Yes my daughter has been diagnosed with NCS and it appears she may have SMA as well. Who is the surgeon at John's Hopkins that you used and was the result a good one?
My nephew has the same problem, he is only 13 . He had surgery 6 month ago, his bleeding only got worse, he had all kinds os test to eliminate blood anomalies so far they found that has sickle cell trait,. Has your daughter done any genetic tests?
I just saw Dr. Steve Warden, urologist, in Virginia Beach who knows of and heard of 3 or more cases and mentioned this to me today.
My son was diagnosed with Nutcracker syndrome as well. He had gross and microscopic blood in the urine intermittently in the begining starting in June of 2010 at the age of 7. We went through a series of test and everything came back normal. We took the wait and see approach. We ended up in the ER one morning with him vomiting and and severe pain in the left side and this time fresh blood coming from his penis when he peed as opposed to old brown blood. The Dr. order some more test which all came back normal once again so we just went home and several months later he started having pain on the left side on a somewhat normal basis and at times would have other symptoms which we belive all went together. His Nephrologist decided to have a test preformed to see if he had Nutcracker syndrome in November 2012. The results indiacted compression of the left renal vein between the aorta and the superior mesenteric artery consistent with the diagnosis of nutcracker syndrome. We meet with a vascular sergeon to entertain the thought of possibly having surgrey. The surgeon explalined that it is a invasive and major operation and that its possible that it might not take away the problems our son is having so we decided to again take the wait and see approch. It is now October 2014 and he is now 11 and he is still having the pain in the left side and often has buring during urination that I forgot to mention and its just a aggravating nagging kind of pain and with some other symptoms as well. He has been dealing with this as you can see for the last 7 years and it isn't getting better.
I just wanted to share our story to see if anyone could offer any advice regarding their symptoms and their experiences or surgry they may have had done.
My daughter is 17 and has had the left renal vein transposition twice. First time was October 2013 and then her vein collapsed with a blood clot. She had to have the surgery again this October with a vein from the other leg. Now it has been 2 months and she is having severe left flank pain again along with passing out, dizziness, and nausea. In the process of testing to get back to Mayo. If you have any new information please share.
Hello Tammy, my daughter is having similar issues. She just turned 18 a few week ago. She had a Dopplar ultrasound and it indicated Nutcracker, but our Nephrologist isn't convinced as she has pain on both sides, not just the left. She said it might be loin pain hematuria. Have you been able to come up with any good solutions?
Wondering if you had any solutions from Mayo Clinic. We live near Madison and have been seeing a nephrologist at UW Childrens.
I am so sorry I have no idea that you had posted asking me to reply. I hope all turned out well with your daughter.
We had done the same surgery in India for my daughter she is 16 years old but after 6 month the pain has started again and her reports are showing normal plus she is loosing lot of weight the Dr don't know the cause of weight loss and pain did this happen in your case
My son (9 year old)was just diagnosed. Could you please contact me
***this post is edited by moderator *** *** private e-mails not allowed*** Please read our Terms of Use