How our symptoms change?

[mmglobal]

Those who know my story know that for years I was 100% low back pain and 0% leg and foot pain. In the year before my surgery (now 4.5 years ago), I had become 50% LBP and 50% foot pain. My foot pain had become as disabling as my LBP, my gait was altered and I often tripped over my left foot. When I went for my surgery, I thought I was going for the LBP pain and that my foot pain was due to already permanent nerve damage.

I was pleasantly surprised when my gait immediately returned to normal and my foot pain and numbness was reduced by 95%. What had been disabling was now just a minor annoyance. After my surgery, I immediately got off the opiates, neurontin, anti-depressants... all with little trouble. However, whenever I tried to stop the anti-inflammatories, my foot would hurt a little more and the numb spot on the bottom of my foot would get a little bigger.

I've been in good enough shape that I could forget to take the NSAIDs for a day or two, but I would always notice it after a couple of days. "Damn, my foot is hurting more, I hope I forgot to take the anti-inflammatories". I was always relieved to discover that I had forgotten them. So most of the 4.5 years since my surgery, I've taken Voltaren. (Bextra was the best, but it went off the market with the other NSAIDS when the heart-attack issue surfaced.)

In the past few months, I've seriously cut back on the Voltaren and have mostly stopped it. I'll go for weeks at a time without taking it and when my activity level gets high, I'll take it for a day or two. (Standing in the OR wearing lead aprons for hours is the worst.)

The reason I'm posting now is that I recently realized that I'm not taking Voltaren at all now and my foot is better than it has ever been since before the surgery. It still has some minor issues, but it's at such a low level, I feel stupid talking about it. However, this is interesting. Maria is in a period of remission. Others I know are feeling better than they have in years. Our issues are such a moving target with so many variables, it's tough to say why we have our setbacks or good periods.

All I know is that it seems that when we think that our symptoms are stable.. when we think we know everything about our issues... our bodies surprise us. I know people who were sure their surgeries were failed at 9 months post-op, only to have an amazing turn around at 10 months. I've seen another patient with a similar recovery at almost 2 years.

Spine is too complex... I wish that none of us lived in this spiney world that occupies too much of our time... but here we are. For many of us our diagnosis and path is an impossible task. For others we seem like a slam dunk. Most of the slam dunks go on to success, however, we know too many that don't.

OK... that's enough of my disjointed ramble. Anyone else out there with unexpected or unexplained changes in their symptoms?

Mark

[fortitudine]

Hi Mark,

Our son had the misfortune last summer to have had a serious injury to his brachial plexus, which is essentially the nerve group that regulates the sensation and movement in the upper half of the body(c3-t1). BUT it has had its benefits in that I have learned a ton about nerves...

My guess is that the nerve (s) to your foot were damaged during your period of agony. Gradual impingement, probably, with compression of part of the nerve. Even after the cause of injury has been removed, the nerve continues suffering, although hopefully it starts to recover. Nerves take FOREVER to regenerate - they say an inch a month - so, voila - after a time, your nerve finally and fully regenerated.

That is how it happens in brachial plexus injuries. It looks like nothing is happening for months, and then, all of a sudden, there is a flicker of movement, and it builds slowly from there.

[Maria]

edited as necessary

[chasswen]

i had no back pain as of 3 or 4 months before my surgery as the discs were starting to fuse. which would have been ok but i still had alot of trouble with my legs due to no space for the nerve roots. hence sought surgery with dr b to restore disc height and fix the instablable.
chuck

[become]

Well, since you ask, Mark (nice site, btw).

I haven't been around at all because I had 4 completely pain-free months through the fall--and active, too, hiking 7-8 hours in the mountains almost every weekend. Going to films without being concerned about what would happen, etc. All stuff that I never imagined, or even hoped, to be able to do again.

Whether that was because of the injection I had a year ago or the huge quantities of supplements I started taking when that seemed a clear failure, or just time, I don't know.

Anyway, I felt so good I decided to take up Tai Chi to work on flexibility, which also felt very good--for about about a month. Then disaster hit. So now I'm back researching new developments. And being down again is a lot harder emotionally after having the chance to remind myself what life could, and should, be like...

If there's a 'moral' to this story, it would be that you shouldn't fool yourself into thinking that your back is normal, even if you feel great.

[Maria]

Yesterday I was semi sitting quite a bit to try and work on CEU's for RN,NP license as I keep it active even if it's been 7 years since I worked. Am hoping surgery would allow me to return to work.

Anyway, back to symtpoms, sat too much and today I'm in agonizing pain walking the dog~ tailbone pain is really bad, as is low back. Have bunches of errands to run so will take my usual dose of Methadone and hope for the best.

Perhaps my withdrawl pain is creeping up or popping in on me~ whatever it is, it's what has had me convinced that my back isn't truly better but just in a short type of remission for whatever reason.

Maybe so I got to enjoy life a bit before biting the bullet...

[Hucky :)]

I too have been in remission. I noticed last August that sometimes, I had missed my dose of Neurontin, sometimes by up to 4 hours. I then decided to try going off the drug altogether, so, in a six week period, I titrated myself off completely.

Like Maria, I do flare up, which is very much activity oriented, BUT, I seem to recover a lot more quickly than I ever did before.

It is Summer here in Australia and my nerve pain always was better in the Summer, so I'm holding my breath and hoping that I won't have to go back on it for Winter.

I haven't had a recent MRI, but I can only presume that the C6/7 nerve root is not being compressed anymore.

Unfortunately, I seem to be having more problems with my L5/S1 than I did before. Nothing too debilitating, just frustrating. The pain level doesn't even come near to what I experienced with my C6/7. I find that taking Neurofen plus seems to help with this.

It is odd the way pain ebbs and flows.

Hucky

[mmglobal]

Originally Posted by become

If there's a 'moral' to this story, it would be that you shouldn't fool yourself into thinking that your back is normal, even if you feel great.

Nicely said, Bruce... Thanks for joining us.

While some people experience periods of living normal lives, for many of us, remission means that we live in less pain that we used to experience. Some activities that used to be taboo are now OK. But what I frequently see (and have experienced personally, when we talk about being 'normal' again, we are still mostly disabled. We still limit our activites severely. We still live in fear of that movement, slip, lift, turn or whatever is going to put is back into spinal hell. We know it's coming.

If you were 80% disabled and you feel better and move to 50% disabled.... that starts to seem a lot like being normal. However, 50% disabled is still substantially disabled. Some patients have made a serious mistake in undergoing a risky surgery because they won't accept minor pain and minor disablity... they think that they can go do the big surgery and just be normal. I've also seen many patient who accept the most unbelievable disability levels, even though they are excellent candidates for surgery.

This is beginning to sound like that 'am I bad enough for surgery' discussion. Enough rambling... Thanks everyone... nice discussion.

Mark

[Maria]

edited as necessary