Hi, to anyone that has actually found a cure for the pain after having the surgery done can you please help???!!!! I have had the surgery and after about 7 months all the symptoms are starting to come back. The left flank pain, abdominal pains on both sides actually, and fatigue really bad. I went to the ER and they did do a C-Scan and they actually said that things had improved but, I'm confused as to why I'm going through this all over again but, yet things looked fine. I really don't know what to do, is there anyone out there going through the same thing? Or is there something that helped out with the pain? I am in constant pain everyday, I mean it's taking over my life!!!!
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My son rvt in sept 2014 by dr emily durkin
He has had no problems since surgery. She is at Helen devos children's hospital in grand Rapids Michigan. I encourage you to contact her
He has had no problems since surgery. She is at Helen devos children's hospital in grand Rapids Michigan. I encourage you to contact her
Hi, my son was diagnosed with nutcracker syndrome in December 2015 after 7 years or pain and heavy bleeding. We have seen a number of Drs. In Ottawa, Ontario, Canada and they are saying he can have surgery by a vascular surgeon who will move the vein (RVT) or a transplant surgeon who will do the auto transplantation, moving his own left kidney to right side. Could you please give us more info about yourself and he symptoms you had prior to surgery. Are you male or female? Age my son is now 22. He had left side pain all the time with it extremely severe on and off. He had blood in urine apprx 75%of time and most of the time it was heavy bleeding with lots of clots passing as well. He also had lots of pain and heavy feeling in his legs. Any information you can give me would be greatly appreciated in helping us make this decision. Thanks in advance for your help.
I just left you a message about my son and asked you for more information about yourself. Also any information about your surgery itself would be greatly appreciated. I would appreciate information from anyone else with Nutcracker Syndrome. Thanks again.
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Hi I would appreciate any information you can give us about your symptoms of Nutcracker Syndrome and how you decided on which surgery to have done.
If anyone else from Ontario, Canada or even just Canada has been dealing with this I would appreciate any information you could provide.
If anyone else from Ontario, Canada or even just Canada has been dealing with this I would appreciate any information you could provide.
Yes my son has been diagnosed with nutcracker syndrome after suffering for almost 7 years at first they said they thought he should have an auto kidney transplant removing his left kidney and retrains planting back in at the front or more to the ride so he would still have 2 functioning kidneys then we saw a vascular surgeon who suggested the renal vein transposition. Which surgery did you have done and can you also tell me what your symptoms were. My son has left flank pain and pain in his abdomen just to the left of his bellybutton he has heaving bleeding on a fairly steady bases a lot of leg pain and heavy feeling legs, as well gets nausea and vomiting sometimes and passes out sometimes. What did they do during your exploratory surgery that helped you? Any information you can share would be greatly appreciated. Thanks You.
My daughter has posterior NCS. LRV transposition is one of her only options. I was under the impression (rom another group) that Dr. Glovizcki stitches his stent in place to ensure it doesn't migrate, at the same time he does the transposition. I was also told he routinely does this to ensure the LRV doesn't collapse, which seems to happen often.
How did your renal vein transposition go? My son was given the option of it or the renal auto transplant. Did you have the auto transplant done as well? How are you doing now?
Could you please tell how you are now after having your kidney moved to your right side? My son has been given the choice of having this done or the renal vein transposition. What were your symptoms prior to the surgery. All the information you can give me would be greatly appreciated, thank you.
Hey i have nutcracker syndrome i lost too much weight i'm pissing blood can't eat everything i see and the doctors in my country can't operate on me because it's too dangerous i have to go to another country for the surgery. But i'm afraid and i would like to know if i can get pregnant with this nutcracker syndrome problem??? I'm worried!!!
I was recently dignosed with NCS and live in Dallas Texas area, no one will even see me....so you had good success with thus dr in Cleveland ?
Dr mark levy at vcu medical center in richmond, virginia. He is doing my surgery.
Try the University of Wisconsin in Madison. My daughter sees Dr. Bartosh there. She is in peds, but sees patients until age 25. If she can't see you, I am sure there is a kidney doctor there that can help. It's one of the best kidney hospitals in the country.
I am a female and a registered nurse from British Columbia, Canada, and I was 55 years of age when I traveled to the Mayo Clinic in Minnesota in 2010 to receive treatment for Nutcracker Syndrome. At that time, this condition was not acknowledged by any vascular specialist in this part of Canada. It cost a lot of money for, firstly, a failed left renal vein transposition with the vein collapsing, and secondly, then correcting the problem with a stent insertion. Our medical system will not pay for surgeries that are not recognized as medically necessary in our country, even though people are bleeding internally like your son. I felt that my ongoing pain post surgery and stent insertion was not adequately acknowledged by the doctors at the Mayo Clinic. I asked if they knew of any vascular surgeons in Canada that I could receive follow up care due to the excessive costs for medical care for Canadians in the USA. No one ever got back to me and I have never received so much as an email or a letter regarding how I am doing since 2010. I would really appreciate if you could share the doctors' names that you have seen in Canada as I would like to see someone for follow up after all these years. I have had a few simple ultrasounds to see if the blood flow was adequate in the vein with the stent but it was based on the report of a radiologist and my family physician. I felt that I was left high and dry by the Mayo Clinic with no concerns about follow up care. I hope that you have made a decision regarding your son's treatment. Treatment is necessary when there is bleeding such as what he is experiencing. I feel that the present treatment options are better than losing a kidney eventually but the treatments don't appear to be the be all and end all when it comes to the pain associated with the condition.
Hello
I've just read your post, my daughters symptoms started age 13 on the same day as a burst appendix with peritonitis. All the symptoms you have described she has plus right hip to thigh pain unable to weight bear since 2013. They have only just realised that she has nutcracker.
We are awaiting the Drs to decide what operation she will have.
Is the operation highly risky?
Are you saying that the symptoms have come back including heart arrhythmia ( pots symptoms ). Numbness etc after all the surgery.
I see your post is a year old I wonder if you could say how your daughter is doing now.
I've just read your post, my daughters symptoms started age 13 on the same day as a burst appendix with peritonitis. All the symptoms you have described she has plus right hip to thigh pain unable to weight bear since 2013. They have only just realised that she has nutcracker.
We are awaiting the Drs to decide what operation she will have.
Is the operation highly risky?
Are you saying that the symptoms have come back including heart arrhythmia ( pots symptoms ). Numbness etc after all the surgery.
I see your post is a year old I wonder if you could say how your daughter is doing now.