Tag Archives: pain

New Back Brace

It took 3 years, but I finally convinced my orthopedist to order me a custom back brace. I have a rare type of scoliosis, very flexible with a teenage onset and that continues to progress even as an adult. My specialist at Hopkins suggested bracing me 3 years ago to see if that had an affect on the progression, but my local docs always insisted on an off-the-shelf, one-size-fits-all corset brace. News flash: Men don’t have hips, but some women do and a brace that doesn’t flair at the hips isn’t going to fit such a woman. (You’d be surprised at how often [male] doctors tried to convince me that male and female bodies are actually the same.) Since these braces invariably slid off my hips and up my chest every day, I quit wearing them and my scoliosis kept progressing.

Anyway, my local, politically incorrect ortho wrote me a Rx last month for my very own custom, plastic back brace. Have you ever had one made? It involves wearing a skin tight, t-shirt material halter dress, which might be sexy if 1) it wasn’t totally see-through and 2) I had my pre-baby body of 5 years ago. So now that I’m feeling a smidgen awkward, two people come in and start wrapping me in strips of fiberglass, like I’m a giant 5th grade papier-mâché project. They were really nice about it though (mostly just glad I wasn’t a squirmy 5 year old or unconscious, the latter of which apparently happens from time to time since they wrap you really tightly).

This is me without my brace (curve: 40 degrees):

This is me once I’m braced.
It goes over the tank top and under my shirt.

Added benefit of the brace? “You won’t be able to eat those extra French-fries without loosening it up,” my doctor told me. He’s a winner, that one.

Now, I have a habit of naming things, and I think this brace needs a name. It also needs to be a masculine name because, as my friend Danielle put it, “He’ll be squeezing you tight and with you more than a stalker! He’s always got your back, and, just like a man, he is helping you feel good in the long run, but sometimes gets in the way and doesn’t look flattering with your sexy, slinky dress.

Wonderful readers, I need your help choosing a name! So far all I can think of is Hugh (yum!) or The Situation (tell me you get the joke!). Please leave your suggestion for a name (or vote for one of those two) in the comments and I’ll choose a name in the next few days. I don’t really have any fancy prizes to offer, but if I choose your suggestion, I’ll link up to your blog if you’ve got one!

Below you’ll find some pictures of said super-sexy brace. He felt the need to show you just how awesome having a brace can be.



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Being an Empowered Patient

I’ve been thinking a lot about doctors these past few weeks.  I’ve had problems with a couple of them recently, particularly my pain doctor.  Her nurse doesn’t return calls for days, is sarcastic, and the doctor herself is unavailable and assumes I’m a drug addict (or at least that is the impression that I get).  I could suck it up, I could fire her and try to find a new doctor, or I could address the issues head on.  I think too often patients do the first, when they should try option #3.

So, these are my tips for being an empowered patient, which I think are applicable to everyone and not just us “professional patients.”

1)    Know the purpose of your visit ahead of time. This might seem really basic, but the more direct you can be, the better.  Don’t just say you’re sick, or you’re in pain: let the scheduler know what hurts and for how long.  Having this information will tell the scheduler know how urgent your case is and help you get in more quickly.

2)    Type out your relevant history and bring it with you. I have done this for two of Mark’s appointments – when he had pneumonia and when he was diagnosed with Type 1 diabetes – and both times received very positive comments from the doctors.  Each time the paper I prepared was no longer than a half a page.  I listed his medications, surgeries, and a timeline for his symptoms.  I brought a copy for the nurse and a copy for the doctor.  This ensured we wouldn’t forget anything important and they had a hardcopy of everything that we’d discussed so they wouldn’t forget, either.

3)    Write out any questions ahead of time. It’s (usually) not that they’re jerks: insurance companies mandate how much time a doctor can spend with a patient.  Depending on the practice and insurance company, that ranges from 2-5 minutes.  You have a responsibility to be as concise as possible to get the most out of your appointment.

4)    Know your illness inside and out. This is mostly applicable to those with chronic illnesses.  Doctors cover a ton of information in medical school and it’s not fair to expect them to be an expert in whatever you have just because you walk in their office.  [It is TOTALLY reasonable to expect they will work to educate themselves.]  If you’re up on the latest treatments you’ll be better able to advocate for yourself.  Along those lines, get connected with those who ARE experts (such as checking for a national foundation).

5)    Stand up for yourself. If you don’t understand something the doctor said, ask for clarification.  If you’re not happy with how you’re being treated, say so (respectfully).  Just be sure that you are clear with what the problem is and what you want to see changed.  Once in college I was really frustrated with a new cardiologist.  After a totally preventable night in the ER, I met with him and, without raising my voice, said something to the effect of “I think you’ve forgotten that I am someone’s daughter, sister, friend, and girlfriend.  I know my illness better than most doctors, and I insist that I be spoken to like an adult.  You have not kept me in the loop and that resulted in me going to the ER.  This is not acceptable.” This resulted in him yelling, “I am the doctor and you are the patient and you will do what I say!” Hey, I was able to quickly figure out that we weren’t compatible.  No more wasted time.  On the flip side, I’ve twice had problems with nurses not allowing me to talk to the doctor/not delivering messages.  Once I alerted the doctors to this (I looked up their email addresses on the university websites), they spoke with their nurses and provided me with alternate ways to reach them.  Problems solved.

6)    Finally, when all else fails, fire your doctor and move on. You are paying her and having a poor relationship with your doctor can negatively impact your health, both in terms of the stress it causes you and the wrong treatments you’re receiving/beneficial treatments you’re missing out on.

You can bet I’ll be utilizing some of these when I meet with my pain doctor again this week.  I hope I don’t need to use the last one.

Do you have other tips to share, or stories of how you’ve used some of these suggestions yourself?


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An ER Headache

This is a post that is not a particularly cheery one, so be forewarned. Part of the purpose of this blog is to document the ins and outs of Marfan, and I feel that needs complete honesty.

I’ve spent the better part of 2 of the past 4 days in the Emergency Room. Saturday morning I woke with a migraine that turned into the worst headache of my entire life. Concerned it might be a brain bleed (even the illogical becomes logical with Marfan), Mark and I dropped Menininho off with friends and headed to the ER. Several hours later we learned I’d had my first cluster headache.

The good news? According to Wikipedia, cluster headaches “may be the most severe pain known to medical science.” That means I was TOTALLY justified when I called Mom on the way to the hospital and said something to the effect of “Mommy, I’m probably dying so I just wanted to tell you I love you and Mark’s taking me to the hospital.” The bad news? They’re kinda chronic. And when I called my Marfan cardiologist, he told me I was his first Marfan patient to have them (and he has hundreds of Marfan patients). Cluster headaches aren’t directly related to Marfan, but they’re related to migraines, which people with Marfan tend to get at a higher rate than the general population.

So, knowing that I’d be going to get more cluster headaches over the next few weeks, I was anxious to get ahold of some medication. My cardiologist approved a particular drug for me that we’ll call Q. My general practitioner (GP) called in the prescription for me last night, just in time for me to get the beginnings of another cluster headache. The medication worked like a dream, except for one thing. After about a half hour, my neck began to tighten. I got dizzy and couldn’t hold my head up. I was terrified.

Mark called the hospital and, to make a long story short, it turns out I was never supposed to be taking the medication! However, neither my doctor nor the nursing staff had bothered to make me aware of the late-in-the-day change of plans.

After a fitful night of sleep, I called my doctor’s office and complained. Because the pain woke me up 2 hours early, I had PLENTY of time to summon all my righteous anger and figure out exactly what I was going to say. There was a lot of blame shifting, but I feel like the issue was resolved as well as it’s going to be. I asked when I could expect my neck to start feeling better, and the nurse said she’d call me back.

When she did, she told me I needed to go to the ER right away because my GP was concerned I was having a vertebral artery dissection, which Q has occasionally caused in patients with Marfan. A dissection is a tearing of the artery and in Marfan it’s very rare to get dissections outside of the aorta, the main artery running from the heart. Any of my Marfan readers know what kinds of thoughts run through your mind when your doctor says “dissection.” They’re life threatening. There is a moment of panic (“Is this the Big One?”) and then you go into the Zone and get done what needs to be done.

“Mark!” I called from the bedroom. “Doc thinks one of the arteries in my neck dissected. Time to head to the ER. Call a sitter while I get dressed.” And looking back, we were efficient. In a matter of minutes we’d found a sitter for the baby, gotten all of us dressed, emailed my cardiologist to let him know what was going on, packed Menininho’s diaper bag, and rushed out the door.

Despite the nurse’s assurances that I would get in for a CT quickly, I found the ER to be mostly a waiting game. It took almost an hour for a doctor to see me (who told us he didn’t think I was having a dissection), and then another hour for him to page my cardiologist. It was decided I probably wouldn’t need a CT because I wasn’t actually having symptoms of an arterial dissection. My GP was totally wrong. But, it took another 3 hours of waiting and not being allowed to eat (“just in case”) before I was sent home. And of course my cardiologist came down and advised me that if I’d just called him directly in the first place, I could have bypassed the entire ER “experience.” (Which, by the way, included a neighbor with a gunshot-wound-infected-leg and a hypothermic drunk who was prone to shouting.)

My neck still hurts.

So, I don’t write this as a woe-is-me post. Please don’t take it that way. Most of the time I view Marfan as a blessing. If I had the opportunity for God or a magician or whoever to take it away and make me totally healthy, I’d turn them down. I am happy with the person that Marfan has made me and I am grateful for the opportunities that I’ve had working with this foundation. But Marfan IS a chronic, life threatening illness and some days really do SUCK. And I think it’s important to acknowledge both the good and the bad, and then try to turn the bad into a learning opportunity.

So, to my “Marfriends” and myself:
1) Have a better emergency plan than I did (or just use the NMF’s, which is useful even to those without Marfan).
2) When possible, consider bypassing the other doctors and go straight to your cardiologist whenever there is ANY remotely cardiac issue.

And to anyone who actually read this post to the end, go buy yourself some chocolate; you deserve it!!!


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Pain(ful) Questions

I’m sitting here with a questionnaire 12 sheets thick, completely befuddled. I have a Masters degree…a Masters degree in public health, no less. I took a class on survey methods, love evaluation, used it in my culminating project for school. I really shouldn’t be stumped by a simple questionnaire about me, myself, and I.

But I am.

I would venture to say many—probably most—people with Marfan suffer from chronic pain at some point in time. I’ve had fibromyalgia for 8 years or so now but never felt inclined to do anything about it. Until I was pregnant my flair-ups were few and far between, but the first-trimester pain from fibromyalgia was far worse than my first-trimester nausea. Since then my flair-ups are more frequent and I know that as Menininho gets older I need to be as pain-free as possible to have the ability to keep up with him. One of my biggest fears is that my physical limitations will hinder him (or any future children, if we can be so lucky) in a major way.

And so, for weeks I have tried to find a doctor who would take me on as a patient. At first no department wanted me, and then neurology and the pain clinic fought over who could take my referral. Last week I received a call; the pain clinic won out.

Now I sit here, trying not to over-analyze all the questions on the New Patient Pain Management Questionnaire. How can I quantify my pain on a 1-10 scale? What is my constant level of pain? My worst pain? What’s the right answer? If I mark too high of a number I worry the doctor will try to push narcotics on me. Too low, maybe she will laugh me out of the hospital. How do I explain, in numbers, that the burning pain I feel keeps me from being active, but I soldier through what needs to get done for my son anyway, because what if he didn’t ask to be born to me?

What number represents the baseline level of pain you’d like to achieve through treatment? Well, I’d love to be pain-free, but what’s reasonable to expect?

How many times and ways can they ask me if I’m a drug addict? Because really, if I was, wouldn’t it defeat the purpose for me to confess? Do people honestly say yes?

I hope I find my doctor willing to look past these numbers and instead listen to me try to quantify the qualitative.


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