Denial of Deformity

[jrnyc]

yeah, i know...i dont talk about it with anyone but immediate family...my brother in law saw it cause he was helping make the disc!
he said "now i know why you walk bent over!"

jess

[ADMoul]

I was in denial about it for most of my life. My father had a severe thoracic curve as a result of childhood polio and never let it interfere with his life. His quote was "Never let anyone fuse your spine." (He passed away several years ago and if he could see how happy I am since my surgery, I'm sure he would understand my decision.)
I just kept wearing clothes to cover up, buying bigger bras to accommodate the gradually increasing rib hump and never discussed it with anyone until I started dealing with chronic pain in the last few years. I think denial is a big part of this whole syndrome. Our society is so focused on perfect bodies and outward appearance and there is such a taboo about admitting imperfection. I was always terrified of this surgery, but by the end of last summer, I knew I wanted a better quality of life. Like anything that you get out in the open after years of keeping it buried, there is an almost euphoric feeling of relief and release. I read a quote somewhere--"What would you do in your life if you weren't afraid?" Kind of sums up the whole process for me. I faced what was one of my biggest fears and came out on the other side with a much better life and am so much happier!

[jrnyc]

hi Anne
what a great saying..."what would you do if you werent afraid..."

someone i used to work with in NY once said "never let them fuse you"...i said "why would i...how would that help?"...that was about 6 years ago...i think she had a fusion in cervical area...i know she couldnt turn her head ...her neck was frozen...

am so glad that your surgery was successful...even with those complications that were so scary...the results seem like it was all worth it...i hope you feel better every day!

jess

[Back-out]

hi Anne
what a great saying..."what would you do if you werent afraid..."

... she had a fusion in cervical area...i know she couldnt turn her head ...her neck was frozen...
jess

Yet another reminder (as if I needed one) about how GLAD I am that I didn't acceot prevailing medical opinion five years ago and have a cervical double fusion for severe cervical stenosis. They (three neursurgeons and a neurologist) thought I was nuts to investigate a then-controversial minimally invasive decompression instead. Taking the time to think about it, when they all said it was a medical emergency was already enough for them to think it was time for the butterfly nets!

I WAS scared but when I found one of the world's greatest M.I. neurosurgeons was almost in my backyard (Pittsburgh), I investigated carefully and found a tie-breaker surgeon at Johns Hopkins. He gave me the go-ahead for the surgery and surgeon.

Not quite a tie-breaker as it was still four against one, but that was enough because of what he said. If I hadn't gone with my surgeon, Dr. Jho, in 2007, now I'd be looking at a fusion all the way from C3 to the pelvis instead on "only" T4 down!. The irony is, I wasn't even thinking of a major deformity surgery back then - just for an easier recovery, less loss of mobility and less surgical risk. Also, above all, to keep my options open (i.e., you can always have a fusion later if a simple decompression doesn't work, but you can't go the other way)!

Every time I (easily) pivot my head left to check traffic behind me, I think of Dr. Jho and how important it is to think for yourself in investigating surgery. If I'd regretted following their advice, who would have apologized or cared? Only ME! Now, for a much more important procedure, I'm trying to follow the same principles. Unfortunately, the issues are much more complex, and I'm not finding a handy nearby surgeon either...

Still, it's MY body and who cares as much as me? I have to persevere and think independently - as much as I can, anyhow...Sometimes I admit, I want to just flip a coin when I feel overwhelmed.

[Confusedmom]

[QUOTE=foofer;102085]

Boachie me to come back in a year since I was highly functional and pain was not stopping me from living my life. He used the example of someone with a pain level of 6 having surgery and then being a 2 postsurgical - they would feel pretty good about things, but if someone was a 3 presurgical and a 2 postsurgical they might not be so happy.

Amy,

Thanks so much for going into more depth about this--it was interesting to hear all the follow-up on pain assessment as well. You are right, I am younger and I also have much greater rotation, so I guess those must be the differences. But what Boachie told you above (the "3" pain) is me to a T. I think this is also what Linda was talking about on a different thread when she said adults with little pain tend to have the worst outcomes--meaning they have more regrets about the surgery, at least initially.

However, I was thinking about what all of you said about functioning
through/denying/avoiding the pain, and I do think I've learned over the years how to minimize pain: don't stand too long, don't lift heavy things, take breaks in the day, foot on a stool when washing dishes, etc. So, maybe if I behaved like a "straight" person and did all of these things, my pain would actually be greater. Food for thought--thanks.

Evelyn