Guest Feature: Jim’s Story

 

Vascular Compression Syndromes:

A Likely Cause of Chronic Fatigue Syndrome

Written by: Jim, Colorado

One of the most frustrating things I have read since getting diagnosed with May-Thurner Syndrome (MTS) is that if you don’t develop Blood Clots or Deep Vein Thrombosis (DVT) with this condition, you are most likely asymptomatic. Unfortunately, very few doctors are aware of the many symptoms that MTS can cause, especially without blood clots or DVTs. Since my personal experience with May-Thurner Syndrome is vastly different than most stories I’ve read about this condition, I would like to share my story about how I finally got diagnosed with MTS and the many seemingly unknown problems it can cause.

May-Thurner syndrome is an anatomical variant that can lead to vein compression and, in a small percentage of people, blood clots and DVTs. Since I never developed blood clots with this condition, none of my doctors ever thought MTS could be the cause of so many of the problems – most of which I’ve had for the majority of my life, such as debilitating fatigue. After recently getting diagnosed and treated for this condition, here are some of the problems that MTS can cause that are not widely known. Many of my own problems started around age 13, although looking back there were definitely signs of this condition even early than that. Some symptoms that many people first experience when developing blood clots with MTS is anxiety and fatigue. I’ve had anxiety, especially social anxiety, from an early age. I was extremely shy and insecure as a kid. Then, at age 13, I started experiencing extreme fatigue and, shortly afterward, depression. This is when I probably should have begun developing blood clots as commonly associated with this condition, but I’ve learned that most people with MTS never will and many will never even know that they have this condition. From there I would go on to develop chronic fatigue, which would negatively impact my life for the next 25 years.

May-Thurner syndrome is a poorly understood and rarely diagnosed condition. It seems to me that almost everything that is known about MTS is incorrect. For instance, most websites will say that it’s a rare condition that’s commonly diagnosed in women who are between 20 and 40 years old and that it’s not a hereditary condition. However, it’s actually an anatomical variant that is estimated to be found in 20-25% of the population, possibly even much higher. About half of these people could also have at least some compression of the iliac vein and be experiencing symptoms as a result of this condition. MTS occurs when the spine begins pressing down on this very large vein, blocking normal blood flow. It can also occur at almost any age. Since women tend to have a more pronounced lordosis of the spine, they are approximately 4 times more likely than men to receive a diagnosis of MTS. It would also seem that MTS is more than likely hereditary because it can be caused, in part, by the shape of a person’s spine.

After having a stent place for May-Thurner syndrome, I can say that MTS has undoubtedly been the root cause of my anxiety and unexplained chronic fatigue or excessive daytime sleepiness (or whatever you want to call it) that I’ve had for more the past 25 years. I don’t know of many doctors that will tell you that May-Thurner syndrome can cause chronic fatigue but the doctor that diagnosed me knows it can cause this extreme fatigue. My doctor also told me that MTS is a condition that is usually diagnosed in pregnant women due to rapid weight gain that causes the compression of the iliac vein and, sometimes, DVTs. So, for a healthy male with no blood clots, this is probably the last condition most doctors would look for — and that’s the problem that I’ve discovered about this condition. From my experience, I can say that May-Thurner syndrome can absolutely cause chronic fatigue syndrome. So along with anxiety, chronic fatigue, and depression, MTS can also cause cognitive dysfunction as well. I’ve had attention deficit disorder, confusion, and memory problems since early childhood. It’s likely that I was born with, or developed, significant compression of my left iliac vein early on in my life, thus causing many of these symptoms. The problem that MTS is that it can be especially devastating for kids and teenagers who are dealing with these symptoms but are not quite able to fit in with their other “normal” friends, so an inability to excel or succeed at work or school due to poor concentration and fatigue could be an indication of MTS, much like CFS.

When my problems began getting worse last year at the age of 38, I was determined to figure out what was causing the unexplained, extreme fatigue that I’ve had for so long.  My symptoms up until this point could only be described as mild narcolepsy due to the excessive daytime sleepiness and hypnagogic hallucinations with sleep paralysis that I would occasionally experience. As someone with narcolepsy once said, “one of the first places I go to when I get in a car is to sleep” and I could sleep for days when riding in a car! (Incidentally, 13 and 38 are the exact ages people are usually diagnosed with narcolepsy – a diagnosis I was trying to get a year earlier than my MTS diagnosis). I had every sign and symptom of narcolepsy except for cataplexy, although MTS could very well cause this too since it causes weakness in the legs as well. I believe that May-Thurner syndrome could very likely cause sleep associated disorders, including narcolepsy.

After a long and stressful period in my life, my anxiety began to get much worse and I started experiencing brain fog and memory loss. I also began having dizzy spells, sort of like the entire room was spinning, and I was having balance issues as well. For instance, I would be walking along and then suddenly just start leaning to my left side. One day, when I was out walking with my daughter, I ran right into the door of a store we were entering. At the time, it was actually pretty funny – we both had a good laugh about that one. After going to see over a dozen different doctors during the following 6 months, I was not any closer to finding the cause of my fatigue. I had all kinds of tests, include abdominal ultrasounds and magnetic resonance imaging (MRI) of the brain, but the only thing doctors found was that I had left-sided varicocele veins. Apparently, a doctor had mentioned that I had these to my parents around the age of 13. I was having a dull/ache and pain on the left side of my groin at the time, so that made more sense. Still, even after all of this, doctors kept telling me that I was a healthy male and that I had nothing to worry about, even though I felt like I was dying all the time. After a couple of months of feeling miserable, I decided to have a varicocele embolization to see if this would help any of my problems since I read that they could also cause fatigue and low testosterone.

When the interventional radiologist performed the embolization, it turned out to be one of the best/worst decisions I’ve ever made. What I didn’t know at the time, however, was that this procedure redirects blood flow out through the left internal and external iliac veins, causing an increase in blood flow through these veins. My varicocele veins actually started getting worse after this and the brain fog, which was starting to slowly get better, began getting much worse. Breathing also became very difficult and I developed worsening anxiety, including an impending sense of doom for some reason. My hips and legs would hurt when either sitting or standing for any length of time. Both legs felt like they weighed 300lbs each and were very weak. I would just sit around and wonder about how I could keep going, especially with the way things had been going for such a long time. It took me awhile but I finally went back to the doctor that performed my embolization and told him about all the problems I’d been having since then. That’s when he told me that I probably have a condition called May-Thurner Syndrome. After searching MTS and fatigue online, I found a website from a vein clinic that talked about how MTS can cause symptoms like anxiety, fatigue, depression, and exercise intolerance. The website also stated that those with a 70% or more compression of the left iliac vein can cause leg pain and/or swelling, pelvic pain, pain during intercourse (dyspareunia), pelvic pain after intercourse (post-coital pain), lower back pain, and urinary bladder discomfort. This description almost describes nearly all of the symptoms I had been having exactly – I couldn’t believe it! At this point, I knew that I had finally discovered the cause of all the problems that I had been having for all these years.

After a pelvic venogram confirmed that I actually had MTS, with about 70% compression of the left iliac vein, he chose to place a stent in the vein to allow for proper blood to flow through. I wasn’t sure what to expect next, so I left the hospital and went home to relax. That night, I started getting the worst lower back pain and I felt like I was half-paralyzed. I remember thinking to myself that it was just my luck and I had somehow managed to make my problems even worse than they were before the stent placement. During the middle of the night, however, the pain slowly began to disappear and I felt a little more relieved. The only way I can describe how I felt when I woke up the next day is that it felt as if I had been placed in a completely different body – I felt 20-years younger overnight; I was breathing so much better and could finally take a deep breath; the terrible anxiety and brain fog were gone; my legs felt so much lighter that I felt like I was a balloon and I could almost fly away at any time, and the extreme fatigue was also starting to fade as well. Additionally, I had the strangest sensations all over my body as blood was probably flowing normally (through my whole body) for the first time in my life. Every ache and pain in my body were now gone, although it took about 2 months for my sleep patterns to return to normal again. I finally started feeling like my old self – only a lot less fatigued.

It was around this time that I met Nikki (the Undiagnosed Warrior), who had also been diagnosed with May-Thurner syndrome and pelvic congestion syndrome, as well as two other vascular compress syndromes: Nutcracker syndrome (NCS) and superior mesenteric artery syndrome (SMAS). It is also when I first learned about NCS, although I shortly discovered that it was also a known cause of CFS and a very similar condition to MTS. Nikki was the first person I’ve ever been able to talk to that knows about the many problems that MTS can cause for those affected by it. In fact, our running joke with one another is “You know what causes that right?” – “May-Thurner Syndrome!!!” LOL.

My hope in sharing my story is that maybe someday it will help someone else receive a diagnosis, instead of suffering unknowingly with this miserable condition. It’s amazing that it has taken over 25 years for someone to figure out that I most likely had MTS all my life and it shouldn’t be that difficult. I wish one of the many doctors I saw along the way would have known about the many problems and symptoms that May-Thurner Syndrome can cause, especially in those who haven’t develop blood clots as expected. The good news is that doctors have been stenting for MTS for the past 20 years and if you do have this condition, a simple stenting procedure could give you great relief from your symptoms – I know it did for me. [Note: It is imperative that your doctor or surgeon check for other vascular compressions syndromes prior to agreeing to stent placement or pelvic embolization as a treatment because it can have the potential to increase pain and symptoms, rather than relieve them, especially when other vascular compression syndromes are present. Please consult your physician to find out more information]. Thank you for reading my story!


Jim Johns Photo for Article Submission

Contributor Information: Jim is an active member of the Undiagnosed Warrior Team and a moderator of the Undiagnosed Warrior Support Group. He advocates for the Undiagnosed by educating both patients and professionals about vascular compression syndromes, particularly on May-Thurner Syndrome and the random symptoms that the condition can cause.

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5 thoughts on “ Guest Feature: Jim’s Story

  1. drkarindrummond says:

    Thank you for sharing!!! If I have patients with low back pain that does not respond as expected, vascular compression syndromes are on my radar. I will be talking about pelvic congestion syndrome in my “Combat Low Back Pain” as a possible cause of chronic low back pain. I will also mention the other compression syndromes, to help bring awareness. I feel compression syndromes are on the rise because we all sit too much. Our bodies need to move to aid the drainage of our blood and lymphatic vessels. Thanks again for sharing! – Karin, D.C.

    Liked by 1 person

    • The Undiagnosed Warrior says:

      I’ll keep an eye out for your article. There’s definitely not enough awareness on vascular compression syndromes and all the random symptoms and comorbidities commonly associated with these conditions. There’s also not much research, which is part of the bigger problem.

      Liked by 1 person

      • drkarindrummond says:

        The good news is with electronic records, there is a researchable data that is helping doctors better understand conditions, morbidity rates, etc. If you want, I am happy to send you a copy of my “Combat Low Back Pain” book. I would love to hear what you think about it. It is aimed arm the patient with knowledge, so they better understand their bodies, what to do if they have low back pain, and what to ask their doctors. If you are interested, you can contact me through http://www.drkarindc.com

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