Nobody Knows Anything...

 ...you really have to look after yourself.

Let's start with my chiropractor (although I have several instances of all sorts of doctors not knowing what they're doing, in terms of what I need...) 

I needed a new back brace. The old one I currently have is not great, but only because the velcro has worn out. It's a brace I got at CVS some years ago. Chiropractor tells me to get a new one. But CVS doesn't have the one I got before as a new model. I don't know what to get. So chiropractor does her own research and tells me her opinion on another brace from some online company. 

Fine. I'll get that.

I don't like it. I think my chiropractor likes it because she thinks it will sit lower on my hips. But it really doesn't. it actually sits higher. So much so that the bottom edge of the brace actually rests at exactly where my "point of spina bifida" lies. Meaning it lies at where my spine was closed when I was a newborn. Which is a very sensitive spot. So it aggravates my initial operation spot. And I hate it. No good at all.

Doctors don't know everything.

In preparation for this post I ran through my memory of all the times doctors advised me to do something, only for that advice to mean nothing to me, or actually ended up being bad advice. I have 11 instances of such times. I'm sure I'm forgetting many others as well. 

The earliest example I can think of (as an adult dealing with my own care) was when I went to the doctor (not my primary, but whomever was in office at the time) with crazy symptoms, and I was promptly admitted to the hospital because "maybe its spinal meningitis" So, to be safe, they admitted me.

Turns out I just had mono.

I guess it was good they were being cautious? But - man! I just had mono. Send me home and to sleep, why doncha!

Back to my chiropractor... I'm just... I don't know. I've known her for about 20 years now. She thinks we're more friendly than I really consider us to be. I've started and stopped chiropractic care with her several times over the years. She did get me through pregnancy, so that's something. 

But right now, with my current situation (and she is fully aware of my current situation) there are, I believe, 3 or 4 major things wrong with my spine right now. And she has admitted that she can't adjust me as she would a "normal" person to solve at least one of these problems, because my spine doesn't even have vertebrae to adjust at the location that needs adjusting! So - what exactly is she doing? I don't know.

And she really wants me to try laser therapy, which is something she offers. It's a slow process... and it may make things actually feel worse before they start to get better... maybe... but it's something to try.

No freakin' thank you. I've tried laser therapy with her before, also at my lower back level. And it seemed to put me in more pain than I started with. And so what did I do at the time? I slowly slinked away into the night, never to be heard from again (until there I was, when I started up with her again this past March.) 

Anyway, I'm not about to do laser therapy with her again right now. It made my pain worse, and I quite frankly can't get any worse right now. I wouldn't be able to take it. And even if it ultimately helps, it's a slow process. I need as fast a fix as possible, which this nerve stimulator would be. But... it's just not happening fast enough. I called yesterday to see if there's any update on when my procedure will happen. Nope. No update. Don't call us, we'll call you. Great. Yippee. Keep on keeping' on. 

As for the last appointment I had with this pain and spine doc who will perform the nerve stimulator procedure... just previous to this appointment, I had an MRI of my thoracic spine. Mid spine. At the appointment, doc asks me if I'm aware that I have (he used the correct scientific term) fluid in my spine. Uh, no. I've since investigated that this is Syringomyelia, which is a condition that can cause increasing pain and deterioration of the spine. Awesome. Anyway, he didn't seem all that concerned about this, and assumed I've "probably" had this all along, and it wasn't going to disrupt what he had to do for the nerve stimuator procedure anyway, so it's all good. But...wait, what?! What the heck! I don't know! Maybe this is a new occurance for me and something important to be aware of. I honestly don't know. I've since tried to look at notes on my past MRIs over the last several years and, no, I don't think I see any evidence of this phenomena before. But, you know, it's all crazy doctor speech that I can't really understand anyway. My point being - maybe fluid in my spine is a relatively new occurrence, but since I'm not sure, my current pain and spine doc is just assuming it's always been there and he's okay with thinking that, but... IT'S NOT COOL TO ASSUME, GUYS!!!! GAH!

So many other times docs have lead me astray...

Let me just say that most primary docs I've ever had haven't had a clue about spina bifida. So they've always erred on the cautious site. Good... but super annoying...

I have always tended to get a ton of UTI's. It's just the way it is for me. And it makes sense, given that I self cath myself. Germs invade. Bacteria collects. UTI's happen. But docs in the past for me have become really concerned that I'm getting too many infections, and have sent me for major testing to figure it all out.

There's nothing to figure out, guys. It's just the way it is.

Another example: when I was pregnant with Sweetie... all was going super well. My OB/GYN admittedly didn't have experience with any other mom with spina bifida, but she was great and happy to work with me and educate herself as we went along. All was well... until she went out on her own maternity leave, and I was left with whomever. I was promptly scheduled an appointment with the anesthesiology team, presumably to see how they were going to handle my labor pains, since I already figured I couldn't have an epidural. Instead, that appointment (at 8 months pregnant, or so) turned in to the local anesthesiology team telling me I actually couldn't come to the local hospital to deliver, as I'd planned to all along, because they said I needed a "tertiary hospital" (which they actually were!) since they couldn't handle any unexpected emergencies that I may present, but a tertiary hospital could. Huh. Interesting. So, at almost full term, I was sent to another hospital, about 1 1/2 hours away, up north, in the winter, because they were better informed to deliver my baby than the local hospital was. 

In the end, I'm not complaining. They were very well informed where I delivered, very experienced with my "type" and my experience all around was great. Couldn't have been better.

And I got my freakin' epidural, thank you very much.

Still. It would have been nice to have my delivery plan in place from the get go, instead of switched on me in the 11th hour because the docs were finally admitting they didn't know how to effectively help me.

Another ill informed medical professional experience... I once got new leg braces because I expressed (as an adult) that I wished I could sometimes wear high heels if I wanted. So - he made me crazy braces that technically would have allowed for this... but I absolutely hated these braces, they didn't help me at all, and I ended up going to get my tried and true style shortly thereafter. Sure, it would have been nice to have the option to wear different heights of heel. But I'd so much more like for an educated brace maker to tell me why it's really best for me to stick with the style I have. Ultimately, that's what I got. But I had to endure crazy "I'll do whatever you want" guy first.

An let's not forget... about 2 1/2 years ago I was referred by my PCP (who, awesomely, actually does have a great knowledge of spina bifida and has been a wonderful resource for me) to a neurosurgeon up north (at the same hospital Sweetie was born at) to investigate and resolve my increasing back pain. Long story short... yes, it was found that I have a tethered spinal cord, which absolutely could be the cause of my pain (just like it was about 20 years prior). But that surgery 20 years prior, while resolving my pain, resulted in much weakened abilities. Prior to that surgery, I only needed my leg braces to get around. Ever since that surgery, I've also needed a walking stick to aid in my mobility. It's a risky surgery. And one I'm not excited to repeat, if I don't have to. Anyway... it was also discovered, at this same time, that my shunt had malfunctioned. And the neurosurgeon (who was a pediatric neurosurgeon, because heaven forbid there actually be a decent amount of docs who can intelligently manage and treat adult spina bifida patients) reasoned that that, too, could be causing me pain in my back, as spinal fluid was building up at the point of my original spine closer. Fixing my shunt functionality, he reasoned, would theoretically take the fluid pressure off my spine and ease my pain. And it wasn't a risky surgery at all.

So - that's the surgery I went with. Heck, my shunt had clearly malfunctioned, for who knows how long, as evidenced by MRIs showing a great build up of spinal fluid in my brain. I HAD to have this corrected, and it may fix my back pain as well...

Well... 2 1/2 years later and my back pain is worse than every, getting worse every day, it seems, and... ever since I came out of that surgery, my head has felt "stuffy" and "full" and I've had non stop, constant ringing in my ears.

Yippy freakin' yay. Yep, came out of that one worse than I went in. Awesome. And what has that doctor said (that doctor who has now moved away to a hospital in Texas) - The stuffiness and ringing "should" get better with time, as I get more and more post op. And also? You know, you're just aging. Things hurt. It's just the way it is. There's not a lot of history with aging spina bifida patients to know what's really going on for them and how to fix.

Awesome.

You know? All of the docs I've every dealt with have been super nice. I've really liked them, personally speaking. But, boy, have they not known what to do for me, health wise.

And all this time, I've been trying. I've been learning. How to self advocate. How to make my own best decisions. But at a certain point... you go to doctors because they are supposed to know what's what. They are supposed to guide you towards best answers. They are the experts in their fields. And so you learn to trust them. You want to trust them. You take their advise, even while investigating yourself and trying to figure out the best for yourself. 

The best answer I'd wish for is that all doctors thoroughly investigate their patients' portfolios and understand, to the best of their knowledge, their patients' full medical history and medical needs. What have their patients' tried before? What has worked? What hasn't? What are their patients' "norm"? And then - go from there with a plan best laid out for success.

But, of course, that's a heck of a lot to ask. Doctors have a lot of patients. They can't possibly keep 100% on track with what every one of them needs all the time. I reasonably know this, and appreciate it. I get it.

But - gosh! - I'm not the doctor. I go to see the doctors. And I want good, useful advice. Not best guesses. I want real answers. And I expect docs to have them.

But I have to always remind myself... I once read, not all that long ago, that med students get about 1 small paragraph worth of textbook info on what spina bifida is all about in their studies. That's it. So....

I'm the best go-to for answers on what's best for me. It's a shame, but I guess it's true. 

I'm learning. I keep trying. I've got to be my own best advocate. I'm the one with pains and problems and questions... I've got to keep fighting for my own best answers. 

Cuz nobody knows anything. 

But I know myself.