Help Ashley get medical treatment for MTS, NCS, and OTC

As most of you know, I have been struggling with my health since early 2021. I ended up severely physically disabled to the point where I am a full-time wheelchair user and I am bed bound due to extreme pain. I am barely able to care for myself, showering 1-2x/week, have fully prepared meals delivered to my door, in addition to relying on family for other tasks. What most people do not know, is that I had started the process of obtaining Death With Dignity because of how low my quality of life is and how bad the pain is.

After diagnosing myself via review of my previous CT scans with May-Thurner Syndrome, I was able to find a specialist to confirm the diagnosis. A second opinion with another specialist also came to the same conclusion. I had two compressions in the left common iliac vein (LCIV) resulting in total collapse on that side and one compression in the right common iliac vein (RCIV).

I received my first stent on 11-6-2023 in my LCIV that opened up both of the compressions on the left side. Immediately after stenting, I was able to stand and walk for the first time in 8 months. My legs felt light as feathers and I could not believe how amazing they felt. And I was pain free! I was discharged the same day and my family drove me back home to continue my recovery. I was so excited to start rehabilitating and slowly becoming more functional in my home.

Upon getting home, I continued to practice standing and walking. But I started to decline a little after the surgery. After waiting about two weeks, I decided to try standing and walking again, along with starting some lower body PT exercises to strengthen my legs, glutes, and hips. I was able to consistently walk/stand each day in addition to doing the leg exercises every other day for about a month. I even progressed to walking on the treadmill and that was starting to feel easy. I also started cooking again and cleaning. I still had a decent amount of pain, but was able to push through it. I was even able to start tapering off of some of my medications that I had been taking to control my pain. I was still using the wheelchair, but was working on getting out of it. But then it all came crashing down a few days before Christmas 2023.

I could feel the pain getting worse, but decided to try pushing through. I kept reminding myself that I was fixed. My previous surgeon had advised me to push through the pain and keep trying to walk, stand, and exercise. But something just didn’t feel right. My body eventually completely relapsed, and I felt exactly how I did before my first stent, but a little bit worse. Initially, the right side felt worse than the left. But then the left side soon caught up. I became bed bound again due to the severe pain. I was devastated. It’s hard to lose your functioning again, to that level of severity, after getting a taste of a more normal life after suffering for 3 years.

After meeting with the new surgeon, we scheduled a follow-up ultrasound to try and understand what was going on. Did the stent collapse? Were there additional compressions? Had the right side compression advanced? All of these questions and more, could be answered with an ultrasound of the common iliac veins. From the ultrasound, it looked like the stent was not fully expanded and had compressed a little bit, there was a compression just after the stent, the stent was not completely underneath the artery, and it looked like the right side compression had advanced.

A second venogram + IVUS was performed on 5-2-24 by a different surgeon. The results were…unexpected. I should probably point out here too, 6 days before this procedure I re-examined my CTA and had tentatively diagnosed myself with nutcracker syndrome. I mostly kept that to myself though with the exception of telling Twitter, because I am not a vascular surgeon. And unfortunately, during this procedure, that compression was confirmed and there are collaterals around the compression indicating that the body is struggling in that area. Additionally, the stent had to be angioplastied out to its full diameter and the clots that had formed inside of the stent also had to be cleaned out. Despite being on an aggressive anticoagulation and anti-platelet regimen, clots still formed. The right side was also checked and everything looked good there. A few other things were checked and everything was good. It looked like there was good flow.

After I woke up from the procedure, I noticed that I didn't have any low back pain like I had from the first stent. I knew immediately that I had not had further stents placed and I became concerned. When I went to walk, it definitely did not feel like the first time and I woke up with my legs and glutes already in pain. The walking caused them more pain. Then when I talked to the surgeon, I learned what they had found during the procedure. Cleaning out and opening up the stent did however eliminate my low back pain and made my pelvic pain better.

So now we need to further figure out why I still have extreme glute and thigh pain, along with blood pooling, tachycardia, urinary problems, bowel problems, and pelvic pain. The two leading theories for this are Nutcracker Syndrome and possibly occult tethered cord.

For the Nutcracker syndrome, if it is definitively confirmed by additional diagnostic procedures, I have already made the decision that I am going to do a donor nephrectomy. That means that my kidney will be removed and transplanted in somebody else. So I will save two lives. In addition to saving lives, this has the added benefit of reducing costs as well. Occult tethered cord surgeries are notoriously expensive, and there is a lot of testing that has to be done for that as well. So there are going to be many more costs to come. I'm not going to try to estimate those at this point, because things are still up in the air. But I will update this GoFundMe as they become available.

Current Bills

Between the hotel stays, the transportation, the medical bills, etc., it is all adding up. We're talking tens of thousands of dollars when this is all said and done. And this is *with* health insurance (which carries an outrageous deductible).

Medical Bills

(2-22-24) US in preparation for second venogram + IVUS: $741.35

(4-17-24) ER radiologist services: $68.14

(4-17-24) ER US pelvis: $31.28

(4-17-24) ER Visit: $855.66

(5-2-24) Second venogram + IVUS: $6667.44

I've also got about $3,500 that I still need to fight for, for the first stent. If you follow me on Twitter or TikTok, you know the backstory on that. I'm going to keep pursuing insurance via internal and external appeals for that. So let's ignore that for now.

I also just had my second venogram + IVUS procedure, which will cost a few thousand.

Travel Costs

(5-1-24) Hotel: $865.44

(5-1-24) Airfare: $507.18

Why the GoFundMe

As you all know, healthcare in the United States is extremely expensive and ultimately results in financial ruin if you get one non-mainstream health problem. I was lucky enough to get several rare diseases all at once. After paying extremely high medical bills for the past few years trying to track this down, in addition to high health insurance premiums (I am confined to the NYS marketplace insurance, because I am disabled and out of work), I do not have tens of thousands of dollars laying around to pay for my life-saving surgeries. With only 4 insurances to choose from in the Marketplace in my county, none of which have out-of-network benefits, I am not able to choose a different plan to better suit my healthcare needs. If I lived anywhere else in the world, I would not be going through this health insurance nonsense.

However, without the surgeries, I obviously won’t make it as the conditions are progressive. I will either take my own life due to the pain or die from complete venous collapse.

If you can’t donate, please share my fundraiser by retweeting and/or sharing it on other social media platforms. I really appreciate it! I also greatly appreciate words of encouragement, and any advice if you have dealt with these conditions as well.

I will keep the costs updated here, as they become available.

If money is donated in excess of my costs, then that money will get donated back into the disability community.

Thank you for helping me save my life <3.

-Ashley