A new piece of the puzzle revealed: the Venous System

I'm not a medical professional- this blog is intended to provide experience and information in hopes of helping others. It is not medical advice.

Expect a Zebra, not a Horse: A Cautionary Tale

When diagnoses and treatments are difficult to obtain, whether from rarity or lack of medical training and progressing knowledge, navigating the healthcare system to find a more accurate and complete picture of your physical state can be difficult and debilitating. Most of my adult life has been medically challenging, to say the least. I've had many ups and downs and often feel lucky to be alive and functioning as well as I am. If you've seen my list of diagnoses, you'll know that it's long and challenging. You might even wonder how all of those things can occur together in one body- I know I do. Unfortunately, I have a condition that effects every system in the body due to the underlying lack of and defective collagen. I'm messed up from the DNA up, and so I continue the search for better quality of life.

I've contemplated, at times, that if we'd caught this particular piece of my connective tissue issues earlier, perhaps I'd currently have a more normal and able body. Though it may seem a dismal outlook, there can be a good purpose for such thinking. It can be a catalyst for further research in order to not become overwhlemed and give up and allow the medical issues to wreak their havoc without further interference. These mindful decision-making theories can also be directly effected by the medical community itself. For instance, I've had many different doctors over a few different states who have many differing views, ideals, and ways of treating patients with EDS. One of these doctors who is very well-versed in EDS confided to me that patients with EDS should be treated in separate hospital wards due to the vastly differing complications and treatment options that should be considered for these bodies. She believes the standard of care should be vastly different from the norm, which was encouraging to hear. This viewpoint makes me feel seen and heard, as well as very well cared for. More often, and especially in the area of the country in which I live, our medical differences are so novel that it can be worrisome to be treated in medical facilities that don't realize just how damaging their lack of knowledge can be for EDS patients. However, finding a medical professional who is at least willing to learn and listen to the concerns and experiences that we have from living with these conditions is priceless and can bring hope and healing in ways that might otherwise be ignored and invalidated.

Along my own journey, this past year has brought some very appreciated equilibrium. Though it began with a lot more questions than answers, it ended with discoveries and treatments that I'm very hopeful will bring some much needed healing and comfort. 2022 brought my search for physical therapy and movement that would be conducive to my special needs much needed breaks. This work has produced some good results that utilize my body in much more manageable ways. 2023 was dedicated to learning about and implementing lymphatic system treatments, which has been profoundly helpful. 2024 was all about the lymphatic system's next door neighbor, the venous system, specifically May-Thurner Syndrome and Chronic Venous Insufficiency. It's also been immensly satisfying to learn how all of these protocols work together for a greater level of benefit.

Though the effort in searching for answers lead to discovering a lot of tangled vasculature for one body, when connective tissue is a problem, I also found it is very common to have all of these issues, and more. I became a good candidate for stent placement in the Left Common Iliac vein since a venogram determined it was 86.6% blocked. The venogram procedure was pretty simple and straightforward for me and the overall recovery was pretty quick. They use a twilight-like anesthesia that allows you to breathe on your own but you won't remember any of it. They'll send you home with prescriptions for pain meds and blood thinners, but I only took pain meds that same day and tylenol was enough for the next four or five days after. The month of blood thinners afterwards were not fun to deal with. They made me depressed, massively brain foggy and moody, and gave me night sweats. I was so glad to stop taking them after the doctors' suggested length of time, though it was preferable to having a blood clot form. Every procedure in which your body is entered comes with a measure of risk, but oftentimes the risks are actually greater if you don't follow through with it, as was this case.

I was also a good candidate for radiofrequency ablation of my Greater Saphenuos veins bilaterally, as well as the Lesser Saphenous vein in the right. I have good, strong veins that run deeper through my legs that will be able to take on the extra flow once the diseased veins heal and reroute completely. These procedures were slightly more painful than the stent placement, but not so much that I needed pain medication. They prepare the skin along your inseam, poke a hole where a tiny catheter will go as an insertion point for the leadwire, and run lidocaine all the way up the vein, stopping to poke a couple more holes as they go for leadwire insertion. Then, they run the radiofrequency wire all the way up the vein, watching it along the way with an ultrasound wand, and stopping at various places to allow it to heat the vein so it will seal itself shut. It was tingly for me, sometimes tickly, and only two small places near the knees did I feel a some stinging heat. It wasn't until a few days later that my inseams felt a bit sore as if it were healing from a burn, though not as bad as some sunburns I've had. I only have to keep taking my 81 mg aspirin for two weeks after this procedure, but it's already in my daily protocol, so I'll keep taking it indefinitely. Another important protocol post procedure is to be sure to move your legs to keep clots from forming. They recommend walking at least 30 minutes per day which can be broken up throughout. Also, don't sit or stand still for long- keep moving those legs whenever they aren't in a supine position. Keep in mind, when EDS is a factor, it is also important not to overdo movement in the areas that scar tissue is forming. EDS can weaken the connective tissue leading to microtears over and over, which can keep scar tissue from forming properly, leading to problems and new pain pathways down the road. Balance and mindfulness of the effects EDS can have is very important for the best possible outcomes for these procedures.

I've been recovering well, with a few ups and downs, and I was glad to have all of this taken care of in November and December. I will also have ongoing followups and the doctors in each office have assured me that I'm a patient for life. If I happen to have any questions or concerns, all I need to do is call them. That is very reassuring! Since the nervous system relies heavily on proper bloodflow within the body and I have lots of nerve, neuromuscular, and strength issues, I'm eager to see what will grow and develop in the next year or so of healing. Having their expertise so readily available puts my mind at ease and makes me feel much more confident that I'll be able to navigate any and all changes that occur. Needless to say, the holidays had to wait until I was up and running again, but I'm ever so grateful to be on a seemingly better path to whole health. Merry Christmas to me!

As I ponder these new procedures and reflect on my journey, I'm glad to see that EDS is finally becoming more familiar around the globe. It is now being studied often enough that venous compression syndromes commonly occurring with it all over the body are finally being recognized, though not as widely known or accepted by the medical community, as of yet. They include Median Arcuate Ligament Syndrome (MALS), Nutcracker Syndrome (NCS), Superior Mesenteric Artery Syndrome (SMAS), May-Thurner Syndrome (MTS), and Pelvic Congestion Syndrome (PCS). It is also important to note that May Thurner Syndrome anatomy can be pretty common in the general population. In fact, the first MTS findings were discovered when cadavers on autopsy were assessed- thereby noting that the anomaly existed outside of the need for correction. As a result of not finding the condition to cause adverse effects to living humans, when it is seen on CT or MRI, it is ignored as a typical anatomical finding. It occurs when the left common iliac vein, which carries blood from the left leg back to the heart, is crossed over or becomes compressed by the overlying right common iliac artery against the spine. When connective tissue disturbances are added into the equation, the crossed artery cannot withhold the pressure of being compressed by the spine. It can also create scar tissue inside the vein from being continually rubbed with movement, almost closing it off. The body then creates collateral veins that try to carry blood to the parts of the body that it needs to go, but they aren't capable of doing a better job than the vein itself. Blood will pool into the abdomen and legs causing problems with nerve function, pain, swelling, varicose veins, skin problems, and even deep vein thrombosis (blood clots). As you can imagine, left untreated, this can cause quite a disturbance in an EDS body. Current research suggests that some atypical findings, such as sleep disturbance, brain fog, neuropathy, neuromuscular damage, and dysautonomia may be related to Venous Compression Syndromes, especially when EDS is involved, but it is not widely known at this time. There are probably many other concurrent issues that are being studied right now. It may explain a lot of my own lower body issues, such as bilateral loss of motor control in the hips, bilateral drop foot, phlebolymphedema, chronic leg pain and muscle contracture, urologic and gynecologic issues, GI issues, and of course, other venous issues. This is not an exhaustive list of symptoms for MTS, though. Also of note, nerves need blood and the GI system needs blood, and plenty of it, to function properly. If you find that you have a lot of medical issues that seem to have no treatment or cure, blood supply complications may be worth looking into. Just keep in mind that doctors who are capable of reading the Ultrasound, CT, or MRI imaging and take note of all the things that point to digging further can be difficult to find. Don't give up right away if your questions are dismissed.

May-Thurner Syndrome anatomy, before and after stent placement

I'm excited to experience the outcome of healing from these procedures, but I also keep in mind that when I had my previous tethered cord surgery, the doctors advised that nerves can take a long time to heal, but are also capable of never being able to fully heal once they have sustained too much damage for such a long time. I also know that because of EDS, many symptom causes can cross over many different diagnoses, so just because one cause may now be fixed, other causes may not be. It's a bit of a tangled web, but I believe it to be worth the effort and guesswork to find any measure of relief. I currently have lower blood pressure than I've ever had before (dare I say, normal? gasp!). While some of my pelvic pain and dysfunction is changing, my GI and urinary systems have yet to catch up with my hopes for further improvement. I will keep an open mind about more findings, such as possible pelvic collateral veins and varicose veins on the bladder. So far, the best outcomes have been seemingly better bloodflow to the brain resulting in less brain fog more motivation, and the dexterity and hand-eye coordination in my hands seems to have improved. I'm an artist and have been very worried about my abilities slipping away from me for a long time, so I've definitely noticed every slight change where that is concerned. While there are varied aches and pains as everything shifts to a different norm, and energy levels and muscle use are still persistently ebbing and flowing, I am still hopeful for improved outcomes. The body does try so hard to work in the best ways that it can, but finding and correcting evey such anomaly can be time consuming. If only we had a medical printout feature to tell us all that is going on inside. In the meantime, I may spend the rest of my life looking for answers and may never find all of them. The search has lead me to many other chronic illness warriors who are in the same boat as I am, and luckily we share information and shine light for each other to help point the way. I would truly be lost without them.

As with so many incidents along this medical journey, in order to keep moving forward I draw on strength from those who have gone before me- those who have diligently researched and found these options and treatments and have broken barriers by trying something new and then, provide the medical community with the data it needs to continue searching for better answers. In the same way, I hope that my choices and outcomes will be a part of those answers- not only for medicine, but for anyone else out there searching for diagnoses and treatments that they cannot find within the normal means of obtaining them. To not only have the strength and tenacity to try new things and feel a bit like a guinea pig in doing so, but to then share those experiences in hope of helping others is like passing a torch within our chronic illness communities. Keeping the fire lit is a responsibility that can create more strength and resilience not only for one's self, but also for others who are fighting the same battles and may be growing weary. Though our adventures may be tumultuous at times and probably not a path we would choose to walk, it's been best to learn to navigate what we've been given and place signs and helpful tips for others along the way. This can give us a sense of purpose that may otherwise elude us altogether. There is strength in numbers, and in our case, a great big beautiful dazzle.

A dazzling dazzle!