Welcome to the new age, to the new age…

The anticipation had been killing me, but I finally received the call that I had been eagerly waiting for from the vascular surgeon. I was in my therapist’s office when the call came in, but luckily she was kind enough to let me take it since she knew it was something I had long been waiting for. I think she was curious herself. Needless to say, it was probably a good thing I was in her office when the call came in, as I was not a happy camper.


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He started by saying he looked at my CT Angiography results and he had spent some time doing research, as well as talking to fellow vascular surgeons. 

Good.  I figured he had some research to do, considering the result. 

He goes on to say my renal vein definitely shows a large amount of compression.

Okay, go on.

He asks how I’ve felt lately.

“Terrible.”

“Remind me of your symptoms again?”

*sigh*

“Well, I have had horrendous stomach pain every day.

I’m nauseous constantly.  

I can’t eat anything without being sick. I don’t digest my food.

I have diarrhea and/or constipation that is limiting.

I am tired all the time. And not just tired, EXHAUSTED.

Dizzy, heart palpitations, spinning, and chest pain.

My limbs go numb. I have arthritis. My legs are stiff and painful.

I have livedo reticularis. 

I have painful rashes. They are getting worse and change day-to-day.

My hands are now so blistered I can barely hold on to anything…”

He says, “well none of those explain Nutcracker Syndrome…”

“Right. I haven’t had hematuria in years. Just the back pain and left, flank pain. Abnormal, unexplained bleeding. But all my abdominal pain is on my left side…

“So yeah, nothing relating to the Nutcracker Syndrome. Like I said before, I don’t believe in it.”

“What about the Superior Mesenteric Artery Syndrome? Or the May-Thurner? Both were noted in the results.

“I saw it, but I don’t believe they are the cause of your symptoms” he says.

“Well, SMAS can cause severe abdominal pain, nausea, anorexia, vomiting…”

” No vascular compressions typically causes any symptoms at all. None of us (vascular surgeons) believe that these ‘syndromes’ exist.”

“Oh…”

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“Besides, on the small chance that these conditions even exist, they are so rare. It’s not possible for you to have all three. “

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So the report it wrong? Because it says I have all three.

I felt my face getting really red. I didn’t know whether to cry or scream.

“I think whatever you have is systemic.”

“But it’s not showing in my blood work. If it was systemic, you’d think my blood work would show it…”

(I think this to myself, but I can’t say it out loud. I’m too frustrated and  taken off guard to even say almost anything at all)

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“Like I told you during the consult, I want to take a very ‘conservative approach’ to this. I don’t suspect the Nutcracker syndrome is causing your illness. I suggest you continue looking for the cause of your illness elsewhere. After you have exhausted everything else possible, then come back and I’ll re-examine you again. If at that time, you don’t have a diagnosis despite exhausting all other options, then we can go ahead and try to balloon the vein and see if there is any relief.”

“Okay. Thanks for calling.” I hang up.

I’m positive that there was no hiding the disappointment and  sadness in my voice during that call.

I don’t care though. Maybe it’s something he should hear. Not that he cares.

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I am beside myself at this point. I can barely breathe, my chest is tight, and I have no idea what to do.

So let me get this straight…

All these world-renowned doctor’s, who have researched these disorders extensively, don’t know what they are talking about?

The Mayo Clinic, The Cleveland Clinic, and The NIH know less than you, is that correct?

All the patients in my support groups are just lying about their symptoms?

Everyone in the Nutcracker Syndrome Group?

The Superior Mesenteric Artery Syndrome Group? The Wilkie’s Group? SMAS Support?

The May-Thurner Syndrome Group as well?

Not to mention these patient’s doctors (world-wide) who not only diagnosed them with these “imaginary” syndromes but also are treating them for it too. Are they lying?

The invasive surgeries that these patients have undergone, their feeding tubes that have saved their lives, their medications… Is it all for nothing?

All of those people with these ‘non-existent’ disorders, particularly SMAS, that have lost their lives to these conditions… must have never existed either, right? 

What a crock of sh*t!

{Excuse my language.}

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I debate on sending him all the research and case studies I have found.

There’s so many, but it probably wouldn’t matter anyways.

GARD Superior Mesenteric Artery Syndrome

Superior Mesenteric Artery (Wilkie’s) Syndrome as a Result of Cardiac Cachexia

Wilkie’s Syndrome

Wilkie’s syndrome causing persistent vomiting

Patient with Both Wilkie syndrome and nutcracker syndrome

Nutcracker Phenomenon and Nutcracker Syndrome

Case Report: Nutcracker syndrome: A rare anatomic variant

Current trends in the diagnosis and management of Renal Nutcracker Syndrome: A review

May-Thurner Syndrome

The list goes on and on…

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I feel panic inside. Now, what do I do? Where do I go from here?

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I tell my therapist what was said. Of course she thinks this is crazy. At least it’s not just me. She has looked into every condition and every medication the doctors have mentioned or I’ve found in my research. This is why I like her so much and why I continue to keep going. She tries to understand me. She respects my opinions. At least there’s someone.

I see her look down at my hands and legs. My hands are red, swollen, peeling, and visibly painful. My legs clearly look bruised in spots, with purplish-molted discoloration.  

She asks me, “what’s next?”

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I have composed myself by this point. No point in breaking down, anyway. There’s nothing I can do to change this doctor’s mind. Plus,  I’m used to being disappointed by doctors. He’s not the first one to not believe me, or give up on me. Sadly, he probably won’t be last either. 

“I find another vascular surgeon. Get a second opinion. I start over… again.”

“How do you feel about that?”

“I’m just tired of it, really. I feel nothing anymore. You get so close, then hit a wall. Over and over again.”

“That’s frustrating. It shouldn’t be that way”

“No, it shouldn’t. It’s unfair and it sucks, but that’s the reality of it. This is how it is to be chronically sick. Normal people don’t see this side of healthcare in their yearly check-ups or their infrequent appointments for a cold or flu. But we (those with chronic illness) deal with it every day.  Every day is a fight to get the proper care. These doctor’s don’t care. Health care in the United States was not meant for us (chronically ill). Yet, we keep fighting, who know’s how. Probably because there is no other choice. What else can you do?”

I lean further back in my chair. I’m not hiding my frustration or disappointment well. I know she understands, or at least can acknowledge,  how I feel. This alone makes me feel better. Well, at least better enough not to scream or cry, which was my initial reaction to the news. Even though I have had plenty of time to process what was said by now, I’m still in a bit of shock.

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As per usual, today was spent picking up all the pieces.

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I called multiple vascular surgeons all over the entire state and I found a few actually in town that accepted my insurance. Although I know an in-state doctor more than likely won’t have a great deal of expertise on any of my conditions, it’s the only option I have currently. I’d prefer to see one of the very few doctors (all in the highly accredited and well-known clinics across the country) that specialize in these disorders, but my insurance won’t pay out of state and it’s just not feasible for me financially. At least not at this time, maybe ever.  

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I made sure to ask them if they had surgeons who were familiar with ‘rare vascular compression disorders’. Of course, a lot of explaining of the conditions ensued and I had to be placed on hold multiple times while they asked the doctors, but I found two potential offices that may be able to at least give me a second opinion. They need another referral, however, which wouldn’t be an issue if my primary care office would actually answer their phone so that I could schedule an appointment with my doctor. But alas, both yesterday and today I got the infamous voice mailbox that literally goes nowhere. (There’s no actually recording, just a beep to leave a message. And every time I do leave a message, I NEVER get a call back) I guess I’ll try back on Monday.

Thankfully, Monday is the start of a new week.

It’s a good day to start from the beginning, once again.

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10 thoughts on “Welcome to the new age, to the new age…

  1. danLrene ©2011 says:

    As I read, I realized I was walking through the woods of memories of doctors just like that. There is a real issue with doctors NOT knowing about rare disorders and therefore they just do nothing. I remember when I was 31 and one of my dx was Chronic fatigue syndrome…and the doctor I went to told me he would do nothing for me because he did not believe in it. I was crushed…devastated.
    No, do not give up…keep working towards the answer. Even write to doctors in other countries that you find that have experience and ask them can they help you..do they know doctors over here that might understand.
    But also consider that you may have more than one thing. My first dx came as sarcoidosis but I have many other things wrong and so it has become a continual trip to the doctor, new specialist who find and are treating me for these other things. Never let a doctor take you down to “just a statistic they do not believe in”. Scream, cry your tears and then begin once more with the journey. There are over 25 million people in this country with chronic illness/auto immune disorders that doctors do not want to admit are there because it traces back to things done to us like vaccinations, etc that caused these problems. Hang in there.

    Liked by 1 person

    • Undiagnosed Warrior says:

      You are so right. As much as I hate starting over, I’m never giving up. I may end up going through every doctor in my state, I’ve looked into paying cash for online reviews, and have called all the leading hospitals in the country (just can’t afford, not now anyways). I get sad and angry, not only for myself, but because I know this happens all the time to many of us with chronic, undiagnosed, or rare illnesses. It’s disgusting and there should be consequences to this behavior, but there isn’t. These doctors took an oath and many of them fail it… fail us.

      Liked by 1 person

  2. That Girl says:

    I had a thing, back when I got sick, that didn’t fit into anything diagnosable. Nobody wanted anything to do with it. So many doctors, multiple biopsies (all normal), lotions and potions and pills and blah blah blah, and “nothing was wrong with me” except that I was sick. Everyone was fine telling me I had lupus, but this other thing…nope. And because it came on around the same time as the lupus, that just confused all of them. Surely I couldn’t have two weird things at the same time? That would just be too much of a coincidence!

    Every doctor I saw meant telling my story over and over and over. Carrying around all my files. Dredging up my hope again. Being disappointed again. So much time and money.

    I’m so sorry for you. I want to hug you tight and go with you to your doctors’ appts and yell at them for you (and for me, tbh). I know what it’s like to want to punch that horrible doctor in the face (I assume; that’s what I wanted to do back then) for wasting your precious time, for pretending he knows things he doesn’t, for thinking he knows more about you than you do. For not caring about your health. For representing every other doctor like him.

    For me, it turned out that I have a super rare chemical sensitivity to something that’s basically in everything ingestible. I ended up diagnosing it myself thanks to some wonderful people who published their research on the Internet. With their help, my life has become more manageable.

    My symptoms weren’t nearly as bad as yours, I’m not comparing our situations on that. But doctors…grrr. There are two or three I’d save, the rest can jump in a lake.

    Sorry for the long comment. Guess I have some leftover feelings on this issue 😉 But I guess I would add, with your determination, I know in my heart you will get your answer, you will find resolution. Your life will get better.

    Liked by 1 person

    • Undiagnosed Warrior says:

      It’s definately frustrating and damaging to your self esteem, I can see why you’re still feeling it. It’s definately the biggest struggle I go through, even ahead of the symptoms. It’s funny you day caring around your binders, that’s exactly how it is. I finally scanned everything in and use my tablet, because two 3-inch binders full got heavy to carry around. Thanks for the encouragement.

      Like

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