For anyone looking for information, theories, or research
on vascular compression syndromes and disorders:
This article is one of the best and most insightful papers I’ve read to date on vascular compression syndromes. It is helpful because it’s simple and easy to understand as well.
“Abdominal complaints often have a simple cause, which can be clarified easily, especially if they occur suddenly or show clearly recognizable correlations with other symptoms (e.g. diarrhea, vomiting, and fever). However, if abdominal pain, lasts for a long time, over weeks or months, elaborate tests are often required in order to clarify their cause. Not rarely, the origin of the pain may remain enigmatic, so that psychological causes and specific living conditions are considered as the main cause or trigger of the complaints.
And yet, hardly anyone is aware that a number of patients suffer from compression of blood vessels or compression of organs by abdominal blood vessels, the so-called vascular compression syndromes. Since these diseases may give rise to many, seemingly unrelated symptoms in addition to pain, they are explained here for a broader audience. So-called vegetative symptoms play a significant role in the suffering of patients with vascular compression syndromes. These very annoying symptoms as nausea, dizziness, respiratory disabilities (primarily inhalation), loss of appetite and rapid satiety, (nearly) fainting on exertion and episodes of diarrhea are found very frequently. They emerge in addition to pain or even isolated. Left-sided flank pain and abdominal pain are the predominant pain localizations but from there the pain may radiate to the back or the chest, sometimes to the left thigh. Headaches are not rarely found and may be exaggerated during physical exercises, may be throbbing and emerge preferentially in the nape.
We often receive inquiries from patients from abroad, looking for advice and a comprehensible explanation of their complaints as well as the anatomical and functional implications of vascular compression syndromes. Therefore, this article is written to ease the understanding of these conditions. It is written in simple, mainly nonmedical terms and directed to lay people. If there remain questions concerning specific circumstances of your own condition – then simply write by email to: email@example.com”
Some of the highlights from this paper
I found to be most helpful or interesting:
“All abdominal vascular compression syndromes are caused by the discrepancy between the anatomy of man, which corresponds in principle to a quadruped mammal, and the upright posture of human beings” (Scholbach, 2014).
“With the onset of puberty, the anatomical differences in the skeleton in both sexes increase significantly, and may exert a great influence on the venous blood flow to the abdominal and pelvic organs. The female pelvis is wider and deeper than the male one, and thus causes a positional change of the pelvis and the lumbar spine” (Scholbach, 2014).
“The compression of the left renal vein at the nutcracker phenomenon leads to a number of unpleasant consequences. The renal blood accumulates in the obstructed vein and its pressure rises. The vein enlarges, its tributaries cannot empty into the vein, they dilate and in many cases the blood flow turns backwards into these tributaries. They become collateral pathways for the left renal vein” (Scholbach, 2014).
“Since both the left renal vein, coming from the left, and the duodenum, coming from the right, must pass the aorto-mesenteric angle, also called the “nutcracker”, both the nutcracker phenomenon and the superior mesenteric artery syndrome can occur simultaneously. Due to the compression of the duodenum, the patients experience a failure of food transport a short time after starting the food intake. The chyme backs up at the compression site, a few centimeters after leaving the stomach. Frequently, patients report sensations of loud peristalsis, bubbling, and sudden change of symptoms “as if something slips through”. Nausea and vomiting often terrify the affected ones and they try to prevent these ordeals by reducing food intake, which in turn, over time, intensifies the suffering since in meagre persons the aorto-mesenteric angle tends to become even narrower” (Scholbach, 2014).
“This brief description of the different vascular compression syndromes for lay people should make clear, how many and apparently unrelated symptoms might be caused by the imperfect human maladaptation to the bipedal gait” (Scholbach, 2014).
I’m not entirely sure which is worse:
Having every test comes back normal and
you have no idea why you feel so horrible everyday
The sudden onset of one abnormal test after another,
slowly taking away any hope of you ever feeling better.
I’ve dreaded writing this post, mainly because I still have so many more questions than I do actual answers at this point, but the final test results should be revealed at my follow-up on Wednesday and I figured that there is no time like the present. Well, there’s that, and also the fact that I want to share these findings in their entirety and explain exactly why I’ve been so quiet lately.
So much to say and not enough time or energy to do it all at once.
So this post will be broken down between a few different parts.
So much has gone on in the last couple months. These days, I don’t know what is connected to what anymore, particularly when it comes to my symptoms. I always knew that my diagnosis wouldn’t be a simple one, but it seems like every week now the doctors add one more new problem to the list. It’s been a lot to take in, especially because life keeps throwing in additional added stress that I honestly could do without currently. I haven’t had much time to think about anything, let alone process what this all means. I honestly haven’t even been able to research these results like I normally would, thus being left with so many unanswered questions. The doctors may lose it when I walk into my follow-up appointments with the two-page list of questions that I’ve already put together without even really trying.
If you remember from my earlier posts “Welcome to the new age” and “Oh doctor, doctor…”, tests had just come back, confirming I had three vascular compression syndromes (Superior Mesenteric Artery Syndrome, Nutcracker Syndrome, and May-Thurner Syndrome) as well as POTS (Orthostatic Tachycardia Syndrome), and I had just started care with a new cardiologist, who just so happened to notice some irregularities in my earlier cardiac tests from back in 2005, and again in February 2014 (but the results were dismissed by two different doctors for being “insignificant”). Anyways, he decided to order some follow-up testing before referring me over to the dysautonomia research clinic at the university’s medical school for treatment, hoping they’d also be able to refer me to one of the very few doctors in the country that treat the vascular compression disorders. I had honestly believed going into this round of medical testing that these tests would be (again) a waste of time, as they have been “insignificant” for 10 years now. I knew, though, that once these tests were finally completed that I’d be able to begin treatment for [at the very least – one part of] my illness. Obviously I obliged. I also had one more test that my GI doctor had also ordered, but figured that the non-stop medically testing was almost truly over. Finally!
But I was wrong… so very wrong.
Initially, the cardiologist ordered two tests:
1. Echocardiogram with contrast.
An echocardiogram is a test that uses sound waves to create pictures of the heart. This test is done to evaluate the valves and chambers of the heart from the outside of your body.
An echocardiogram can help detect:
Abnormal heart valves
Abnormal heart rhythms
Congenital heart disease
Damage to the heart muscle from a heart attack
Inflammation (pericarditis) or fluid in the sac around the heart (pericardial effusion)
Infection on or around the heart valves (infectious endocarditis)
Ability of the heart to pump (for people with heart failure)
Source of a blood clot after a stroke or TIA
Contrast Used: Agitated Saline Injection
Agitated saline solution administered via intravenous injection provides air microbubble contrast in the right heart. The air microbubbles are short-lived and diffuse into the lungs when traversing the pulmonary circulation. Therefore, the microbubbles enter the left heart only in the presence of a right to left intracardiac or extracardiac (pulmonary arteriovenous) shunt. Saline microbubbles are therefore helpful in examining the right heart and identifying shunts or holes in the heart.
A Holter monitor is a machine that continuously records the heart’s rhythms. The monitor is worn for 24 – 48 hours during normal activity. Electrodes (small conducting patches) are stuck onto your chest. These are attached by wires to a small recording monitor. You carry the Holter monitor in a pocket or pouch worn around your neck or waist. The monitor runs on batteries. While you wear the monitor, it records your heart’s electrical activity.
Holter monitoring is used to determine how the heart responds to normal activity. The monitor may also be used:
After a heart attack
To diagnose heart rhythm problems
When starting a new heart medicine
It may be used to diagnose:
Atrial fibrillation or flutter
Multifocal atrial tachycardia
Paroxysmal supraventricular tachycardia
Reasons for fainting
Slow heart rate (bradycardia)
Like I said , I’ve had these tests before and I really wasn’t too worried about them.
Hell, the last time I even had a holter monitor on (back in 2005), I had to wear that baby for an entire month… in the middle of summer… in Florida… and you can’t get it wet… at all… even with sweat… So, 24 hours in Colorado – no problem. I’d say my symptoms were low-average on the day that I had the monitor on. I kept thinking to myself, of course, you’ll have a semi-good day for the first time in a long time BECAUSE you’re being monitored. I did have my usual tachycardia and dizziness, plus one episode of syncope, but nothing I would call spectacular or extraordinary, though. I did, however, have one very loving foster dog concerned about why I had wires and a box attached to me, so he was by my side non-stop throughout the entire day.
Anyways, the next test was the echocardiogram. The saline contrast was definitively the most interesting part of the test- at least from a patient’s perspective. I was disappointed that they had me facing away from the screen when they actually injected it, but you can feel the bubbles as they move through the body and to your heart. Plus the second nurse was fun to watch, as she had no choice but to demonstrate good coordination skills when “swishing” the saline solution back and forth between the syringes, all while holding my IV catheter in at the same time since my veins refused to cooperate that day.
When the tests were done, I was told they’d be back in a few days and that the doctor would give me a call. Although, typically it’s the nurse who calls -not the doctor- but that’s beside the point. I went on my merry way and didn’t think twice about it again.
The next morning, as I’m still asleep from being up late due to sickness the night before, I see a missed call from the hospital and it shows that I have a voicemail. I press play and realize it was the cardiologist HIMSELF calling. Uh, oh… I immediately call back, but have to leave a message as he in currently in with patients. Well, crap!
Still, I didn’t expect the doctor to have found anything of significance anyways, so I let it go out of my mind and got started on the rest of my day. That afternoon, the nurse from the cardiologist’s office calls (I guess the doctor was still busy with patients) and says that the doctor wanted to make sure that someone called me with the echocardiogram results that had come in earlier that morning, although they were still waiting for the holter monitor results. She then tells me that the test showed that I didn’t have a hole in my heart, which is what was originally expected based on the previous cardiac results. Good, I think myself… another normal test.
For once, I don’t want abnormal tests – not when it comes to my heart, anyways.
Even more so because I watched my mother die from a heart attack at age 49.
But the nurse wasn’t done. Oh… She goes on to say that, unfortunately, it looks like there is still some pericardial effusion (which was also seen on the Feb 2014 test). More importantly, though, it looks like your heart is failing… *Excuse me, did you just say thatmy heart is failing?!?!* Well, your ejection fraction is less than 50% on the left side, which means your heart is pushing out less blood than it should be. The doctor wants to order a couple more tests if that’s okay.
*Of course it’s okay…
Am I really going to say no
directly after you just told me that
I’m going into heart failure.*
I’m connected over to the scheduling department at the main hospital to schedule an exercise stress test. They also have already started on the pre-authorization process for an MRI of my heart as well… with contrast. (Sadly, no bubbles this time around, just gadolinium). The hospital tells me that I’ll get a call soon, once my insurance approves the test, but the doctor wants this test done ASAP. I hang up the phone, in shock.
Did she really just say my heart is failing? I heard that correctly, right?
I walk out to the deck and sat down quietly. The first thing I do, of course, is start Googling everything I can: “heart failure”, “low ejection fraction”, “heart failure, left side”, “low ejection left side” “causes of low ejection”…
Just then, my husband walks out. He always has such good timing.
“What did the doctor have to say?“
I pause for a moment, not sure what to tell him
if I can tell him at all…
Can I even say it out loud? I’m not sure.
“They need to order more tests because my heart isn’t pumping correctly, something about the left side and the ejection fraction.”
I don’t want it to be a big deal, ya know.
At least not yet.
Not until I see the results and it’s all matter-of-fact.
“What did they order?”
“An exercise stress test and an MRI of my heart…”
My husband works in health insurance.
He knows how hard it is to get MRI’s approved because of the expense.
Typically, there has to be history and prior tests.
Unless there’s a legitimate reason the patients needs an MRI,
as opposed to other diagnostic tests.
“So what does this mean?”
“It means that my heart is failing…”
And with that, there’s nothing much more to say.
Of course, now I am worried. And starting to get scared. But what can I do but wait? Besides, maybe it’s not that bad and they are just being cautious. It is the heart, after all. I try not to work myself up over it.
A few friends stop by that night and we act like everything is normal, because -ultimately- it is relatively normal for me. I’ve lived with this condition for years, remember. Tests showed abnormalities 10 years ago.
Plus, we’re still waiting for the holter monitor results. There’s no way they’ll come back any worse, especially when I wasn’t even that sick during the recording time.
But I was wrong, so very wrong… again.
To Be Continued…
The sadness always follows a hard blow.
I know these feelings won’t last forever,
but it feels like it’s never going to get better.
I feel like I am never going to get better.
It doesn’t help that I have been green with envy lately. One of the support groups I belong to for the compression syndromes has had multiple members just recently complete surgery or are scheduled to have it done soon. Despite the long recovery time, not to mention the pain and time spent in ICU, I can’t help but feel a twinge of jealousy. I’m happy they have doctors that listen to them and are willing to do research. And that they will hopefully be getting better. But I can’t help but WISH that was me.
Yes, I said it.
I am in fact JEALOUS of other people who are sick
and having surgery.
Am I absolutely crazy or what?
I know I shouldn’t compare myself to others, but really, though, I am just sad that I feel like my doctors aren’t concerned about how this illness is affecting my whole life and that it seems to be getting progressively worse. Maybe that’s unfair to say, but it’s how I feel.
I mean yes, they’ve finally run some tests and tried medications, but nothing has made a difference in how I feel. There has been no improvement or relief thus far. Not everything is being documented in my medical records, according to the notes I am perfectly fine (just like my blood work). When I do get abnormal tests, they are blown off as insignificant. How can I not be sad?
I had to put my rabbits up for adoption (still searching for a home) because I can’t clean their cages adequately anymore. My hands are so raw from all the rashes, they hurt to hold anything (even typing on the computer causes pain). My joints are so stiff and I’m too weak to carry the giant cages outside to the trash. I feel like I am falling apart.
All I want is to feel better. I’m willing to do or try anything to have one day of comfort. I just keep feeling worse each day that goes by, but no one besides me seems concerned about this. I’m so sick every time I eat. The pain, especially tonight, is so horrible it HURTS to breath. With every inhale I take I feel like I am going to throw up. I’ve only eaten a handful of tortilla chips today because nothing else will go down. How is this ok? or normal?
Must just be in my head then, right?
I’ve tried to take my mind off my sadness by attempting the tricks the cardiologist recommended to help with the POTS, through water and salt loading (drinking tons of fluids and eating/drinking large amounts of sodium), and low-grade exercise. So far, I haven’t noticed much a difference, but that could be due to the fact that my stomach doesn’t seem to want to cooperate with either food or water intake these last few days. I’ve also been “running” on the elliptical for about 15 minutes a day. Even though I am not “pushing myself” too hard, my heart rate exceeds 200 b.p.m in less than 5 minutes. Shortly after, the pre-syncope comes and I have to lay on the floor until my heart rate goes back down. Today, I decided to check my blood pressure after working out. I waited until I had sat for 10 minutes or so, and my blood pressure read 28/26, with a heart rate of 135. I’m pretty sure I should be dead, according to the chart. And yes, I ran it twice because I thought it was an error. I am not sure how I was upright then, but definitely I feel the effects now.
I am not sure if I should keep going with it or wait until my cardio tests come back. I did finally get an appointment with my primary care physician for tomorrow to get another referral to vascular surgery. After three days of calling and getting connected to the answering machine (that has been full since Friday – and yes, it was the voicemail of no return as well), so I drove down to the office to make an appointment. Yes, this is absolutely ridiculous, but at least I finally have an appointment. More testing on Wednesday in the hospital. On the bright side, at least some of the doctors are still trying. I’m just so tired at this point, I”m ready for this all to be over, but it doesn’t look like that will be the case anytime soon.
I’m sorry for the depressing post, but I just needed to get this all out of my head.
Living with a chronic illness isn’t always about the fight to be strong.
Or motivating others.
Sometimes the hardest part of the fight is just getting through the dark times.
The times you’re in so much pain it hurts to breathe or even cry.
Luckily, these feelings don’t last forever…
“Hang on, when the water is rising
Hang on, when the waves are crashing
Hang on, just don’t ever let go…” (Plumb)