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.

It’s Alright Not to Feel Okay…

For the most part, I try to stay positive about what I post on this blog. But, as most of you already know, life with a chronic illness is hard and it is definitely not always sunshine and rainbows as one might think – although I do believe that both would make things slightly easier to handle, don’t ya think? Nevertheless, there are just some things that come along with living “the sick life” that truly shake you to the core sometimes. For me, it’s hearing about other patients that have the same (or similar) diagnosis and have passed away as a result. I posted the following on my personal Facebook page a little while ago but felt it was important to share on this page as well. Sometimes you just have to say what’s on your mind because it’s good for the soul. In a way, venting allows me to grieve – not only on behalf of those that have passed but also for myself.


Sometimes I get so tired of hearing about my fellow warriors dying because their pain was not taken seriously or they couldn’t find the help that they needed. It’s becoming way too common lately and just thinking about how others have been treated because of their illness – hell, how I’ve been treated at times – makes me both physically and emotionally sick.

Trust me when I say that majority of people can’t even begin to comprehend the level of pain that those of us with vascular compressions live with each and every day. Or how much has been lost as a result of illness? Although I don’t necessarily agree, I can absolutely understand why many have chosen to take their own life.

Honestly, I’ve been lucky. It took a lot to just simply survive. Being misdiagnosed could have killed me. So could have all the wrong medications, treatments, and surgeries that have been offered to me along the way. I had to educate myself and challenge my care at every single step along the way. I’ve had to stand up to my doctors. I’ve had to fire some doctors. I’ve had to prove myself over and over again – prove that I was, in fact, sick; that I wasn’t imagining the pain – just so that my concerns would be heard and taken seriously. So that someone would help. Basically, I’ve had to fight with every bit of strength left inside of me just to get to where I’m at today – and no, I’m not better yet.

Obviously, this hasn’t been easy and I’m still in pain almost every day. Yet, somehow, I still hear that I’m not actually sick or that I’m not sick “enough”, even though test after test show’s that something’s seriously wrong and has been for a while. Eventually, something has got to give in the way we do medicine, especially when it comes to managing chronic or rare conditions. The gender bias in treating young women needs to stop as well.

No, it’s not anxiety! It’s not depression! And it’s definitely not in my goddamn head! These conditions are real and you would know that if you took a minute to listen.

Mostly, though, I’m angry – angry that this is somehow okay; that this is acceptable. I’m also incredibly sad as well. These tragedies could have been avoided. Most of these deaths are senseless. Something could have been done. The worst part, however, is that nobody cares. I repeat: nobody gives a damn.

Do you think the doctors cared when they heard that their patient had died? I doubt it.

Do you think the friends or family members who left when the person became ill and couldn’t get out anymore really cared? Not enough, obviously.

What about all the other people in their life who judged them, told them to try harder – to do more – to be more- to stop being lazy? Do you think they cared at all, really?

I cared, though… I still care.

Part of this is selfish, though, because I think about how easily that could have been me – and could still be me someday. I hear about the others just like me dying so frequently lately that the idea of death no longer scares me – it’s just par for the course at this point. How sad is that? I tell you, having a chronic illness makes you jaded.

I’m really trying not to be negative, but I’m so incredibly frustrated and disgusted that I just needed to vent. I just hope someone out there is listening.

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Whenever you need or want somebody to listen, I’m here. Just send me a message either here or on the Undiagnosed Warrior Facebook Page – I’d be more than happy to hear your story anytime.

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suicide

National Suicide Prevention Lifeline Magnet, SVP05-0126

National Suicide Prevention Lifeline Magnet

Please keep fighting fellow warriors!

I question who I am…

Have you ever felt lost in your illness? 

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Lately, that has been me. Lost. Both January and February beat me up pretty badly. If anything could go wrong, it did go wrong. It’s like I could not win, no matter what I did. And the more I tried, the more things went wrong. Problems with testing, issues with doctors and medical records, trying to fight 3 disability cases at once, managing to keep up in school (barely), and a myriad of symptoms coming down on me at once. Just thinking back on it makes me tired. Not to mention, it was also the 12th anniversary of my mother’s death on February 25, which also happens to be my husband’s birthday. Needless to say, I’ve been busy.

Likewise, I just surpassed the one year anniversary of when I left my job to go on medical leave, only to get fired from my job a few months later because I wasn’t able to tell them when I’d get better. The harsh reality was – I might not ever be better. And we still didn’t have all the answers. Even now, there are still so many things in the air.

Somewhere, between all the frustration I’ve felt over the last few months, I suddenly found myself feeling really sad and hopeless about my illness. It had officially worn me down and for the first time in over twenty years, I had to admit – I was depressed – and I hated myself for it. So here I was:

A Warrior. A Fighter. A Hypocrite?

This must be a bad joke. After years and years of trying to prove that my symptoms  were not caused by depression and I now have to eat my words. Great – What else could go wrong?Just the idea of being depressed made me sick – as if I wasn’t sick enough already. How could I let this happen?  I didn’t want to be that way, but I also couldn’t stop myself either.It made me question my sanity. What if I was actually sick from depression? Maybe it has been depression all along?

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I honestly didn’t know anymore. The sadness from somewhere out the blue and overwhelmed me so fast that it scared me. I was too tired to fight, though, I already had too much on my plate. I decided to accept the feelings and let them in. Literally speaking out loud, I just said fuck it – I’m depressed! (excuse my french) and I wallowed into the depth of self-pity for a while.

Hiding from my husband in the wee hours of the night, I’d obsessively search  Youtube for the saddest songs I could find, you know – the ones with the saddest lyrics and heart-wrenching video to go with it. I’d hurl myself in the bathtub and simply cry. And not just cry, I would sob – snot and everything.

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It was on one of these nights, not long after I wiped my tears away for the night, that it happened – I finally broke.

 Honestly, it’s hard to remember the explicit details of that night, but they really don’t matter much anyway.  I do recall, though, that the salt on my skin was still fresh enough I could taste my sadness with every breath and exhale. It made me feel nausea. Who knew that only moments later, I would be drowning in my tears.

Still, the fact of the matter is that someone very close to me said some of the harshest words I had ever heard about both me and my illness to date. And these words cut me much deeper than anything ever had before. Which, I have to tell you, is not an easy task considering what I’ve gone through trying to get a diagnosis for all these years.

I just simply shattered.

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A lot of things were said that night, but one thing, in particular, stood out to me. I couldn’t get it out of my head, either. Those words became an obsession and I have no idea why. Worse things were said throughout the course of that evening, things that should have hurt me much worse. But yet, these words were like a broken record to me, playing the same terrible song over and over.

“You aren’t the hero that everyone thinks you are…”

Ouch. 

I know this probably sound silly to anyone reading this, but it wasn’t to me. To this day, I still don’t  understand why this hurt me as bad as it did. I can laugh off being called crazy. I can ignore being told that I am either this or that. I don’t care who does or does not like me. Trust me,  I have way more than enough to worry about. Perhaps it was because this person questioned my self-worth or purpose, the reasons I continue to fight and on why I keep searching for answers. It made me not only question myself and my sanity but everything I have worked so hard for up to this point – including this blog.

Who am I to share my story? 

I’m just a fool. A hypocrite. A fake.  A phony.

Does anyone have a rock I can hide under?

It took more than a few weeks for the replay of that night to finally stop playing altogether – that person and I made up long before I  recovered from this event. Like I said, I just couldn’t let it go.  I needed a revelation.

It was after another night of crying on the bathroom floor, wallowing in self-pity as usual. You know that moment when you think of something super funny or smart to say, but it’s already after the fact? And you become mad at yourself because you didn’t think of it at the time? And now you wish you had something instead of standing, looking stupid? This is exactly how I felt.

Wait a minute – I never called myself a hero… ever

I call myself a warrior – The Undiagnosed Warrior – to be exact.

There’s a difference… 


Simple Definition of hero

(From the Merrium-Webster Dictionary Online)

  • : a person who is admired for great or brave acts or fine qualities

  • : a person who is greatly admired

  • : the chief male character in a story, play, movie, etc.

Simple Definition of warrior

(From the Merrium-Webster Dictionary Online)

  • : a person who fights in battles and is known for having courage and skill


That’s it – that’s exactly it.  How did I not see this before? 

Think about it for a moment…

In modern culture, most people hear the word hero and picture a big strong fireman that rescues an entire family from burning house. He even saves the family’s dog. He’s a hero… What about all the other people we look up to as heroes?

  • The people who do extraordinary things while battling cancer? Lance Amstrong, for instance. He accomplished so much while battling cancer. He’s a hero…
  • What about Spiderman or Batman? They’re called super heroes.
  • U.S. soldiers and veteran?  obviously heroes – they have fought/are fighting many battles for our nation. Many sacrificed with their lives.

There are so many examples and they have all done amazingly brave things in their lifetime. They are heroes in the true tdefinition of the word.

Admired. Brave. Great Acts. Chief Male Character.

 Of note: not every example is meant to exaggerate the gender bias (insert he or she in all the examples above). That’s not the point I’m trying to make, although men generally do come to mind first when thinking of the word hero. Hell, it’s even in the definition… but I digress. Not that there is something wrong with being called a hero, but heroes generally look for personal victories and  fight to win – and that’s just not me at all.

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 So, what about warriors?

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The title of a warrior is much more appropriate, don’t ya think?

For example, a warrior…

  1. Fights in battles…
    • against their own body – every single day.
    • just trying to live  a normal life – as much as physically possible, anyway.
    • to simply keep employment.
    • with/against doctors and other healthcare professionals – it can go either way.
    • with insurance companies – just to receive lifesaving treatments or medically necessary tests.
    • against disability.
    • against disability insurance companies or social security.
    • to spread awareness through advocacy.
    • to develop a treatment plan.
    • to hopefully one day find a cure.
    • sometimes just to get a diagnosis.
    • to keep relationships with both friends and family.
  2. Has Skills…
    • such as getting a full workout just in standing up.
    • such as being proficient in first aid
    • to predict the weather based on how we feel.
    • of adapting to various situations, no matter how awkward.
    • consisting of medical knowledge in almost every field of medicine available.
    • of balancing too many things at once.
    • in knowing where every bathroom for the next 20 miles is (and how clean they are).
    • like being able to sleep anytime and anywhere.
  3. Has Courage…
    • to live with the unknown.
    • to have test after test, even if they’re painful.
    • to get out of bed, even when not feeling good.
    • to face the things that scare them.
    • to keep searching for answers and uncover mysteries
    • to go to doctors appointments, even when they’re told their symptoms are in their head.
    • by keeping the faith.
    • in knowing there is a larger purpose for being sick, even if they don’t understand why yet.

Again, I could list thousands of examples for each, but you get the point.

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Who cares if I’m not the hero that everyone thinks I am? 

The world needs more warriors anyway…

Needless to say, I didn’t feel so sad anymore. In fact, I actually felt pretty strong – and maybe even a little proud of myself. The depression had lifted and I was me again.

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On this very Christmas night…

Dear Santa,

I know it’s late and  that you’ve already had a really long night, but I was hoping that maybe you had time for just one more Christmas wish this year. I know that I had originally asked to have surgery for Christmas this year, but I think I’ve changed my mind… at least until I don’t have any doubts, anyway.

I do hope that it’s not too late to change my wish for this year.

As much as I would love a cure for my illness or even a little less pain in the upcoming year, as any patient with a chronic illness would, that’s not my Christmas wish either. Instead, I wish for something else entirely. Something I have never wished for before.

As I stare out the window tonight and gaze to the glowing full moon above that has blessed the world this Christmas, all I can think about is finding peace and happiness in my life once again.

You see, Santa, the last few months have been really hard and I’ve been in a constant state of pain, feeling both tired and sick, but mostly worried and fearful about what the future has in store for me – and it’s really begun to change me. I can’t laugh anymore, I don’t remember the last I smiled and actually meant it. I forget what it’s like to have fun.

My husband thinks I have lost my humor and my friends think I need even more of a break than what I’ve already done.

It’s been THAT kind of year.

And with the holidays approaching fast this year, I didn’t feel any magic in the coming holidays. Yet again, all I’ve felt is stress and fear.

Somewhere in the chaos of 2015,

I lost my ability to have faith and to believe.

So please, Santa, if you bring me anything  at all for Christmas this year – please bring me the HOPE and STRENGTH to make it through another year and the BELIEF that everything will be okay someday. Help me to find JOY in this life again because I am tired of being miserable all the time (and so is everyone else that is around me). I know this is asking for a lot, but I need a miracle at this point. Perhaps if  I felt like there was something good to live for again then I wouldn’t be so angry with myself for not being more or doing more. I that I can accept a life with chronic illness and everything that comes with it, but I don’t know how to do that without having some peace of mind.

I need to believe again.

As always, thank you for listening and I hope you have a very

Merry Christmas.

Love,

Nikki (The Undiagnosed Warrior)

“This night, we pray
Our lives, will show
This dream, he had
Each child, still knows”

Read more: Trans Siberian Orchestra – Christmas Canon Lyrics | MetroLyrics

Catheter Venography (Venogram)

Well, I finally went for my venogram yesterday after waiting since September and being told by the GI surgeon to keep searching for answers to my symptoms. The vascular surgeon agreed to evaluate the compressions again  and determine whether or not surgery is needed at this point to fix the identified  vascular compressions.

According to the test results…. the answer is a clear and definitive yes.


(The following information was retrieved from radiology info.org.)

What is a venogram?

A venogram is an x-ray test that involves injecting x-ray contrast material (dye) into a vein to shows how blood flows through your veins. This allows a physician to determine the condition of your veins.

An x-ray (radiograph) is a noninvasive medical test that helps physicians diagnose and treat medical conditions. Imaging with x-rays involves exposing a part of the body to a small dose of ionizing radiation to produce pictures of the inside of the body. X-rays are the oldest and most frequently used form of medical imaging.

A venogram is commonly used to:
  • assess the status of a vein or system of veins
  • find blood clots within the veins
  • assess varicose veins before surgery
  • find a vein in good condition to use for a bypass procedure or dialysis access
  • help a physician place an IV or a medical device, such as a stent, in a vein
  • guide treatment of diseased veins.

How should I prepare?

Other than medications, you may be instructed to not eat or drink anything for several hours before your procedure. You may be allowed to drink clear liquids on the day of your procedure.

You should inform your physician of any medications being taken and if there are any allergies, especially to iodinated contrast materials. Also, inform your doctor about recent illnesses or other medical conditions.

Women should always inform their physician and x-ray technologist if there is any possibility that they are pregnant. Many imaging tests are not performed during pregnancy so as not to expose the fetus to radiation. If an x-ray is necessary, precautions will be taken to minimize radiation exposure to the baby. See the Safety page for more information about pregnancy and x-rays.

What does the equipment look like?

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The equipment typically used for this examination consists of a radiographic table, one or two x-ray tubes and a television-like monitor that is located in the examining room. Fluoroscopy, which converts x-rays into video images, is used to watch and guide the progress of the procedure. The video is produced by the x-ray machine and a detector that is suspended over a table on which the patient lies.

Other equipment that may be used during the procedure includes an intravenous line (IV), ultrasound machine and devices that monitor your heart beat and blood pressure.

How does the procedure work?

X-rays are a form of radiation like light or radio waves. X-rays pass through most objects, including the body. Once it is carefully aimed at the part of the body being examined, an x-ray machine produces a small burst of radiation that passes through the body, recording an image on photographic film or a special detector.

Different parts of the body absorb the x-rays in varying degrees. Dense bone absorbs much of the radiation while soft tissue, such as muscle, fat and organs, allow more of the x-rays to pass through them. As a result, bones appear white on the x-ray, soft tissue shows up in shades of gray and air appears black.

Veins cannot be seen on an x-ray; therefore, a special dye (called contrast material) is injected into veins to make them visible on the x-ray.

How is the procedure performed?

This examination is usually done on an outpatient basis.

A venogram is done in a hospital x-ray department.

A venogram is performed in the x-ray department or in an interventional radiology suite, sometimes called special procedures suite.

You will lie on an x-ray table. Depending on the body part being examined (e.g., the legs), the table may be situated to a standing position. If the table is repositioned during the procedure, you will be secured with safety straps.

The physician will insert a needle or catheter into a vein to inject the contrast agent. Where that needle is placed depends upon the area of your body where the veins are being evaluated. As the contrast material flows through the veins being examined, several x-rays are taken. You may be moved into different positions so that the x-rays can take pictures of your veins at different angles.

What will I experience during and after the procedure?

You may be asked to remove some or all of your clothes and to wear a gown during the exam. You may also be asked to remove jewelry, removable dental appliances, eye glasses and any metal objects or clothing that might interfere with the x-ray images.

You will feel a slight pin prick when the needle is inserted into your vein for the intravenous line (IV) and when the local anesthetic is injected. The arteries have no sensation. Most of the sensation is at the skin incision site which is numbed using local anesthetic.

As the contrast material passes through your body, you may get a warm feeling.

You may have a metallic taste in your mouth. Your arm or leg may feel like it is getting numb or “falling asleep.” After the test is complete, this feeling will go away.

You must hold very still and may be asked to keep from breathing for a few seconds while the x-ray picture is taken to reduce the possibility of a blurred image. The technologist will walk behind a wall or into the next room to activate the x-ray machine.

When the examination is complete, you may be asked to wait until the radiologist determines that all the necessary images have been obtained.

A venogram takes between 30 and 90 minutes to perform. Fluids will be run through your IV to remove the contrast material from your veins. You will also be instructed to drink a lot of fluids for the next day. After the catheter is removed, a bandage will be placed on the IV site. Then you will be observed for any signs of complications, such as bleeding from the injection site, infection or an allergic reaction.

What are some of the possible risks?

  • There is a very slight risk of an allergic reaction if contrast material is injected.
  • In rare cases, a venogram can cause a deep vein thrombosis.
  • There is a risk of injury to the kidneys with contrast injection. Patients with impaired kidney (renal) function should be given special consideration before receiving iodine-based contrast materials by vein or artery. Such patients are at risk for developing contrast-induced nephropathy, in which the pre-existing kidney damage is worsened.
  • Any procedure that involves placement of a catheter inside a blood vessel carries certain risks. These risks include damage to the blood vessel, bruising or bleeding at the puncture site, and infection.
  • There is always a slight chance of cancer from excessive exposure to radiation. However, the benefit of an accurate diagnosis far outweighs the risk.
  • The effective radiation dose for this procedure varies.
  • Because children are more sensitive to radiation exposure than adults, equipment and procedures will be monitored in order to deliver the lowest possible dose to young patients.

What are the limitations of venography?

The results of a venogram can be altered or affected if you are unable to sit still during the procedure since that will affect how the contrast material moves through your veins. Further exams may also be required if the more central veins located in the pelvis, abdomen and chest are not fully evaluated with contrast injection via an IV placed in the extremity.

In some cases, ultrasound is a preferred procedure because it has fewer risks and side effects.


My personal Experience:

 I was so nervous about having the procedure because they hadn’t given me much information about it or the plan of action for the day. I finally received a call from the hospital on Monday with a check-in time and brief instructions about prep for the procedure. I was to check into the hospital at 6:30 AM Thursday morning and no food after midnight and drinks after 4:30 A.M. Not too bad, I thought.

Tuesday I had received three more phone calls from the hospital staff about doing pre-med prior to the procedure since the last three times I’ve had an iodine injection I got a blistering rash, almost like a sunburn, within a few hours of each procedure. This time around, I was to take 50mg of Prednisone 13 hours before, 7 hours before, and 1 hour before, in addition to 50mg of Benadryl an hour before the procedure started (in addition to all my normal meds – it was a lot of drugs in a short period of time, making me even more nauseated than my nerves had already caused me to feel).

Since we had such an early check-in time, in addition to living almost an hour and a half away from the hospital, we decided to get a hotel room down the street the night before. It was great not having to wake up at 3:30 A.M. to leave by 4:30-5:00 A.M. – making it so much less stressful of a morning. While I didn’t get a ton more sleep it was helpful to stay overnight regardless. We checked into the hotel around 7:30 P.M and didn’t have to worry about traffic or rushing to be there on time.

When we arrived at the hospital on Thursday morning, I was still pretty nervous since I did not know what to expect. There was a line to check-in and it left us a little behind. I signed all my paperwork and I believe I got called back around 6:50 A.M. Almost immediately, it was rush, rush, rush. I guess since I was having anesthesia because of a family history of malignant hyperthermia, instead of the traditional twilight sedation usually given during this test, I was scheduled for the operating room at 7:30 A.M. instead of 8:30 A.M. You could feel the pressure in my preparation room as everyone scurried around getting me situated to go. First they had me change out of every inch of clothes and put on a very fashionable hospital gown with neon yellow compression socks. I climbed into bed, praying I wouldn’t flash the large group of people who had now joined me in the hospital room. Luckily, I got covered in layers of warm blankets that covered me quite successfully.

Next, my room nurse quickly tried to put in my catheter, but could not feed the catheter into my vein – said my skin was too thick (which I had never heard)- and I began to swell and bruise almost instantly. The nurse then gave up and one of the medical student working on my paperwork decided to take a shot at it. He was able to get it in through the vein located on the side of my wrist on his first try, but he covered a whole side of the hospital bed and himself with my blood in the process. Quite messy but at least the catheter was in, right?

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The first IV catheter attempt

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The bruise is finally settling in

They both then drew my blood for a CBC and clotting times, followed by making me pee into a cup to make sure I wasn’t pregnant. Although I was VERY sure that I wasn’t, I know that it is typical protocol so I obliged and didn’t fuss about it – there wasn’t time to do so anyways.

Component Results

Component Standard Range Your Value
PREGNANCY TEST URINE Negative

COMPONENT RESULTS

Prothrombin Time 11.7-14.1 seconds 13.2
INTERNATIONAL NORMALIZED RATIO 0.9-1.1 1.0
The usual therapeutic range is 2.0-3.0.

High risk therapeutic range is 2.5-3.5.

 

Component Results

Component Standard Range Your Value
WHITE BLOOD CELL COUNT 4.0-11.1 10*9/L 9.2
RED BLOOD CELL COUNT 4.18-5.64 10*12/L 4.62
HEMOGLOBIN 12.1-16.3 g/dL 14.7
HEMATOCRIT 35.7-46.7 % 42.0
MEAN CORPUSCULAR VOLUME 80.0-100.0 fL 90.9
Mean Corpuscular Hemoglobin 27.5-35.1 pg 31.8
Mean Corpuscular Hemoglobin Concentration 32.0-36.0 g/dL 35.0
PLATELET COUNT 150-400 10*9/L 329
MEAN PLATELET VOLUME 9.6-12.8 fL 9.9
RED CELL DISTRIBUTION WIDTH CV 11.7-14.2 % 13.2
RED CELL DISTRIBUTION WIDTH SD 37.1-48.8 fL 43.2
Neutrophil % 91.5
LYMPHOCYTE PERCENTAGE 7.4
MONOCYTE PERCENT 0.9
EOSINOPHIL PERCENT 0.0
BASOPHIL PERCENT 0.1
IMMATURE GRANULOCYTE PERCENT 0.1
ABSOLUTE NEUTROPHILS 1.8-6.6 10*9/L 8.4
Lymphocyte Absolute 1.0-4.8 10*9/L 0.7
Monocytes Absolute 0.2-0.9 10*9/L 0.1
Absolute Eosinophils 0.0-0.4 10*9/L 0.0
Basophils Absolute 0.0-0.2 10*9/L 0.0
Immature Granulocytes Absolute 0.0-0.05 10*9/L 0.0
NRBC PERCENT 0 % 0.0
NRBC ABSOLUTE 0 10*9/L 0.00

After I got back in my bed, the anesthesiologist assistant came in to discuss what was planned as far as keeping me asleep. I’ve usually chatted with the anesthesiologist department days before the procedure but this time around I hadn’t and I was worried whether or not the hospital staff  could handle it – other hospitals had canceled on me in the past because of the complexity of the condition and the deadly consequences of Malignant Hyperthermia Reactions. She was very thorough in getting a detailed history on my case, pretty much assessing each one of my body systems. That in and of itself was refreshing, especially because I have a long history of complications and most doctors don’t take the time to look at the full picture as a whole. The main anesthesiologist came in during this time as well, very curious about my family history of malignant hyperthermia. Most hospitals have never seen a case, so the doctors are usually quite interesting in knowing the extent of the condition and who else in my family has it.  And again, he reiterated they’ll take caution to make sure nothing happens while I’m under through monitoring the entire time – I breathed a sigh of relief. 

Malignant hyperthermia (MH) is a potentially fatal, inherited disorder usually associated with the administration of certain general anesthetics and/or the drug succinylcholine.
The disorder is due to an acceleration of metabolism in 
skeletal muscle. The signs of MH include muscle rigidity, 
rapid heart rate, high body temperature, muscle breakdown andincreased acid content. Immediate treatment with the drug dantrolene usually reverses the signs of MH. The underlying 
defect is abnormally increased levels of cell calcium in the skeletal muscle.
There is mounting evidence that some patients will also 
develop MH with exercise and/or on exposure to hot 
environments. Without proper and prompt treatment with 
dantrolene sodium, mortality is extremely high. The best way to protect yourself, your family, your patients and facility,is to be prepared before it's too late. 
(Taken from http://www.mhaus.org/)

Originally they were planning to use Propofol, which I had used in the past and is quite safe for individuals with malignant hyperthermia, but my drugs somehow changed by the time I was back to the OR and I was given Versed instead. Thankfully, though, they gave me a number of anti-nausea medications, including a scopolamine patch and an injection of Zofran. I always appreciate it anti-nausea meds before going under because I am nauseated enough as it is without the help of anesthesia.

Once the anesthesiologists left, the vascular surgeon came to check to see how much longer until we were ready to go. We were only a few minutes away – waiting for test results at this point. The vascular surgeon asked if I had any questions, and of course I did. My biggest worry was they were going to to do surgery while I was under without talking to me about it first – just a hunch- a correct one from what was said when I had arrived at the hospital that morning. While a little awkward, I knew I had to express to them that I wanted nothing until we had more time to discuss all the options available for treatment and what  would be the best course of action with the longest results. I was also concerned about fixing one or two of the compressions, while not fixing the others, and the damage it could cause later down the road – I’ve heard hundreds of horror stories and I didn’t want to become one of them. Thankfully, the vascular surgeon agreed with my logic, but I can’t help but wonder what would have happened if I had not opened up about my concerns. Would they have done the surgery without consent? Who knows.

A minute or two after  the surgeon left, another nurse came down to escort me to the OR. We joked around about how we both needed more coffee that morning. I couldn’t even have any that morning and I was already having trouble staying awake (who needs anesthesia anyways -I’ll be asleep in minutes) I asked her to slip some coffee in my IV while I was waking up; She thought caffeine eye drops would be more effective. Our banter broke the feelings tension and  fear I was slowly building up along the way.

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As soon as we got to the OR, I was placed on the operating table, underneath the x-ray machine, and hooked up to every monitoring advice imaginable. They gave me a quick shot of versed and I was out, don’t think I last more than 10 seconds.

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I woke up in my hospital room around 10:00 A.M. The procedure didn’t take too long, but I had slept through in its entirety. I feel  a huge bandage down the side of my neck, causing me to be confused. I was so far out of it still.
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I was told they decided to enter through my jugular, instead of the femoral as planned – I know there was a reason for this, but I honestly can’t remember. The nurse tells me I have to wait at least 45 minutes until I can be discharged. She hands me water to drink and asks if I’d like to watch TV – I didn’t. I just wanted to go back to sleep, which I did.

The vascular surgeon checks in with me, telling me how the procedure went well and that they did re-verify the extent of my Nutcracker Syndrome and May-Thurner Syndrome, and confirmed that I do have Pelvic Congestion Syndrome as well. They did not look at the SMA Syndrome or the Celiac Plexus since they only focused on my veins today. I was still out of it when he was talking, but I heard him say my renal vein was at a 10. Although it wasn’t really clear, I believe he was referring to the pressure gradient of my renal vein – which anything above the number 3 is when surgical intervention is typically recommended. He said to set up an appointment in a week or two to go over surgical options. I thanked him and fell back asleep.

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Venography for Nutcracker Syndrome

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Pelvic Congestion Syndrome – Ovaries

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May-Thurner Syndrome

At exactly 10:45 A.M. my husband came into the room. He is frustrated because he couldn’t find where I was recovering. He was sent back and forth across the hospital twice before decided to just go back to the place we started, which was exactly where I was at the whole time. I chugged some water down and paged the nurse – I can go home now, right? She comes in, unhooks me from all the machines, and goes to the lockers to retrieve my clothes. I quickly get changed and it’s over. Surprisingly not too bad, but I was still out of it when I left the hospital. All I wanted, though, was coffee. Dear god, I NEED coffee. Thankfully, my husband was nice enough to stop on the way home.

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When the medications wore off that afternoon, that was when the pain actually set it. It was too bad until I tried to move in any way. You don’t realize how much you use your neck muscles for minimal movements. They advised I’d be in pain for the next 48 hours and then it should subside. The pain seems to be getting better hour by hour, but still quite uncomfortable overall. I spent the afternoon on the couch, afraid to move. I slept most of yesterday afternoon, early into bed last night, and slept in again today. Evidently I was extremely tired. I do have restrictions to follow for the next few days, such as no strenuous activities or lifting anything over 20 lbs for the next four days, but otherwise the whole thing was not too bad. 

I was able to take my bandage off tonight, which was great since it was really starting to irritate the skin underneath it. The hole in my neck doesn’t look too terrible either. I expected much worse.

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The remaining hole in my neck

Now I just have to wait until next week to decide if or when I am having surgery, depending on what they recommend.

Maybe there will be surgery for Christmas after all… I guess we’ll see.


References:

Malignant Hyperthermia Association of the United States (2015). What is Malignant Hyperthermia? MHAUS Website. Retrieved on December 04, 2015 from http://www.mhaus.org/

Society of Interventional Radiology (2015). Venography (Venogram). Radiology Info Website. Retrieved on December 04, 2015 from Radiologyinfo.org.