Denial of Deformity

[LynetteG]

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]

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! (And figure my REALLY bad curve is lumbar, including lumbar kyphosis! )

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!

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]

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]

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]

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]

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]

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]

[QUOTE=Confusedmom;102020]

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. 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 )

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

We'll all be ok.

[titaniumed]

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 wasn’t 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 didn’t even bother to go to the hospital. My shoulder surgeon couldn’t believe it. I didn’t take anything either.

I couldn’t 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]

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]

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]

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]

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]

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????

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]

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????

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.