From: bounce-scoliosis To: scoliosis-digest@ai.mit.edu Subject: scoliosis V1 #690 Reply-To: Errors-To: bounce-scoliosis Precedence: bulk scoliosis Friday, 2 January 1998 Volume 01 : Number 690 Today's subjects for scoliosis and scoliosis-teens: Surgeries and Braces [Sherri Lin ] Thank you ["Sindy S Green" ] Opening up my soul to you ["Sindy S Green" ] Kaneda rods ["Sindy S Green" ] Thank you and happy 1998! [EarthLady3 ] Re: Opening up my soul to you [Peggy ] Re: Opening up my soul to you [CRYSTY19 ] Re: about us! [Silberkrmf ] Re: to Melanie [Silberkrmf ] Re: about us! [Peggy ] ---------------------------------------------------------------------- From: Sherri Lin Date: Thu, 1 Jan 1998 10:01:52 EST Subject: Surgeries and Braces To Jeanie: I had wondered how your son was doing, following his surgery. It was great to hear from you! Please keep us up-to-date, as I feel that's what this list is for -- sharing our experiences with others, as you have done. My son's curves also progressed rapidly, and although he is now in the Copes brace and treatment program, we never know what the future holds. I will continue to share his experiences with this method of treatment for those who are interested in how the Copes brace works on curvatures over 40 degrees. To Steve: Thank you for a wonderful message on both sides of the issue. We all face fears and uncertainties with this disease, and everyone should be supported for their choices and decisions. I, for one, thoroughly enjoy hearing what each person has to say about their decisions. It's what we are here for -- sharing our experiences and supporting each other. To Peggy: For those who have forgotten and perhaps thought you were "anti-surgery", you faced major surgery with your very young daughter recently for a condition relating to her scoliosis. And she is also still wearing the Copes brace, I believe. You and your family have had to make some very difficult decisions regarding your daughter's health, and I admire and respect you and your daughter's strength and positive outlook. Thanks to you, too, for sharing your experiences and staying on the list. To Everyone: I hope to hear from many more over the upcoming year regarding their surgeries, bracing, and treatments. And, hopefully, their choices won't be put down. Remember that bracing *has* worked for many. Surgery *has* worked for many. We must remember that each case is different, and each family must choose what they feel is best at the time. Just because a person chose another method of treatment, that doesn't mean they are *against* what someone else chose. So, let's continue sharing our experiences, our treatments, our follow-up appointments with doctors, and continue to help others who come to this list for information on scoliosis. Wishing a happy and healthy 1998 to everyone! Sherri Linsenbach ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Sindy S Green" Date: Thu, 1 Jan 1998 11:08:27 -0000 Subject: Thank you Thank you. I have never felt more love and support in my life. Thank you for hearing my cry. I WILL have faith in myself. I'm almost there. I thank God I found y'all just in time! To a healthy 1998! Love, Sindy ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Sindy S Green" Date: Thu, 1 Jan 1998 13:12:07 -0000 Subject: Opening up my soul to you Hi y'all!! I want to share something. Hope I'm not out of line here. In 1993, my best friend drowned after successfully saving a 5 year old little girl up on Lake Ouchita in Arkansas. I was devastated. Then, 5 months later, my Mom and Dad left Texas and moved to St. Simons Is., Ga. It was a "good thing". But it left me all by myself. I went into severe depression. I got help though. However, I suffered for 2 more years trying to deal with much loss and no closure, etc. My best friend, Penny was married to another one our best friends and we were always together. Had our kids together, etc. We loved being with each other. They had a great marriage. I didn't. I couldn't understand why God would ruin something so good. Why not me? I stayed angry for a long time. But through counseling and the anti-depressant drugs, I dealt with it all and became strong once again. I'm o.k. and will probably never fall into that "pit" again. I do always feel like there is still a little "stuff" left to deal with. But I'm coping with life, so "I'll deal with that later". I've come close over the last couple of months, but have worked hard to stay strong and not allow myself to go there. Well, this morning, I realized that what I have left to deal with is the scoliosis. I really believe I "blocked" the fact that it was still there, but if ignored, would go away. for almost 25 years, I hid my curve so well, that all my friends are shocked. I would always lean on something, or stand real cute on one foot! This was all done unconsciously! I have begun to notice now how I walk, stand, etc. and I'm truly amazed at how hard I've worked to hide it. I can even ignore the pain if I have to. So what I'm sharing with you today is the realization that what ever little bit of depression I have left is going to disappear soon because I'm taking action. I'm looking forward to feeling better and looking better and that's what will make my depressed feeling go away. I've been depressed because I haven't felt good. WOW! That is a major thing for me to say. I haven't felt good. I'm ill. And it's o.k. because I'm doing something about it. Getting help for yourself is one of the hardest things to do. Because only you can do it. No one can get help for you. You have to be ready and accept the fact you need help. Then, you can let go and take comfort that the worst is over and it's gone get better from here on out. I feel good about my decision to have surgery--physically, emotionally and mentally. I believe you must get all 3 balanced to go on. The fear thing is both emotional and mental. That is the hardest part for us scoli people-- to get that sense of o.k.ness.(<---cool word, huh?) Sometimes, the battle in your head needs to be played out with another person, i.e. a psychologist, friend, spouse, journal and even this list! I think I'll go see my psychologist this week, just to deal with the scoliosis issue. I need to dust off my mind and come to grips with the fact that this is not a dream, I have it, it has to be fixed and, and it's scheduled. Do y'all know what I mean? Depression is a hard thing to talk about. My husband doesn't understand, but allows me to get help. I love to type, and my best feelings and thoughts always come out on the keyboard. I hope I haven't stepped out of line sharing this stuff. Y'all have made me feel very safe to where I want to share this in the hopes that someone else out there benefits. It's amazing that the closer I get to Jan. 15th, the more prepared I become. Just when I think I have all my i's dotted and t's crossed, something else happens to make me a little more prepared. I only got my new computer in Sept. and don't know how I would be here today without the Internet. I'm so glad I found y'all. Thank you for listening to me. Love, Sindy P.S. Don't forget Jenn's surgery is Jan. 22nd. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Sindy S Green" Date: Thu, 1 Jan 1998 13:18:11 -0000 Subject: Kaneda rods What are Kaneda rods??????? Sindy ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: EarthLady3 Date: Thu, 1 Jan 1998 14:31:56 EST Subject: Thank you and happy 1998! <> Dear Michelle, What a kind post - thank you. I wish you and your son only the best and know that he's lucky to have you by his side. Thanks also to the other thoughtful folks who have sent me their best wishes privately the past few days. Your support is heart-felt and has made a difficult decision a bit easier. Even though I do not write as often as I used to, I wish each of you abundant success in those decisions you make for yourselves and your loved ones. Happy 1998! EarthLady ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Peggy Date: Thu, 01 Jan 1998 15:38:06 -0800 Subject: Re: Opening up my soul to you Sindy S Green wrote: > > Hi y'all!! > I want to share something. Hope I'm not out of line here. > ... Sindy, I for one don't think that you are at all out of line. And I do think that the closer that you get to surgery the more at peace you will be. The worst part is the unknown and the decision making process. Once you have gathered the most information you can and set out a plan, most of the battle is won. I didn't realize how much of a burden it was researching and thinking about Natalies options was on me until it was lifted when the plan was set in motion. We have been very blessed and her recovery has been remarkable, her surgeon couldn't be more pleased, he is amazed with her progress. It is amazing how many other things I can think about now that I don't have to totally obsess on finding the best treatment for her. Depression is a very real part of many illnesses and needs to be addressed. I am sure you are not alone with this on the list. As I have said, I don't know much about surgery, but I have heard that with many serious surgeries post surgical depression is common. Maybe someone who has been through this can advise you how to work through it. But I guess the reason I bring it up is so that if it happens you know that it is just part of recovery and that you are not sliding back into that "pit". I think you are very brave to share your feelings and I think that many that are secretly fighting the same depression problem are comforted to know that they are not alone. Take care, and keep the positive attitude. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: CRYSTY19 Date: Thu, 1 Jan 1998 17:55:42 EST Subject: Re: Opening up my soul to you FOR JENN & SINDY GOOD LUCK TO YOU BOTH ON YOUR COMING SURGERY"S MY PRAYER'S WILL BE WITH YOU. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Silberkrmf Date: Thu, 1 Jan 1998 22:18:10 EST Subject: Re: about us! Hi! I'm Karen. My daughter is six and is in a brace. aShe is diagnosed with a 27 degree curve. She is very good about wearing the brace. How did your daughter adjust to the brace. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Silberkrmf Date: Thu, 1 Jan 1998 23:37:24 EST Subject: Re: to Melanie Hi Melanie. I'm Karen. My daughter is six and hs a 27 degree curve. She is in a 23 hour brace. I was told tht gymnastics is good for her because it strengthens the muscles. I was told that for now it is a great source of exercise. Keep in touch ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Peggy Date: Thu, 01 Jan 1998 23:45:54 -0800 Subject: Re: about us! Silberkrmf wrote: > > How did your > daughter adjust to the brace. > ... Hi Karen, I am not sure who you were addressing this to, but my daughter Natalie is 6 and in a brace too. We are using the Copes bracing, exercise, nutrition, and Chiropractic program. Natalie was very good about the brace when she first got it. But within a short while of getting it she was diagnosed with Chiari I and Syringo Myelia. (Her Chiropractor recommended an MRI because many children who develop scoliosis so young have been found to either have mal formed vertibra - which she didn't have or some form of cord complications - which is what we found) When she was diagnosed we discontinued the brace until after the neurosurgery and recovery period. She is just getting used to it again after the surgery and and it is a fight. I can't say I blame her, she has been through a lot and is getting fed up. She does wear it though with much complaint. She is too small to take it off by her self or I am sure she would. I try to take her fun places while she is wearing it to distract her and I am hoping she will begin to accept it again as she had before. I bought her a bunch of stickers to decorate it and that helped for a while. Peggy ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ End of scoliosis V1 #690 ************************ The scoliosis-digest is a daily encapsulation of messages sent to BOTH the scoliosis and scoliosis-teens mailing lists. You can determine which list a message above was posted to by looking at the message footer. For help on using the scoliosis-digest, (especially unsubscribing) send an electronic mail message to "scoliosis-digest-request@ai.mit.edu" with one line of text: "help". To post your own message to the scoliosis, send an electronic mail message to "scoliosis@ai.mit.edu". To post your message to scoliosis-teens, send it to "scoliosis-teens@ai.mit.edu". Also, see the scoliosis web page at "http://www.ai.mit.edu/scoliosis/scoliosis.html".