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Mobee211
07-19-2006, 02:02 PM
that I will be meeting with in November...yes that is right....all booked until November. I'm PETRIFIED that he will write me off and not even consider what I have to say.

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Dr. Rand,

I am writing this letter in hopes that you will not dismiss my case simply because my curvature is less than 50 degrees. While my curvature might be considered ďmoderate,Ē 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 friendís 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 donít 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, Hypothyroidism, Scoliosis, high blood pressure, and a benign brain tumor. Thatís the short list. 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 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. 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 ďhump.Ē 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 ďhumpĒ 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. Normally it is just a dull, throbbing pain, but occasionally it is sharp and severe. I have heard that scoliosis surgery is a difficult procedure. Iím 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 donít want to feel awful about my body and my deformity anymore. I donít want to lose any more of my precious youth. I donít want to have the surgery this yearÖmaybe 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. It is my body isnít it? If I understand the risks, and have thought long and hard about this (heck I just want to have the option of surgery, Iím not saying I will ultimately have the operation) donít I have the right to control my own body? Iíve been through a lot and I DESERVE to have a straight spine. I donít deserve to walk around with a hump on my back. It is time for me to be proactive and say enough is enough. I have reached my breaking point and I am desperate. In all honesty, and this is something I have discussed at length with my therapist, I know in my heart I will not live to see 30 if I have to walk around with a hump on my back forever. The hump on my back reinforces all of the feelings I have about my body bad, ugly, stupid, hideous, freakish, worthless, sub-human. I donít feel like a woman. I feel like some sort of monstrous creature. I donít deserve to feel this way, and I shouldnít have to feel this way.

I appreciate you taking the time to read this letter. Hopefully you will not write me off.

Sincerely

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
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
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
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
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
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
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
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.

jelysc613
07-21-2006, 11:07 AM
I'll vouch for that, HGD24... there will always be something about your body that you'd like to change and that you're unhappy with. If you are able to fix it, you will find something else. I know you said you've seen counselors, but you need to find the right one. There is no reason you should have to live such an unhappy life. Yes, you have had a number of medical issues, ON TOP of scoliosis. But so have I! So have many people in the world. You need to stop focusing on the bad and look at the good and the beautiful in life. Of course you're depressed... badness is all you can see, staring you in the face every day! I do feel for you and I truly, with all my heart, hope everything works out for you and that you are able to find happiness. But I kind of agree with Singer... and you tend to repeat your issues over and over and over, in each post. You need someone to talk to, someone to vent to... but people with problems that are just as severe or worse are not the best listeners when things only come across as constant complaints. Maybe you haven't found the right therapist yet, or the right balance of meds, or the right method of healing for you... but you need to keep seeking them out. Yes, keep on doctors to get them to operate on you and heal you of your physical pain... but work even harder on finding someone to fix the inside of you first. GOOD LUCK!!!! May you find the peace you're looking for :)

Mobee211
07-21-2006, 03:57 PM
Many thanks. No hard feelings. sorry if I upset you all...not my intent. I won't post again since it is clear that I upset you but would like to thank you all for support/advice.