Nothing Like Designer Jeans

I’m listening to Pandora right now, and Whitesnake’s “Is This Love” happens to be playing. What were the hottest jeans from 1988? Maybe they were Guess?, maybe they were Girbaud (with the little loop at the top of the fly). I remember that it was important for guys to have Levi’s, at least in the little town where I was attending school when Tawny Kitaen was straddling two Jaguars.

There’s trends in medicine too. Remember how just over a century ago, no one really had a grasp on how important it was to wash your hands? And remember how 80 years ago, antibiotics were just around the corner, but before they were available to the general public, syphilis could very well be a death sentence? But it’s not so much trends as it is that we become more aware and educated.

Medicine attempted to treat PTSD in soldiers and document it for as long as wars have been fought. Different names have been attached to it; “Soldier’s heart” for the Civil War, “shell shock” for World War I; and “Combat Stress Reaction” for World War II.

After WWII, the American Psychiatric Association worked to put together a label that would apply to all symptoms that would appear as a result of traumatic events, not just war. It has actually been through five revisions to date and includes four different types of symptoms: reliving the traumatic event (also called re-experiencing or intrusion); avoiding situations that are reminders of the event; negative changes in beliefs and feelings; and feeling keyed up (also called hyperarousal or over-reactive to situations). Most people experience some of these symptoms after a traumatic event, so PTSD is not diagnosed unless all four types of symptoms last for at least a month and cause significant distress or problems with day-to-day functioning (see PTSD: National Center for PTSD ).

Since I’m part of the Chronic Illness Bloggers network, I’ve been able to read a lot of my fellow bloggers’ unique perspectives, and more than once I’ve seen references come up about PTSD in medical settings. I cannot believe what some of you have had to endure. I worry about putting on my Girbaud jeans and raising my hand and saying “Me too,” but after having many discussions with my counselor, she has confirmed that I indeed have PTSD triggered by my experiences brought on by this mystery disease.

Was there one big bang? I don’t think so, just like there isn’t one big battle in war, but a whole war. There were certain things that were especially traumatic. The time that my neurosurgeon stood in the doorway of my hospital room on the night of my birthday in 2013 after my fourth surgery and told me he would have to send me home nearly blind because he was just in there and it had to be something else, not a shunt failure was especially traumatic (turns out that it was a kink in the shunt that developed that would not have been discovered if I would not have thrown a hysterical fit to have a nuclear shunt study performed).

One story that I told to my counselor in this week’s session happened January 2014. 2013 was my big year of surgeries – six in all. I got to know my symptoms of shunt failure really well, plus I figured out that I was making copious scar tissue and adhering the shunt to my chest and abdominal wall. At various times I also leaked great big pools of CSF out of my spine so that I had a softball-sized vat of fluid sitting on my back, and a more dangerous situation of having a shunt in my brain and another one in my back, making it harder to control pressure.

My last surgery in 2013 was December 21st; that was when my neurosurgeon finally believed me after 2.5 years that I was allergic to the shunt, when he saw for himself that my abdomen was red and inflamed, like a “war zone,” as he put it. I told him that I needed to see an immunologist and a rheumatologist, but he said that I was “taking it too far.”

A month later, my shunt clogged or strangled again and it was adhered to my abdomen by scar tissue. I went to the ER and saw the on-call neurosurgeon, someone I had never seen before but who was with Barrow Neurological like my neurosurgeon and had access to all of the notes from my surgeries and could talk to my neurosurgeon. I demonstrated for him my usual problem when my shunt isn’t working and my symptoms come back: when I’m upright, my face is paralyzed and I can’t open my eyes; when I lay down, my eyes immediately open because the fluid moves away from the brain stem. When I sit back up, the fluid moves back to the brain stem and presses on the nerves again.

The neurosurgeon went away. The regular ER doctor came in and said I had a clear case of a classic migraine headache. I told him it was ridiculous and asked if anyone read my notes from my chart from all of my other admissions and surgeries, and he said he didn’t know, but that was what the on-call neurosurgeon said. Then he handed me a prescription for opioids. I was absolutely floored. I demonstrated for him what happens when I put my head parallel to the floor – my eyes open – and what happens when I’m upright, and asked him if that’s “typical migraine symptoms,” and he said he didn’t know, but that was what he was told, so that was it. I told him it was bullshit (never raising the volume of my voice, by the way). I told him that if they discharged me, I was going to turn around and ask to be admitted again. He told me they would refuse to treat me. I asked him why he prescribed pain medication for me when I wasn’t in pain, my shunt was simply clogged. He said that with patients with clogged shunts, they always get headaches, so if that was really my problem, I should have a headache. Then he left.

I was openly crying and shaking. The nurse came in and her whole demeanor toward me changed. She told me that I had to stop being abusive to them, they were just trying to help me; all the while I couldn’t even speak, I was so stunned. Then she yanked the IV out of my arm without putting pressure on the puncture so that I bled all over and then snidely said, “Oh, look at that, you’re a bleeder!” I just sobbed harder. She left the curtained room and I shut the curtain and cleaned myself up and managed to get changed. She came back with the discharge papers. I asked her if she could walk me out of the maze of the ER back to the lobby. By then it was 4 a.m. and quiet. She told me that she was too busy and that I had to find my own way out. My room was next to the nurse’s station, and many of the night ER staff had congregated there and were observing the exchange. They could also see that I had a cane and paralyzed eyelids that were mostly closed; one offered to help, but my nurse said, “She’s fine.” Another person asked me if that was true, but I couldn’t speak. I just kept walking. You could have heard a pin drop.

I finally made it out to the now-empty ER lobby and managed to call a cab and directed my face to the windows so I could watch for the familiar colors of the cab company. When the pressure gets bad, that’s all I can do – make out shapes and colors.

When I contacted my neurosurgeon’s office after that visit, I discovered that he actually upheld the on-call neurosurgeon’s decision to diagnose me as having a migraine episode, even though my neurosurgeon had been following me for 2.5 years and knew my symptoms just as well as I did at that point and performed all 8 of my surgeries to date. Everything that I have told my neurosurgeon that has been wrong with my body has been completely correct, and for him to suddenly go with something as far-fetched and outlandish as to describe this as a migraine episode immediately caused me to distrust him deeply. Before I would have talked to anyone who would listen about how great he was about thinking outside the box; after that I only hoped to survive.

Because of this horrible ER visit, I went home and started stretching my torso because I could tell that the shunt was adhering again to my abdomen only 3-4 weeks after the previous surgery. It was the only thing I could think to do. In the process, I managed to stretch so vigorously that there was a tug of war internally and I created a break in the shunt, which led to a leak…and because my neurosurgeon finally conceded that my demand to get an immunologist and a rheumatologist involved in my care was actually very practical, he refused to fix my leaking shunt for almost a year, which was EXTREMELY painful.

But that’s another story.

Back to PTSD. Post Traumatic Stress Disorder isn’t reserved for those who only experience war, or even a natural disaster. It certainly applies to anyone who has been abused in a relationship.

And it certainly applies to me. And I’m not even done with the war. I’m not even “post” anything yet. 

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23 thoughts on “Nothing Like Designer Jeans

  1. **God help us ALL when the medical profession passes the buck and circles the wagons.** What is WRONG with these ego-defensive people?

    The mindset underlying their so-called “treatment” is SHAMEful and disgusting – and examples like this make it incredibly difficult for me to retain any sort of respect for the medical profession anymore. In the past 25 years I have learned of stories like yours consistently (from clients and students as well as online) – often enough that I am quite sure that inexcusable behavior like this is endemic.

    I hate clicking “like” on articles like this one — we REALLY need a “Good Post!” button! I don’t even “like” the fact that you left me a link to this post at the bottom of my October Mental Health Awareness article – although I appreciate it. However I DO like the fact that people like you continue to post – and to self-advocate strongly.

    If it changes what even ONE doctor does, it will make a positive difference in more than a few lives.

    My heart goes out to you – and I truly HATE the medical “professionals” for how they have treated you (especially that odious nurse – may karma come back on her quickly!). Thank GOD it seems as if you’ve found a decent counselor – not that it changes the medical situation.

    xx,
    mgh
    (Madelyn Griffith-Haynie – ADDandSoMuchMore dot com)
    – ADD Coach Training Field founder; ADD Coaching co-founder –
    “It takes a village to educate a world!”

    Liked by 1 person

    • Thank you, Madelyn, for giving us space to talk about these things, and the opportunity to share with a larger audience. I have no idea what the fix is. The insurance companies put an insane amount of pressure on doctors and patients, but they also pay when we clearly couldn’t possibly on our own. Doctors are becoming suicidal and it’s a big, dirty secret. Patients are getting sub-standard care for anything above and beyond a sore throat. Everyone is angry. What is working, anyway?? But yeah, I’d love to catch a break. I’m pretty worn out.
      (As a side note, hello to you in Cincy! Stay away from that “chili” – you can’t trust it!)

      Liked by 1 person

  2. This is absolutely disgusting the way you have been treated by the so-called medical community!! It enrages me to read what they have done to you and from my own experiences with a serious sinus disease and going in this month for my 11th surgery, (2nd craniotomy to get to the frontal sinus), I have been through a few doctors from hell myself. We know our bodies and symptoms like The back of our hand and to be cast aside and not believed is brutal! So I can relate!! I am now blessed with a stellar medical team but it has taken me years and lots of pushing and fighting for myself which is very traumatizing and so tiring.
    I look forward to reading your posts and my heart goes out to you!!! Thank you for sharing the hell you go through and are still going through!!! I too am on this journey alone as my ex couldn’t hack it. Asshole, so that makes it even harder. You are one strong lady but you need and deserve a big break! I hope so much that you find the right doctor to help you live a much better quality life!! I finally did but these diseases are chronic so they are never going away. And may Karma do its job and come back to haunt that wretched nurse and the doctor from the ER that night. Hang in there…..
    Cathy from Toronto 🙂

    Liked by 1 person

    • Hello, Cathy! Best of luck to you on surgery #11 – I hope it does what you need it to do!!! I completely relate to it taking years to getting a care team in place that you can trust, of course. I felt like I finally had that accomplished in Phoenix, for the most part, but the neurosurgeon decided to stop operating after surgery #10 in just under 4 years (I think) because he was in a fair amount of denial. He seemed to think there was no way the shunts could fail that quickly and there must be something else wrong with me entirely. Now that I’ve attended the hydrocephalus conference, I of course know that shunts can fail even a day after implantation and it’s not my imagination.
      Screw the jackhole doctors and screw the jackhole exes who can’t handle the pressure. They should try it on our end for a few months, then they’d really have something to cry about! I wish you a few rainbows and puppy dogs yourself, sister! ❤ Take care, and may you have some mighty effective painkillers.

      Liked by 1 person

      • Aww, thank you so much!!!! That’s so sweet!! And good for you for educating yourself and attending the Hydrocephalus Conference. We are own best advocates and know what we’re talking about as I have done plenty of research myself. We are definitely not textbook cases, lol!!!!
        I know how disappointing it is to think you have found your trusted team, and then they throw you under the bus because your not getting better!! Ten surgeries in just under 4 years is wild. I thought 4 in 1 year was bad!!! Thank you again for the good wishes and back at ya with the rainbows and puppy dogs!!! ❤️❤️ You are one hell of a trooper!!!

        Liked by 1 person

      • Take the research on shunt failure to the neuro AND the hospital admin – and insist that it be put it in your file, after initialing that they read it – and to call with an appointment for your next surgery (a more polite way to say F-U), and not as likely to force you to cross this facility off your list as going to the press with your story.

        I trust you have already insisted on a copy of your file for your personal records, right? In case your [American] readers don’t know, by law, they cannot refuse that request.
        xx,
        mgh

        PS. I moved the link to this post into the relateds on my October Mental Health Awareness post

        Liked by 1 person

      • You’ve got some fantastic suggestions; I am going to use them with some modifications. I’m no longer living in the state where the first 10 surgeries were done and they’re not doing any future surgeries on me. I am not certain of what I’m going to do moving forward because 1. I only have days, at best, with new shunts before they clog – why would I want a new one?, and 2. I have no idea how bad my symptoms will be if I take this one out that is just limping along. If they don’t get worse, then fine, but if they do, then holy hell, I’m in really, REALLY big trouble. I still haven’t found a neurologist to handle my case long-term or a neurosurgeon who isn’t scared of me. Also, I’m going to make sure the research documents from the shunt failure studies in Michigan make it in my disability attorney’s documents for my case.
        Also, to date, the press is ZERO interested in my case.
        As always, thank you for your support and your enthusiasm!

        Liked by 1 person

      • My “ideas” are merely reminders. I know that most of anything I might suggest to anyone struggling long-term (like you) won’t be new info, so thanks for being so gracious.

        Still, in case there is something that might help that some blogger or reader has not tried (or dropped out), I would hate to think they continued to suffer when there might be *something* else they might try.

        Gotta’ love the soundbite press. [NOT!]

        xx,
        mgh

        Liked by 1 person

  3. It sickens me to read about how you have been treated. There aren’t really any words of comfort, because it just shouldn’t have happened, but I’m so sorry that it DID happen, and is still happening. Although it doesn’t change the awful medical situation, I’m so glad that you’ve found a counsellor who validates those awful experiences as traumatic. I’m also grateful to you for sharing your experiences so openly, even these ugly and difficult ones. Sending love and hugs xx

    Liked by 2 people

    • I wish I could say that my experiences were limited to that particular hospital, but they weren’t; my experiences have been just as awful here in Minnesota. I got to know the staff at the hospital in Phoenix pretty well from the 10 surgeries and many more ER visits so I got used to certain rhythms at the hospital (when to expect food service, bloodwork, daily rounds, etc.), but being rejected in any setting never gets old.

      Liked by 1 person

      • I have chronic disorder that does not fit into the paradigm of the behavioral health system which currently dominates mental health.

        Behavioral Health is the spawn of HMO driven medicine and it works best for people with problems that can be solved by ‘managing’ behaviors.

        But Schizophrenia is not a behavior and neither is Complex-PTSD.

        Both illnesses require long term treatment approaches and the treatment of the severe dissociative disorders that attend C-PTSD is long term psychotherapy.

        It’s infuriating to go to a clinic sent to a group where we are told to ‘think positively’….

        It’s a slap in the face.

        Liked by 1 person

      • With a fair amount of confidence, I can lay this at the feet of the pink ribbon campaign. They assigned a cute little ribbon to a disease as a reminder to everyone to think about the disease, and to donate money for a cure, and to never give up the fight. Now everything’s got a ribbon, everything’s got a fight, everything’s got a walk, and we as patients had better stay POSITIVE and FIGHT! Look how successful it has been for breast cancer!! Of course, everyone cooks a casserole for cancer. (Pardon me, I only got 3 hours of sleep last night because I had an anxiety attack over the doctor’s appointment I just got out of this morning.)

        Liked by 1 person

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