Help Me Get Surgeries For Rare Conditions
My name is Michelle and those who know me would describe me as always on the go, highly energetic, empathetic and always cracking a joke. Working behind a bar at lightning speed or spending time riding horses, swimming or enjoying the outdoors are things I used to enjoy very much.
I had to stop riding and training horses completely. Bartending became harder and harder and I kept pushing through it. My heart rate and body couldn't handle the excersise and especially the heat. My doctors diagnosed me with POTS which is a form of Dysautonomia. It includes heat intolerance and severe heart palpitations. 
Determined to keep going, I went to work only as a bartender and only at night and indoors to avoid the heat. I was doing okay for a while!
April 2021, right around my 37th birthday, I began losing weight and having severe pain attacks in my shoulders at random. I thought I was pushing myself too far and lifting too much. I began taking it easier even though that isn't in my nature at all.
By June, my weightloss was enough. I started realizing something is wrong. I was always feeling poorly and my heart rate began going crazier than normal. The pain in my shoulders came every other week. I sought out a genetic counselor and was diagnosed with hypermobile Ehlers Danlos Syndrome. It means my connective tissue and ligaments are very weak, stretchy and have no collagen. My doctor and I chalked the pain up to the Ehlers Danlos and I began realizing life won't be the same anymore.
I kept pushing myself and ignoring it until I no longer could. left bartending very suddenly and with huge sadness and decided on a career doing something I can do sitting down in the AC and at a much slower pace. I was devastated but happy to have chosen microblading and already had a spot lined up at a local and very popular salon! I felt so excited to work around a group of women I knew I could look up to! I began to practice and signed up for a $4000 microblading class. Afterall, I had to have the very best training of course! I prepared by taking the health dept courses required and even had this ridiculously funny logo made.
Four days before my class I had just recovered from another severe episode of the shoulder pain. It returned suddenly but this time with severe burning and pain in my kidneys and abdomen. My husband and I were shocked and trying to figure out what triggered it.
I spent the next three days running to a new doctor every day. Nothing was found. No infection, nothing was dislocated (happens often with Ehlers Danlos), my bloodwork showed malnutrition but that didn't explain the pain. My organs looked okay too they said.
By Saturday, July 6, 2021, the day of my microblading class begin, the pain was so debilitating that I had to miss it and go to the ER locally. They gave me morphine which made me sleepy but barely touched the pain and burning in my kidneys. They found something called Renal Nutcracker Syndrome in my scans and told me to see a vascular surgeon in the next two days. I was sure my appendix had burst and this diagnosis was something I've never heard of. I thought it was a joke.
I got in to see a vascular surgeon three days later. Now I was unable to walk and my legs felt like heavy Jell-O. My eyes were sunken in and I had now lost 30 pounds in less than two months. The surgeon dismissed me without further testing due to me having severe pain on both sides and not just the left side where Renal Nutcracker is found in textbooks. He said due to weightloss the fat pad protecting the renal vein was gone and if I gained weight it would be ok again. He said "Nutcracker is too rare and nobody ever actually has it". We were floored. He sent me to a gastroenterologist the following day who rolled his eyes at me when I mentioned my symptoms and tried to make me say I had bulimia. I begged him to look further.He didn't. Both of these doctors had no idea what Ehlers Danlos is or didn't know enough about it. Or didn't want to.
I then saw my primary and she immediately began talking about and looking for cancer. She diagnosed Pelvic Congestion Syndrome which is extremely uncomfortable and explained some symptoms I had for months. My head was spinning. Nutcracker made sense, cancer did not. I was terrified!
Back at home with symptoms so severe I was afraid I was dying some days we decided to take action and get a second opinion at Mayo Vascular surgeon. I called and described my symptoms and they got me in immediately saying weightloss is a symptom and not a cause and that the previous surgeon should be ashamed of himself. Oh wow, ok.
We arrived at Mayo the end of July 2021 after seeing tons of doctors locally and getting no help. Now 37 pounds lost and barely able to walk or stand. There the vascular surgeon also sort of dismissed me having Nutcracker due to my symptoms being bilateral and not only on the left. She could see my left renal vein smashed but the symptoms didn't match the textbook. Sent me for tons of testing and more specialists.
Little did I know Mayo and their textbook nutcracker symptoms list was completely wrong. Mayo was not helpful whatsoever. They are not knowledgeable in what I have at all. After 33 tests and appts and specialists there they told me it is not NCS.
In November 2021, I left and went to Baltimore to a compression specialist for my venogram and he scheduled surgery for December.. I had SEVERE Renal Nutcracker Syndrome with 91.3% renal stenosis. My left kidney is almost completely blocked and my body is rerouting blood through a now grossly enlarged ovarian vein. That is what is causing the pressure and pain in BOTH kidneys. I also have May Thurner Syndrome which is a compression of the iliac and affects my leg. 
He also suspects Median Arcuate Ligament Syndrome (MALS) is a condition in which the median arcuate ligament presses too tightly on the celiac artery (a major branch of the aorta that delivers blood to the stomach, liver, and other organs) and the nerves in the area (celiac plexus).
Had my local docs or Mayo done a venogram they would have easily seen the problem but they all refused. Nutcracker is "too rare and nobody ever actually has it". But I did.
I was born with pectus excavatum. A sunken in sternum I am sure a lot of you have seen. My entire life I was told it was just cosmetic. It isn't. It is smashing my heart, lungs and part of my deformed rib is stabbing my liver. There is less than one inch between my spine and sternum!!!
I now need surgery for the Nutcracker, a big surgery to repair my deformed ribcage called Nuss Procedure and possibly another for MALS. Due so so many compressions at once, Mayo didn't know where to start. Starting in the wrong spot can cause another vascular compression to become worse. I had to travel to Mayo in five trips, each 7-10 days long, to be monitored or more testing done and it was not helping.
I wasted five months in excruciating pain!
Sketch I made while waiting on surgery.
The biggest surgery I am looking at is a kidney auto transplant where they move my left kidney to a new location and reattach to relieve the compression. Not every vascular surgeon wants to do this or knows how and others who have NCS get a nephrectomy just to find relief. Then the Nuss Procedure where they will use metal bars to pop out my concave sternum and brace it in place to be normal sized. This one is normally done in teens and very risky in adults. Surgery for MALS will most likely be needed as well.
All of my potential surgeries and diagnosis are very rare. Staying in Florida to find help is not at all possible due to how rare this is. My genetics are horrible. My own body is crushing itself. I was born with all of this but it didn't show up until I aged.
I have decent insurance but with just one income now in our household and no family to lean on I am asking for your help to get me back on my feet and hopefully back to work one day!!! Or at least to get out of bed and have a more normal quality of life and have a job at all again one day.
I need help traveling to many appointments and with medical bills. My appts were in three different states but most were in Jacksonville which is 6 hours away and car rides are really hard for me. We flew to Maryland for testing and again for surgery. My pectus surgeon is also six hours away.
This will be a very long road to recovery but there is hope it can all be repaired. It is urgent I get to my appointments as quickly as possible.
The pain this causes is unreal. Like labor every day for hours and hours until it stops for a little while. Sometimes it lasts for days without giving me a break at all. Sometimes I scream and contort in my bed like a rope is cutting my insides in half and shooting the blood into my head with very painful pressure. It's hell.
This can all be corrected if I find the right surgeons willing to take on something so complex.
Update* I also have gastroparesis, fibromyalgia and May Thurner Syndrome (compression of the iliac). I have found a surgeon in Maryland who specializes in these vein compressions and is going to help me. Mayo was not at all willing to help my vascular compressions and deemed me "too complex".
Baltimore surgeon did three tests and immediately scheduled surgery.
May-Thurner syndrome, also known as iliac vein compression, affects blood vessels that go to your legs. It could make you more likely to have a DVT in the legs and causes pain and a feeling as if the leg were made of concrete when it flares.
Update**
I had a left kidney auto transplant and Median Arcuate Ligament release surgery done at the same time in a very long and open surgery in Baltimore on Dec 23, 2021. I returned to Florida six days later and had many complications and further hospitalizations. I lost 25 lbs in January and the recovery from MALS was horrendous and due to my pectus excavatum it is still not great.
Renal Nutcracker pain is completely gone!
My PCS and MTS that cause pelvic pain (and more but I'll spare you those the details ) and leg pain.
My Pelvic Congestion Syndrome and May Thurner Syndrome were not cured with my surgery. I will need stents to correct this.
Two compressions repaired and two more left to treat plus the compression of my heart due to my deformed ribcage. I have been trying to find help for these locally for months but just like with the other compressions I am completely hitting a wall. Local vasculars are NOT well-versed in compressions.
I have to travel out of state again, an 8th trip away from home.
My severe medical PTSD is preventing me from going to Mayo as of right now for pectus surgery. There aren't many surgeons who correct it in adults so I'm doing everything I can to correct my PTSD (therapy and stellate ganglion blocks).
Life seems so unreal these days but I am staying strong and am asking for your help and thank you from the bottom of my heart!
