Miss V’s Fight with Venous TOS

Hi ‍‍♀️ my name is Miss V Van-Cartier and this is the story about my fight with Venous Thoracic Outlet Syndrome and how to help. ❤️‍

At the beginning of August, I woke up one day with swollen hands. My right hand, however, never went down. Instead, slowly but surely, my entire right arm became swollen. It almost felt like it was asleep and after a while, was starting to ache (I thought maybe I slept on it wrong). After roughly 48 hours and worsening symptoms (swelling, discoloration, numbness, pain), I contacted my PCP (Allies for Health & Wellbeing) and scheduled to be seen. On day 5 (I believe) I went in to the Dr. for my appointment and was referred to schedule an appointment for an ultrasound at the hospital’s (UPMC Shadyside) radiology department. After another few days and continued worsening symptoms, I was finally able to get in for the ultrasound.

By this point, my arm was twice the size of my other, completely reddish purple, I was in quite a bit of pain/ ache/ discomfort, and my arm was cold and numb. They discovered a pretty gnarly DVT (blood clot) in my vein/ artery in my shoulder during the scan. I was immediately checked in to the Emergency Department where I remained for 2 days while they put me on pain meds, various blood thinners, and ran all kinds of tests and scans. It was during a CT scan on my chest that they discovered the clot had traveled to my lungs and created A LOT of small clots all over both lungs (Pulmonary Emboli). And around that same time my chest had begun getting tight and aches all throughout.

As a result of everything, I had to be taken off of my HRT meds (Hormone Replacement). This not only put my transition to a halt but causes loss in weight, muscle mass, and strength all in addition to other mental, emotional, and physical effects. The hormones did NOT cause the clot. However, I had to get off the medications because they can cause your blood to be thicker, thus not helping my situation. I will be meeting with a Hematologist to come up with a safe way to get back on my HRT regimen.

I was kept stable on the blood thinners and after repetitive scans and blood work, the clots weren’t getting worse or traveling so I was released from the hospital with strict instruction and prescription thinners to continue until we have a solution. I had to call to schedule appointments with hematology, check ups at the PCP, and an appointment with vascular surgery to discuss options.

After about a week, I was finally scheduled for everything but my chest tightness and pain were worsening and I was developing a pressure migraine that I still can’t seem to fully get rid of. At the second check up appointment with my PCP, I was sent back to the Emergency Department to be scanned this time including my brain (the migraine symptoms lined up for the clot to have potentially traveled and caused clotting in my brain) and my heart (the chest pain I had developed). All scans came back clear and I was still stable (thank god). I went back home after staying another night and just had to get by with symptoms until my appointment with Vascular Surgery.

I went in Monday August 15th (a little over 3 weeks from the day I woke up with swelling) and met with Dr. Singh (an amazing vascular surgeon who specializes in what I would be told is Venous TOS). We meet and he runs over the diagnosis, making sure to even show me what is going on inside my body. He then discussed the 2 surgical procedures I’ll be getting to treat this Syndrome that I developed which caused the clot in my shoulder.

1.) First procedure, they will go into my arm with a small noodle looking device, all the way up into my clot in the vein and release treatment that dissolves it. When they pull it out, it’ll Crete some suction and pull out loose pieces that have not dissolved. I’ll be in the hospital for 3 days for this procedure and am scheduled for it on august 30th.

2.) Second procedure will take place some weeks after the first (Dr. Singh says roughly 4 weeks). This procedure will be to make an incision beneath my collarbone and go in and cut out the first rib. Doing this prevents it from flexing as I move and punching those nerves and veins against my collarbone and this will reduce risk of future clotting and problems.

All the while, they’ll continue monitoring the small clots (PE’s) on my lungs and they’re hoping the extended use of blood thinners will help my body dissolve them on its own.

Here’s where the help part comes in.

I am a Showgirl/ Drag Entertainer for a living. I have been performing weekly since my start in March 2016 and have been able to make this a career since 2019/2020. As a result of all of this, I have already been out of work for now 4 weeks. And I will not be allowed to return to work in any capacity until after this first procedure (putting me at 6 weeks before I’ll even be allowed to show up). IF I am able to return for strictly hosting/ to DJ, I’ll be elated to return at all, however I won’t be performing and thus missing out on a significant part of my income. I will ALSO be back out of the game when I return to the OR for the 2nd procedure. After the second procedure I’ll be out for another 2 weeks before potentially being able to return to host/ dj again. The Surgeon & Drs have told me I’ll be out for 3 months (potentially 6 months) before being able to fully dance and do stunts again due to the blood thinners and recoup time.

The REAL KICKER to all this is that I do not qualify for Disability due to the fact that I won’t be unable to work for 12 months or more. (Another major flaw in our government system but don’t get me started lol)

I have had to pay for transportation to and from appointments and hospital visits in addition to regular monthly bills/ costs (Rent, Utilities, Phone, Food) but have already been with no income for 4 weeks.

I am beyond grateful for those who have already financially been able to help. It’s made a difference and has kept me going this far. Sadly, I have a while longer to get through.

I know times are tough, but every little bit (or lotta bit) helps/ makes a difference and is immensely appreciated

✨ Updates and things are posted and will continue to be posted on my Facebook and Instagram accounts ✨

Thank you for your time to read about my medical journey and I thank you in advance for your generosity

Miss V Van-Cartier