Hi
have you checked this out on the internet. This might give you some questions to take to your Dr. next time you go. I'm afraid I have no personal experience with this. Hopefully someone will add something that will be more help. I wish you the best.
answers.com/topic/nutcracker-syndrome

thanks -- i have done a lot research on it, but it doesn't seem that many doctors around the country have even seen an actual patient with it. That's the dilemma...the info is out there, but who are the doctors that have actually treated real live patients??? thanks again....

I hear yuh. beleive me I understand that. Different cause, but I have a kidney that does not function. (many tests to confirm this). Now this kidney has lots of cysts on it. But every time I go to the Dr. they just tell me that there is nothing they can do. Blood tests every 3 months. I hope you find someone that can help.

my daughter has been dealing with this for 4 years now She had a autotransplant of her left kidney 1 1/2 years ago. it has seemed to help a great deal the pain was greatly reduced and ntil recently no hematuria. but that seems to be changing . anyone else with any more info please help

I have been hearing that it effects kids and there seems to be more drs that treat them rather than adults. i breifly spoke to one interventional radiologist who mentioned the autotransplantation of the kidney -- but my symptoms are no pain just hematuria all the time and from what you wrote the hematuria hasn't necessarily stopped with the surgery, right?

wow i hope you get some answers soon, that is frustrating....best of luck to you!

She has only had hematuria afew times in the past year and a half but her pain has not subsided it has lessened greatly but it is still bothersome.
i'm not sure i have heard of true nutcracker without pain pain is usually associated because of the varicosed kidney. the pain is what lead us to the drastic surgery. I saw you were in florida we are in tampa. One of my newest and biggest fears is that she will be having to get her own ins. in the next few years and will she be insurable?????????


Mom of tiff

momoftif -- i have a suggestion, i have heard of a case where an accountant was able to set up a corporation (like you would be the president and the kids were employees) and the corporation got insurance for all the employees -- so everyone could be insured whether they had a pre-existing condition or not. Obviously, you will have difficulty getting insurance for her on an individual basis. get a good accountant and see what can be done. I wish you the best with that.

Thanks for the other info too. btw its weird that i have no pain, although i did when i first discovered the hematuria (but i was seven month pregnant at the time and the pain subsided after a several-day stay in the hospital). strange....

Did you have preeclampsia or high blood pressure while you were pregnant? My trouble started about 6 months after my first son was born. Just pain though, no hematuria.

no everthing was totally normal with the pregnancy -- except the hematuria and pain (which at the time they thought was a kidney stone) - did you already have a preexisting condition before you got pregnant? (also this was second pregnancy with nothing happening during the first one) my doctors don't know enough about the condition and told me not to get pregnant again...which i would be too scared to, but still i would like a more definitive answer rather than just dont do it because we "aren't sure"

No, but I developed gestational diabetes while I was pregnant and went on Insulin. Like I said, 6 months later I was in pain. I had surgery but it didn't work. I lost the function in one kidney. I'm still looking for doctors who can figure it out. They can't give me answers either. I guess we just keep trying.