No significant Change?!

[Mobee211]

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]

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]

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]

It's all about the money honey!!

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....." 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]

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]

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]

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]

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]

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]

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]

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]

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]

I'm worried about you, Mobee... Do you live alone or with your family?

[Mobee211]

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]

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.