It's been several years since I've checked in with this forum. Looks like things have changed a bit, new website and all. Nice.
I used to be relatively active on the old website, after my surgery in
'97. Life got busy with two kids and I really hadn't felt the need to check back in. Well, that's not entirely true, I suppose what drove me off was that the old website had become more of an emotional support group, rather than a nuts & bolts physiological/neurological/operative procedure info clearinghouse type of website. Not that the emotional support isn't important. It's just that the touchy feely personal stuff is.........well, personal. It just wasn't my style and I wasn't getting a great deal from a lot of it. When folks started talking about getting Oprah involved (true), I threw up my hands. Still, if that's your cup, have at it.
Something, that's given me lots of problems, after the schwannoma surgery, is adhesive arachnoiditis (AA). I'm sure plenty of you know what it is. It's just funny when you get a new nurse at the doctor's office that thinks it has something to do with spiders.
I hadn't really thought about how comparatively bad it was, until a loaded seven foot server cabinet fell off of a truck and crushed my right knee. Yeah, a computer server cabinet. The 19" rack format variety. When the docs asked how it happened, I told them I had a data processing accident. My server crashed on me.
You would have had to have been there.
Anyway, from the way it felt, I thought at first that it wasn't too bad, except for that bothersome POP sound. Looked ugly, but didn't hurt bad so my "gentle bride" drove me down to emergency room. The docs looked me over and figured I just had some bruising. All this time, I was telling them it really doesn't hurt much, but there's still that POP. They shot some xrays and came back with a completely different diagnosis. Apparently, the knee and bones below it were pretty badly shattered. Pulverized actually, in places. Fortunately, the ligaments and cartilage were in comparatively better shape. All I needed was an immobilizer, crutches and time to heal it all up.
What's significant, about this seemingly unrelated accident, is that the pain I experienced was much less than the AA pain I dealt with every day. When the ER doctor marveled at my tolerance for such a gruesome injury, I lectured him (forgivable as I used to do it for a living). I pointed out that folks with AA weren't too terribly uncommon, and when one showed up at the hospital complaining of pain he maybe oughta' treat them with a little respect. Folks with advanced AA are experts at this pain stuff and he ought to prick his ears up a little in the future. Didn't need to take any other pain meds after the accident, but then I'd kind of gotten used to pain so it wasn't anything new. Well, that point's beaten to death, but you catch my drift.
Anyway, I have a real aversion to all things opiate. After the AA got progressively worse I started using more and more Neurontin, then Lyrica and then Cymbalta to sleep. Lots of that stuff, because I really wasn't interested in going the oral opiate, or (shudder) infusion pump route. Might use that later if I really, really have to. I put off the decision long enough that technology of the spinal stimulator improved significantly. I had the permanent one put in four months ago. It has really helped and I've weaned myself off of all the meds as of four weeks ago. Titrating off of Cymbalta was far worse, in my opinion, than the implant. CRANKY!!, but much better now, thank you.
The doc asked what level of pain I had after things healed up a bit. I had to tell him zero. I mean, there's still plenty of neural "deadness", odd sensations etc. from the waist down. But pain like I used to have, no. Not braggin' just sayin'.
So if things aren't working out well with your current treatment, keep asking around. Treatments get better. Just keep going back to the waterhole and your liable to be able to take advantage of improved (or new) technology. You're not always stuck with the answers that were available after your first surgery. My pain doc said the stimulator technology wasn't so hot even five years ago (which is just about the last time I'd asked about it).
With the forgoing in mind, I'm a little uneasy with this "survivor" terminology (seems like it's new since I went away). I mean, we all cheat death for our whole lives, until the day we.......don't. There are more than a few of us that have had tumors that weren't, or are not, life threatening. I don't really feel like I qualify for the title of "survivor". It's not like it came close to killing me (but that's just my tumor). I realize there are plenty of others that can and will do you in rather quickly.
My point is, there are plenty of different tumors and locations, with plenty of different outcomes. Some leave you permanently dinged up, but you get up, drink your coffee, take your meds and "mount up" every morning. You do this for as long as God and your doctors can keep you going. I think that's true for all of us. Anyway, I'm sure I've hacked some folks off, which wasn't my intent, but the seemingly universal reference to the "survivor" terminology, I always felt was a bit broad.
Unless your variety of spinal tumor is REALLY bad, most of us have a lot better probability of getting wiped out by diabetes, cardiac problems, strokes, inactivity, or just wearing out. The final outcome is the same, so I think the emphasis on life, family, and the general human experience (albeit a disability prone version) is a good deal more proactive than that looming survivor moniker.
Now if you still want to talk survivor stuff, let me tell you about raising my kids!!!