Oh my gosh, I’m going through this right now!! It’s like crazy trying to convince a doctor to pay attention! But I did get my first venal ultrasound today, waiting on results right now.
Dont get discouraged. ER docs are looking for emergencies. Rarely, do they provide anwers. I have been going through this for years too, my pain is on the left though. Have already been diagnosed with "suspected" pelvic congestion by gynecologist, then saw a vein surgeon but my insurance doesn't cover a venogram. I am 4 days recovering from a diagnostic laproposcopy that didn't show much. Since the pain is worse with menstruation and ovulation and effects under my left rib at times to my groin, we also thought it was endometriosis. My gynecologist doesn't know much about pelvic congestion, she was going to give me a hysterectomy and remove my ovaries because thats where my dilated veins are located. Insurance denied that. Now, after going through this diagnostic laposcopy, that showed nothing, she is going to fight insurance to cover hysterectomy for pelvic congestion. I also have Elhers Danlos Syndrome that wasn't diagnosed until 37. It's been a very long journey for me, through years of pain and mystery. I will continue to look for your updates and just wanted you to know, you are not alone.
I’m 59 and two years into this painful journey. It’s a result of a roofie and R on a 6th date. It did internal damage. I went from VCA and the moved on to May Thurners but the pain is still substantial and I have signs of poor blood circulation. I obviously haven’t dated since, it’s all very scary. I’m a biz professional and blessed to be able to carry on with my career. Your video is 2021, I’d love to hear the outcome in 2024. Ha..do you still get notifications?
I havent been able to fully watch all your videos but i have a question. I have been diagnosed with nutcracker just saw vascular and have a venogram scheduled for August. I have been having left side abdominal and flank pain for about 8 months. I just in the last two months started having right side flank pain. U mentioned your pain was right sided but nutcracker left (which it usually is due to sma,) but was wondering if they found anything to be wrong with right kidney or if the right sided pain subsided after your surgery. My brain is trying to process i am a nurse but this is so rare hard to fully understand. It makes me wonder is my right kidney working to hard to make up for the left??! I feel stupid but cant help but wonder. I dis have protein in urine not sure if youve had that but i guess can poss be early sign of kidney disease so making me worried!
Hey! Yes my pain was 99% always right sided. Now that I’m 11 months post-op I have basically no pain anymore. Even the minimal flareups I was having a few months ago, are basically all gone. Nothing was ever mentioned about anything wrong with the kidneys. It was just the NCS which caused pelvic congestion syndrome. I do know from a Facebook support group I’m in that everyone has such a range of various symptoms though. Also that a lot of them have more than just one compression which causes different symptoms. I don’t remember protein in my urine but ALWAYS blood. So everytime I went to the hospital they would test for a uti, kidney infection or kidney stones- but they always came back “normal” I hope I answered your questions and eased your mind a bit. I’m here for anything I can help with :)
@@foxsquad6992 yes thank you! So glad to hear you are doing better. I am having a venogram done next month. Hope to get some more answers and will talk to my pcp about the protein. The vascular surgeon seemed to be more concerned about the protein rather than blood…? Was news to me but now has me concerned. I may try to search more for possible stent or see for second opinion for stent rather than such an invasive surgery it scares me to be cut open like that! But glad it worked for you!
@@b.6557 from what I’ve learned, the stent option would depend on where the compression is. Because some stents can actually migrate and move towards (sometimes even into) the kidneys themselves. TO ME, that scared me more. The surgery honestly wasn’t half as bad as I psyched myself up for. But I understand everyone feels/fears differently :) good luck girl. Please keep me posted on your journey! If you want anymore of a private conversation, feel free to follow and DM me on IG 😘
I agree with you totally. My daughter, 20, is going through investigations for MALS and or NCS. Yes, medical,staff can be incredibly rude. My daughter was told by one doctor that if she was in pain when eating to eat like a dog, (on all 4s) and yes we've had tests done wrong, imaging done wrong snd not read properly.
Im also recently diagnosed with nutcracker and going in for renal vein transposition in july. I'm also struggling exactly like you described for what do i expect?! What do i bring? How long will recovery be? Physical rehab after? So many questions..
I actually have a few other videos explaining those questions exactly!! :) I highly highly suggest asking your surgeon about the option for bypass. A lot of LRVT’s fail because the renal vein is TOO damaged and simply just moving it, doesn’t help! I THINK I explained that in this video, if not I’ll try and make a “shorts” reply in a bit- just too much to type lmao
Oh my gosh, I’m going through this right now!! It’s like crazy trying to convince a doctor to pay attention! But I did get my first venal ultrasound today, waiting on results right now.
Dont get discouraged. ER docs are looking for emergencies. Rarely, do they provide anwers. I have been going through this for years too, my pain is on the left though. Have already been diagnosed with "suspected" pelvic congestion by gynecologist, then saw a vein surgeon but my insurance doesn't cover a venogram. I am 4 days recovering from a diagnostic laproposcopy that didn't show much. Since the pain is worse with menstruation and ovulation and effects under my left rib at times to my groin, we also thought it was endometriosis. My gynecologist doesn't know much about pelvic congestion, she was going to give me a hysterectomy and remove my ovaries because thats where my dilated veins are located. Insurance denied that. Now, after going through this diagnostic laposcopy, that showed nothing, she is going to fight insurance to cover hysterectomy for pelvic congestion. I also have Elhers Danlos Syndrome that wasn't diagnosed until 37. It's been a very long journey for me, through years of pain and mystery. I will continue to look for your updates and just wanted you to know, you are not alone.
I’m 59 and two years into this painful journey.
It’s a result of a roofie and R on a 6th date.
It did internal damage.
I went from VCA and the moved on to May Thurners but the pain is still substantial and I have signs of poor blood circulation.
I obviously haven’t dated since, it’s all very scary.
I’m a biz professional and blessed to be able to carry on with my career.
Your video is 2021, I’d love to hear the outcome in 2024.
Ha..do you still get notifications?
I havent been able to fully watch all your videos but i have a question. I have been diagnosed with nutcracker just saw vascular and have a venogram scheduled for August. I have been having left side abdominal and flank pain for about 8 months. I just in the last two months started having right side flank pain. U mentioned your pain was right sided but nutcracker left (which it usually is due to sma,) but was wondering if they found anything to be wrong with right kidney or if the right sided pain subsided after your surgery. My brain is trying to process i am a nurse but this is so rare hard to fully understand. It makes me wonder is my right kidney working to hard to make up for the left??! I feel stupid but cant help but wonder. I dis have protein in urine not sure if youve had that but i guess can poss be early sign of kidney disease so making me worried!
Hey!
Yes my pain was 99% always right sided. Now that I’m 11 months post-op I have basically no pain anymore. Even the minimal flareups I was having a few months ago, are basically all gone. Nothing was ever mentioned about anything wrong with the kidneys. It was just the NCS which caused pelvic congestion syndrome. I do know from a Facebook support group I’m in that everyone has such a range of various symptoms though. Also that a lot of them have more than just one compression which causes different symptoms.
I don’t remember protein in my urine but ALWAYS blood. So everytime I went to the hospital they would test for a uti, kidney infection or kidney stones- but they always came back “normal”
I hope I answered your questions and eased your mind a bit. I’m here for anything I can help with :)
@@foxsquad6992 yes thank you! So glad to hear you are doing better. I am having a venogram done next month. Hope to get some more answers and will talk to my pcp about the protein. The vascular surgeon seemed to be more concerned about the protein rather than blood…? Was news to me but now has me concerned. I may try to search more for possible stent or see for second opinion for stent rather than such an invasive surgery it scares me to be cut open like that! But glad it worked for you!
@@b.6557 from what I’ve learned, the stent option would depend on where the compression is. Because some stents can actually migrate and move towards (sometimes even into) the kidneys themselves. TO ME, that scared me more. The surgery honestly wasn’t half as bad as I psyched myself up for. But I understand everyone feels/fears differently :) good luck girl. Please keep me posted on your journey! If you want anymore of a private conversation, feel free to follow and DM me on IG 😘
I agree with you totally. My daughter, 20, is going through investigations for MALS and or NCS. Yes, medical,staff can be incredibly rude. My daughter was told by one doctor that if she was in pain when eating to eat like a dog, (on all 4s) and yes we've had tests done wrong, imaging done wrong snd not read properly.
Im also recently diagnosed with nutcracker and going in for renal vein transposition in july. I'm also struggling exactly like you described for what do i expect?! What do i bring? How long will recovery be? Physical rehab after? So many questions..
I actually have a few other videos explaining those questions exactly!! :)
I highly highly suggest asking your surgeon about the option for bypass. A lot of LRVT’s fail because the renal vein is TOO damaged and simply just moving it, doesn’t help! I THINK I explained that in this video, if not I’ll try and make a “shorts” reply in a bit- just too much to type lmao
How can we talk from messages? I am shocked from the similarities
Follow me on IG and we could talk through DM’s
Can you please share your doctor info
I absolutely would privately share that with you but I don’t think it would be of any help to you, I live in Canada :/
I tried to DM you, but don't know if you saw it. I had a few questions and I was told to contact you.
Sure! Where’d you msg me? I’ll make sure to go check it!! :)