have it and used accupucture and chiropractic care to conceive two beautiful children! also Standard Process vitamins for the kidneys and uterous.

Hi,

You seem to know a lot of information about what to do and who to contact and I was wondering if you could help me. I just recently had a CT scan and it showed that I had the Nutcracker Syndrome as well as pelvic congestion. I was referred to see a doctor which told me that even though the CT scan shows this syndrome he does not think I have it since I do not follow the common symptoms or what other people have reported. He told me that usually the type of people who have this are very skinny, vomit after eating and have trouble keeping food down. I am the opposite I am 5'5 and 160 pounds and I do not vomit my food and I have not lost weight. Although I have extreme left side pain and pain in my lower back (although it feels like the back pain is on my right side). I first went to a GI doctor because i thought this was a stomach issue due to the fact that I thought the pain happened when i ate. After fasting for 2 - 3 days I have realized that the pain happens at random. The pain can happen as soon as I wake up, but it happens more towards the afternoon time around 2:00PM. I also have stomach bloating as well and the pain occurs at the same time as the stomach bloating. I'm still seeing my GI doctor because I am still having issues (constipation, pain while passing my stool when I do and rectal bleeding (a lot of bleeding and I do not even have to pass stools for the bleeding). Every doctor I have went to has either passed me off to another doctor claiming that they do not deal with this issue or they have said that I'm only 26 years old (meaning that I'm to young to have serious medical issues, I shouldn’t get surgery and I guess deal with the pain). The pain and stomach bloating is so bad that I do not even go out any more and it hurts just sitting down which is difficult because all I do at work is sit down. At this point I feel like giving up and hoping it doesn’t affect me in other ways (just deal with the pain I guess). My question to you is can this harm you in other ways (things I might not feel or even notice)? Is it just painful and that is why surgery is performed or could this syndrome cause other issues? I am also seeing a cardiologist currently because my heart is extremely high when doing little activities which this has not happened before. Any help would be wonderful :)
If you have any suggestions on what steps I should take that would be great.
-Deanna

If you do not mind me asking - how much does she weight? Because I was just recently diagnosed and the doctor is stating that even though the CT scan shows this nutcracker syndrome that since I am not skinny that I cannot possible have it. It is so difficult to deal with because I do not think people understand how painful it is. I am currently 5'5 and 160 pounds, but I am also have stomach bloating as well which no one has described here (The stomach bloating is extreme though) I also am now having issues with my heart rate (when I do any kind of minor physical activities it races extremly fast) and I also just got diagnosed with high blood pressure. I am 26 and other then this I am healthy and I did work out until this pain and my heart racing.

Deanna, My daughter's is a long story. Have you read some of it on this post? I would prefer to talk vs. typing it all out again.

I was just diagnosed with Nutcracker syndrome in my left kidney. I am curious to see how you are doing? I went to a vascular surgeon and got the impresssion that he had not performed one of these surgeries. Hope you are well and doing great. I would appreciate it if you could let me know if you would do the surgery again and how long of a recovery you had.

Thanks,

Janet

UBA or John Hopkins

I was diagnosed with Nutcraker Syndrome in December of 2012.  After two vists to the Mayo Clinic in MN, I had the major surgery to fix it.  I had the surgery on October 4th.  The surgery is not easy and the recovery is estimated at 3 months to a year.  It took 4 full weeks before I could return to work.  The incision starts at my belly button and goes straight up about 5.5 inches.  It is a big scar.  I also have a scar about 3 inches on my groin where there removed a healthy vein for transplant.  I was given a 50% chance that this would eliminate my left flank pain.  Well it has been just 6 weeks and the pain in my flank is just as bad as before the surgery. The surgery itself was successful, although the followup testing will be in late December to confirm this.  It is very depressing to still be living with the pain after the surgery.  Even after six weeks I get very sore and tired but am hopeful that will slowly start improving.  My surgeon, who was wonderful, just didn't prepare me for how big of surgery this really was, so ask a lot of questions!

Why is mayo clinic not stenting which is a day surgery? I am really curious as I am scheduled for a stent placement for NCS in Canada and a little nervous when a world class facility is not doing it yet it seems to make most sense and be the easiest option. I will let people know how it turns out. I had an emobilization 6 months ago for pelvic congestion in my left ovarian gonodal vein and that is when NCS really started causing problems. The ovarian vein had been a natural outlet and now it was sealed with plugs. I can't sit still, flank pain, kidney issues including dehydration, bones cracking,extreme thirst and pain upon exertion...and even cognitive function affected (unless that cuz I can't sleep well now), also new pelvic varicosities arising. What a strange array of symptoms. Nice to know I am not alone!

My son is now 11yrs old and has been dealing with this since he was 7. Our vascular surgeon has mentioned the same surgery that you said you had done. How has that helped you and have you had any more problems since the surgery? We are considering the surgery but just a little nervous about it. Thank you

I have had the same problems exactly, been to multiple urologists since I was like 4 with no diagnosis. A CT I had last month showed nutcracker syndrome and I was diagnosed with pelvic congestion syndrome just last year even though my CT from 2010 showed it which btw can be cause by nutcracker syndrome. Oh and I forget to tell you that I turn 28 tomorrow. I'm so frustrated with Dr's right now. 

I'm sorry that you have had the same horrible experience as I. I turn 28 tomorrow and have had multiple UTI's since I was a child and seen several urologists with no answers. A CT scan I had last showed nutcracker syndrome and I was diagnosed with pcs last year although a CT showed it 4 years ago and the Dr's didn't think it was important to tell me at the time.

This is Jenni again. Get this: the day they were going to stent my renal vein, they decided not to...too many risks unless the compression really tight...so they just did exploratory angiogram. Now referring me to Mayo Clinic.  I would advise anyone with PCS be very certain what caused it before having embolization...studies out there say 80% relief yet that appears so false. It helped some of my pain, but created other huge issues. I am now worse off that prior to the ovarian vein/gonadal vein embolization and they don't even know for sure if I have NCS.  It is suspected.  Super hard to diagnose.  I am not skinny by the way.  I am very average, 5-6 and 150lbs. Gaining weight since I can barely do anything anymore and no relief of symptoms.  My bones crack all the time. Severe dehydration yet I drink excessively and pee all the time. No hematura though, but ongoing back pain, some sharp left pains at times and pelvic pain late in day.  What helps me somewhat--- aspirin but then it has its own risks, massage and water (ie. hottub)