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Friday, 20 September 2013

Oh Healthy Day! Crap, No More Excuses!!

Doing great people, doing great! I am now back to working it with the best of them. Well, okay, I'm not exactly perfect, but so darn close I'm doing a happy-dance (mentally so far, but give me another hour or two). No, I'm not as manic as I might sound, just so very happy to feel like I'm alive again. I have so many reasons to feel good right now. No narcotics, no anti-nauseants, very limited pain, no more acetaminophen impairing my liver function (which in turn was lowering my blood sugar to dangerous levels - I actually considered going to the hospital one day). My brain works for the first time in a while, and I'm no longer stuck in a bed because it hurt too much to sit up in a chair. I have a bunch of reasons to be happy, actually, some of which I can't really talk about right now - some business, some personal.

What caused this fabulous change in my life? Well, I'm on the proper medication for pain. Gabapentin, the neuropathic pain reliever. Originally developed for epilepsy, but for some people it really does the trick for pain, and I happen to be one of them. The doctor tripled my dose the other day, and it's still a bit too low, but I can live with it for the time being. They also use is to reduce the need for post-operative narcotics, and in my case the elimination of them. I do not want to be on codeine and oxycodone. I don't actually get addicted to anything, so I'm not worried about that, but there is still a physical withdrawal period I can do without, on top of the fact that I'm sensitive to them and they make me throw up far too often.

Here's the thing about pain. Most people have no idea what it's like to live in constant agony. The fact that I maintained hope and the tiniest sense of humour is rather a miracle. I know people who will run off to bed with a little headache pain. Living 24/7 with pain beyond that which I dealt with during childbirth, is an entirely different story - and I gave birth without pain killers of any kind. It's not easy to smile and be happy. It's not easy to crawl out of bed and face the world. There's no question that it causes severe situational depression in most people.

The fact is, I'm a damn tough woman. I know that about myself. I've got a very high pain tolerance, and I've lived with pain for most of my life. Generally I shrug it off, but this was different. Nobody can understand what it's like to have this kind of pain, and then suddenly have it mostly lifted, unless they've lived it. It's beyond exhilarating. A good friend of mine keeps wondering why it's taken so long to deal with these issues, and though I've answered him rather obliquely, I haven't given him the full story. I've got nothing to hide - it's just a pretty long and detailed voyage I've been on. My medical file is gigantic. I lost track of the number of tests I had while they were trying to diagnose me. I've been to three orthopedic surgeons, and two or three other specialists that I can't remember what their specialty was. I've had too many x-rays to count.

I had an EMG (electromyography) where they literally jab a bunch of needles into you in various locations, and then proceed to electrocute you - that was fun - it's like having muscle spasms and then you have to actually push and flex against the spasm making it even worse. One friend of mine told me it was the worst thing she had ever felt in her life, and she's had a kid, too. The test determines nerve damage, and it's how I found out I had L5 nerve damage that had nothing to do with what was happening with my hip joints. They were also checking me for sciatica, which I knew it wasn't. I get the occasional pinch of my sciatic nerve, and I know exactly what it feels like.

EMG Needle Electrode - Inserted in each nerve and muscle area of the leg, and then you get electrocuted with it. FUN!

Then I had some weird joint mobility test where the specialist basically took my legs and/or feet and twisted my legs all over the place. I just had to lie there, looking like a spasmodic frog, and it was no more painful than usual, but I'd never even heard of a test like that before. Very strange, but it became very obvious that my leg wasn't rotating the way it was supposed to. It kept locking up like it hit a barricade or something. That was the doctor that actually pointed me in the right direction for researching what was wrong with me, telling me I needed an MRI and what the issue could potentially be. It was around that time I saw my second orthopedic surgeon who started talking about tendon issues in the front of my hip joint, but I hadn't had any MRIs on my hip joints yet, so there was little he could tell me. He was pretty sure it was my tendons, however, and discussed physiotherapy with me. I told him it was painful to walk, and here's where I discovered I was supposed to minimize walking around. I couldn't stop walking completely, but every joint movement was only going to make things worse. Apparently the physiotherapy for that tendon problem involves something that doesn't move the hip joint. However, I had my MRI after that and there was no longer anyone suggesting a problem with my tendons.

Making all of this a hell of a lot more difficult to diagnose was the fact that I had two issues going on. I had something called a dynamic coccyx (tailbone), so I could literally tell everyone I had a dynamic ass. Nobody said it had to look dynamic! With all of my pain and difficulties being located in the same general area of my body (my pelvis), it wasn't being treated as two separate issues at first. They thought everything was caused by the same thing. I knew it wasn't. I could feel the difference. Doctors will be doctors, though, and they tend to ignore everything a patient is telling them, thinking they can't possibly know their own bodies or what they're talking about. I soon had to get really firm with every one of my doctors. They needed to know I was intelligent enough, and aware of my body enough, that I could tell them a thing or two about what was going on. Maybe a lot of people don't bother to learn anything about their own anatomy, or pay attention to the signals their bodies give them, but it's disastrous to think that way.

If I hadn't been proactive in my own care, my doctors might still be trying to figure out what was going on with my injuries. It pisses me off, quite frankly, that I understood it better than they did, but that's becoming the case more and more often these days. The ability to do research is vital for anyone who has a medical issue. Doctors are so bogged down with bullshit paperwork and insurance issues that they no longer have time for professional development. They know very little about the drugs they're prescribing, they're not keeping up with the latest surgical techniques or treatments, and they know next to nothing about newly discovered illnesses or conditions. For example, my old family doctor had never heard of a dynamic or unstable coccyx. It's real, but has to be dealt with by a specialist. Still, you'd think a severe curvature of the tailbone and extraneous movement causing pain, would be something a doctor would consider as a possibility if he or she bothered to spend two minutes considering the problem. If a tailbone hurts, there are very few issues that can cause that pain. Probably only two, actually. The other being a broken tailbone.

Stand-to-sit Coccyx Positioning

Dynamic Coccyx - See the difference?

So, once my coccyx was culled from the problem, accomplished through surgical removal, we were able to concentrate on what was going on with my hip joints. Once we finally ended up ordering the MRI for my hip, this was basically the result:

And I enjoy this condition in both hip joints! W00t! (Don't make me hold up the sarcasm sign.)
As I said, it was a very long road of confusion, and it would have been even longer had I not decided to take control and do my own research. I found the site, and learned all about tailbone pain. I took my laptop in to my doctor to show him a bunch of the pages. He told me himself that he'd never heard of a dynamic coccyx. To his credit he sat down and looked at the whole thing. He listened to me when I told him what specialist I needed to see. The only delay there was when I discovered that the orthopedic surgeon he sent me to didn't do tailbone work. It's such a rare condition, and not very glamorous, so there are almost no orthopedic surgeons that perform the procedure I needed - a complete coccygectomy.

In an odd coincidence, the only doctor I'm aware of that performs the procedure in my province was actually in Burlington, Ontario, the city I happened to be living in at the time. He had patients from literally thousands of miles away (all the way from Alberta - Edmonton is about 3250 kilometers from Toronto - yes, Canada is a very large country), in no small part because he's a very gifted surgeon. He was up on all the latest techniques. He injected a pre-emptive, long-acting local anesthetic around the surgical site to prevent pain signals being initiated (once pain signals are received by the brain they're very hard to shut off). He also explained that he kept an extra length of bone membrane (a thin skin that covers our bones) and stitched it over the raw bone he sawed through (the raw bone being a part of my spine). It speeds healing of both the bone and membrane, because the membrane doesn't have to regrow and then heal - it's just the incision part that has to heal.

I was really impressed, because this surgeon had to be closing in on 90 years old. I'm not a great judge of age, but I kept wondering why the hell he hadn't retired 20 years ago to enjoy his remaining years. Instead of retiring or becoming a relic, though, he totally kept up with all the new information - things I had researched and planned to ask him about (like the local anesthetic that cut several days off my recovery time), he was well aware of and used the techniques with every one of his surgeries. The guy is an amazing doctor and surgeon. A little gruff in his bedside manner, but I didn't give a crap if he knew his stuff, and he really did. I found out on one of my visits to him that he hadn't retired because there was no one else doing that surgery. In other words, he was worried about his patients. Good man.

I only had to see him two or three times before my surgery. I can't really remember. He had to send me for a lumbar MRI, however, to be sure my pain wasn't coming from my back. Of course, it turned out that wasn't the cause at all, but I had disk scarring I was unaware of. Go figure. I mentioned the L5 nerve damage, and he said it was possible they were related because it was in the same general area. The funny thing is, he knew the second he looked at my x-ray that he was going to be removing my tailbone. My family doctor looked at it and saw nothing wrong. Generally they have to do a sitting/standing series to determine the severity of the curvature. In my case, lying on the x-rays table with no pressure on my tailbone, the curvature was already huge. When I looked at the x-rays on my laptop, even I could see there was something seriously wrong there. I began to wonder about my family doctor's eyesight.

After my surgery I had to recover. I couldn't really walk around too much, and wasn't allowed to sit for a month. Full recovery took about 6 months, I think, but I could be remembering that wrong. One of my friends asked me what I sit on if I don't have a tailbone, and the truth is I sit on the base of my spine. My position doesn't look any different, but if I put my hand over it, it feels really strange - there's no gradual tapering to the bone there anymore. ("Did she just grab her ass?" Why yes, I just might have.)

So, that was a huge delay to dealing with my hip joint issues, to say the least. I finally had MRI confirmation just over a year ago regarding the tearing. I was booked to see the orthopedic surgeon who did my tailbone, but had to cancel because I moved to a new city. I couldn't continue the process with him, which was more than a little frustrating. Especially since it meant I was looking for a new family doctor, and they're in rather short supply up here. There were only 5 of them accepting new patients in Hamilton (a city with about half a million people). I couldn't afford to travel back and forth to Burlington on the bus, and certainly not in a cab, and I no longer have a car. I had no choice but to change doctors. There's a ridiculous application process for a lot of family doctors here, too. One more obstacle for people who have a hard time getting to a doctor's office in the first place.

Now, of course, I can't even take the bus to my family doctor. The routes are funky, and I have to take two separate buses for a relatively short trip. Thus making me feel like a lazy idiot for getting on just to go a few stops - twice. Instead I walk, something that causes me further damage every time. Not to mention a lot of pain. So, with every visit to my doctor being more than a little inconvenient, I will often put off going for a week or two. I know it delays the day I'll have my next surgery, but there's a limit to my endurance and pain tolerance. I can only move as fast as I'm going, basically. Being temporarily hindered means it takes longer to become unhindered. Just one of those painful lessons we learn in life. I think I moved three times, too, so that certainly caused some delays.However, just being able to live a semi-normal life definitely has its benefits.

Well, I've managed to gradate to doing a happy-dance in my chair this morning, so I think I'll commence my own intimate little party. As one of my friends says when she's happy, "Squeeeeeeeee!!"