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**CHRIS WBS** · 07-19-2006, 04:03 PM

I, I, I and I. Why don't you try focusing your attention on someone/something else for a change? There are plenty of charitable organizations seeking volunteers. One year I volunteered at a nursing home and met some of the nicest people. My cares just washed away when I saw the smiles on the faces of those elderly folks.

Chris

**Cakedec** · 07-19-2006, 04:28 PM

Keep the letter to take with you when you see him

Dear Mobee,

I am afraid that if you send this to the surgeon in advance of the appointment, he may cancel it. Plus he may not even remember what you wrote by the time he sees you.

If I were you, I would bring the letter with me to the appointment, and after he examines you, if he thinks you are borderline, tell him that you would like him to read this letter explaining how the scoliosis is affecting your life. This would emphasize your point and get him to respond to your pain at that time.

I know how frustrating it is to feel that you are being dismissed as being unimportant enough to treat. I dealt with it for many years, also. But one thing that helped me during this waiting time was to pray about it. God is caring about your pain and situation even if the surgeon doesn't. Tell him about it and that you don't feel that you can live with it. Ask him for a surgeon to treat you or else the strength to live with it and reason to go on. We don't know what God's timing is in our lives; we only know what we want and when. When I look back on my struggle with scoliosis, I can see that he was working circumstances out through the years just perfectly before he led me to the surgeon(s) at just the right timing in both mine and my family's life. His timing is perfect. I had to wait, trust, and keep praying (not easy at all when you are in pain, can't function, etc.).

Remember, man looks on the outside of a person, God looks on the heart.

Deb

**sweetness514** · 07-20-2006, 05:03 PM

As much as I don't usually get upset about things and don't belive in censorship with feelings and words, I can't say that your letter didn't touch a cord with me. Wow. I'm really sorry you feel that way, and I know it has been repeated many times from other people on the forum and other threads in the past regarding your case, but I truly believe it has to do with some negative body issues(and I know you know this) and I'm sorry going to a therapist doesn't help.

With that said, I just want to adress the part where bathing suits and scoliosis don't mix, and the fact that you think you're an ugly freak, among other things. I know that a personal perception can't be changed, and since you have body issues caused by many things that happened in your past, I can't tell you how you should feel about or see yourself- it wouldn't do a damn thing. But I hope some people who read this who are trying to cope with scoliosis don't think that it is true for them. I wore bikinis, had boyfriends, got married, was pretty happy with how I looked and was considered beautiful by many, and that's not just b/c I have a somewhat attractive exterior(I won't lie,it helps), but also b/c of my inner self, and how I treated people and have compassion.

I wish you luck, and if your doctor reads and answers your letter, don't mind sharing.

**mocity** · 07-20-2006, 05:14 PM

Mobee211, Didn't one of your other posts indicate you were seeing a doc on 7/18?

I would like to point out is that you need to figure out how to be happy on your own and not pin everything and all your happiness on surgery.

I wore a back brace growing up and had/have extensive curves. I had surgery in 1989 and lived pain-free for several years. However, at 35 I am now experiencing more pain than I ever had. Who cares what it LOOKS like... this pain overshadows that by millions. I know this is from the surgery. I HAD to have the surgery since my curves were progressing so rapidly. I just want you to understand that just because you might find a doc to do surgery for you this doesn't provide a final answer for you. Even at this age when I wear bathing suits I am uncomfortable. Scar from head to rear and my back is still curved. Not to mention all the other stuff that goes with getting older.

I hope you find happiness but also work on making yourself happy. Your true friends and family will only care what is on the inside and not what you look like on the outside.

One quick story that I remind myself of.......... One of my first jobs was auditing a hospital here in Houston. I would be feeling sorry for myself, my back hurt, I didn't like how it looked, etc. Every morning I would walk into this hospital and they had a "greeter" that had no arms and no legs saying "good morning....have a blessed day". This always put things into perspective.

I don't mean to sound like I don't understand what you are saying because I really do. I just wanted to share some advice based on my past. Work on yourself internally. I will keep you in my prayers.

**Mobee211** · 07-20-2006, 05:58 PM

Chris Wbs

I didn't come here to tell people about the good things that I do for others, I came here to talk about scoliosis. But, since you asked, I'll tell you:

I was a big sister to 3 underpriveleged youngsters in college and still keep in contact with all 3 of them

I have participated in the avon walk for breast cancer for 3 years in a row and last year I raised over 3700.00

I set up a support group for people who suffer from colonic inertia and have many people that I correspond with on a weekly basis, giving them advice, answeting their questions and just being a friend. Check out my site www.freewebs.com/maura1980. One girl came to boston for treatment and stayed with me, in my apartment.

I volunteered for my brother's keeper (delivering furniture to poor people) for a long time, although, I admit...I have not done any work with them in 6 months or so

I donate to and am a member of the OCF Foundation to advance research for those suffering with Obsessive Compulsive Disorder.

If you wanted me to come here and tout my accomplishments I would have done that. However, I was under the impression that, as a scoliosis message board, I could share my innermost feelings with people here. These are things my parents don't know, my friends don't know, no one knows...except those who read my posts and my therapist and doctor. Obviously I am unhappy about my scoliosis and that is why I am coming to this board. I appreciate everyone's comments, even if they are to tell me that maybe surgery is NOT right for me. However, I don't appreciate being attacked on a message board that is created for support purposes. I go about my life every day without sharing these feelings to anyone. I'm no crybaby. I went to college, graduated magna cum laude, worked my arse off to achieve while struggling with OCD and ADHD and I accept that I have challenges in life. I work full time and lead a normal life. I'm no depressed psycho sitting at home and dwelling on these things. But, as a person with scoliosis, I thought coming here and talking with others who had scoliosis and sharing these feelings would be a good thing. I'm sure there are many other people who feel as I do and are afraid to let it all out. What good is a message board if you can't come here and say how you REALLY feel??

I hope that you have your scoliosis under control and wish you nothing but the best.

**Mobee211** · 07-20-2006, 06:09 PM

MOCity and others

Thanks so much for responding. I do apologize if my post was too much information and it was NOT my intent to upset anyone at all! I did see my ortho on 7/18. He told me that with my curves, it is unlikely for me to find a surgeon who would operate. However, he gave me the names of some surgeons and the letter I posted is a rough draft of what I was planning on sending to one. I work every day on upping my self esteem and it is an uphill battle. I DO want this surgery, but right now I just want a doctor to sit down and TALK to me without writing me off. I just want to know all my options and want to know the truth about risks, complications etc. Then I will decide. Who knows...after hearing the whole 9 yards, maybe I will opt NOt to have surgery. But, I want to know and I want to talk to someone about it.

I do not have an appt with this doc yet. I called and they said the doc would have to see my Xrays and my charts before setting up an appointment. My fear is that after reading my charts he will dismiss me and NOT give me an appointment because my curvature is not bad enough. That is why I was thinking of sending the letter so that it would arrive the same day as the films/notes. But, if you really think that is a bad idea, please tell me! Maybe I should wait and if they DO dismiss me without an appointment, then I could send the letter?

anyway, thanks so much for all your support and caring. i'm alone in this as my parents have too much on their plates right now for me to involve them in my medical issues. i'm literally on my own in this and struggling to find my way.

hugs,
maura

**crookedspine** · 07-20-2006, 07:50 PM

Mobee, I am so sorry that you are feeling the way you feel. I read your posts yesterday, but did not respond because I was not sure how to respond to you. Today, I read your posts, and had to respond. You say that all the other health issues you have do not bother you, that it is only the scoliosis that does...therefore, I will focus on that. Most, if not all of us, have had scoliosis all of our lives. I was born with it and was limited on what I could and could not do. I had people all my growing up days who made fun of me. However, I CHOSE not to allow them to affect me. I CHOSE to accept my body, with its limitations, and not to allow it to live my life for me. Certainly, get a second opinion. However, I agree that if you send this to a doctor, he may cancel any appointment you might have. I feel strongly that before you have ANY surgery (or before you even begin to make a decision on it) you need to have an acceptance of your body. Surround yourself with people who accept you for who you are, not for what you look like. Happiness is a CHOICE that only you can make about YOUR body. In spite of my body, I have had a happy life...now with 2 kids and 5 grandchildren. Love youself. That's the best advice I can give you. Definitely...talk to us when you are down, but don't choose to focus on scoliosis. Focus on happiness. Linda

**Suzy** · 07-20-2006, 08:35 PM

Wow Mobee,

What a letter. You have been through a lot and have done a lot of good for others. Hopefully you will find the right Dr. to do good for you. My personal feeling is that when you talk to prospective Drs. you focus on the pain you are having and not the fact that your hump is unattractive. Your letter comes across a bit as though you are treating this surgery as plastic surgery. I don't think any Dr. would work on you if they felt that was what you were looking for. I read back almost all of your posts and you are in pain and that is something you might want to focus on getting taken care of with the wonderful side effect of loosing some or most of your hump. The hump is caused from spine rotation and your Dr. may or may not be able to correct it all. Are you aware of that? What if you go through surgery and still have SOME rotation left? (hump.) Then what?
You mentioned the following:
1. "I do not want to live with a hump on my back."
2. "I will not live to see 30 if I have to walk around
with a hump on my back."

I hope you take a look at what you are saying and how it may come across. Yes, here you can say what you feel. That is what I am doing. I honestly don't think you "would opt to not have this surgery", your mind seems to be made up according to your comments prior to that comment. I wish you much luck and hope you understand you may not be perfect after surgery.

**jaring** · 07-20-2006, 08:36 PM

How others see us and our scoliosis

I just wanted to reply on how others see those of us with scoliosis in hopes of cheering you up a bit... I have fairly bad curve, borderline surgical and wore a back brace in high school. I was really self-conscious until I started to talk about it with friends. Most "regular" people really don't pay enough attention to the humps and curves to notice that you have scoliosis. In high school, one of my close friends and I both had scoliosis and wore back braces. The funny part - neither of us knew the other had it and wore a brace until after we graduated and were out of the braces. We even knew what to look for and didn't see it! People to this day (I'm 30 now) can't tell I'm crooked with a low hip on one side and a high shoulder on the other. I have never had anyone comment on my crookedness. I don't wear layers or try to hide the scoliosis either. When I tell friends (or even aquitances) I have scoliosis and am crooked, they look real hard and say they can see it, kind of like they are saying it just to appease you. My husband tells me to "quit trying to be sexy" when my shirt keeps falling off of one shoulder. He doesn't remember that I have scoliosis and no matter what I do a shirt won't stay on that shoulder.

Anyway, in conclusion, your friends focus more on you and your personality rather than your scoliosis curves. On the other hand, strangers often don't pay enough attention to notice. Think about it, how many people do you notice on a daily basis with scoliosis? There are a lot more that you don't notice. Best of luck!!!!

**lelc2002@yahoo** · 07-21-2006, 06:08 AM

Maybe wanting too much out of this...

Let me chime in to say I have a horrible hump that I do feel even my Dr. winced at at the 1st appmt.... I would never initally, go into this surgery just to reduce the hump..But I can say now with less than 2 weeks to go, & with how major this operation is & all the pain involved, is it too much to ask that if he can do something about it, he does??!!! First things first, & balance & reduce the curves but to go thru something so painful like this, might we all hope for a cosmetic change too?

**Mobee211** · 07-21-2006, 07:17 AM

I know the sugery cannot correct the curve 100%. I also know that in order to reduce a rib hump, a thoracoscopy is required and even that cannot correct it 100%. My rib hump causes me excruciating pain. I also have a sneaking suspicion that the radiologist at my docs office is NOT readig my films right. I have seen them and compared to what I see online when I google a 35 degree curve, and I must say, mine looks larger than that. Also, how cna I have sucha prominent rib hump with such a relatively "mild" curve???

**Singer** · 07-21-2006, 07:47 AM

my two cents

Mobee, I think the thing to remember with surgeons, is: they are incredibly busy people who can barely remember the biggest details about their patients, let alone the more subtle, emotional aspects of their patients' personalities. I hope you've reconsidered sending that letter. You will get much farther with your doctor if you adopt a businesslike attitude and avoid emotionalism.

The advice you've gotten thus far from everyone has been great; I hope you are able to take it to heart. I looked at your website for the colon issue; it's great. I would suggest trying to approach your scoliosis in the same courageous and upbeat manner that you've obviously been able to accomplish with your other medical issues.

One final thing: even though it's tempting to share your innermost feelings on the internet, it's not really the place to do so. If you'll notice, most people on this forum are honest but very aware of how their posts will come across to others as well. In other words, we are all trying to boost each other up, not burden them with our innermost demons. That's what family, friends, and therapists are for.

Good luck.

**Singer** · 07-21-2006, 08:04 AM

de-humped

Lynne -- of course Boachie will reduce your hump!! I know what you mean -- I began this process saying that I didn't care about the cosmetic part of it either -- but now I'm starting to wonder if my hips will be evened out enough that I can start wearing skirts and dresses again -- and tuck in my clothes again!!

**HGD24** · 07-21-2006, 10:37 AM

Mobee,
I am 17 months post op and can tell you that this surgery is not a cure all for self esteem issues. I was not at all self conscious about my body until after my surgery. I was then so focused on the changes my body was going through that now I notice the slightest change/difference. I've discovered that my right breast is now much smaller than the left and is pulled slightly towards my underarm and that because a rib was removed on the right side and it grew back flatter (which is the case when anyone has a rib removed), my left rib cage sticks out further than my right. I'm learning at 31 years old to deal with self esteem issues and it's not easy.

I can also tell you that I was totally prepared for the physical pain that surgery was going to cause; however, I had no idea about the emotional toll of having such extreme surgery. I am not the self-pity type and rarely cry; however, I spent more nights than I can now count crying because of the frustration and exhaustion I was experiencing while recovering. Frustration over having to learn how to walk, shower, get dressed, etc and physical and mental exhaustion. Thank God I have a loving, caring husband who was by my side through it all, without him, I don't know what I would have done.

What I'm trying to say is to please consider all of the implications that this surgery will bring, both good and bad. A great surgeon will want to be sure that you are wanting this for the right reasons. Your case reminds me of someone who wants plastic surgery to feel good about themselves. A new face, a new chest, or less fat doesn't make you happy for very long. Soon the same old issues or new issues always arrise and the person is left feeling horrible again.

I wish you luck in your journey, with or without surgery.

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