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golfnut
06-21-2010, 09:40 PM
I just was thinking about this forum and how helpful it has been for me to realize that I am not the only one . . . I've known about my scoliosis since high school, but never mentioned it to even my best friends in high school, college, and the past 28 years since then. In retrospect, I guess I was embarassed to have a deformity and certainly hoped that no one noticed it. I usually had to have one pant leg hemmed shorter than the other. When I went to Dr. Lenke 6 years ago, I was asked to fill out a questionaire about adult deformity. I took it home and threw it away because I couldn't accept that I had a deformity. Occasionally, someone would ask me if my back was bothering me (obviously because of the way I walked) I would respond, "No, it's fine." My husband rarely mentioned my back because he knew it made me feel uncomfortable. After he noticed my rib hump increasing, I decided to go back to Dr. Lenke after not seeing him for 4 years. Now that I have the surgery scheduled, I tell people that I have had scolioisis since I was a teenager and am willing to talk about it-quite a change for me! Very few have been surprised that I will be having surgery since they all could see that something was wrong. Am I the only one that has been in denial for so many years?

Pooka1
06-21-2010, 10:02 PM
Stories like this make me relieved that my teenage twins were able to get great cosmetic corrections in addition to halting progression. It scares me to think how different their lives would be absent this surgery. They are sailing through high school without any regard for their backs.

What's a psyche worth? What price can you put on self confidence in a teenager? Its really priceless. You only go around once. We could all get hit by a bus tomorrow. Well not all of us because that would strain the odds but I hope you get my point. :)

Good luck with your surgery.

titaniumed
06-21-2010, 11:13 PM
Hi Karen

I was in denial for a very short time. It was during the "shock" phase that happens right after diagnosis. I learned to accept it while young. I think that having a best friend in high school with phocomelia, might have changed my thoughts...Jim taught me how to evaluate my true friends, and how to accept my deformity with dignity.

Since he had a deformed leg, he had wooden legs. At the beach, in front of all the girls, he would pop that sucker off, and hop on one leg to get to the ocean. I guess if he could do that, I could take my shirt off, right?

I know its harder for the girls, but no, I never denied my scoliosis. Yes, I was fortunate to have had him as a friend. He became a psychoanalyst for the state of NJ. He is an expert in this field.

Here is an example of phocomelia.
http://www.youtube.com/watch?v=mqgTdVuGrAQ

I never hid my scoliosis from anybody. I have always been willing to talk about it. We all have our problems, its just best to be completely open about it and do the best you can with what you have and have a blast doing it!
Ed

osumike
06-21-2010, 11:33 PM
Yes, I was the same way basically until I found this site. Ill admit, I still am VERY self-concious about it, and I havent gone swimming in many years. I dont know, I guess Ive just been embarassed about having a huge hump on my back. For my job I have to do alot of crouching and bending, so I always try to make sure nobody is behind me when I bend down or I turn to the side. I am definately more willing to talk about it now, but hate letting people see it. Weird.

JenniferG
06-22-2010, 12:33 AM
I am not sure whether this is denial or not, but I ignored my scoliosis for most of my life. I rarely thought about it and never discussed it until the pain started. Then, one day I noticed the hump. And the wedged in side. And how much more I was having to take up one hem of my pants. I couldn't ignore it any longer. But it was the pain I wanted fixed more than anything. There have been some good side-benefits of the surgery.

foofer
06-22-2010, 12:36 AM
Karen,

I never hid my scoliosis and occasionally, I would talk about it- sometimes to people I didn't know well and always with friends. I believe that I am lucky within the severe scoli range in that my curves were always very balanced and my rib hump is less pronounced than some I have seen. Sometimes a bit of "magical thinking" got me through my life- I seemed to have the ability to cycle through by forgetting about it, then getting occasionally shocked back into reality, then some sadness, then acceptance again, and back into denial.

Still, I always kept my hair long until more recently, and I still feel too exposed if it's shorter than shoulder length. Don't know why that protection feels necessary, but it always has. Samson complex- if I cut my hair, I will lose my strength. There were certain clothes I wouldn't wear, but I always wore bathing suits, etc figuring if the truth be told: Better to show some better parts along with the bad. :)

I think the hardest time was when I was a teenager and early 20's. It almost seems like I just woke up to being 16 years old and none of my parts worked in coordination.

When I read some of the cosmetic reporting on the forum, it does open a door I've kept safely shut, and makes me want to fix the "deformity" so I can feel that elation of seeing what I really am, have been all along, before I became how I am now. Whoaaaa, that last sentence makes absolutely no sense but I will leave it because I know what I mean, and I suspect a few others might. Boils down to: what I might have been.

When I last visited a doctor in April and he found my curves to measure substantially less than the previous doctor, I was both happy/relieved but also a bit mildly disappointed that I would have to stay suspended in this gray zone of just enough pain but not enough, and just enough progression but not enough for surgery to be highly recommended. My belief is that when the day comes that I am in the red zone either with pain or progression, I would not hesitate to take the leap. After reading so much on this forum, it does not seem like the dark unknown anymore. Not that it seems like the fuzzy familiar, but I would know what I am up against.

Karen, I hope you go out and buy strapless gowns, wear your hair up in a swirl, and enjoy your future body. I talked to a woman recently who had the surgery about 12 years ago and never leaves the house without a showy waist belt on. There are perks involved.

rohrer01
06-22-2010, 12:40 AM
I was pretty much in denial as a teen. I didn't like to talk about height because when we (me and my peers) were all in our final growth spurt in high school, I made it to 5' 8-1/4" then went to 5' 7-1/2". I never told anyone in high school because my shrinking embarrassed me. I disguised my unevenness with postural adjustments - and still do. I am more self-conscious now than I was back then. However, I am more willing to talk about it now than I was then. I think I am one of the more fortunate folks with balance that make my curves less noticeable. Although, when I showed one of my friends who didn't really know what was wrong with my back, I was met with a horrified gasp. :eek: I guess it looks worse than I thought. Maybe I didn't think it was that bad because I'm used to the way I look. I really don't know what other people think when I wear a swimsuit.:confused:

CHRIS WBS
06-22-2010, 10:21 AM
Karen, I sure can relate to what you are saying. I spent my entire life ashamed and embarrassed about my deformity. I did not want anyone, even my family, to know I had this malady. And nobody did know until the last few years when I started to have problems and began looking into surgery. However, my sisters did notice in recent years that I was losing height and carrying one hip higher. What was difficult for me too as a younger woman was my relationships with men. Men found me beautiful and I attracted a lot of men who wanted beautiful women with beautiful bodies. How would I ever explain my deformity to them? I found myself shying away from men more and more.

Sharon, Iím thrilled for your daughters that they have been spared from the anguish of going through life with a disfigurement. How I wish this current technology was around when I was younger.

Davis
06-22-2010, 10:26 AM
I'm now about 6' 3, when I was younger and still going throug my growth spurt I measured at 6'4 and would, I'm sure, be taller if it werent for this curve.
I was never able to lie to myself about it and have always been super self consciouus about it, it was crippling during my teens and twenties.

jrnyc
06-22-2010, 03:59 PM
i have found that one of the few perks of aging is that i dont care what people think of me (as i did when i was younger)...
i've read others who say the same...

i have to wonder about any guy who would not date someone who has a curved spine...if they take the time to get to know you, you'd hope it wouldnt matter all that much to them...:rolleyes:

i think it is sad that young girls have to worry about such things, when they have enough to be concerned about with their health...

jess

Confusedmom
06-22-2010, 04:03 PM
Okay, I guess I was lucky. I wore a back brace in 1985-1986. I always wore a tank-top under it and a baggy Hawaiian shirt on top with a skort (remember those?). My good friends who knew I had a brace would ask me if it made me feel self-conscious, but it truly didn't. At Halloween I would wedge a knife in the side between my real abdomen and the brace and make it look like someone was stabbing me. Had fun with it!

My figure has become progressively more disfigured, but it still doesn't really bother me much. It's true that I look for clothes that are a little looser and I don't wear anything open-back if I can help it, but I guess I just figure people aren't really looking at my BACK. Hopefully anyone I care about is looking at my face! Obviously I would enjoy the cosmetic benefits of surgery, but I don't think I can go as far as to say I've been ashamed of my scoliosis. Heck, it's not my fault anyway!

Now, if we want to talk about baby weight, that's a different story...

:),
Evelyn

jrnyc
06-22-2010, 04:14 PM
hey Ev....good for you! great attitude! :)

jess

Confusedmom
06-22-2010, 04:16 PM
[QUOTE=foofer;101991]I would have to stay suspended in this gray zone of just enough pain but not enough, and just enough progression but not enough for surgery to be highly recommended. QUOTE]

Amy,

Can you elaborate on this? How much progression have you had? How much pain are you in? I am somewhat surprised you are not getting strong recommendations for surgery. I have gotten strong recommendations from most docs I've seen, and my curves are roughly the same as yours (lower a little worse, upper a little better). I've been progressing 1-2 degrees per year, and I have severe 20+ rotation, but I'm not in a great deal of pain. Sure would love to hear what you've heard and what's different with your situation!

Thanks,
Evelyn

golfnut
06-22-2010, 04:38 PM
Thanks for all of your comments. Fortunately, I didn't have to wear a brace during my teenage years and I had no rib hump or super obvious curve until my 40's, so I was able to wear any type of clothing/swim suits, etc. when I was younger. Now that I have "come out of the closet" with my scoliosis and know (hope) it will be corrected after surgery, I'm not as self conscious.
Thanks, again. Evelyn, I love your attitude.

golfnut
06-22-2010, 04:47 PM
I guess I didn't deny scoliosis to myself, but I sure didn't talk about it with anyone else. I think it's because I didn't know anyone who had it and didn't want to point it out to others with the hope that maybe they had not noticed my lopsidedness.
Karen

LynetteG
06-22-2010, 05:27 PM
I only found out 12 years ago, and I told everyone about it, but I always felt like a deformed freak as it got worse, lost a lot of confidence in myself over the years. But thankfully now, I feel great post surgery. :)

Back-out
06-22-2010, 06:46 PM
I AM getting tired of large T shirts when I used to wear a small/X-small - and those tight bras, tight everything, are really getting to me too. Seems all my favorite clothes no longer fit. Checked out Walmart and Target yesterday for elastic pants and button-front dresses (all the way down). They were all gross! Did NOT give into temptation to try the maternity section! :rolleyes: (And figure my REALLY bad curve is lumbar, including lumbar kyphosis! :eek: )

I weigh four pounds less than when I graduated from High School, but it sure isn't distributed the same having lost four+ inches and with all the squishing in the thorax, bad kyphosis, etc. I avoid looking in the mirror undressed (especially sideways) but the last time I got a good look, I cried. It was in a hotel with many bathroom mirrors so I could see all angles.

No, thanks! :o

Yeah, I've not only been denying deformity (not THAT hard if one avoids mirrors ) but pain! Now, that's been a neat trick considering I sometimes spend entire days in bed after exceptional exertion! That includes doubling my cell phone plan so I don't have to sit at my desk to speak on a corded phone.

Yeah, it hurts, (Glares). Still in my daydreams and planning, up until now, I've been in denial about all the things I can no longer manage. I was one who believed and acted upon "I can lift anything if I try hard enough". Well, now that I tip over in (bad) pain from trying to carry a mere laundry basket, clasped in front - lying to myself has suddenly gotten a lot harder. Not to mention (haha) trying to run!

golfnut
06-22-2010, 10:30 PM
Amanda,
I have gone shopping and tried on cute tops and thought, "Yes, I like this!" and then looked in the mirror at the back view and thought, "No way." I don't remember, but have you scheduled surgery? It sounds like scoliosis is ruling your life.

Back-out
06-22-2010, 10:42 PM
Amanda,
I have gone shopping and tried on cute tops and thought, "Yes, I like this!" and then looked in the mirror at the back view and thought, "No way." I don't remember, but have you scheduled surgery? It sounds like scoliosis is ruling your life.
I'm getting there. I'm meanwhile proceeding on an "as if" basis, but recently had some major setbacks in the do-ability end of things (financial assistance and promised help - both volunteered - appear to be falling through. Kind of too upset to discuss for now. :()

Thanks for asking.

lray
06-22-2010, 10:44 PM
Everyone has a different story to tell regarding their experiences growing up with this. Having had to wear the awful and uncomfortable Milwaukee brace in elementary school and being taunted and teased is a really bad memory for me. Fast forward through high school and feeling my deformity get worse but hiding it as best as I could with long hair. There were so many tricks that I learned to prevent others from "noticing." I wish that I didn't care back then, but I did. I wanted to be like all of my other friends and wear the same types of clothes, but couldn't. Fast forward through my adult years and it's the same thing. I feel many times that I am still that awkward teenager and will be mortified if anyone notices. My deformity is getting worse and so is the pain. So once I have to tell my employer of my upcoming surgery, the cat will be out of the bag and I will have to deal with the questions and prying eyes on my back. Part of me will be relieved because I won't have to hide it anymore, but then it means I will be the center of attention and I hate that! Growing up like I did has made me this way and it's a shame.

TiffanyK
06-22-2010, 11:28 PM
When I was a teenager I never talked about having scoliosis. No one ever noticed that anything was wrong with me except being very short. My legs are the same length and my hips are even. For a long time the only outward sign of it is that one of my shoulders is every so slightly higher. Now, there's a slight hump around my right shoulder blade. I was surprised when the doctor mentioned it because I never knew it was there. In the appointment, I asked my husband if he knew I had a hump. He said no so I figure that the average person doesn't know about it either. The past couple years I've talked to anyone who will listen about scoliosis. I'm sure a few of the ladies in the office are tired of me by now, but they'll get a break from me soon enough!

Amanda, I know exactly what you mean about the large t-shirts. I just had to buy new work shirts because I couldn't stand to look at myself in the mirror in my old shirts. A couple months ago when I was dropping my daughter off at preschool, one of the teachers asked me when my due date was. Only I'm not pregnant... I wish that was the reason and not because of the scoliosis.

Debra JGL
06-22-2010, 11:59 PM
I hoped when I was done with my Milwalkee brace, I could put it in the trash (actually the closet) and never look back - I would be done with scoliosis, done with that part of my life. I can relate to Laurie when she talked about being teased and berated (kids in middle school can be tough). The brace was very bulky and visible, and I just went into a shell at that point in my life. I had to give up sports that meant alot to me, as I wore the brace 23 hours a day. I realized recently, after my mom talked about me being in the brace as a kid in front of my kids, that I never even told them I wore a brace. For many years I believe my curves stayed smaller, but into my mid 20's I knew they were getting bigger and more painful, even if the doctors at that time didn't believe they did. I too had curves that balanced out and I believe the deformity didn't show too much. The past couple of years though there's no denying it, one waist side is straight down, the other side my ribs just about rest on my hips, and there's a hump on my right upper side. A couple of years ago, when I still thought I was fooling everyone, I was taking a tennis lesson with some friends. They video taped us from behind, when I saw my video I was shocked and embarrassed how my back looked. There was no more denying it.

foofer
06-23-2010, 12:37 AM
[QUOTE=foofer;101991]I would have to stay suspended in this gray zone of just enough pain but not enough, and just enough progression but not enough for surgery to be highly recommended. QUOTE]

Amy,

Can you elaborate on this? How much progression have you had? How much pain are you in? I am somewhat surprised you are not getting strong recommendations for surgery. I have gotten strong recommendations from most docs I've seen, and my curves are roughly the same as yours (lower a little worse, upper a little better). I've been progressing 1-2 degrees per year, and I have severe 20+ rotation, but I'm not in a great deal of pain. Sure would love to hear what you've heard and what's different with your situation!

Thanks,
Evelyn

Hi Evelyn,

I started to see a doctor here in Colorado in 2000, after not being seen for 15 years. Back in 1985 I was told that my curves would never progress so I didn't feel the need to follow up. In 1985, my curves were 43T and 46L. i was 31 at the time. My curves measured 48T and 49L in 2000, so very slow progression. We monitored me for the next 8 years and in 2008, my doctor was suddenly very vehement that I should have the surgery done soon. My curves were 57T and 56L. They had progressed a degree or two each year, sometimes more, then they would regress, etc.

I felt pretty alarmed and had done some more research in the meantime, had decided that this doctor and the medical facility involved would not be my choice for such a big surgery. I saw Dr Boachie in NYC in 2009, both January and September. The Jan visit he did not take x-rays since I had them with me and were only a few months old. In Sept he had his facility take xrays and he measured them at 64T and 65L. He said this did not automatically indicate progression as different docs measure using different criteria. Told 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. I have another appointment with him in October. Also, I'm unclear what my rotation is but there was a mention in my MD notes of having a 5 lumbar and 10 thoracic rotational prominences on forward bend. I have slippage at both L4-L5 and L5-S1.

Then this spring I was visiting family in the Boston area and I went to Dr Rand in boston. He measured my curves on a new xray taken at New England Hospital at 57T and 56L. :confused:I had all my prior xrays with me, but he did not compare them. After assessing my pain, quality of life, future concerns, he definitively said that he did not think I was ready for this operation- maybe later. He told me that they possibly needed to rewrite the notion that getting older made it so much harder as he was routinely operating on patients in their 60's, 70's and they were doing very well.

I was quite happy about all these diagnoses, but as the weeks have passed, I still wonder if I underplay my pain and symptoms. I get by pretty fine, but it's not easy and I good will myself through a lot of stuff and take a fair amount of Advil. No narcotics, but some bad days I wonder....

You are quite a bit younger and that must make a difference. I only entered into surgical range in my mid to late 40's. Dr Boachie said that often people will self-fuse in the 70's and not progress further. So I am in the watching and waiting mode which is fine most of the time. I'm trying to get into the best shape I can for now- taking a lot of hot yoga, walking, hiking, some weights. If I do get into worse pain or if I progress again ...(I'll just find a doctor who says I measure less :D)

A lot of info just to tell you I think it makes a world of difference your age and how long you have had severe curvature....I wish you a peaceful decision-making process. Ay yi yi :eek:

We'll all be ok. ;)

titaniumed
06-23-2010, 03:09 AM
Amy

For years, my pain tolerance grew and grew. If you are taking Advil on a regular basis for pain, and thinking about the "dual edged sword" to maintain your daily activites, maybe your pain levels ARE higher than you are thinking.....

It wasnít till I couldn't walk, that I finally gave my pain ratings an 8 or a 9 with 4 herniations. It was BRUTAL pain, enough to drop an elephant.

At my Chiro, I consistently wrote down 3 level pain for many years. In reality, the actual numbers should have been higher.

Defining pain is so difficult. A child with a small cut on the knee will rate that a 10. I broke my shoulder and didnít even bother to go to the hospital. My shoulder surgeon couldnít believe it. I didnít take anything either.

I couldnít remember what being pain free was like. It was about 4 months post that I realized this.

Dr Boachie is right. But have you built up your tolerance to pain?
Ed

jrnyc
06-23-2010, 05:39 AM
hi Amy
i believe it is a big mistake to underplay or under report pain to surgeons.....or to any doctors..
my pain has been worsening, mostly due to degenerative disc disease and spinal stenosis...and though i have a good pain tolerance, i also realized that ...i have developed a lot of ways to try to avoid the pain...ignoring it, using activities to distract from the pain (used to be working 2 jobs), and ...dont know how to explain this...not being fully present inside my body...to not feel the pain fully!
i just kinda' developed ways to cope with increasing... and sometimes extreme.... pain.

from personal experience, i have found that under reporting pain to doctors can cause trouble later down the road, because when the patient finally comes clean about how much pain they have really been in, some doctors wont believe them. it really doesnt help patient or doctor.
sometimes, i guess we think we are doing something good, trying to "tough it out," but we just end up hurting ourselves....

hope you feel better soon...
jess

foofer
06-23-2010, 11:03 AM
Ed and Jess,

Thanks so much for lasering in on this issue for me. Right away, tears sprung into my eyes which for me is always a surefire sign that a truth has emerged that I was attempting to gloss over...

Ed,

I do think I have built up my tolerance to pain...but I have felt that the docs I have seen have a good sense of where I am at. Dr Boachie asked me to keep a little journal on activity and what I have given up. I realized recently that I need to add that I only want to spend about 15 minutes at the dinner table- no lingering conversation please unless I can move to the living room floor for the duration. (Maybe this is because I gave up wine several months ago- the only alcohol I drank-so it's not as fun to hang out and I feel my pain more.) When i filled out my last set of pain forms for Dr Rand, I edged on the side of exaggeration and still he checked me out, noted flexibility, etc, and sent me on my way with the framing of: you're not there yet. Sigh.

Defining pain IS so difficult! I truly cannot tell anymore...I'm of the school of conditioning that unless you're on fire, pull yourself up by your bootstraps and get on with it.

The big news is that when I do have the elephant pain, I will simply make an appointment, sign up for surgery, and onward through the fog. Not in enough pain- sheesh- what a concept.

Thanks, Ed. You're the bomb. :)

Jess,

Yes, I know EXACTLY what you mean by "not being fully present in one's body" And I do find myself going from activity to activity to stay ahead of feeling my body. Well put. When I rest or lie down though, it's not like I get to escape discomfort, so on I go. And just when I think maybe I will make an appointment with our local pain guy- we have a great one here- then I have a great few days and I forget about it. Plus I know he'll tell me: no surgery.;). I already know that he tells people that. I remember you telling other forumites that pain guys are often against surgery. I do think that my life, my pain, my activity level...does cause a low-level fatigue that I constantly grapple with.

Thanks again...Onward ever downward. ;)

jrnyc
06-23-2010, 04:08 PM
hi Amy
your description is amazingly on target..

in 12 step (i used to lead groups in my drug/alcohol counseling work in NYC) they say it is being a "human doing" instead of a human being...that we run around and do and do and do to escape what we dont want to feel...but in that case, it is usually emotional pain...in our case, it is physical pain!
:(

jess

rohrer01
06-23-2010, 04:14 PM
Ed's wisdom on pain... Well put!

Pain is so very hard to describe. My family thinks I'm a wimp and that I exaggerate the pain. I don't know. I am still taking narcotics daily as my doc won't let me take NSAIDS. Tylenol doesn't cut it. I wonder if my pain is really that bad that I need these meds or is it just wearing me down. I can do most activities that other people can do with or without the meds. However my level of discomfort makes things very unenjoyable. Simple things like getting my grandson in and out of his car seat can be excruciating. I just dread the hand-off when my daughter gives me the baby and asks me to buckle him in. Sometimes I wonder if my pain tolerance is really higher than everyon else's. I just don't know. I survived a c-section with no anesthesia, so I think I can honestly say I know what pain is. I rolled over on my side last night to give my hubby a good-night kiss and got a muscle spasm in my ribs so bad that I couldn't catch my breath. So there I lay taking weird jerky short breaths with tears streaming down my face. I mustered up the courage to pull myself upright, and when I did I felt better. I had like a bruised sensation for the rest of the night and it triggered upper back pain. Am I really just a wuss? I don't even know the answer. Oh, well. I'm just rambling.

Oh, and as for the long hair thing, me too! I want people to notice at least one "good" feature when they describe me.

jrnyc
06-23-2010, 04:20 PM
rohr
a C section without ...what...??? you did have an epidural or something, no? how could they slice into your body with no pain killer???? :eek:

please tell me you had...something...? even in China they use acupuncture!!

oh...have you shown your family your Xrays? when we were making a disc of my MRI, my brother in law got a look at mine...he was shocked at how bad mine looks!

jess

rohrer01
06-23-2010, 04:24 PM
rohr
a C section without ...what...??? you did have an epidural or something, no? how could they slice into your body with no pain killer???? :eek:

please tell me you had...something...? even in China they use acupuncture!!

oh...have you shown your family your Xrays? when we were making a disc of my MRI, my brother in law got a look at mine...he was shocked at how bad mine looks!

jess

I was supposed to be put to sleep, but they only gave me the paralytic so I could hear and FEEL everything! My family members have all seen my X-rays. They live with my whining every day and I think they are sick of it. I try not to complain constantly but it slips out.:( People don't like to hear whiners.

jrnyc
06-23-2010, 04:32 PM
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
06-23-2010, 04:59 PM
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
06-23-2010, 05:38 PM
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
06-23-2010, 06:45 PM
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. :o

Confusedmom
06-23-2010, 11:07 PM
[QUOTE=Confusedmom;102020]
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