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Thread: Hi...I don't really want to be here. Help?

  1. #1
    Join Date
    Jan 2007
    Posts
    9

    Unhappy Hi...I don't really want to be here. Help?

    Hi all...hang in there with me, please.
    My 12yo DD just got diagnosed. Jr. High sent home a letter saying we should check it out. We went to Pediatrician in November and he ordered an x-ray. Said it had a 12 and an 18 so he would like us to go to Orthopaedic 'just to be sure.' We finally got in first week of Jan. He looked at her, "hips straight, shoulders straight..lets do another x-ray". "Wow!" he says, "she has a 27 degree curve." Wow, is right..what happened to 12 and 18.... what happened to 'just to be sure'?

    She gets fitted for her brace tomorrow. The shock is wearing off. But when I start thinking about the day-to-day future of what this life will become for her and for our family...it is still paralyzing to me.

    How do you all make it to every 3 months to see if 'the curve' (picturing the creature from the black lagoon) has gotten worse? How do you make this all seem ok and normal for your child when I know you all have to deep down hate it for them?

    I just feel so angry right now that she has to go through all this... and yet, I KNOW there are so many worse things and that we are very lucky and blessed... but I just don't want her to have to go through all of this! <whine whine whine>

    Any and all support, slaps, kicks in da butt...etc, would be appreciated!

    Whiney new scoli mom <ugh>

  2. #2
    Join Date
    Jan 2007
    Posts
    65

    Take a deep breath

    Ok, here you go.

    First a little condolence. I'm so sorry you have found yourself here, where you don't want to be, and you have my prayers and support. Everyone here has gone through what you are experiencing and believe me, it is miserable...but you CAN do it and it is going to be all right!!! Just take deep breaths when you can't think of anything else to do.

    Second, a little encouragement. You are in the first stages of learning about this and the first part is the worst. You dont really know yet what is going on and it will take some time to see the docs and get everything figured out. Actually, its the "not knowing" part that is the worst and it sounds like you are half way through that part. You are not alone. We've all been there, and many of us will be back there over and over again. We can help you when you need support and encouragement and there are many parents on here who can give you good sound parent advice for dealing with docs and what questions to ask for various medical conditions. Stay plugged in and this community will be there for you.

    Third, a little gentle butt kicking. During experiences like this, when you lose something important to you that you have been planning on, it is very normal to go through a grief cycle. Even though you haven't had a loss by death, in a way, your hopes and dreams for your daughter have been taken from you. So you can fully expect to experience emotions of paralyzation, denial, anger, bargaining, fear, depression, and yes, finally acceptance. Don't fight these emotions, they are a healthy part of the healing process and if you are going to help your daughter build a new life with new hopes and dreams you need to get to the acceptance stage. It will take some time but you will come to realize that just because your daughter has scoli does NOT mean that she wont be able to dance or play soccer, or be an olympic champion, or president of the United States. Some things will obviously need to change, but many, if not most people with scoli live very normal lives.

    Also, remember, you are not the one having to wear the brace, or have surgery, and your daughter is feeling these things much more acutely than you are. If you are afraid, she will be 10 times more afraid. She needs to know you believe this is NOT the end of the world, but the beginning of a new and interesting path in life full of challenges most people will never get to face and overcome. She needs to know you still believe in her and will be there to help her through all the challenges she will face whether from scoli or other, more normal events in life. Life is hard. Life is unfair. Get over it and move on. Start solving the problems life has thrown at you and then find someone else to help do the same.

    None of us want our children to suffer or have problems. I would give almost anything to be able to run and play with Spencer like a normal little 10 year old boy, but would I give up the lessons and experiences of the last 10 years for it? Mmmmm, I don't know. I see the person Spencer is today and the person I am today and, yes, it has been a high price to pay, but the growth we have had together going through all of this is, to me, just as valuable. And besides, if we didn't have these challenges, we would have others. And who would want a life without a few mountains to climb, or dragons to slay? I firmly believe adversity breeds heroes and champions. Maybe your daughter is the next one.

    Well, sorry for rambling, I guess you touched a nerve. I hope something here is helpful to you and, truthfully, I will keep you in my thoughts and prayers.

    By the way, if you haven't signed your daughter up on spinekids.com, I would really recommend it. The kids in that cyber community are really remarkable and she will find a lot of support there for herself.

    Good luck and keep us posted.

    Robert
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  3. #3
    Join Date
    Jan 2006
    Location
    Southern California
    Posts
    59
    Wow - Spencer's Dad -what an amazing post. You reflect so well the emotions and process of working through the whole scoli experience and your advice is awesome. My daughter is now 16 so we've had 4 years of this experience. The only thing we've not come to is surgery, although it could very well be in the future.

    To "I don't really want to be here" - you might want to consider the SpineCor brace for your daughter (read the Spincecor threads under bracing for a wealth of info). It is much more comfortable, less visible and has numerous other advantages - a major one being better compliance. Hang in there, as Spencer's dad said, it will get better and you will get to the other side.

  4. #4
    Join Date
    Jan 2007
    Posts
    5

    I know exactly how you feel

    We are at a very similar place. My daughter was diagnosed with scoliosis when she was 8. We would go to the orthopedist every 3 to 4 months to monitor her curve. In Oct 2006, her curve was 27 degrees, but my dr. still wanted to wait. We went back to the orthopedist Jan. 5, 2007 (3 months later) and her curve was at 39 degrees. Our orthodpedist said our options were bracing or investigate whether she was a candidate for vertebral stapling. I set up a appointment with surgeon who does vertebral stapling, but in the mean time I did a lot of research. I was seriously considering the Spinecor brace as I thought it might be a better choice for my daughter. However, my doctor was not supportive of that brace. We finally had our appointment with the surgeon. He felt Zoe was a perfect candidate for vertebral stapling. We have decided to go that route. She is scheduled for surgery on Feb 15. Now, I just hope her curve does not progress too much before surgery because she would no longer be a candidate.

    Since we have made our decision to do surgery, I have been able to sleep. Having a plan makes things easier. I spent alot of sleepless nights just worrying about what to do. I just want you to know that others truly know what you are going through. I don't want to be here either!

  5. #5
    Join Date
    Jun 2005
    Location
    Austin, TX
    Posts
    96
    My Baby Girl,
    Just wanted to let you know that the way your daughter's diagnosis went was very similar to mine. I got the letter in jr. high at age 13. We went took it to my pediatrician and she said the same thing, that it didn't look severe, but just to be sure to go see an ortho. By the time we got the first x-rays, I think my curves were around 30 (I have exact numbers at home, if you are interested in my rate of progression). They decided then that I should be braced. I wore my brace 10 hours a day. In my follow up appointments my curve was progressing dramatically, and about 6 months or so after I started in the brace I was scheduled for surgery.

    It all happened really fast, but it just seemed like it was all a matter of fact...this is what is wrong, this is how to fix it best, so I was all about fixing the problem, plus I kind of enjoyed the extra attention I was getting.

    It meant a lot to me to not see my parents worry, and they had the same mind set, that there were many options of fixing the problem, and we took a proactive attitude towards it. I'm sure if they weren't so positive, I wouldn't have been so optimistic, so I encourage you to stay positive and brave for your daughter.

    As far as how fast your daugther is changing, I'm sure she is hitting a growth spurt, and that is why it is happening so rapidly. Just be thankful that you have caught it now and can do something about it. (Just read some of the posts on here of how people have gone through a lifetime of pain because it wasn't detected early enough)
    There is a ton of support for you here, so feel free to ask all kinds of questions!

    ps...Spencer's Dad- you really hit the nail on the head, great post!

    sorry so long...
    Harrington Rods in 1991 at age 15
    Surgery at Scottish Rite in Dallas, TX

    Fused from T-4 to L-3

  6. #6
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Thanks for sharing, Robert. Very well said. The only thing I would add (not to take away anything) is that a long time ago, I realized we had to re-define what "normal" is at our house. Normalcy goes out the window sometimes, and understanding that the new normal is just different - not necessarily worse or better - but different. My family's "normal" is probably very different from yours or someone else's. That's okay. Knowing that normal is different for everyone has helped me get through many trials. That, and when people say "you have too much on your plate" I say, "I just need a bigger plate". Thanks again.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  7. #7
    Join Date
    Jan 2007
    Posts
    18
    Gosh, your experience sounds very similar to ours. My sister found my son's scoliosis in October. The pediatrician had xrays done and the radiologist said it was an s-curve with 18* thoracic and 15* lumbar. She referred us to a pediatric orthopedist who measured the xrays in front of us and said it was a 30* thoracic curve. Two days later he was getting fitted for a brace. We were in shock.

    Your family has some tough days ahead when that brace goes on. We had a mantra to recite "I'm tough--I can do this". Within a month though that new normal should kick in and life will be better. It will be even better when the followup visit indicates that the brace is working. Hold tough, educate yourself (without making yourself too scared), and figure out how to motivate your child. We worked out a brace-wearing schedule with "prizes" for reaching each milestone of hours.

    Remember too that while you're in this for the long haul you have to take it one day at a time. Bite by bite, anyone can eat an elephant. And you're not being whiney. Shut your bedroom door, have a good cry, then move on.
    Best wishes!

  8. #8
    Join Date
    Jan 2007
    Posts
    9

    Red face You all ROCK!

    Thank each and every one of you. Especially Spencer's Dad. I asked and received..and believe me it was hard to ask... Your replies mean so much to me.

    I have a ton of questions but I can't seem to find the appropriate thread to ask them all. I guess I just don't know how to work this blog thing. I have never done anything like this before.

    How do I ask questions about various and unconnected issues?

  9. #9
    Join Date
    Jan 2006
    Location
    Tasmania
    Posts
    259
    Hi my baby girl. On the site there are a lot of Headings under which you can post new threads just like you did here. And if the questions are about ideopathatic scoliosis and anything to do with it, well you have done it on this one.

    Please dont worry as people have said there is heaps of support here
    , just ask away, start new threads about new questions and generally go for it.

    I truly wish all you parents and adolescents all the very best, I loved Spencers dads post.

    Regards
    Macky
    Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
    Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

  10. #10
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    My Baby Girl,

    Welcome. I really can't add much to the amazing responses you got - such great advice - I think everything I could have said has been covered.....very well, I might add.

    Some kids adjust very well to brace wear. Others not as well. Someone suggested checking out the Spinecor thread. It's an option that might work for your daughter and definitely worth looking into.

    May I suggest one other option that you might want to research - vertebral body stapling. It's a less invasive surgery (compared to fusion), which you will see from my signature my son had, and is "an alternative to bracing" for many kids. For SOME, it could also make fusion surgery later on less likely. Just another option that's out there.

    In any case, luckily, you don't have to make any quick decisions. Scoliosis is rarely an emergency situation. Someone said that the "finding out" part is the worst - I agree. Take some deep breaths and know that we are all here for you and we have all been where you are.

    take care,
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  11. #11
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    My Baby Girl,

    It always seems to be a shock when our children are diagnosed with Scoliosis, but when you get conflicting information from the start, it just makes it that much harder. My daughter was diagnosed by our family doctor at her 12 y.o. checkup. He said it looked very minor and that he would monitor her back, but just to be safe he wanted an x-ray done. He thought the curve was only about 15-18 degrees. We immediately went for the x-ray and they wouldn't even let me leave the building! When I asked to see the degree, they showed me a paper that had the results written on it and immediately told me our doctor was on the phone and wanted to talk to me!!! Her curve was 36*! Thirty-six degrees is a lot more than 15* or so! What a shock!

    Anyway, welcome to NSF. You've found a great support system here and don't worry if you post your questions in the wrong section. No one will mind.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  12. #12
    Join Date
    Oct 2006
    Posts
    132
    I just wanted to welcome you. You have already gotten great advice.

    I know the shock but our case is a bit different.

    My DH has scoliosis so it came as no shock to me when during the sports physical my daughter told me she had a curve. That was a year ago, he told us to just watch it & see if it looked worse the following summer. I'm fully expecting ALL my kids to have scoliosis to one degree or another.

    That's what we did. This summer it looked worse, he referred us to an orthopedic surgeon, got x-rays and OH MY...her main curve measured 42 degrees. WHAT? I was fully prepared for the bracing...I was NOT prepared for what I heard about possibly surgery. Looking at my DD there is no way you would think she had a 42 degree curve, especially because I know what my DH looks like & it's more obvious.

    We were shocked. My DD is now in a Boston brace and although complains (who wouldn't?) she is good about it. In our case, having her dad with scoliosis (never treated because it was caught too late) made the future not so overwhelming.

    Plus, in DD's case because she was getting a brace that meant shopping for new clothes, so that was a bonus as far as she was concerned.

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