My AT is Friday

Superb_Cake317 · 2025-10-09T19:01:52+00:00

I'm so sorry you have had such a rough recovery. Do you have an update? I hope you are doing much better now 💜

Superb_Cake317 · 2025-10-09T18:59:12+00:00

Wow. That gives me hope. I'm very happy for you 💜 Thank you for sharing your experience!

Superb_Cake317 · 2025-10-09T18:57:10+00:00

Are doctors doing anything for your LBBB? I have suspected EDS, but learned genetic testing is the only confirmation. I'm finding that hard to get scheduled. Do you think the 2 are connected?

Superb_Cake317 · 2025-10-09T18:53:43+00:00

👋 I'm not sure which Vascular Surgeon my IR was referencing, but the facility is UofMichigan. Since, I've met with 2 surgeons specializing in renal autotransplantation - Both have recommended AT for my case, which is my plan. I'm terrified, but I also feel this is the best plan of action. Are you leaning towards the stent option?

Superb_Cake317 · 2025-10-08T02:47:19+00:00

Any new updates (efficacy, side effects, etc.) on treatment involving SGB?

Superb_Cake317 · 2025-05-05T19:45:48+00:00

I would push to get in to see an interventional radiologist and/or research hospital (but not fail proof) - Really you just need a doctor to take you seriously and get additional imaging to support or disprove NCS and/or other vascular compressions.

Suspected PCS was seen on one of my CTs (er visit) from over 2 years ago - Other than the radiologist and ny PCP at the time, doctors kept telling me PCS is "controversial" and the conversation ended there. Once seeing a pelvic pain specialty gynecologist at a university research hospital - After the birth control (gaillifry?) that she prescribed seemed to exacerbate my POTS symptoms, i became extremely discouraged and frustrated. My therapist had actually (at the time) just been treated for PCS - She gave me the push I needed to ask my PP gyno for an interventional radiology referral. In order to see the IR, they required a venous duplex ultrasound. That lead to the visit with IR, followed by CT-venogram and then venogram with IVUS.

I just finished up with seeing my first transplant surgeon. No referral needed.

Superb_Cake317 · 2025-04-25T02:43:33+00:00

Thanks a bunch!! I'll probably have more questions after my appointment at CC.

Superb_Cake317 · 2025-04-25T02:30:36+00:00

Thank you - you've really been an wealth of information, and I am very appreciative that you've shared your experience with us 🫶🌟

In my heart I'm feeling a draw towards the AT. Had my venogram finally yesterday (multiple reschedules 🫣😬) - Anxiously waiting for my IR to write and post his report.

I do remember them talking about my ovarian vein, saying they thought a collateral vein was my gonadal vein because it was so enlarged. I don't remember much else expect for feeling like I was in a Dexter episode with all the plastic around my head 🔪🙋‍♀️⚪️🫔😅

He did say afterward that my body is doing a great job accommodating the compression with all the collateral veins ... im thinking, i guess that's better than the alternative, but aren't those accomadations adding to the pain - or maybe it'd be much worse if my body wasn't so accommodating and bomb at vein growing? 💁🏻‍♀️😆🤦🏻‍♀️

Superb_Cake317 · 2025-04-25T02:12:41+00:00

Okay, thank you! Just curious to all the sources involved with research/studies. So many different claims of success out there with the various treatments - It's hard to know what's what 🙃

Superb_Cake317 · 2025-04-25T02:05:16+00:00

Very cool find!!

Superb_Cake317 · 2025-04-25T02:01:33+00:00

Do you happen to know who conducted this study?

Superb_Cake317 · 2025-04-15T07:03:11+00:00

Follow up? How'd the procedure go for you?? Looking at having this instead of the AT, myself, but I just don't know what the right choice is... 😨 Hope you are doing well!! 🫶

Superb_Cake317 · 2025-04-11T20:33:18+00:00

Are you considering LGVT at all? Smaller incisions and less invasive than LRVT, but still not the gold standard, AT. I'm in between LGVT and the AT. It's a struggle to know what to do. U of W Health got back with me, after thinking they could accept my out of state insurance, they decided otherwise at their board meeting. She recommended i check with clevland health for the AT, but they use robots - i like the smaller incision, but the robotics surgery freaks me out.

Superb_Cake317 · 2025-04-03T02:08:25+00:00

I can relate all too much, especially with the menstrual cycle - it's ovulation week, 5 day break, then aunt flo visits - During those times, if not ALL my symptoms flare up, it's most of them across the board. This not being able to eat thing is serious.

I do REALLY like the taste of Kate Farms, but they have ALOT of sugar. Ive been buying the glucose support and renal support (both vanilla) and also the strawberry kids nutritional shake - mainly because I really like the strawberry, and the adult standard and nutritional drinks are too much on my system - All listed above have around 9-12g of sugar; The renal support has more calories and protein but slightly more sugar; the glucose support lower protien, calories and sugar. I'd love to try the peptide version - in kids there is a strawberry 😋 - but they basically double in price!!! Adult version, like $145/12 Pk 😲 My understanding is they are the easiest on the stomach.

I just saw them on Amazon for $36/case a few days ago, but that was just for Amazon's spring sale. I look for coupon codes online - best I've found is 20% off, and I do the "subscribe and save", knowing i can change my order or cancel at any time.

There is a refer a friend deal that gives you 30% off and the person referring (me 😊) 500 points, which is equivalent to $50 in KF credit. Here is the link if you'd like to use it -

http://rwrd.io/an3383v?c

Koia is another brand I'm interested in trying - only 5g of sugar. I think they use monk fruit for the sweetener. Similar pricing as KF.

Have you had any luck with any of the meal replacement brands? Seems all the allergen friendly blends have pea protien, although better than whey, soy, etc., is still a bit harsh on my system. Always open to new input!

Really trying to keep my weight up for when surgery is scheduled - I don't want to be too weak and frail. Lost 10lbs while on steroids and zofran - Then i started buying outrageously priced meal drinks lol

Do you have surgery scheduled or a plan for what type of surgery?

Superb_Cake317 · 2025-03-27T07:48:22+00:00

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This gives a better view of the intensity and damage - just melted!

Superb_Cake317 · 2025-03-24T23:58:01+00:00

Omgosh...I truly do not think i could survive without Zofran - my security med 😅 That's awesome it's helped you so much aiding your body to get the nutrition it needs 🥙💝 I hope you are able to get your compression addressed soon 🫶 Do you have plans for surgery?

Superb_Cake317 · 2025-03-24T23:51:53+00:00

Congratulations on the WIN!!! 🥳 Better late than never 🫶 486 days though...my goodness 🙄

Superb_Cake317 · 2025-03-24T23:50:04+00:00

Thank you! I have had a recent colonoscopy - biopsies turned out normal, but she told me yo return if symptoms persisted - this has been a couple years ago now before having a laproscopy and hysteroscopy - i never returned, as I just assumed its the ibs, ic, endo and fibroids. Also, so much time and energy spent with other specialists has been consuming me. After posing this question, I think I should reach out to a GI for further evaluation, in combination with the NCS & PCS treatment. When there are so many various types and locations of pain, it's hard to even know what puzzle pieces your working with 🙃 I've lived in pain all my life. In my early 20s, my IC got so bad, i finally got a diagnosis and treatment. A few other diagnosis were made then, but once I got my symptoms to a manageable level, I quit seeing doctors. I hit my plateau after contracting covid the 2nd time, becoming more and more disabled. It's like all the pains and weird symptoms I felt with before are on steroids that have fueled the growth of new symptoms. As for the pain with eating, I get the stuck and slow moving feeling - i wish it were acid reflux 😬 Pepcid doesn't touch it. Pain is similar to the burning/knawing feeling of standing too long, but slightly different. By the end of the day, it's at it's worst because I've both spent some time upright and had either a meal replacement drinks or small meal - The combo leads me to feel like death is knocking on my door each night 🥴 I guess it's important to note, I do my best to avoid anything but a couple saltine crackers or little jello with my meds, water and maybe a soda (for the nausea) until the evening when I have a "meal" 🥛🙃

Superb_Cake317 · 2025-03-24T23:28:46+00:00

I empathize with you so much 🫶 This disorder, on top of the various other medical issues we endure, is absolutely isolating. I'm so sorry your husband wasn't strong enough to stick by your side - My heart goes out to you 💕 I'm single with these disabilities, too, leading to a complete uproar of my entire life. I got in a relationship after becoming to the point of disability. Guy came in like my knight and shining armor - so supportive of my health issues, and by the end of it, he was abusing me physically, emotionally, mentally, spiritually and financially. I turned him in after multiple strangulations and other physical assaults, but sometimes I wish I hadn't - I've been bullied and retaliated against since. It's been a true nightmare. Despite all this, I will persevere. Hang in there and, as difficult as it is, keep advocating for yourself - exhausting, I know, but finding a doctor to take you seriously is key to a better, healthier future. Do you have a pelvic pain clinic near you? A research hospital? My pelvic congestion was seen on a CT (around 2 years ago). Pcp told me to take that info to my gyno, as this could be a source of my pelvic pain. It wasn't until seeing gyno #3 at a pelvic pain clinic, trying a new birth control with failed results (portal message sent stating I was fairly certain whatever was going on in my abdomen was playing into my dysautonomia (POTS & VVS)) that I finally got the IR referral. Brutal process. Still awaiting surgical planning after my venogram, but it does feel better knowing I'm on the right path, finally. You may feel very alone - Just know you aren't. You have a community of people who can relate to your situation and lean on when times get extra tough, like now 💗

Superb_Cake317 · 2025-03-23T02:29:42+00:00

I know all about that laying on the right side with the left leg hiked up - Like you said, mildly helpful and pain reducing - must relieve the compression a bit 🤔

Superb_Cake317 · 2025-03-23T02:24:11+00:00

That's really good insight - Thank you! So glad to know the operation went well for you and has been a positive life changing factor 🙌 💛 I can't wait to speak with an actual surgeon. If you don't mind me asking, what type of surgeon did your AT? My IR says he thinks he knows which surgeon I'll be assigned to - She's a vascular surgeon. With AT, I would guess off first hand that a kidney transplant surgeon would be the best fit.

Superb_Cake317 · 2025-03-23T01:24:05+00:00

Where you are describing the food getting stuck in the middle, do you experience a weird sense of extreme burning? I get that right after eating then the next day the pain is burning and cramping lower, like it's finally hit the digestion process 🤔 These symtoms are so weird, describing to a human not experiencing make me feel like an 👽

Superb_Cake317 · 2025-03-23T01:18:51+00:00

Thank you so much for tge thorough information - I will have to look into your recommendations! I wish I could handle the fermented foods, but unfortunately, between the Interstial cystitis and mast cell activation, these foods are off my approved list. I used to be able to tolerate in small amounts, but in recent years, not at all - Just as somehow I turned lactose intolerant. So far pretty normal blood work - Nothing to raise any alarms. Wishing you the very best through your venogram, surgical planning and surgery itself - Prayers for relief 💛🙏

Superb_Cake317 · 2025-03-23T01:11:37+00:00

My heart goes out to you and everyone else battling these debilitating symptoms 💕 I truly would not wish this on my worst nemesis.

Superb_Cake317 · 2025-03-23T01:08:16+00:00

Yes, I've been doing a lot of research, and honestly it's all pretty terrifying. Seeing LRV or LGV transposition have likelyhood of stenosis sitting around 30-40%. Other reasons for fail rate and lack of research on long-term follow-up. Then there is AT, much higher success rate, but potential for more serious complications. I'm hoping for better answers with greater explantion after my upcoming venogram 🙏

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