MEDICAL UPDATE!! FINALLY HAVE A DIAGNOSIS!! WHAT IS PCS & NCS??

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Hey Foxxy People,
This is basically a Part 2 to my previous "Medical Mystery Journey". I left that video off with such sadness and the feeling of loneliness because I was so sick of all the tests and never having any answers. WELL, now I know why! I've been diagnosed with Pelvic Congestion Syndrome caused by Nutcracker Syndrome. These as well as some other compression conditions are so extremely under diagnosed!!
Even after I got a diagnosis it was still an extreme back and forth journey just to get to a treatment plan. This video is hopefully going to help someone else who is struggling and being passed around to different drs without any answers. I felt so alone in my struggles and after I found a support group online, I found out I'm FAR from alone! So hopefully if you're reading this then you can find some comfort knowing that you're not alone either.
Just PLEASE PLEASE PLEASE always fight for your health! Be your own advocate, don't let anyone tell you that your concerns are not true!
Love you all and thank you so much for your support through this journey. I have surgery next week and then I can FINALLY get back to regular videos!!
See Ya'll on the other side of this nightmare ;)
Stay Foxxy,
Mandie
Check out Part one of this "My Medical Mystery Journey" where I talk about all my random symptoms, tests/procedures/scopes/surgeries that I've been through so far:
• I'M A MEDICAL MYSTERY!...
MY SURGERY & RECOVERY JOURNEY: • RENAL BYPASS SURGERY &...
WHAT I PACKED IN MY HOSPITAL BAG FOR SURGERY: • WHAT'S IN MY HOSPITAL ...
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Опубликовано:

9 авг 2021

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Комментарии : 15

@marypruitt425 11 дней назад

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?

@jessicarichardson4774 16 дней назад

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.

@cbernard3041 2 месяца назад

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..

@foxsquad6992 2 месяца назад

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

@snowwhite2709 Год назад

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.

@foxsquad6992 Год назад

Sure! Where’d you msg me? I’ll make sure to go check it!! :)

@b.6557 2 года назад

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!

@foxsquad6992 2 года назад

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 :)

@b.6557 2 года назад

@@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!

@foxsquad6992 2 года назад

@@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 😘

@snowwhite2709 Год назад

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.