Spontaneous improvement?

[mmglobal]

Those of you that have followed my case know that for the past 2.5 years, I've been dealing with chronic t-spine pain. I've had successful diagnostic injections that seemed to identify painful costovertebral joints. (where the rib head joins the vertebrae) I have had the nerve ablations that were indicated by the injections with no help. My last set of injections were in July and they were very dramatically positive. Unfortunately, the trip home from Europe undid all of the benefit of the injections was undone and I’ve been way worse since then. From July to March was awful.

It has been very discouraging. I’m headed back to Europe soon, but don’t know if I’ll be following through with the more aggressive ablations. About 3 weeks ago… Friday night was a typical HORRIBLE evening. Saturday morning, I woke up and walked into the bathroom. I felt soooo much better. Not just lower pain levels, but I actually felt good! I still had bouts of pain, but overall, I was much improved for over a week. Then, I had a setback, but did not get to be anywhere nearly as bad is it had been before the spontaneous improvement. Since then, I’ve been up and down, but still way better than I have been in so many months.

If I’m still trending better, I will not have the more aggressive ablations that are the next likely step. There is a very high risk of getting a permanent band of numbness that wraps around my chest. I experienced this on a temporary basis after the first round of ablations and it is not pleasant. I’ll be happy to risk it, but only if the good trend stops.

I’m posting this not only because I’m way overdue for updating the community, but because I want to start a discussion about spontaneous improvement. I’ve seen many people through the years who are severely disabled for years and years. Many of them have improvement kind of sneak up on them. They suddenly realize that they have experienced very surprising, substantial improvement. In most instances of this that I’ve seen, the patients don’t get to be great… but they get to be so much more functional then they ever thought they would be.

We get to a place where our problems cannot be addressed by the medical community and we are resigned to a life in pain. Because the source of this pain seems to be observable mechanical problems, we believe that it will only get worse and we have no hope. In some cases, the improvement comes when irritated mobile tissues become immobilized. (Auto fusion?) In other cases, it may occur because we get better at managing our pain and disability and are simply coping better, even though our pain is not improved. I’m sure that there are many different reasons for this and that there may be some cases that will never be understood.

Anyone have this occur or know anyone who has been to the edge of total disability, then unexpectedly get much better?

Mark

[jsewell]

Mark,
I have not had this happen to me , but i still have time.

But i am so happy for you. I was wondering when you started posting more in the last few days if you were feeling better .

I hope it continues for you .
judy

[jsewell]

Mark,
I am just so happy for you.

[Maria]

Hey Mark,
Hope this trend holds up for you! it sort of describes what happened to me in the since around 2005/2006... I mean I've not even had a flareup of any significant nature in a while and when I do a shot of Toradol 60mg IM really straightens me right out! Of course I still take the same 10mg of Metadone/day tho that's it. Now when I sit I might get a backache tho I get no neuropathies in my legs, no pain in buttocks just the low back pain which seems to be alleviated by standing up and walking around generally unless I do something stupid like go move some furniture when back is bothering me.

I know I was surprised at how much better I've gotten and while it didn't just sneak up on me over the years I noted a pattern to my flareups, recoveries and then they just spanned out further and further apart and less and less intense.

So I feel like I've been doing signficantly better~ and I hope you will too. I know that when I started to feel this way back when the 3rd surgery was being recommended and I was on that route for more surgery I just couldn't put myself back into a questionable mode re would I improve or would I be worse w/more surgery. So far I've been happy with my decision even when I read about others who have had great success w/ADR and hybrid surgery.

Hey does this mean you're up for hanging out a bit? Can meet you at the beach (before I have toe surgery and move!) I hope Judy's doing well post surgery and maybe can meet too?

[mmglobal]

Actually Maria, it means that I'm headed back to Europe. I did a brief trip to SF about 6 weeks ago to test the waters. That went OK in spite of the fact that I was not as good then as I am now. If you are still around in mid-April... we can do a dog beach run. Judy should be up for that. I'll bet I can get Hillary and Gary... hopefully more local patients. I wonder if we can catch Paulette and her daughter down this way?

Pick a date! (>4/12)

Mark

[jsewell]

I would love to meet mid april. I have not been there in so long and was just looking at some winter pics of a trip to the dog beach., Just as long as it is not April 9th when i should be in court for the temporary support .

Glad you feel ready to travel Mark
ARe there any ways to get good deals to Germany? I generally see the air fare at just under $1000. I would love to visit , but also i know i would love to get a ticket for my daughter in law to be.
judy

[Maria]

Mark re feeling well enough to go to Europe! Yay!!! So glad to hear you're doing that well again!

Re getting together in mid April.. will see as was planning to have my toe surgeries before moving from this apt. to the new place tho at this point I'm not scheduling anything yet as I'm still packing.

I hope to have a spontaneous recovery of a neck pain I just gave myself yesterday doing ???

Back is holding up fine with this packing and such tho not sure what in heck I did re my neck.. I mean I can name a bunch of bad moves tho not sure which one or ones did it to right side of my neck.. having trouble turning my head to left.

Oh well whatever! Will see how everything goes w/packing/surgery/moving schedule!**** edit to add later Sunday and my neck is feeling much better!! Whoohooo!!!

[Maria]

A bike w/o back pain!!! I'm so excited! A few years ago I still couldn't ride much w/o getting low back pain and burning in my legs and now~ it's amazing!!!! I'm in heaven! Love riding... love it! And yeah I do have that springy thing on my seat and it's a Giant 21 speed males bike city bike. GREAT! Switched and rode my friends Townie 21 speed yesterday for a bit w/a really comfortable light weight seat. Wow that thing was so lightweight! Incredible!!!

ooooohhhh booyyyyyyyyyy! Well this is flat terrain here so that's probably why I'm ok. I did feel the bumps on one street here w/o a bike path and got off it pretty quickly. It had been repaved tho felt better before they did that.

*** adding that yesterday I rode for an hour straight and rode on "bumpy" newly paved street that bothered me several days before w/o any prob. I had saddle numbness when getting off the bike after an hour tho no pain. No pain that evening and no pain the next day! Wow! Am I better? I sure feel like it. The funny thing is that a few months ago my back ached so bad upon rising for at least an hour or two and when I got into bed. Like arthritic pain ya know? Not the failed back surgery pain. Still enough to make me feel like I was "up there" in years!

I was looking at a CT scan of '06 that showed a disc bulge at L4 of 4mm I believe and L5S1 of 2mm. The L4 disc bulge was abutting the nerve. Just about a year ago my Ortho told me after seeing my most recent low back xray that he thought I had autofused at L5S1. I'd love to hear that's the case w/L4 too and hence the alleviation of pain. That would great. I like the whole idea of letting my body take care of itself if that is possible and when it's not hopefully surgical intervention only then. That'd be ideal should that be possible. If not I'll be like my 71 y.o. friend that I visited today in the Rehab institute in Long Beach after her decompression laminectomy and fusion spine surgery. She's doing so much better!!! Yay!!!! I hope that would my story in the future if I have to have more spine surgery.