Psychological Effects

[Lexy]

Has anyone here ever felt like a monster. I was diagnosed with scoliosis when I was 13. I used to look in the mirror and hit myself in the back. I still to this day(I'm 28 now) have a low self esteem from this. I never wear bathing suits or form fitting shirts. I hate it when people touch me on the back. I feel deformed. I am scheduled to have surgery in November of this year. The only reason I am doing this is because of the pain and the fact that the curvature is progressing. I have a double curve with a rotation. I procastinated for a long time because I was scared of the risks associated with surgery. It seems to good to be true to have a back that looks normal. Hopefully the surgery will help my self esteem as well. I've read alot the psychological impact that scoliosis has on a person. It is amazing, I never thought my confidence issues were directly related to having scoliosis.

[LindaRacine]

Hi Lexy...

I can't urge you strongly enough to think about having a thoracoplasty as part of your surgical procedure. Not all doctors do them routinely. If your's doesn't, you might want to find another surgeon who does. I've spoken to lots of other women, who just like you, really hate their rib humps. The one woman I know who didn't have a thoracoplasty (because her doctor doesn't usually perform them), was VERY unhappy with her results.

Regards,
Linda

[letty]

Linda,

Thanks to your advise to Lexy, I will be getting second opinion because the doctor told me he is not doing thorocoplasty on me. I will certainly want the rib hump to get reduced although I'm not sure if it can be done at my age. (57). Thanks.

Letty

[LindaRacine]

Hi Letty...

By the way, most doctors will tell you that your rib hump may be substantially reduced just from the derotation that is done when the rods are attached to the spine. Unfortunately, most people report that the rib hump returns (at least somewhat) for some reason.

Regards,
Linda

[letty]

That's what the doctor told me, Linda. He said when the spine is straightened, the hump will be reduced. Oh well, I'm still getting a second opinion. Thanks.

Letty

[Karen Ocker]

psychological effects

In 1956 I had reduction of a 100 deg thoracic curve "balancing" the 3 curves. I was 14. The hump did go down somewhat but pained me psychologically my whole life. I became an RN and one patient asked me "your back looks terrible can't something be done?". This was after a 2 stage, un-instrumented fusion, a series of 3 casts and a year without walking. My best friend said"your back doesn't seem to bother you; it would bother me." I answered:"It does bother me but everything possible was done." No amount of creative dressing could hide it.

Things got more interesting when I got older when my uninstrumented fusion weakened and my curve ended up at 80 deg at age 59 with breathing difficulties and more deformity. I add here that a scoliosis specialist measured it at 64 deg 9 years before and said it probably would not get worse because my fusion was "solid".

I had no difficulty opting for revision surgery and thoracoplasty despite the increased pain in recovery. The hump is greatly reduced but still there with my right shoulder blade protruding less than before. This deformity was from my original 100 deg curve. There's just so much rib you can take away. The parts of the ribs which are sunken cannot be un-sunken. Room must be left for the lungs. But I look so much better and look more "normal".

Having said all this, despite the seriousness of surgery, I would never allow my child to beome so deformed. It's just not fair.
Karen

[Angiem5253]

Hi, I really do not know where to start. I just found this site and it is great to know I am not alone. I hate my body(hated it for many years). I am always selfconcious about my back, I do'nt dance , I do'nt wear a bathing suit, I do'nt go to the beach and I do'nt vacation in a place where I would have to do any of the above. Basically I am a wall flower, I have missed the best years of my life. I do'nt know what the degrees are but I do know they are serious. I went to a doctor 8 years ago and he coul'nt believe I was not in major pain, but he did say to use surgery as a last resort. I am now 52 and would love to have a semi normal back. It is on my mind in everything I do, I have 4 wonderful Granchildren and I can't Carry them because of the pain when I carry any type of weight. I am just beginning to have pain when I get up in the morning, I am so used to it and just live with it. I wear baggy clothes and wish just once I could wear something nice. My waist is totally uneven, to where when I wear a skirt one side is about 4 inches shorter than the other, when I sit at a table my breasts touch the table , I lost 4 inches in the last 10 years. I would like to see a specialist but don't know where to start. Is there anyone who could guide me in the right direction.
I need to find out if I am too old and what the dangers are in surgery and is it covered by insurance.

Hope someone is out there that can help me out.

[LindaRacine]

Hi Angie....

Since you posted in the "non-surgical area," I'm unsure of whether you're really open to surgery. If you are, you can find a list of specialists here:

http://www.srs.org/locator/

Regards,
Linda

[LindaRacine]

To get back to the original topic of this thread, I thought you might enjoy this poem Lexy:

So in this world
Of the simple and odd,
The bent and plain,
The unbalanced bod,
The imperfect people
And differently pawed,
Some live without love...
That's how they're flawed.

From "Flawed Dogs" by Berkeley Breathed

[Octavia]

I really like that poem, LInda.

While I agree that the psychological effects of a significant deformity (I have a 59 degree thoracic and 71 degree lumbar curve at last measurement ten years ago) can be devastating, I try to remember all the ways my body is strong and remarkable. I'm 56 years old and have had scoliosis since age 13.

The only way I treat the scoliosis is by significant exercise. I have managed to ward off surgery and pain by doing so, and I sometimes can minimize the appearance of the rib hump by wearing loose-fitting jackets, etc. However, I do catch some people's expressions when the hump is visible (by my leaning forward or some other action) and I have learned to inure myself to expressions of shock and worse.

We really do have a hard row to hoe but our bodies can be allies if we vow to be kinder in thought to them. At least that's my philosophy on a good day!

[Karen Ocker]

Octavia:
I long ago tried my best to look well and keep strong but at age 52 my major curve was 64 degrees; by age 59 it was 80 deg. I was getting more and more out of breath and had lost 30% of my lung capacity. The problem was I never expected my curves to increase in adulthood but, even with a fused spine to correct the 100 deg curve I had in 1956, the darned thing kept on curving. So for me it was a health issue not cosmetic. My surgery at age 60 improved my looks drastically when my spine was in a healthier alignment and my breathing improved.
I add that despite hiking, the gym, and Pilates my spine kept on curving. I do not have osteoporosis, never smoked and am not obese.

Karen

[Octavia]

Hi Karen,

It's good that you found a solution to health issues your scoliosis was posing. I was commenting on the self-hate that we, especially as women, subject ourselves to. I overhear women in the gym sometimes berate themselves for gaining a few pounds, and wonder how they would handle a physical deformity. While I do not feel "privileged" to have such an experience, it certainly puts other things in perspective!

I actually did smoke for 10 years (what a mistake!) but gave it up and began exercising regulary 30 years ago. I'm really thankful to have had minimal health effects from the scoliosis, so far. I did have a surgeon recommend posterior and anterior fusion about 10- years ago, and I am happy that I did not go through with it. He actually told me that paralysis, which is what I was concerned about in old age, was much more likely WITH the surgery!

It would be great to hear from older women and men who have treated their scoliosis apart from a surgical option.

[Karen Ocker]

Unfortunately there is no way to "treat" scoliosis other than bracing as a child before the vertebrae become wedge shaped permanently or sadly, surgery for progressive curves. We can mitigate pain and keep fit.

Numerous chiropractors have promised "new, special techniques" to reduce curves or prevent progression but scientific study shows no permanent correction. As a child I had a very minor curve treated by a chiropractor 3x a week for 9 months. I felt better for a few hours after the treatment but ended up with a 100 deg curve. My parents wasted hope and money they could not afford.

As far as paralysis goes the nerves coming out of the spinal cord are monitored continuously during surgery;paralysis is rare nowadays.


The following link is useful:

http://www.scoliosislinks.com/AlternativesDontWork.htm

Karen

[Jenny Spencer]

Octavia,
I was interested to read that you have not opted for surgery despite a recommendation 10 years ago and that your scoliosis has not been measured since.
Do you think that your curves have worsened?
What do you mean by "significant" exercise?
Why were you particularly concerned about paralysis in old age?
Have you completely ruled out surgery?


Returning to the thread:

I am currently weighing up the pros and cons of surgery.It's a huge decision to make but the psychological affects of scoliosis have not been a factor in my deliberations until just recently, when I have tried to find some incentive to go through all this trauma.The possibility of a straighter back is something I thought I'd never have and I'm starting to consider what difference it will make to me both physically and psychologically.
I have had one opinion so far with two more lined up for this month.
My first opinion surgeon wont do a thorocoplasty and describes this as "sloppy" surgery.He'd rather I was in hospital a shorter time and reckons that there will be some straightening up in any event.

[Octavia]

Hi Jenny,

To answer your questions:

1) I don't believe my curves have worsened significantly. I am going by absence of pain and no significant decrease in height. I'm hoping that any progression is slow.

2) When I started exercising 30 years ago, I taught myself to swim and continued that for ten years. In the interim I did dance and aerobics, but in "step class" my back suffered an injury and went out. I went to my primary care physician and was prescribed bed rest which helped, and I recovered.

Now I do cardio on an eliptical machine, strength training on computerized LifeFitness machines, ab (core) work, and stretching. A trainer at the gym showed me the back-strengthening machines and some exercises. I go about 3X/week for 1 1/2 hours each visit.

3) I had observed someone in a wheelchair with significant scoliosis, and perhaps from background reading (although I can't remember specifically), I thought paralysis might be a consequence in old age with increase of the curve on certain nerves. The surgeon I spoke to did say paralysis was more possible with surgery. He also told me, in response to my question, that a patient of his died of a pulmonary embolism during the operation.

4) I have not completely ruled out surgery. I would definitely consider it if I had ruled out all other options for relief of pain or a critical condition as a result of a worsening curve. I only hope that if I need the surgical option, the procedures will have advanced enough in time to be less drastic.

You don't mention your age. I did consider surgery in my early 40s, more for cosmetic reasons, and the surgeon I consulted then told me not to undertake the surgery for those reasons! Maybe he thought he could not get a good result.

Of course I always wonder how I would look and feel if I had had surgery when young. But I was diagnosed in 1961, and from my research alot of that early surgery failed. Later on it wasn't on my "front burner," as it were.

When the surgery was recommended 10 years ago, I did extensive research at a medical library. I was particularly struck by the statistical results that many surgeries need to be redone (frequently more than once), and that untreated control groups had similar outcomes as surgical patients concerning satisfaction with their overall condition, to a significant degree.

It's always a personal decision. I recommend extensive research and utmost confidence in your surgeon.

Best of luck and keep us apprised of your decision!