Oh my goodness! Thank you so much for your video. I go in tomorrow for the internal vein mapping for my nutcracker syndrome. He said that it's supposed to be open like 10 mm and mine's less than one. Also pelvic congestion etc. I was diagnosed (also in Virginia like you)in 2017, yet I did nothing about it due to my father being ill and passing. I went through adrenal failure And other health things that I was going through. I too have many other health issues like rheumatoid arthritis and also a small home in my heart. One of the things that they speculate caused my nutcracker syndrome was because I lost 240 lbs by gastric bypass. I went through a stage where my legs were probably four times a size they should have been and they accidentally found the nutcracker when they were doing lymph system diagnosis. The pain that I have felt and been in the ER for at least five times. This last year was a severe ache under my left ribs. Every doctor, every specialist every ER doctor thought it had to be due to my remaining pouch- small stomach. They were thinking it was adhesions or something of that nature. I have been in pain for so many years. The dizziness is debilitating. Weakness in my arms too. And no one could find it. Until I went to this artery and vein specialists here in Arkansas. I'm not going to lie. I'm a little scared. Because they've told me that with how bad mine is they have no idea how I was walking in there and am alive. Also, my left kidney is bad and enlarged due to trapped blood. I was just "re" diagnosed last week on Tuesday and I'm going in tomorrow. It's that serious. Only a 1% flow and he is baffled that I've not had an aneurysm or stroke by now.
I was just diagnosed with Nutcracker Syndrome. It's been 3 months and I have been unable to get good help. I have had 3 childrens as well and had symptoms for many years before I was recently diagnosed. I can relate to your story. Thank you so much for sharing it and providing such helpful information.
Thank you thank you thank you for posting!! My brother is barely getting diagnosed. One of his VA doctors diagnosed him with Nutcracker maybe 2 weeks ago and he will be having the auto transplant soon. Just as you believe you brother has it, i believe our mom does too. I'll be looking as hard as i can for more help. I just wanted to thank you because ive seen dr after dr undermind, ignore, neglect, etc already! (We were sent home from the er with an ulcer diagnosis knowing his bladder was full [ his scan sore was well over 300... 50 is cause of concern and 200 is considered dangerous] and did not address that or look into WHY or offer any relief or explanation, as im sure you well know the feeling when specific problems are not acknowledged). Anyways my heart goes out to all of you and families!! I wish you all of the prayers, luck, vibes, energies or whatever you believe in!! You are amazing and i appreciate the time you took to advocate!! Have an incredible day! You've helped my family already!!!❤❤❤❤
A very long video, wonder how you are doing now and whether you decided to go ahead with your treatments for NCS. The thing is you should never do pelvic embolisation or any other procedures to the legs without addressing the Nutcracker first. In some cases embolisation can make things worse. I had two embolisation. My gonadal vein was coiled which was’t a great thing to do. Now my NCS is 75 to 80% compressed maybe more. I just had a flare up. OMG labour is nothing in comparison. My proposed treatment is LRVT with internal stent which doesn’t ‘work in most cases. AT was discussed but considered very invasive. I am very scared to go through my LRVT.
I was just diagnosed with circumaortic left renal vein and suffered from severe pelvic pain my entire life. I can’t believe with all the exploration and imaging I’m finding out at 50 I have a birth defect is so surreal. It causes pelvic congestion, and a bunch of stuff. I have stage 4 endo and pcos so I always just assumed was from that. It is fatal during surgery so I’m lucky I never hemorrhaged to death during adhesion removals.
Ive been diagnosed twice only to be put through a multidisciplinary approach to my care in West Aust.. it is actual BULLYing by a team of bullies trying to gaslight me for the pain that is excruciating Nutcracker has robbed me of life and has caused me so much anguish due to post confirmation treatment that does not include any hope for living pain free future
I’m 100% certain that I have nutcracker syndrome. Years ago I was diagnosed with pelvic congestion syndrome luckily I found a vascular specialist who listened to my symptoms and put a stent in me and the symptoms subsided. Fast forward to now and I’m starting to have left abdominal pain which feels like it’s coming from my kidneys. The pain is like a sharp stabbing pain that radiates to my back also radiating to the front of my thigh. I’m thinking I have a kidney stone but doctors don’t see anything. Several scans later and doctors are dismissing me than after researching myself I have decided to make another appointment with my vascular specialist and bringing this up! My vascular specialist is also named Dr Lee! 😮
I've just been diagnosed with this due to going into a &e thinking I had appendicitis I've been suffering for years without anything being diagnosed due to nit getting ct scan that made me hot,I have pelvic congestion ,lesion on left lobe of liver and cyst on ovarie the hospital I went to everything is a confusion I need to see gynae kidney dies and liver docs I'm having lots of problems I was given a diagnoses when I came home from hospital never got explanation
Thank you for sharing! You are a Godsend and I will be reaching out tomorrow!
Oh my goodness! Thank you so much for your video. I go in tomorrow for the internal vein mapping for my nutcracker syndrome. He said that it's supposed to be open like 10 mm and mine's less than one. Also pelvic congestion etc. I was diagnosed (also in Virginia like you)in 2017, yet I did nothing about it due to my father being ill and passing. I went through adrenal failure And other health things that I was going through. I too have many other health issues like rheumatoid arthritis and also a small home in my heart. One of the things that they speculate caused my nutcracker syndrome was because I lost 240 lbs by gastric bypass. I went through a stage where my legs were probably four times a size they should have been and they accidentally found the nutcracker when they were doing lymph system diagnosis. The pain that I have felt and been in the ER for at least five times. This last year was a severe ache under my left ribs. Every doctor, every specialist every ER doctor thought it had to be due to my remaining pouch- small stomach. They were thinking it was adhesions or something of that nature. I have been in pain for so many years. The dizziness is debilitating. Weakness in my arms too. And no one could find it. Until I went to this artery and vein specialists here in Arkansas. I'm not going to lie. I'm a little scared. Because they've told me that with how bad mine is they have no idea how I was walking in there and am alive. Also, my left kidney is bad and enlarged due to trapped blood. I was just "re" diagnosed last week on Tuesday and I'm going in tomorrow. It's that serious. Only a 1% flow and he is baffled that I've not had an aneurysm or stroke by now.
I was just diagnosed with Nutcracker Syndrome. It's been 3 months and I have been unable to get good help. I have had 3 childrens as well and had symptoms for many years before I was recently diagnosed. I can relate to your story. Thank you so much for sharing it and providing such helpful information.
Thank you thank you thank you for posting!! My brother is barely getting diagnosed. One of his VA doctors diagnosed him with Nutcracker maybe 2 weeks ago and he will be having the auto transplant soon. Just as you believe you brother has it, i believe our mom does too. I'll be looking as hard as i can for more help. I just wanted to thank you because ive seen dr after dr undermind, ignore, neglect, etc already! (We were sent home from the er with an ulcer diagnosis knowing his bladder was full [ his scan sore was well over 300... 50 is cause of concern and 200 is considered dangerous] and did not address that or look into WHY or offer any relief or explanation, as im sure you well know the feeling when specific problems are not acknowledged). Anyways my heart goes out to all of you and families!! I wish you all of the prayers, luck, vibes, energies or whatever you believe in!! You are amazing and i appreciate the time you took to advocate!! Have an incredible day! You've helped my family already!!!❤❤❤❤
A very long video, wonder how you are doing now and whether you decided to go ahead with your treatments for NCS. The thing is you should never do pelvic embolisation or any other procedures to the legs without addressing the Nutcracker first. In some cases embolisation can make things worse. I had two embolisation. My gonadal vein was coiled which was’t a great thing to do. Now my NCS is 75 to 80% compressed maybe more. I just had a flare up. OMG labour is nothing in comparison. My proposed treatment is LRVT with internal stent which doesn’t ‘work in most cases. AT was discussed but considered very invasive. I am very scared to go through my LRVT.
I was just diagnosed with circumaortic left renal vein and suffered from severe pelvic pain my entire life. I can’t believe with all the exploration and imaging I’m finding out at 50 I have a birth defect is so surreal. It causes pelvic congestion, and a bunch of stuff. I have stage 4 endo and pcos so I always just assumed was from that. It is fatal during surgery so I’m lucky I never hemorrhaged to death during adhesion removals.
Ive been diagnosed twice only to be put through a multidisciplinary approach to my care in West Aust.. it is actual BULLYing by a team of bullies trying to gaslight me for the pain that is excruciating
Nutcracker has robbed me of life and has caused me so much anguish due to post confirmation treatment that does not include any hope for living pain free future
I’m 100% certain that I have nutcracker syndrome. Years ago I was diagnosed with pelvic congestion syndrome luckily I found a vascular specialist who listened to my symptoms and put a stent in me and the symptoms subsided. Fast forward to now and I’m starting to have left abdominal pain which feels like it’s coming from my kidneys. The pain is like a sharp stabbing pain that radiates to my back also radiating to the front of my thigh. I’m thinking I have a kidney stone but doctors don’t see anything. Several scans later and doctors are dismissing me than after researching myself I have decided to make another appointment with my vascular specialist and bringing this up!
My vascular specialist is also named Dr Lee! 😮
That’s crazy….my vascular doc is Dr. Lee too😂
I've just been diagnosed with this due to going into a &e thinking I had appendicitis I've been suffering for years without anything being diagnosed due to nit getting ct scan that made me hot,I have pelvic congestion ,lesion on left lobe of liver and cyst on ovarie the hospital I went to everything is a confusion I need to see gynae kidney dies and liver docs I'm having lots of problems I was given a diagnoses when I came home from hospital never got explanation
I guess I am lucky because I was diagnosed after 4 months of knocking to every doctor door
I ready to have renal Aurty transplant
Are you going to have surgery?
GOD bless