My daughter has Nutcracker Syndrome. She was diagnosed in April 2009 after over a year and a half of trying to figure out what was wrong. We finally went to Mayo Clinic and she was diagnosed there. She had surgery, which is left renal vein transposition, where her symptoms resolved for about two weeks. Then around her 7th week postop she began having hematuria and pain again. We then found out her renal vein had collapsed and she had a stent placed. She had a good 2 months then slowly her symptoms began again, blood in her urine occasionally, left flank pain, abnormal heart beat, feeling tired and sluggish, her hands would turn blue, limbs felt very heavy, not able to urinate or when she does it burns and hurts and very little urination occurs, horrible menstrual cycles, all of these symptoms were like she had prior to her surgery. She had an ultrasound and no one said anything about her vein being occluded again. I demanded another ultrasound in February of 2010, and her vein a occluded, the stent had moved. Her doctor at Mayo Clinic said this has been known to happen, but it's rare and he has never had anyone who has had as much trouble as her. She had another stent placed in May 2010 and has been fine up until about a month ago. Now she has had urinary symptoms back, the pain in her side, especially in the area of her stent, feeling tired and sluggish, abnormal heart beat and pressure in her chest, her limbs feel heavy again, she has no blood in her urine as of yet, but the painful urination and the inability to urinate most days has come back. She had a follow-up ultrasound done at home and they say it is fine. Has anyone ever had or heard of anyone else having so much trouble after treatment for Nutrcracker Syndrome. Our primary care physician keeps treating her for UTI's because of her symptoms to which I keep telling him that's not what is gong on. Please help because I can't find any cases like hers.
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My daughter also has Nutcracker Syndrome. She had L Renal Vein Transposition July 2010. Her symptoms of left flank pain & cystitis started within a month after surgery. She had a ct last week that shows that the vein is narrowed again. Our vascular surgeon thinks that it is Intimal Hyperplasia. (scarring inside the vein) . How old is your daughter? We are trying to make a decision about letting the surgeon go back in and rebuild the vessel taking out a part of her jugular vein to do it. Obviously, the flank pain is a problem, but the cystitis is also causing her lots of problems. We are trying to find out from others that have this whether or not there is a correlation between the urinary symptoms and problems & the Nutcracker. My daughter has had over 50 UTI's and multiple pyelos. But over 1/2 of these "infections" are actually considered cystitis.
Thank you.
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re I currently in the process of going to different surgeons to be treated for my nutcracker syndrome.I really appreciate finding someone who can relate to such a rare syndrome.Finding a doctor that is educated in this seems impossible.I am in the position that I need to do something rather quickly,I am terrified to make the wrong decision.I am suffering every day with extreme pain,weight loss,urination hesitancy and feeling awful..I was hoping you could share a bit more of your daughters story and how she is doing now....I sure need HELP
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Hi! I HAD to write back to let you know IF you have the Transposition Surgery that the leg graft SHOULD be done prophylactically. Our surgeon said he would've done it, had it been more common. There is a surgeon At Mayo Clinic in Minnesota named Peter GLitzke that has done enough of these surgeries & redo's that he now does the saphenous vein graft initially.
My daughter had her original transposition surgery last July (2010) but due to the fact that the renal vein was stretched, it occluded again, so she just had to have a redo this past July,and the vascular surgeon took the saphenous vein from her leg to make the renal vein longer. We are truly hoping that fixing the NCS may very well not only take care of her flank pain, hematuria, & proteinuria, but also the barrage of "uti's" & "pyelos"...The surgeon says that there are not enough documented cases to know for sure that NCS has been responsible for all these "infections". We'll see.
Take care. We wish you the best.
My daughter had her original transposition surgery last July (2010) but due to the fact that the renal vein was stretched, it occluded again, so she just had to have a redo this past July,and the vascular surgeon took the saphenous vein from her leg to make the renal vein longer. We are truly hoping that fixing the NCS may very well not only take care of her flank pain, hematuria, & proteinuria, but also the barrage of "uti's" & "pyelos"...The surgeon says that there are not enough documented cases to know for sure that NCS has been responsible for all these "infections". We'll see.
Take care. We wish you the best.
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Wanted to let you know that I posted on steadyhealth.com. If you get this privately, i would be happy to give you my phone number.
Thanks.
Thanks.
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I would love to talk to you I am scheduled for surgery at John Hopkins..If you could email me privately and we could exchange numbers that would be so great for both your daughter and I....my email is
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I believe it says that we have to post and reply 5 times to message privately, so maybe we could do that. My daughter has had no bladder/kidney infections since her July 19th surgery, and I do recommend the surgery. Would love to talk more though. I am on facebook
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Dianne Neely wrote:
Dear taphillips,
I do want to let you know that my daughter's reason for this second surgery is NOT because of Intimal Hyperplasia like the dr thought, but because the vein needed a cuff. So, he ended up taking the saphenous vein out of her leg because it was the fact that it wasn't long enough when it was transposed a year ago, and that is what caused the occlusion (narrowing). He says that Dr Peter Glitzke (I think that is how it is spelled) now does this procedure(the grafting) at the same time as the transposition.
taphillips001 wrote:
I would love to talk to you I am scheduled for surgery at John Hopkins..If you could email me privately and we could exchange numbers that would be so great for both your daughter and I....my email is
***this post is edited by moderator *** *** private e-mails not allowed*** Please read our Terms of Use
I believe it says that we have to post and reply 5 times to message privately, so maybe we could do that. My daughter has had no bladder/kidney infections since her July 19th surgery, and I do recommend the surgery. Would love to talk more though. I am on facebook
Dear taphillips,
I do want to let you know that my daughter's reason for this second surgery is NOT because of Intimal Hyperplasia like the dr thought, but because the vein needed a cuff. So, he ended up taking the saphenous vein out of her leg because it was the fact that it wasn't long enough when it was transposed a year ago, and that is what caused the occlusion (narrowing). He says that Dr Peter Glitzke (I think that is how it is spelled) now does this procedure(the grafting) at the same time as the transposition.
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Jules
My daugther was diagnosed with nutcracker sydrome also and she got the surgery what is your email address so we can discuss this issue.
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It is Dr. Peter Glovizcki from Mayo Clinic who does this surgery with the left renal vein transposition and saphenous vein grafting because he did my daughter's. She had to have a stent because her vein collapsed, first time ever for him, then this stent moved, had him place another stent. Now she is having trouble once again. My daughter is now 17 but all of this started at the age of 13. She is having "UTI's" again and we cannot find a cause. She is having heart arrhythmias and dizziness and numbness and tingling on her left side with bouts of diarrhea. I think the surgery and/or stunting is the best option, they have never had a case like my daughter's before. No one knows how to help her any more.
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I would really like to talk to you. Please reply, and then I'll reply. We are headed Dr. Glovizcki on Tuesday. Please reply.Thanks
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DianneNeely wrote:
Mother of 17 year old that went to Dr. Gloviczki, I am looking to talk with you. Please reply.
Thank you.
jules72269 wrote:
It is Dr. Peter Glovizcki from Mayo Clinic who does this surgery with the left renal vein transposition and saphenous vein grafting because he did my daughter's. She had to have a stent because her vein collapsed, first time ever for him, then this stent moved, had him place another stent. Now she is having trouble once again. My daughter is now 17 but all of this started at the age of 13. She is having "UTI's" again and we cannot find a cause. She is having heart arrhythmias and dizziness and numbness and tingling on her left side with bouts of diarrhea. I think the surgery and/or stunting is the best option, they have never had a case like my daughter's before. No one knows how to help her any more.
I would really like to talk to you. Please reply, and then I'll reply. We are headed Dr. Glovizcki on Tuesday. Please reply.Thanks
Mother of 17 year old that went to Dr. Gloviczki, I am looking to talk with you. Please reply.
Thank you.
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have recently gone through the last couple of years treating with many specialists to rule out many disorders & diseases. And then incidental finding from an MRI w/contrast reflected a circumaortic left renal vein. For the last 2-3 years I have experienced the same symptoms everyone else has that have this diagnosis of "nutcracker syndrome". I have not been diagnosed yet. However, I have begun conducting research into my symptoms and recognize that I have the exact same symptoms as others diagnosed w/nutcracker syndrome. Currently, I am looking for a doctor at either the Mayo Clinic or John hopkins that diagnose and treat me asap. In the past I would experience intermittent periods where I felt healthy again.
Now I live on pain pills that don't necessarily address the severe pain that I experience 24/7 anymore. I find that when I eat the pain worsens on my left side-flank pain, chest pain, urine issues, gross hematuria, and pernicious anemia, despite having B12 shots once per month. I need the name of a doctor at either the mayo clinic and/or hopkins that I can treat with, at least to obtain a definitive diagnosis and treatment.
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. I disagree due to the severity of the pain and the fact that I am a social worker that works closely with a nurse and psychologist, who both adamantly deny that I am in no way depressed.
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. If someone could kindly recommend a doctor(s) at the cleveland mayo clinic and/or hopkins, I would appreciate it. Thank you and good luck.
Now I live on pain pills that don't necessarily address the severe pain that I experience 24/7 anymore. I find that when I eat the pain worsens on my left side-flank pain, chest pain, urine issues, gross hematuria, and pernicious anemia, despite having B12 shots once per month. I need the name of a doctor at either the mayo clinic and/or hopkins that I can treat with, at least to obtain a definitive diagnosis and treatment.
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. I disagree due to the severity of the pain and the fact that I am a social worker that works closely with a nurse and psychologist, who both adamantly deny that I am in no way depressed.
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. If someone could kindly recommend a doctor(s) at the cleveland mayo clinic and/or hopkins, I would appreciate it. Thank you and good luck.
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I am struggling with NCS and opted not to have the transposition surgery in 4/09. During a renal venogram where the pressure in the LRV was 4.5mmhg and I agreed to stent at 3mmhg, the interventional radiologist decided there was good enough flow not to stent so we left it. He embolized the left ovarian vein at that time. It is 3 years later and I am in unbelievable daily pain. An ultrasound shows several collaterals now have prominent varices, I guess because the blood that back-flowed from the entrapped renal vein had to go somewhere and the ovarian vein was now blocked. I have no idea what to do, but the chronic pain in my left pelvic area and now urinary symptoms are making me crazy. It makes me frustrated that there is so little scientific literature with long-term follow up. I was considering surgery and stenting, but after reading your daughter's story I am not convinced that either would be a good choice. Has your daughter made any progress?
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I had bypass on my renal vein using the sapheinous vein in my leg. I had this surgery done at John Hopkins, it did not work! My bypass clotted and I am worse off than before! Also my surgeons after my surgery and finding the clot realized I also have May Thurner syndrome, don't let anyone tell you your crazy. Don't stop till you find the right doctor! My pain is severe and I now question all doctors! Don't give up! I won't!!
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