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Mobee211
05-15-2006, 04:09 PM
When I was 18 my curves measured 23 degrees (both lumbar and thoracic). At 22 they were both at 30 degrees. The orthopedist said that this was not a significant change at all. Now 3 years later they are at 34 (thoracic) and 30 (lumbar) and the radiologist report again says "no significant change". Um, how is 12 degrees of progression in only 7 years NOT SIGNIFICANT?! Am I nuts or something? What the hell is wrong with these people?!!!!!!!!

LindaRacine
05-15-2006, 04:54 PM
Hi Mobee...

There's always a 5 degree margin of error, so the 4 degree progression you've experienced in the last 3 years might, indeed, be meaningless. You should talk to your orthopaedist to find out why s/he thinks it's not significant. At 30/34 degrees, I believe the experts would all tell you that your scoliosis doesn't require treatment, but it might be nice to know if they think your curves will continue to progress.

Regards,
Linda

Mobee211
05-15-2006, 06:19 PM
Thanks Linda. They have continued to progress. I thought they would stop progressing after I stopped growing. They haven't. I have a prominent rib hump and I refuse to spend the remainder of my life looking like this (with a hump). If it means I have to go to Tijuana, Mexico to have surgery then that is what I will do. I've had so many health problems in my short life that I can;t deal with any of this any more. I refuse to walk around with a deformity. That's not going to happen. I'm done with this. Done.

Julieanne
05-15-2006, 07:42 PM
Mobee

You are absolutely right!! I would love to know what idiot could look at an x-ray or MRI and see OBVIOUS problems and/or changes and smugly say, "nothing significant....." :mad: I have a stack of reports from the last few years, ALL pointing to obvious progression and problems, one being a disc compression on my spinal cord, and all the "doctors" just arrogantly flit their nose at you like you are insane! Why, you may ask?? THE MONEY FACTOR! Unless you have a money making, celebrity-attracting, cause event style illness or disease, TOUGH COOKIES! I have had the exact same response from every jerk I've seen in the last 5 years! Finally, I saw 1 guy honest and REAL enough to say HEY..PROBLEM HERE! The fact of the matter is this: you and I don't have a popular, fad disease that warrants any attention or concern, period. It is not a multi gazillion dollar money tree for everyone to get rich off of. You think anyone would support "Race for the Curve?" Doubt it....So the medical community just continues to blow us off until we finally fall over.....then maybe if we're fortunate enough to break something then we can get some serious help! So...for those who want to make excuses and stick your head in the sand..WAKE UP. I hope you find someone who will take you seriously, and you just keep pushing until someone worthy listens. By the way, when my curve had a 10 degree increase in just 2 years, an expert from St Louis didn't even catch it.....HELLO?

green m&m
05-15-2006, 07:44 PM
Weird... didn't you once post your curves were 37/33 at 22 in one of your earlier posts when you first came here?

Mobee211
05-15-2006, 08:14 PM
julianne-Thanks, I needed that! I had a very severe case of IBS and suffered 7 years before they finally fixed it (with surgery). Same thing...the run around. I hate surgery and if there were any way to fix this without it I would be ALL FOR IT. I can understand a degree of eorro in readinga curve, BUT if it progressed 7 degrees from 18-22 and 4 degrees from 22-26...um I think that is a progressiona nd not ALL error, you know? *sigh* lol "Race for the Curve" Thanks, that comment made me chuckle! Well I see the orthopedist in a few weeks and I'll let you know what he has to say. I hate to be "vain" but I have so many issues I'm dealing iwth right now and having a prominent rib hump is just tearing down my self esteem. Not to mention the pain I am in every day. I was very heavy as a teen...over 210 lbs and I had a poor body image. I dieted and am now at a healthy 135 lbs and I feel like "I work so hard to keep my body looking good and now I have this hump on my back?! Why bother anymore???" you know? On top of that I've had the stomach issues, the hypothyroidism, ovarian cysts etc. I just can't deal with a hump on my back that CAN BE FIXED and SHOULD BE FIXED! I'm sure the docs will say "You have no idea what this usrgery is like.." I got the same run around befoer my colectomy. Yes the surgery was horrible. Awful awful. I was in the hospital for 10 days and out of workfor 3 months...took me a year to recover. But I'd do it again in a heartbeat because it gave me my life back (no more stomach pain!). No surgery is fun and yes there are serious risks involved, but I refuse to walk around with a hump on my back that OTHER PEOPLE HAVE TOLD ME THEY CAN NOTICE! ugh. Sorry, again I don't mean to be vauin...I'm at my wits end in terms of my health issues :(

Green m&m - yes I did post that. The last time I had my xrays taken was when i was 22 and honest to god i thought they were 37/33 back then. I thought I was going crazy when the doc said no 30/30. They told me these ones were 34/30 and i said "how could it have gotten better?!" and they said the last xrays were 30/30...i was off! my bad. Maybe it was because the curve had progressed by 7 degrees from 18-22. I dunno. I have had so many freakin health problems that I get confused and everything gets jumbled and my head is spinning!

LindaRacine
05-15-2006, 08:43 PM
Hi Mobee...

I'm really sorry that you're having a difficult time.

I think that if you look long enough and hard enough, you'll eventually find someone to perform surgery. I'm not at all sure that's really in your best interest. I'd really like to encourage you to try to deal with your problems in a non-surgical way. Surgery is not the "be all and end all" that you might think, and it's a very drastic step.

I hear you about the deformity. It can be devastating to one's self image. All I can tell you is that it won't always be the big deal it is for you today. Perhaps you could look into something alternative to make your rib hump less apparent??

Regards,
Linda

P.S. By the way, I was also hyperthyroid (prior to radioactive iodine treatment) AND had ovarian cysts. :-)

Mobee211
05-16-2006, 09:18 AM
Hi Linda,

Thanks. If no doctor will perform my surgery then I would honestly rather die than walk around with a hump on my back. I cry every night about my back. It has gotten so bad that I am crying at work. The other day my family was talking about the movie Young Frankenstein and I started crying because I have a huge hump on my back like Igor. I don't like going out anymore...I don't want anyone to see my humpback. I won't go swimming, refuse to wear a bathing suit. This past year my depression has gotten much worse largely in part due to my anxiety over my back and my complete and utter hatred of my body. I can deal with health issues that ARE NOT apparent to the naked eye, but a deformity? No, cannot deal with that. Sometimes it gets so bad that I consider jumping in front of a train on my way to work. I've had so many health issues...can't deal with this one. I don't want to go on living if I have to have this hump forever. I know that is drastic to say but it is true. I won't ever change my opinion there. I refuse to have children because I have had many health issues and think that my genes should stop right here and now. I'm hoping that my psychiatrist and psychologist will work with me to convince a doctor to perform my surgery. Of course having surgery won't make me a happy person or cure depression...but it will take a HUUUUGE weight off my shoulders and do wonders for my self esteem.

JoAnn5
05-16-2006, 10:39 AM
Hi Mobee...

I'm sorry you are having such a rough time of it... physically and emotionally. I've discovered the hard way that depression and scoliosis go hand-in-hand. I really wish you would talk to your doctor about your depression and maybe find something to help you with it. Almost all of us have had to do that at one time or another and there is nothing wrong with asking for help for it. You wouldn't think twice to ask for medication for a diabetes, for instance... and depression is just as real a physical malady as that... and somehow seems to be triggered and aggravated by scoliosis... our pain and our appearance. We have ALL felt frustrated, embarrassed, angry, sad, etc. and the thing is, all those are NORMAL emotions that are to be expected from this condition.

So please, don't feel so down that you would rather DIE than continue... that signals to me the immediate need to talk to your physician and ask for some help with depression. I promise we will all be behind you 100% if you do this for yourself!!! Wish i could reach thru the screen to give a big hug, but will just have to send my prayers and best wishes to you... Please let us know how you are....
JoAnn

Mobee211
05-16-2006, 11:14 AM
Thanks JoAnn,

I have had depression since I was an adolescent, right around the time I started wearing the brace. I have been on many different types of medications. I currently take the maximum dose of Wellbutrin and the maximum dose of Effexor asw well as Lorazepam as needed for sleep. I asm still depressed. The next step will be a change of medications if needed. I'll be on medication for my depression for my entire life. Part of it is chemical...I come form a family with a long history of mental illness. But some of it is situational as well. I'm tired of having my body fail me. I've had everything under the sun :( I see a psychologist every week for an hour but no amount of talking or therapy will change the fact that I have a noticeable deformity. My best friend asked me to be her maid of honor and I turned her down because there is no way in hell I will walk down an aisle with everyone looking at me. I have to go on a cruise with my family this summer and I don't want to go , sure I'd LOVE to go on a cruise, but there will be loads of people running around in bathing suits and all I will ntoivce is how nice and straight their backs are and how crooked mine is. I'd rather stay home and hide away. Thanks for the support though. I know I sound like a whiney baby but I'm at the lowest of the lows right now and I'm finding it hard ot make it through the days.

LindaRacine
05-16-2006, 11:28 AM
Hi Mobee...

I sort of doubt this will make any difference, but I wonder if you think all of us here in these forums are as ugly and deformed as you think you are? Many of us probably have far worse rib humps than you. If we are all ugly and deformed, then you're right. But, if we're not ugly and deformed, than perhaps you should consider that other people don't think you are either.

I'm glad to hear that you're working with mental professionals, and truly hope that you can get past this. You are not your back, and I'm sure you have a lot of other great qualities that make you the person your friends and family love.

Regards,
Linda

Mobee211
05-16-2006, 01:06 PM
Linda,

I have SUPER low self esteem due to everything I have gone through. A small deformity is enough to cause me to fall to pieces. I have OCD, ADD, Depression, PTSD, Colonic Inertia, Eczema, Raynaud's syndrome, Hypothyroidism, Scoliosis, Keloids (since I had surgery 2 years ago I have a huge scar on my stomach because my body sucks and forms TOO MUCH scar tissue), Astigmatism in addition to being legally blind, High Blood Pressure, A benign brain tumor, ovarian cysts, and a rectocele. My body has failed me in every single sense of the word FAILURE. so, I can see that having one or two issues along with scoliosis is manageable. Having every single freaking thing in the book...nope cannot take anymore. I want my back fixed. I can't live like htis anymore. Thanks for your advice though. I'd probably be able to deal with my back if I didn't have every other thing wrong with my good for nothing body.

JoAnn5
05-16-2006, 02:50 PM
I'm worried about you, Mobee... Do you live alone or with your family?

Mobee211
05-16-2006, 03:11 PM
Joann,

I live alone but I do have a very close family. Things seem worse toay because I am very down. Don't worry too much though. I'm okay. I wrote a letter to my orthopedist whoi I will see on June 19th. I basically explained how the deformity is causing me a lt of mental anguish and that I don't want to have surgery right now, but I do want to know that surgery is an option if I decide I cannot live with the curve any longer. I explained everything in acute detail. In no way do I wish to upset anyone here on these boards. You have all been very supportive. In reading over my posts I see how I could have alarmed some people. I am not suicidal over my soliosis...not to worry. Just very frustrated with having to deal with everything. To top things off my mother is battling terminal breast cancer and I'm just having a rough time with everything right now. My life is like something out of a lifetime movie..drama drama! My psych even said "You have shit luck, I gotta tell ya." I'm just venting about my issues. Anyway I feel much better after writing the letter to my orthopedist. I thin konce he read tihs he can understand how I feel and why I feel that way. Anyway here is what I wrote:
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I am writing this letter to you prior to my appointment (for scoliosis) on June 19, 2006. While my curvature might be considered “moderate,” the effect it has on my mental state is severe. I have very low self esteem due to the plethora of health issues I have endured in 26 years. I hate the way I look and I cry every day about it. My parents are fed up with listening to me cry and told me to fix the problem if it bothers me that much. I do not enjoy going out with friends to bars, games, movies, restaurants etc. I spend the entire time thinking about my back and how horribly freakish I look. It is mortifying for me to have to bend down to pick something up because my rib hump sticks out like a sore thumb. I refuse to date because I am so self conscious about my figure that I do not even like being AROUND people, let alone potential boyfriends. I turned down being the maid of honor in my best friend’s wedding because I would have to wear a tight fitting dress and my right shoulder is so rounded that I look awful in regular clothes, let alone a dress! I am going on a cruise this summer with my family and I am not looking forward to it since bathing suits and scoliosis don’t mix. I spend hours every night looking at my back in a mirror, with clothes, without, with a bra, without, sideways, facing front, back etc. In the end I wind up in tears and sometimes quite hysterical. I understand that there are some people who are worse off than me. However, my body has continually failed me from the time I was a young child and I simply cannot deal with this deformity any longer. I have OCD, ADD, Depression, PTSD, Colonic Inertia, Eczema, Keratosis Pilaris, Reynaud’s syndrome, Hypothyroidism, Scoliosis, Keloids (no big deal BUT since I had surgery 2 years ago I have a huge scar on my stomach), astigmatism in addition to being practically legally blind, high blood pressure, a benign brain tumor, ovarian cysts, and a rectoceole. Some of these conditions are not serious, but they DO add up and they DO crush my self esteem. I can deal with everything BUT the scoliosis. Everything else is easily hidden. The scoliosis is NOT. I do not want to live with a huge hump on my back.

I am sure you will read this and assume that I simply need counseling. I have been in counseling since the time I was 4 years old. I have been on almost every anti-depressant in the book. Having the surgery will NOT cure my depression. However, it will relieve a lot of my anxiety and help me to feel better about myself. My self image/self worth is something that I struggle with every day, and it is the root off my depression and anxiety issues. I am currently dealing with the aftermath of sexual abuse and how it has negatively impacted self image. The troubles I have faced in the past make dealing with a deformity, even a relatively mild deformity, enormously difficult. As you probably remember, I used to be a very heavy child. I was tormented at school day in and day out. I used to sit in the school bathroom and eat my sandwich while sitting on top of the toilet lid so no one would be mean to me. In High School I had to wear a back brace every day. I was tormented and people would routinely ask me to bend over so that they could see my “hump.” In college I dieted my way down to a healthy weight. My weight became a major concern of mine. Even now I follow a VERY restrictive diet and I will always have to do so. I dieted, lost the weight, but still I could not wear cute clothes because my “hump” stuck out. I worked so hard to lose weight and have a nice figure and in the end it did nothing but accentuate my spinal deformity. It seems I cannot win for losing.

In addition to the emotional toll this has been taking on my health, I am in pain every single day. I am a very fit and active young woman and I eat healthy. Still, my back aches all day, every day. I have heard that scoliosis surgery is a difficult procedure. I’m sure it is! I am a strong woman and I feel I can handle it though. 2 years ago I had to have my entire colon removed due to colonic inertia (paralyzed colon). I spent 7 years suffering with the disorder before finally getting some relief. I was warned about how awful the surgery would be and made to wait years before finally being offered the procedure as a last resort. Yes, the surgery was rough, but the benefits have far outweighed the pain! I still harbor resentment towards the medical professionals who made me suffer for 7 years before fixing my problem. I lost 7 years of my life with colonic inertia. I don’t want to feel awful about my body and my deformity anymore. I don’t want to lose any more of my precious youth. I don’t want to have the surgery this year…maybe not even next year. I have a lot on my plate right now. I just need some piece of mind. I need to know that when I decide I need to have my spine fixed, I will be able to have someone fix it.

I appreciate you taking the time to read this letter. I will see you on June 19th.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

katblack
05-16-2006, 04:32 PM
Hi Mobee...

I sort of doubt this will make any difference, but I wonder if you think all of us here in these forums are as ugly and deformed as you think you are? Many of us probably have far worse rib humps than you. If we are all ugly and deformed, then you're right. But, if we're not ugly and deformed, than perhaps you should consider that other people don't think you are either.

I'm glad to hear that you're working with mental professionals, and truly hope that you can get past this. You are not your back, and I'm sure you have a lot of other great qualities that make you the person your friends and family love.

Regards,
Linda
+1

I agree with Linda on this.
You are not your back or your rib hump and I'm very glad to hear that you are getting counseling.
I wish you nothing but the best and hope that someone can help you.

CurvySAT05
05-17-2006, 12:08 AM
Mobee, You mentioned that you have a huge scar on your stomach from where you had a Keloid Scar removed. You also mentioned that you had a bad scar formation process. I dont know if you had the same scar tissue formation with your surgery for your colon, but that might be an issue to raise with your ortho if and when he considers your spine surgery. If you form much scar tissue, you are going to be at risk to form the same scar tissue along the incision from the fusion. I know that you want to get your spine straightened, but it will also show if you wear a bathing suit and the such. Just remember that once your spine is straightened you will always carry the scars from it and it will not just be over and done with.
I hope that you start feeling better soon. I know that you have been very depressed recently. Good luck. I am praying for you.
mandy

Mobee211
05-17-2006, 08:41 AM
Many thanks to all of you. Mandy-I do have ascar on my stomach but it went down quite a bit. Is aw a dermatologist for injections to reduce the scar. It isn't that bad. I'd rather have a scar on my back than a hump. Plus, now I know I form keloids and can have a plastic surgeon watch my incision healing.

sweetness514
05-20-2006, 02:19 PM
Well then I guess it's settled then. If you can find a surgeon that wants to perform surgery, and you know that it's not a guarantee for pain and there are post ops risks later down the road(like additional and/or different types of pains and additional surgeries), you (and the surgeon) can only decide what's best for you and you want to do.

I had a 60 degree curve who didn't progress at all in 10 years(I just checked my x rays last night) before I had surgery for pain only and I never cared about it, it was back there, and I wore tight clothes and most of my close friends knew of it, and never thought it was gross or something. Never had problems with having men physically attracted to me, even the "superficial" ones. I was asked to be a model many times, and declined b/c I'm a make up artist and prefer being behind the camera, and I'm also an introvert. I still have a hump btw. But I know how physical perception is personal. I'm sorry about how you feel and all you have been through, hang in there.

Good luck.

Mobee211
05-20-2006, 03:47 PM
sweetness,

my rib hump is noticeable even when i am standing or sitting. it's not just when i bend over. i have such a horrible body image of myself due to child abuse etc. ive been in therapy all my life for it so that plays a part. im sure most of the people on these boards think i'm vain or crazy for wanting it fixed, but i've had too many things worng with me and too many struggles already...this scoliosis will just get worse :( having this rib hump is knocking me down day by day. therapy can help, but it is up to me to decide what i need to do for myself. i've had strangers ask me if i have scoliosis so yes, it is noticeable. having depression, ocd, body image issues etc. and having scoliosis on top of that is too much for me to bear. im not looking at surgery this year, not even next year. i just want to know that if i cannot deal with it anymore that i can get it fixed.

sweetness514
05-21-2006, 02:00 PM
I do not think you're vain at all, and I haven't seen your hump, but I hope for your sake you get more counseling and with everything that you have been through, try to see that this hump is not as bad and doesn't represent you. Maybe if you try to concentrate on what you have physically and emotionally that you like, it can help.

I wanted to post my experiences about the surgeries and pain just to say that sometimes surgery doesn't fix all and can cause other problems, and I didn't know this before I had surgery(wish I had been told), and I had a great surgeon. I also wanted to prove that so many people don't care about the hump, like some of us do(although I personally didn't, and I'm very shy), and that there are models who have scoliosis.

I have seen profiles of people who didn't have a big hump and it really bothered them, and that concerns me.

I hope you feel better with time, whatever you do ;)

sweetness514
05-21-2006, 02:12 PM
Forgot to say this...but it covered my hump, do you have long hair?

green m&m
05-21-2006, 02:16 PM
I also wanted to prove that so many people don't care about the hump, like some of us do(although I personally didn't, and I'm very shy), and that there are models who have scoliosis.


That reminded me, Sarah Michelle Galler has scoliosis and her rib hump is actually noticible... I picked it pu watching Buffy one day and did a search on google and turns out..yep

katblack
05-21-2006, 02:19 PM
We are not our scoliosis. It plays a big role in our lives but it is not what makes us who we are. We determine how we are perceived and how we perceive ourselves.
I don't find anyone with scoliosis to be ugly or deformed. It is a deformity but we are not monsters and most certainly not ugly.
There are many beautiful actress and actors and athletes with it. They are accomplished and happy and have not let this get in the way of their hopes and dreams and life.

Just a small list of famous and beautiful people with it:

Isabella Rossellini Actress Model
Renee Russo Actress Model
Sarah Michelle Gellar Actress Model
Karie Webb Pro Womans Golfer
Jo Beth Williams Actress
Jon Olson Olympic Swimmer
Janet Evans Olympic Swimmer
Alexandra Marinescu Olympic Gymnast
Jeanette Lee Professional Pool Player
Jillian Weise Actress
Alexandra Marinescu World Champion Gymnast
Melanie Blatt All Saints Star
Jon Olsen Olympic Swimmer
Liza Minnelli Famous Actor and Singer
Lisa Howard Actress
Chloe Sevigny Actress
Sarah Polley Actress
Laura Dern Actress
Kurt Cobain Famous Rock Singer
Catherine Oxenburg Actress/Model
Jessica Andrews Country Singer
Dudley Hart Golf Player
Robert Loudermilk Tennessee Football Player
Linda Blair Actress
Daryl Hannah Famous Actress
John Lydon Lead Singer of Sex Pistols (Johnny Rotten)
Yo-Yo Ma Cellist
Jenny Thompson Swimmer
Rowena Wallace Actor


"If you look at what you have in life, you'll always have more. If you look at what you don't have in life, you'll never have enough." -Oprah Winfrey

Kkong
05-21-2006, 05:21 PM
Good for you! My curves have continued to progress and I am 48 years old. Living with a deformity this long is hard to handle. I am now comtemplating surgery. I went for my first surgical consult last Tuesday and am looking forward to my first MRI.

LindaRacine
05-21-2006, 05:59 PM
Only someone who hasn't had a spine MRI would actually look forward to it. ;-)

Actually, it's not painful... just long and loud. If I were to have to go through it again, I would call the imaging center and ask if they could arrange for at least a strong tranquilizer.

--Linda

Singer
05-21-2006, 06:40 PM
Ditto on that, Linda. I never considered myself claustrophobic til I got a load of the tight fit in that thing. Definitely going for the Valium next round...

green m&m
05-21-2006, 06:56 PM
Ditto on that, Linda. I never considered myself claustrophobic til I got a load of the tight fit in that thing. Definitely going for the Valium next round...

Head MRIs are the worse thanks to the Darth Vadar esq head coil. I've yet to request any sedatives for MRIs.. I should have played my cards right so I could get some valium :-p. Oh well.. too late for that all my records state I am not clausterphobic.

LindaRacine
05-21-2006, 08:11 PM
Interestingly, I also had a head MRI and it didn't bother me nearly as much as the spine. For the spine MRI, I was in the tube for about an hour and a half. The head MRI was a much shorter amount of time.

--Linda

lelc2002@yahoo
05-22-2006, 07:01 AM
Before I go for my MRI, I'm calling to get something to take. That's the only test I have to do that's a pain....My back killed me on the last one I had.. My chart said only lower MRI but I bet they'll need the whole thing done. I will check to see if they have an open one at HSS.

JoAnn5
05-22-2006, 08:46 AM
I was hoping that now that i've had surgery and contain all the hardware, rods, screws, and cages that i couldn't have MRI's anymore.... Is that a false hope?

green m&m
05-22-2006, 11:00 AM
I was hoping that now that i've had surgery and contain all the hardware, rods, screws, and cages that i couldn't have MRI's anymore.... Is that a false hope?

I think lots of the new materials used in spinal fusion now are MRI safe. The metal just creates an small area surrounding the metal where the siginal gets distorted and no useable image can be seen.

green m&m
05-22-2006, 11:02 AM
Before I go for my MRI, I'm calling to get something to take. That's the only test I have to do that's a pain....My back killed me on the last one I had.. My chart said only lower MRI but I bet they'll need the whole thing done. I will check to see if they have an open one at HSS.

You most likely have to ask the ordering doctor to write you a prescription for something. I have not heard of one MRI place that'll give you any sedatives/pain meds, unless your doctor ordered a MRI w/ general anesthesia or IV sedation in which case you'd have an anesthealogist present during the scan.

What does your insurance do about MRIs? I know with mine, even if they want to extend the scan beyon the area the test was ordered for, they can't due to pre-auth stuff.

LindaRacine
05-22-2006, 11:46 AM
I was hoping that now that i've had surgery and contain all the hardware, rods, screws, and cages that i couldn't have MRI's anymore.... Is that a false hope?
Hi JoAnn...

Any MRI of your spine in the area of the implants, will be distorted. You can, however, have MRIs of other parts of your body, that will be fine.

Regards,
Linda

JoAnn5
05-22-2006, 01:44 PM
DRAT! Thought i had a great excuse not to have to endure one of those again! :(

Diana Black
05-24-2006, 03:04 PM
Mobee,

I know exactly what you're saying and you have every right to feel angry - you have had a really rough deal in so many ways. Like you, I have cut a lot of activities out of my life because of my hump - swimming, drama, etc - and hate trying on something new and seeing that,once again, it makes me look like a freak. I have had recurring depression, too.
However, I had 'the op' about 15 months ago and now feel even worse about myself. My back is flatter, but I look just as bad from the side and because of the spine being rotated my left rib in front is now really prominent. I am told this is the 'pay-off' (if I'd been told in advance I wouldn't have gone ahead). It is also more painful than it was before. Oh, and I never gained the promised 2 inches (I was really looking forward to having a torso more in proportion with the rest of me).
I am older than you, so you may be luckier, but I think you should be absolutely clear exactly how much the surgery is going to achieve. I wish I had written down what they said and made them sign it. I certainly think you shouldn't see this as something you may do 'one day' - time is obviously of the essence once you are out of your teens.
What I have learnt is just to try to live my life without letting this control me. My consultant says scoliotics have the same marriage rate as anyone else. Lots of people say they envy me for being slim, whereas I would love to just be straight and wouldn't mind how fat I was, but they feel unattractive and unlovable. Just one more thing - no matter how long you spend looking at yourself from different angles in the mirror it won't make it look any better. The longer i spent doing this, the more abnormal I looked until I hardly dared leave the house. I find it's better to just look at myself from the front (which is how we mainly see people anyway), wear loose clothes and then try to forget about it. I don't think other people notice it the way we do. If your friend has asked you to be a bridesmaid, she obviously doesn't!
Very best of luck - and remember you are not alone!

sweetness514
05-24-2006, 05:36 PM
That list really floored me, although I knew of Renee Russo as she has spoken about her scoliosis many times and I did notice Sarah Michelle Gellar's hump once when I accidentally watched her show(doesn't do much for me), and saw her in a tank top. I guess she doesn't care, and GOOD for her. I would like to know if some have had such a severe case that needed surgery, would that be interesting. I'm sure most would do anything to avoid it, since it is a big one and the pain and the scars. I know that Renee Russo showed her back in a movie with Kevin Costner without shame and has repeated many times that she wants to take care of her back without getting such a drastic surgery, and of course I so agree with her.

Since I do notice more about people's backs, I see that not a lot have "nice" ones. Most people have humps, bad posture and a lot of actresses have skinny ones. I saw Jennifer Aniston yesterday in the commercial for The Break up, and her back is not nice IMO. Very bony, barely any shoulder blades and seriosuly I don't think she cares or sees it that way.

Suzy
05-25-2006, 01:18 AM
Hi All, I just found out about the NO MRI fact, at my last post-op check up appt. (I have titanium/steel rods.) It does distort the image. (Plus will set off all airport alarms.) Now they could probably still do limbs and head I guess if the machine could localise those. As to discomfort during an MRI, I guess if you can't lay flat on your back on a hard flat surface it will be uncomfortable. The tech gave me ear plugs and said it was going to be loud and lengthy, I guess I listen to my music too loud because it didn't bother me! And as for music I got this rhythm going in my head (to all the buzzing and beeping of the machine.) that was a bit like teckno music and ended up falling asleep!! I scared the S&%# out of myself when I jerked awake (you know how as you fall asleep sometimes your body will jerk?) thinking I had ruined the whole scan from moving!! I couldn't believe I fell asleep, tech said it happens occasionally. I can see if one was claustrophobic it would be a problem. The closed one I was in had a bunch of little fish stickers stuck to the roof of it, like they were swimming around. It was pretty funny.
I totally understand the "hump hate" I found myself having back envy of those with nice straight backs and the nice smooth valley down the middle. I did also take note (while on vacation, 7 weeks before surgery, sitting by the pool.) that there are more people with bad posture, fat, hair, acne and such on their backs, that everyone has their own issues. PLUS we women are our own worst critics! Katblack's quote from Oprah says a lot.

sweetness514
05-29-2006, 06:57 PM
Actress Rebecca Romjin has scoliosis, and she says that pilates help her a lot.

Don't know the degree of her curve though.

SpineWhine
05-30-2006, 08:18 AM
I found this on the web, a list of celebrities who have scoliosis -
Sarah Michelle Gellar - Actress/Model
Janet Evans - Olympic Swimmer
Isabella Rossellini - Actress/Model
Alexandra Marinescu - Olympic Gymnast
Renee Russo - Actress/Model
Malanie Blatt - All Saints Star
Liza Minelli - Singer/Broadway actress
Isabella Rossellini - Actress/Model
Chloe Sevigny - Actress
Daryl Hannah - Actress

I then even googled a few of the actresses along with the word scoliosis and found some pictures of them, and their bare backs. Interestingly enough, it made me feel relieved, or more normal, and a little bit inspirational. I hate to admit it, but it is scary the impact celebrities have on our life.

sweetness514
05-30-2006, 01:30 PM
I will check Google, wouldn't mind seeing some of their backs, although I've noticed a few of them in movies or the TV. I could have sworn that I read an article a long time ago about Demi Moore having to wear a brace for a long time and being hospitalized while she was a pre teen for scoliosis, but maybe that article was wrong b/c all I can find now is that she had two operations for being cross eyed.

sweetness514
05-31-2006, 05:45 PM
I saw a few pics of Sarah Michelle Gellar and the one from her wedding is touching: http://www.whedon.info/article.php3?id_article=5089&img=sarah_scolio3.jpg


Elizabeth Taylor was on Larry King Live yesterday and said she has suffered from scoliosis(double curve) since she was a teen. I never would have noticed before, but now you can see her back is hunched over, and she says that is why she's in a wheelchair. She's such a beautiful person inside and out, and so inspirational, with all the health problems and surgeries she's had she never gives up and cares deeply for others. I admire her so much :)

Marcia
05-31-2006, 08:59 PM
I happened to catch Liz Taylor on Larry King Live last night. She has constant back pain and has to get around in a wheel chair because of the scoliosis she has had since she was young! She suffers because she let the curve get out of control. I've never been much of a Liz T. fan, but I sure can empathize with her!!! And I'm thankful that I'm not too old (almost there though) to have surgery.

The Professor
05-31-2006, 09:08 PM
You think that with as many celebrities as there are with scoliosis, and all the money moving around in the Hollywood crowd, that there would be more of a push to fund scoliosis research...

sweetness514
06-01-2006, 03:30 PM
I agree about the research. I guess when the curve is not that big and/or causes TOO much pain, people like these actors and singers don't let it bother their lives. I know I didn't care or think about it much for years after I stopped wearing my brace in my late teens until only a few months before I started to get some daily pain and opted for surgery. It really never bothered me on any level, and if I had some pain due to it I just worked around it. I wish I had known about Pilates and Yoga then though, maybe I would have waited to get surgery.

I don't know why Liz didn't get surgery for it, but I think she's had some surgery for her back-maybe for other things- and with all the surgeries she's had-can't count how many, bless her soul- I can understand why she didn't have it, especially now that she's 74 and still kicking and happy from what I saw.

kkshadow
06-01-2006, 05:14 PM
I'm new to this site, still & just looking around. I saw your post. I was teased in 9th grade, especially about my hump; especially when the health people came around and then everybody knew that I had scoliosis.

A couple of other things bother me, besides my hump. I have 1 boob that appears to be larger than the other, due to the scoliosis; more fat roll on 1 side of my body. And, I also have one shoulder that is a good bit higher than the other one.

Also, about 4 years ago. I had a abscessed cyst cut out of my back & have a huge incision on 1 side of my back. But I do not let these things bother me. My husband, that I married back 2002; thinks that I am perfect and that I also look perfect.

My back is 1 thing that I am not self-conscious about. I do have other things that I am self-conscious about. For instance, I have a Tongue Thrust. But the older I get, the less these things bother me.

I also have taken several anti-depressants. But, I took them more for getting over-stressed. I am not taking any, at the time; though.

Do keep going to the Dr's & eventually one will do surgery on you. But, please make sure that it is the Right Doctor. Don't go with the first one.

SandyC
06-01-2006, 05:36 PM
Sweetness,
If you consider that Liz T is 74 yrs. old, there was no surgery available in the 1930's - 1940's for scoli. The only thing that could have been done is 1) brace or 2) fuse her spine in the position it was in without correction.

CHRIS WBS
06-05-2006, 02:10 PM
In addition to suffering from multiple health problems over the years, Liz Taylor has heart failure. She has congenital scoliosis which only worsened as a result of osteoporosis. Given her frail health, no doctor in his right mind would advise surgery of this magnitude. That would surely be the end of Ms. Taylor.

Chris

Mobee211
06-07-2006, 11:14 AM
Thank you all for your kind words. I saw those pics of Sarah Michelle Gellar! WOW! I am considering surgery but not rushing into ANYTHING.

Thanks again guys, it helps to know I am not alone!