My daughter has been to Mayo, Cleveland & is scheduled for the auto-transplant surgery in WI. She has EDS & Nutcracker among other things. She has lost so much weight. She just got a feeding tube which is hurting her so bad. I never thought so many Drs would be so uncaring. They wouldn’t even give her fluids in our local ER. For almost a year, they have tried to say it’s in her head. She has had to fight for every step of care and it’s taking so long she can barely hang on. I pray for every person going through this & hope they can get treatment quickly. The pain she lives in is so bad, God Bless all of you and I hope the best for you.
Yes, this is the unfortunate truth. I have Nucracker syndrome and had an open transposition surgery, it helped for about a year and then now I am in a worse state than before due to scar tissue closing my vein. I just got back from a disappointing appointment at the Mayo Clinic, the only thing they said is that I need to see a nephrologist! so disheartening after years of struggling. It affects every aspect of my life, even just having a bowel movement causes me terrible sharp pains all over my left side of my abdomen. I pray for my fellow people going though this daily struggle, at times it feels so hopeless and lonely. I pray that your daughter can find some help, maybe we will find a cure someday.
I’ve had nucracker for 11 years that I know of and doctors messed up and didn’t call me when it said I needed to be referred to vascular after I went into the er for immense pelvic pain that I suffered for years before that. After going sepsis 2 years ago they then saw it and sent for someone to call for a referral which never happened. Now I’m scheduled in a month to have my surgery. I have nutcracker and may thurner that has caused pelvic congestion syndrome. I’ve been to so many doctors and had so many er visits and constant UTIs and everyone said there was nothing wrong with me. Wasn’t until I went to a new GI doctor and they said you need to go to Vascular. They have two CT scans showing pelvic congestion syndrome and you were supposed to be referred there. I’m happy that you are better. I’m in pain all the time from it.
I had to fight for 2years and I found it on my ct scan report after once again the ER sent me home not caring I showed my doctor and he said “that’s your answer right there” I couldn’t believe it after going to different doctors one doc said I should take Ibuprofen for a while I’ll be ok smh it’s a hard journey and very depressing I felt like giving up on life fight for yourself! I’m glad you found your answers 🙏🏾
This happened to me to! I seen pelvic congestion syndrome on my CAT scan and the ER doctors didn’t even tell me so I brought it to my OB/GYN and that’s what got me then a gram and found out that I had nutcracker Mazer in ours and pelvic congestion syndrome now I’m on my way to have surgery for
@@THATMOMOF4oh no! I’ve been sick for a year and already had a different compression fixed but wasn’t better after surgery but was just diagnosed with nutcracker syndrome and I don’t know much about it.
I was just diagnosed a few months ago and I am going in July for a left renal vein transposition. Im so so hopeful it'll be as life changing as it was for you!!! So happy for you!
Hi, can you please share how you are feeling now, and how your recovery was/is? I went to the ER a few days ago with severe abdominal pain. A CT scan was done. The Dr. said everything was ok-nothing acute. I requested a copy of the imaging results and there is something listed that states, “there is retroaortic left renal vein.” Needless to say I’m very concerned. Thank you!
I was diagnosed with this on September 20th, 2023. It was only by chance that it was found. I had lived with pelvic congestion for years, and everyone kept telling me it was endometriosis. The only way to diagnose it, however, was through surgery and I didn’t want a surgery without investigating all other causes of pelvic congestion first. My gut was right to see a vascular surgeon because he found out my pelvic congestion came from nutcracker syndrome. The pinched renal vein caused blood to overflow into the ovarian vein, and the best way to fix it was an ovarian vein transposition. I’m a lot better than I’ve been in a long time, but this illness wrecked my life for almost ten years. It’s going to be a while before I’m okay again.
OMG!! I've lost four YEARS of my life now! Debilitating pain in my abdomen, pelvis and back.. I've since dropped a ton of weight, can't eat or not eat, stay in my bedroom day after day, night after night.. I'm 44 and I'm not living - just existing (can't lay down most of the time to even sleep).. I'm at the end of a very long, lonely, painful battle.. I don't want to go on like this - but, I haven't even had my grand babies yet.. I ache for ANYONE who's suffering like this - especially alone, ostracized
I hope you get help. I’m 26 and though I’m mad I went to the ER four times in August with just a slight mention of nutcracker syndrome and denial that it was actually a finding…. to learn it’s SMA syndrome which causes nutcracker syndrome thanks to the urologist I got referred to meeting with a vascular surgeon over it. I hope you get help or push a doctor to get referred to urology then vascular once they do CT scans hopefully
I was diagnosed with Nutcracker Syndrome a month ago. Meeting with my transplant surgeon in 9 days. Thank you for sharing your story and to everyone in the comments for sharing yours as well. ❤️❤️❤️
hi Audrey, I was wondering what your surgeon said. Are you thinking about getting your kidney moved? I have been suffering with nutcracker for years now, and had my renal vein moved, but its back and I'm wondering if moving my kidney would be helpful.
Amanda Little hi! I haven’t met with him yet, due to the coronavirus they have put off all cases that are not currently emergent in my state. My transplant surgeon is meeting with me now on May 4th (hopefully!) I am also having a bladder biopsy coming up, because of some other recurring issues. I’ll keep you updated, I hope you are staying safe! Heating pads help a little with the pain for me. Anything help for you?
@@amandalittle9093 hey there hon I had the LRVT as well and it failed and I’m actually looking at getting my kidney removed in Dallas with Dr. Jeffrey caddudu Here’s another great doctor like Richard dickerman I tried to get in to see Richard but nobody answered me so you could also check out his office there probably 15 to 20 minutes apart from each other
I’m persisting for the surgery atm. This story is as my own, I have the 2 confirming scans,one from a vascular surgeon head and struggling for help by a professor
My 20 year old daughter may likely have this. Many doctors we've seen are clueless. We had a general surgeon grin smuggly at us, when we questioned the radiologist saying the CT scan was normal, and asking why there were no measurements on it, like we had no clue. My daughter had the typical protein and blood in her urine and it was flagged multiple times, and still no doctor saw it. This surgeon also told my daughter if she had pain while eating normally to eat like a dog (yes that's down in all 4s). I want to slap her.
Nutcracker diagnosed also but from Australia seems imppssible to get any help in Australia. Meanwhile body falls apart and quality of life consists of heat packs and laying down, loss of career and no pain management that works. I wonder if these drs do Telehealth apps or can coordinate with specialists here on how to help myself and fellow sufferers in Australia
I’m in WA currently persisting for the operation after 2 confirmation scans one from a Vascular Surgeon Head of department. Type in nutcracker surgeons and there’s a place in QLD to check out. Don’t give up! Prayers and blessings to you as it’s excruciating and I couldn’t wish it upon my worst enemy, best of luck 🍀🙌🍀
I was diagnosed with NUTCRACKER after years myself of pain , no help , total reconstructive surgery of one kidney and things got worse .. I need help 😭😭
I have nutcracker syndrome, an I live in Belarus. Here too they seem to know nothing about it... I have been struggling with this condition for 20 years until I got diagnosed. But now I'm quite clueless at how to fix it... One doctor says stent, another - laporotomic operation... I have 2 left renal veins, one is entrapped, another drains into intercostal veins, which most probably is also the cause of pain. This anomaly makes everything even more complicated... I would be extremely grateful, if people, who have had these or that surgeries with this syndrome would share their experiences! 🙏 Also, if someone knows a doctor, who can consult online on which operation to choose, I would highly appreciate your help.
I also got told to eat fruit, more water and exercise it away! When i was one month post partum....tell me more about how to lose the 60lbs I gained with each.....oh nutcracker is the key! Dropped all 60 lbs in about a year without trying..
mike hunt I am so sorry you are struggling. I have it myself and Dr. Kurtis (Kak) Kim at Mercy Medical Center in Baltimore is my Dr. and I am so grateful for him. I don’t know if you can get insurance to cover you there? Also, Jessica Lynn on UA-cam has a huge testimony and a successful recovery with mention of the Dr. out in Wisconsin, I believe. Drs are still learning so much about this and we need to be the advocates. I will be praying for you Mike. This is not an easy journey but there are Drs that are trying to find answers and hopefully bring us relief.
I’m in west Australia and a Professor Richards will hopefully agree to operate next month… 🙏🍀🙌 depending how bad/condition maybe another surgeon is able to stint in WA. Don’t give up 🍀
I have nutcracker syndrome I had an LRVT and now I need my Kidney removed . His condition is debilitating and I see this right now in excruciating pain and I’m tired of this fight I pray for everyone in my shoes to get relief because most of us kill ourselves
Nicole, why do you need your kidney removed? Was it already done? How do you feel now, better than in the very beginning? I ask that, because have heard, that kidney removal is also an option by nutcracker syndrome...
@@Eyrana still not yet don’t it doesn’t correct the issue but at least takes away the most Impacted Oregon so hopefully I won’t feel what’s going on as much. They are trying to make me consider other treatment options that result in years of more treatment. It’s depressing it never stops the pain the feeling that I’ll never get rid of this curse
That’s because the nutcracker has been left for too long and irreversible kidney damage occurs. I’ve been diagnosed this year as I’m not willing to lose hope for a life without crippling pain. Im mostly bedridden now and I’m not going to give up as I’ve been robbed of a functional life for over a decade and now basically bedridden. Don’t give up no matter what, hot showers and cool hot balms help be aware of the dehydration and even if you can’t hold it down swish it in your mouth and spit it out to save temp renal failure. Have liquid meals on hand and coconut water. Best of luck to all of us with this debilitating condition and may we have hope for a life without crippling pain🙏🍀🙏🍀🙏🍀🙏
@@Eyrana yes but that didn't work so I ended up having an LRVT surgery. and that had made a small difference as I'm not in a wheelchair anymore but still get pain and blood in urine. still working on getting the pain under control but it's a big difference. the stent was ultimately removed during the LRVT surgery.
@@AliceAbernathy2010 I'm really sorry it didn't work with the stent... may I ask what exactly didn't work? Were all symptoms still there, or have you had complications? Hopefully you get to complete normal with time, maybe the result just doesn't come at once by LRVT?
@@AliceAbernathy2010 I see. Thank you for your answers! 🙏 Best luck for you, hopefully the pain dissappears completely itself, or God sends you the right doctor and the right solution for your situation.
![Lp. Сердце Вселенной #60 РОЖДЕНИЕ ЛОЛОЛОШКИ [Финал] • Майнкрафт](http://i.ytimg.com/vi/YoR0pAV9FVQ/mqdefault.jpg)
My daughter has been to Mayo, Cleveland & is scheduled for the auto-transplant surgery in WI. She has EDS & Nutcracker among other things. She has lost so much weight. She just got a feeding tube which is hurting her so bad. I never thought so many Drs would be so uncaring. They wouldn’t even give her fluids in our local ER. For almost a year, they have tried to say it’s in her head. She has had to fight for every step of care and it’s taking so long she can barely hang on. I pray for every person going through this & hope they can get treatment quickly. The pain she lives in is so bad, God Bless all of you and I hope the best for you.
Yes, this is the unfortunate truth. I have Nucracker syndrome and had an open transposition surgery, it helped for about a year and then now I am in a worse state than before due to scar tissue closing my vein. I just got back from a disappointing appointment at the Mayo Clinic, the only thing they said is that I need to see a nephrologist! so disheartening after years of struggling. It affects every aspect of my life, even just having a bowel movement causes me terrible sharp pains all over my left side of my abdomen. I pray for my fellow people going though this daily struggle, at times it feels so hopeless and lonely. I pray that your daughter can find some help, maybe we will find a cure someday.
@@amandalittle9093 - Thx for the info.
@@amandalittle9093How are you doing now?
I’ve had nucracker for 11 years that I know of and doctors messed up and didn’t call me when it said I needed to be referred to vascular after I went into the er for immense pelvic pain that I suffered for years before that. After going sepsis 2 years ago they then saw it and sent for someone to call for a referral which never happened. Now I’m scheduled in a month to have my surgery. I have nutcracker and may thurner that has caused pelvic congestion syndrome. I’ve been to so many doctors and had so many er visits and constant UTIs and everyone said there was nothing wrong with me. Wasn’t until I went to a new GI doctor and they said you need to go to Vascular. They have two CT scans showing pelvic congestion syndrome and you were supposed to be referred there. I’m happy that you are better. I’m in pain all the time from it.
Also have sma syndrome and pituitary tumor. My body just sucks. 😭 I’m glad you are better!
@@apriltobias8665I thought there was treatment for pcs?
I had to fight for 2years and I found it on my ct scan report after once again the ER sent me home not caring I showed my doctor and he said “that’s your answer right there” I couldn’t believe it after going to different doctors one doc said I should take Ibuprofen for a while I’ll be ok smh it’s a hard journey and very depressing I felt like giving up on life fight for yourself! I’m glad you found your answers 🙏🏾
This happened to me to! I seen pelvic congestion syndrome on my CAT scan and the ER doctors didn’t even tell me so I brought it to my OB/GYN and that’s what got me then a gram and found out that I had nutcracker Mazer in ours and pelvic congestion syndrome now I’m on my way to have surgery for
Hi! Did you get surgery?
@@Cyndi-G87 yes I got a stent placement but the pain is back 😭
@@THATMOMOF4oh no! I’ve been sick for a year and already had a different compression fixed but wasn’t better after surgery but was just diagnosed with nutcracker syndrome and I don’t know much about it.
I was just diagnosed a few months ago and I am going in July for a left renal vein transposition. Im so so hopeful it'll be as life changing as it was for you!!! So happy for you!
Hi, can you please share how you are feeling now, and how your recovery was/is? I went to the ER a few days ago with severe abdominal pain. A CT scan was done. The Dr. said everything was ok-nothing acute. I requested a copy of the imaging results and there is something listed that states, “there is retroaortic left renal vein.” Needless to say I’m very concerned. Thank you!
Yes! I can say the pain is excruciating and I hope I can get treatment soon. I was diagnosed last week.
I was diagnosed with this on September 20th, 2023. It was only by chance that it was found. I had lived with pelvic congestion for years, and everyone kept telling me it was endometriosis. The only way to diagnose it, however, was through surgery and I didn’t want a surgery without investigating all other causes of pelvic congestion first. My gut was right to see a vascular surgeon because he found out my pelvic congestion came from nutcracker syndrome. The pinched renal vein caused blood to overflow into the ovarian vein, and the best way to fix it was an ovarian vein transposition. I’m a lot better than I’ve been in a long time, but this illness wrecked my life for almost ten years. It’s going to be a while before I’m okay again.
❤❤❤Amen keep shinning hun I'm dealing with this right now with no pain help or treatment
OMG!! I've lost four YEARS of my life now! Debilitating pain in my abdomen, pelvis and back.. I've since dropped a ton of weight, can't eat or not eat, stay in my bedroom day after day, night after night.. I'm 44 and I'm not living - just existing (can't lay down most of the time to even sleep).. I'm at the end of a very long, lonely, painful battle.. I don't want to go on like this - but, I haven't even had my grand babies yet.. I ache for ANYONE who's suffering like this - especially alone, ostracized
I hope you get help. I’m 26 and though I’m mad I went to the ER four times in August with just a slight mention of nutcracker syndrome and denial that it was actually a finding…. to learn it’s SMA syndrome which causes nutcracker syndrome thanks to the urologist I got referred to meeting with a vascular surgeon over it. I hope you get help or push a doctor to get referred to urology then vascular once they do CT scans hopefully
I was diagnosed with Nutcracker Syndrome a month ago. Meeting with my transplant surgeon in 9 days. Thank you for sharing your story and to everyone in the comments for sharing yours as well. ❤️❤️❤️
Same here, meeting my Transplant Dr next week. Hope all goes well for you ❤❤
hi Audrey, I was wondering what your surgeon said. Are you thinking about getting your kidney moved? I have been suffering with nutcracker for years now, and had my renal vein moved, but its back and I'm wondering if moving my kidney would be helpful.
Amanda Little hi! I haven’t met with him yet, due to the coronavirus they have put off all cases that are not currently emergent in my state. My transplant surgeon is meeting with me now on May 4th (hopefully!) I am also having a bladder biopsy coming up, because of some other recurring issues. I’ll keep you updated, I hope you are staying safe! Heating pads help a little with the pain for me. Anything help for you?
I have it do have they done anything for you yet
@@amandalittle9093 hey there hon I had the LRVT as well and it failed and I’m actually looking at getting my kidney removed in Dallas with Dr. Jeffrey caddudu Here’s another great doctor like Richard dickerman I tried to get in to see Richard but nobody answered me so you could also check out his office there probably 15 to 20 minutes apart from each other
I’m persisting for the surgery atm. This story is as my own, I have the 2 confirming scans,one from a vascular surgeon head and struggling for help by a professor
I have This!!!! And may thurners and pelvic congestion love this thank you surgeons
My 20 year old daughter may likely have this. Many doctors we've seen are clueless. We had a general surgeon grin smuggly at us, when we questioned the radiologist saying the CT scan was normal, and asking why there were no measurements on it, like we had no clue. My daughter had the typical protein and blood in her urine and it was flagged multiple times, and still no doctor saw it. This surgeon also told my daughter if she had pain while eating normally to eat like a dog (yes that's down in all 4s). I want to slap her.
Nutcracker diagnosed also but from Australia seems imppssible to get any help in Australia. Meanwhile body falls apart and quality of life consists of heat packs and laying down, loss of career and no pain management that works. I wonder if these drs do Telehealth apps or can coordinate with specialists here on how to help myself and fellow sufferers in Australia
I’m in WA currently persisting for the operation after 2 confirmation scans one from a Vascular Surgeon Head of department.
Type in nutcracker surgeons and there’s a place in QLD to check out. Don’t give up!
Prayers and blessings to you as it’s excruciating and I couldn’t wish it upon my worst enemy, best of luck 🍀🙌🍀
Where are you as I have been researching outside of WA. Japan is also renown for this surgery. I’ve just joined a world site for rare conditions
I was diagnosed with NUTCRACKER after years myself of pain , no help , total reconstructive surgery of one kidney and things got worse .. I need help 😭😭
I have nutcracker syndrome, an I live in Belarus. Here too they seem to know nothing about it... I have been struggling with this condition for 20 years until I got diagnosed. But now I'm quite clueless at how to fix it... One doctor says stent, another - laporotomic operation... I have 2 left renal veins, one is entrapped, another drains into intercostal veins, which most probably is also the cause of pain. This anomaly makes everything even more complicated... I would be extremely grateful, if people, who have had these or that surgeries with this syndrome would share their experiences! 🙏
Also, if someone knows a doctor, who can consult online on which operation to choose, I would highly appreciate your help.
Doctor in Rostov on Don does this kind of surgery,he is name is Uglov Arkadiy Ivanovich
I was just diagnosed after 13 years of teying to find out what was wrong with me! Now to just get treatment
I have my CT scan tomorrow. I'm so nervous. I feel like this is what I'm dealing with.
Wow. I hope you are not that bad.
I also got told to eat fruit, more water and exercise it away! When i was one month post partum....tell me more about how to lose the 60lbs I gained with each.....oh nutcracker is the key! Dropped all 60 lbs in about a year without trying..
Im going here I have nutcracker syndrome and they seem to know nothing here
mike hunt I am so sorry you are struggling. I have it myself and Dr. Kurtis (Kak) Kim at Mercy Medical Center in Baltimore is my Dr. and I am so grateful for him. I don’t know if you can get insurance to cover you there? Also, Jessica Lynn on UA-cam has a huge testimony and a successful recovery with mention of the Dr. out in Wisconsin, I believe. Drs are still learning so much about this and we need to be the advocates. I will be praying for you Mike. This is not an easy journey but there are Drs that are trying to find answers and hopefully bring us relief.
@@trhip03 dr dickermen was horrible and so was his staff
@@trhip03 Hi, have you had NCS treatment? I'm in DC metro area. Thanks
I’m in west Australia and a Professor Richards will hopefully agree to operate next month… 🙏🍀🙌 depending how bad/condition maybe another surgeon is able to stint in WA. Don’t give up 🍀
I have nutcracker syndrome I had an LRVT and now I need my
Kidney removed . His condition is debilitating and I see this right now in excruciating pain and I’m tired of this fight I pray for everyone in my shoes to get relief because most of us kill ourselves
Nicole, why do you need your kidney removed? Was it already done? How do you feel now, better than in the very beginning? I ask that, because have heard, that kidney removal is also an option by nutcracker syndrome...
@@Eyrana still not yet don’t it doesn’t correct the issue but at least takes away the most Impacted Oregon so hopefully I won’t feel what’s going on as much. They are trying to make me consider other treatment options that result in years of more treatment. It’s depressing it never stops the pain the feeling that I’ll never get rid of this curse
@@Eyrana excuse the typos
@@Sprunki-174 Thannk you for your answers. Is the need of the kidney removal the result of the unsuccessful LRVT? If yes, what went wrong with it?
That’s because the nutcracker has been left for too long and irreversible kidney damage occurs. I’ve been diagnosed this year as I’m not willing to lose hope for a life without crippling pain. Im mostly bedridden now and I’m not going to give up as I’ve been robbed of a functional life for over a decade and now basically bedridden. Don’t give up no matter what, hot showers and cool hot balms help be aware of the dehydration and even if you can’t hold it down swish it in your mouth and spit it out to save temp renal failure. Have liquid meals on hand and coconut water. Best of luck to all of us with this debilitating condition and may we have hope for a life without crippling pain🙏🍀🙏🍀🙏🍀🙏
I was told they just put in a stent and that would fix it
Claudia, have you received the stenting surgery? How do you feel now?
@@Eyrana yes but that didn't work so I ended up having an LRVT surgery. and that had made a small difference as I'm not in a wheelchair anymore but still get pain and blood in urine. still working on getting the pain under control but it's a big difference. the stent was ultimately removed during the LRVT surgery.
@@AliceAbernathy2010 I'm really sorry it didn't work with the stent... may I ask what exactly didn't work? Were all symptoms still there, or have you had complications? Hopefully you get to complete normal with time, maybe the result just doesn't come at once by LRVT?
@@Eyrana all the symptoms were still there
@@AliceAbernathy2010 I see. Thank you for your answers! 🙏 Best luck for you, hopefully the pain dissappears completely itself, or God sends you the right doctor and the right solution for your situation.