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Thread: New with lots of questions

  1. #1
    Join Date
    Jan 2006
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    25

    New with lots of questions

    Hi Everyone! I have been getting lots of information from this forum.. So, now I have some questions for you all.

    First a little background: My 15 1/2 yo son was diagnosed with Adolescent Idiopathic in July by our chiropractor. He had grown about 9 inches in 2 years! Because we prefer alternative treatments when possible, we did physical therapy for 4 months with no noticable result. Last week we took him to Shriner's Hospital in Spokane, WA to see Dr. Ferguson. My son, Graham, has 3 curves - Upper Thoracic T1-T7 45*, Lower Thoracic T7-T12 64*, Lumbar T12-L4 45*. They are recommending spine fusion surgery to be done sometime within the next year. They also did a bone-growth analysis and anticipate that he will grow more ( he is 5'10").

    So, I guess I will start with the most obvious questions:
    1. Is this recommendation what most of you have heard from other doctors for this degree of curve? They told us that anything over 55* will only progress and that bracing won't help.

    2. Has anyone had any success with alternatives to surgery at this level?

    3. How do you decide to have the surgery? My son is extremely healthy and active. He has had no symptoms at all, no pain, etc. We only noticed the curve because he was riding his bike in front of my dh and leaning over the handlebars. He is a junior black belt in Karate, training for his Sr. black belt in May. How do you decide to take a seemingly healthy, strong person and debilitate them for 1-2 years hoping to make the rest of their life better? Maybe that sounds a little extreme. It just seems that if he were sick or in pain it would be a much easier decision. I know that other parents will understand this questions.

    So, that is enough to start with. You all seem to be a very supportive group and I am hoping to gain some knowledge and some peace from your responses.

    Thanks so much!
    Katy

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
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    6,801
    Hi Katy...

    Unfortunately, the great website that had a risk of progression chart has been taken down due to lack of funding. :-( In general, however, any curve over 50 degrees has a huge risk of progression, especially in skeletally immature individuals. I'm sorry that your son's scoliosis wasn't dx'd earlier, when a brace has a reasonable chance of stopping the progression. At this point, I personally don't think you really have any choice other than surgery.

    Regards,
    Linda

  3. #3
    Join Date
    Apr 2005
    Location
    the uk, between london and the south coast
    Posts
    142
    hi katy

    i think the main reasons for having surgery NOW (or within the next few years) are as follows:
    1 - recovery in teenagers/those in their early 20s is quick. i didn't believe my surgeon when he told me how quickly i'd feel better (although i'm 18, i'm not that fit) but he was right, i was feeling great after 3 weeks
    2 - it gets it out of the way and you can get on with your life
    3 - generally speaking (as in barring other complications or abnormalities) the smaller the curve, the easier the operation and the better the correction which leads to...
    4 - you acheive a better result when younger (again, generally speaking)
    5 - most people live with their parents and can be assured a good standard of post-op care and minimal disruption to their lives (rather than interrupting higher education studies, or a career or starting a family etc)

    yes, it's worth considering your current health status, but you also have to think long term: how quickly is he likely to progress, how much would you compromise by waiting?

    i was told that i would lose nothing by waiting a couple of years (i was offered surgery at 16 but i wanted to wait, psychologically, for me, it paid off, i went into surgery a much better person than i would've been 2 years before). i wasn't in pain at 15, but i was a year later, and i certainly was just before i had surgery. it's something to keep in mind, though many people stay pain free until they are 40 or 50.

    this might be hard but it's what i've seen - people with curves of your son's degrees don't get better through non-invasive methods. the sad nature of the scoliosis beast is that once it gets to a certain point, the best you can hope for is stability, and the worst case scenario is that it progresses.

    i think at his age part of the decision has to come from your son. i know he's a minor and you're responsible for him, but as a teen, it was always important to me to be involved. i hated my doctor talking to my parents and not me... but that's my issue not yours

    i think you need to speak to his doctor, ask for a really honest opinion on how fast he thinks progression might be, and ask your son what he wants, helping him to understand the full implications.

    i'm 6 months post op this weekend: i'm cleared to do whatever i like. i work in a coffee house and am hoping to start studying at university later this year. my doctor cleared me to get back on a horse at 7 weeks post op (my parents made me wait another 2 weeks) but i started driving and swimming again at 7 weeks... i run around all day and go out with my friends at night. i hope that reassures you a bit, if you have any other questions feel free to private message me

    becky
    diagnosed aged 14 (2001)
    braced from july 2001 to february 2003 to hold curves
    fused T11-L3 on july 16th 2005 (aged 18)
    Discharged by surgeon july 11th 2007 (aged 20 and almost 2 years post-op)
    scoliosis support forum

  4. #4
    Join Date
    Apr 2005
    Location
    Erie PA
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    49
    I agree with Linda...at this point, it's about the only way. I've never heard of anything else helping.

    To answer your questions -

    1. Is this recommendation what most of you have heard from other doctors for this degree of curve? They told us that anything over 55* will only progress and that bracing won't help. Most doctors say anything 50* and up is surgery level, others say 55* and up, so yes, this is the norm.

    2. Has anyone had any success with alternatives to surgery at this level? Not that I know of.

    3. How do you decide to have the surgery? My son is extremely healthy and active. He has had no symptoms at all, no pain, etc. We only noticed the curve because he was riding his bike in front of my dh and leaning over the handlebars. He is a junior black belt in Karate, training for his Sr. black belt in May. How do you decide to take a seemingly healthy, strong person and debilitate them for 1-2 years hoping to make the rest of their life better? Maybe that sounds a little extreme. It just seems that if he were sick or in pain it would be a much easier decision. I know that other parents will understand this questions.

    Well...really, it has the potential to cause a lot of problems later in life. The point is that he /is/ young, he /is/ healthy, so your son will be able to get through this much more easily than he would at, say, 40 when he did start feeling symptoms. After a certain age, most doctors don't even want to do the surgery, so this is the prime opprotunity.

    Secondly, you're most definitely not debilitating for 1-2 years. In adolescents, the spine will fuse completely within 4-6 months, and almost all activities are resumed at the 6 month mark, with the exception of football and hockey (got to hold off on those for a year). Personally, at about 3 weeks post op I was feeling more like myself, and now at 3 months post op, I feel absolutely 100% normal.

    I know you don't want your son to have to go through /any/ type of surgery, especially spinal, but it's really not as bad as you'd think it would be.
    Last edited by ScolioGirl; 01-11-2006 at 08:42 PM. Reason: spelling mistake :P
    I'm Karin. I had surgery for my scoliosis on October 13, 2005, and am doing well! I formerly wore a providence brace and did PT for treatment.

  5. #5
    Mary Lou Guest
    Linda,

    Maybe this will help. I got this information from Dave Wolpert's first book and his source is listed as: Scoliosis Research Society, 1982.

    Probabilities of progression in adolescent idiopathic scoliosis, prior to skeletal maturity.

    Cobb angle at initial detection - <19* @ age 16 0% 20-29* @ age 16 10%
    30-59* @ age 16 30% and >60* @ age 16, 70%

    Cobb angle at initial detection - <19* @ age 13-15 10% 20-29* @ age 13-15 40% 30-59* @ age 13-15 70% and > 60* @ age 13-15 90%

    Mary Lou
    Last edited by Mary Lou; 01-11-2006 at 09:03 PM.

  6. #6
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    Katy,
    My daughter was diagnosed with an 88 degree curve at the age of 15. Her only option was surgery. However, we tried for 1 1/2 years using alternative therapy (chiropractor) to no avail. It releaved some muscle tension, but thats it. We spent 1 1/2 years doing chiropractor, when a brace is what she really needed and may not of needed surgery in the end. Her back caused her a lot of physical pain, especially during basketball season. However, she would tell you today, that surgery on her back was the best thing that ever happened to her.

    My daughter is an athlete and it was tough to decide when to have surgery. Going from very active to not being able to do anything. Its pretty tough on them and they drive you nuts while they are recovering. They want to do stuff, but aren't allowed too. However, I think because they are young, they recover better than if it was you or I.

    On height, Crystal grew 2 inches from having her surgery done.

    You are concerned about debilitating an active kid. Don't be fooled. Crystal was back to school full time at three weeks post-op, when to her Jr/Sr prom at 4 weeks post-op. Back to showing her sheep at 12 weeks post op, and had a new job at McDonalds 16 weeks post op. Did it debilitate her? Absolutely not.

    Because of your sons age, and he still has a huge growth spurt left to do, his curve will more than likely get way worse.

    I was glad to see you use Shriners-Spokane. We use Shriners-Portland and do a five hour drive one way for appointments. If you end up with surgery, they are awesome. There only concern is for your child. They want to keep them as comfortable as possible and feel these kids shouldn't be in a lot of pain with all the medications they have to help them along.

    Surgery is a very scarey thing as a parent. I used to cry by the hours. I was so thankful for the wonderful people on these forums to talk to about what scared me. And, when someone says they'll see you on the other side, that is truly what it is. The other side of surgery and on the road to recovery.

    Keep asking questions and get comfortable with your decision. My husband and I let Crystal make her own decision on her back as she is the one that has to live with it the rest of her life. I feel her choice in having surgery was the correct decision.

    'til later,
    Nikki

  7. #7
    Join Date
    Jan 2006
    Posts
    74

    Parent of newly diagnosed 13 yr old son looking for help

    I have found many informative items on this site and was grateful to have this info to go to our first appt today with a pediatric ortho specialist.

    What we found out today was that my 13 year old son has 2 curves, the upper being 55 degrees and the lower being 75 degrees. Has anyone else had it this? The doctor said the only option is surgery, which she'd like to do in the early summer so he doesn't miss school, but nothing has been finalized. He has to have an MRI yet as well, and we are taking it from there. She ordered that because she is concerned about spinal cord damage....not sure I understand that as isn't that what scoli is? I'm the type of person who has to know everything that is going on, and any input is appreciated. The appt was almost 2 hours long today due to x-rays being taken, and we will be sitting down to talk at length once the MRI results are in, but I'd like to talk to someone before then that's been thru this.

    Thank you so much.

    Laurie

  8. #8
    Join Date
    Jan 2006
    Posts
    25

    Thanks so much!

    Thanks so much for all of your replies! I really appreciate all of you willing to share your experiences. I am going to share them with my son. It really helps to hear from those of you who are so active soon after surgery. That is one of my big concersn (other than the surgery itself of course).

    We were extremely pleased with Shriners in Spokane. It is only 60 miles from our home and of course there is no charge for anything they do - what a blessing! Nikki, I'm glad to hear you had a good experience with Shriner's as well. They really seem to care about kids!

    We go for an MRI tomorrow because they found a slight variation in Graham's muscle response from one side to the other and want to rule out anything neurological. Is this normal from your experiences? They said it will probably not show anything unusual, but they don't want to do surgery without knowing if they need to watch for something else.

    I'm sure I will have lots of other questions. I am really overwhelmed by the willingness of you all to share your experiences. It has already helped me tremendously.

    One other question that comes to mind is about siblings - I have 4 girls, ages 13, 10, 6 and 3. How did your other children (or brothers/sisters) handle the surgery and recovery? Did it scare them? Did you let them go to the hospital? I am thinking we could tour the hospital as a family before the surgery so they will see where he will be for a week. Does that sound like a good idea? I know the older girls will want to visit him in the hospital and play Nintendo :0)

    Thanks again! You are all wonderful!

    Katy

  9. #9
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    Katy, we have two other daughters. How did they handle surgery? Well, the middle daughter stayed home at a friends house for a couple of days, until her dad came back after Crystal was out of surgery. So, she didn't see Crystal until she came home from the hospital. Our youngest daughter was just fine with every thing. Nothing bothered her and she was very anxious to see her sister. The younger two were 14 & 12 at the time of Crystal's surgery. The biggest problem was jealousy and it still is a problem. Crystal hasn't been able to do chores since her surgery, so the girls get pretty tired of it and refer to Crystal as "DADDYS LITTLE PRINCESS" because she can't do chores yet. So, there are issues, but we just have had to find ways to resolve the problems. We don't expect the two girls to fold clothes, dishes, etc., as this is something Crystal can do.

    I highly recommend you tour the hospital. We did. The only ones it may bother to see their brother are your younger two girls. I'd wait for a couple of days for them to see him. After surgery his face will be very puffy and he will have IV's and possibly other tubes. They are usually out within a couple of days and the swelling is pretty well down.

    'til later,
    Nikki

  10. #10
    Join Date
    May 2005
    Posts
    672
    Well, with all the good advice given I don't know that there is anything I can add. As far as deciding if and when to do surgery, I didn't want to believe that surgery would be the only alternative, but after researching & talking to others I realized that nothing else was going to permanently correct the problem. Once the rotation (in addition to the curve) of the spine became very apparent it really started to twist the rib cage out of alignment. This was I think starting to cause "body issues (self-consciousness) and certainly would cause other health issues if not taken care of. My son is very healthy and active and had no discomfort except last 6 months had started getting hip pain and pulled back and thigh muscles (left side). He is doing well at 3 weeks post-op, the pain from surgery is subsiding rather quickly, I actually scolded him a few minutes ago for lifting an almost full gallon of milk. (he is still restricted to lifting nothing over 2 lbs.) Overall, he is happy he had the surgery and I'm sure he would be willing to talk to either son of Momof5 or Inetzer. We did a hospital tour, and I'm glad we did. The surgical coordinator not only showed us the O.R., recovery room, etc. she also showed Joe the various tubes, i.v's he would be hooked up to after surgery and let him know what each and every one was for. Also saw a model of the spine and the instrumentation that would be used. It really helped us prepare mentally.

    To answer a question posed by Inezter, scoliosis is not necessarily caused by a damaged spinal cord. The MRI will show if there is a tumor or cyst, etc. compromising the spinal cord and if there is, then that would need to be treated first (a different treatment than fusing the spine). Running short on time, got to go, will check in later. Hope this was somewhat helpful.

    REnee

  11. #11
    Join Date
    Jan 2006
    Posts
    25
    Thanks for the continued input. I guess I am pretty much convinced that surgery will be the best thing. I just spoke with a friend of mine who had surgery in 1977 for her scoliosis and said it was the best thing she ever did.

    Nikki, thanks for sharing about your other kids. I can already predict some jealousy, especially from my 10yo as she thinks she is always mistreated anyway - LOL - I call her "cinderella". She says she does all the work around here (which is so far from the truth it should be comical). I think it's a good idea to be prepared for it anyway.

    Renee, thanks for sharing how your son is doing. You must be relieved to be 3 weeks post op! It's also nice to hear from someone else with a son having surgery. It is so much more common in girls. They said that Graham also has the rotation, so I think it is only because he is extremely strong from Karate that he has had no symptoms. That is basically what the doctor said also. I imagine it is only a matter of time, though, before he starts to have pain. I will ask Graham if he is interested in talking with your son.

    Thanks again for all your responses. I am happy to read them all as each one reassures me a little more. You are all a blessing!

    Katy

  12. #12
    Join Date
    Jan 2006
    Posts
    74

    Thanks!

    REnee:

    Thank you for the info. I'm sure my son would enjoy talking to your son once he gets over the shock of knowing he has to go thru surgery. I've tried to share some of the different sites with him, but he just isn't ready yet. I don't want to push him, but will let him know there are others who have been there that are willing to share with him.

    Thanks again!!

    Laurie
    lnetzer

  13. #13
    Mary Lou Guest
    Inetzer,

    Don't worry if your son isn't ready to talk to others yet or go to forums like this. My daughter was diagnosed about 2 1/2 years ago and had surgery a year ago and it wasn't until about 2-3 months ago that she would even look at SpineKids website. However, I always made it a point to tell her what I learned on-line from other parents/kids and I think it helped. Facing surgery for a teenager is hard.

    Before my daughter's surgery, her doctor ordered an MRI and CT scan. The reason for her tests was because of her size. Jamie is a very small young lady and her doctor wanted to check the size of her pedicles to see if he could use pedicle screws in her surgery. It helped him plan and prepare for her surgery because he was unable to use pedicle screws during her surgery. I'm glad we knew that going in.

    Mary Lou

  14. #14
    Join Date
    May 2005
    Posts
    672
    That was the same way with my son, Mary Lou. He only briefly checked out SpineKids and would walk out of the room if he saw me on the forum. I realized that boys/guys/dudes,lol don't really talk about how they feel about things, but if the boys have any questions Joe could answer them from the "boy" point of view.

    Renee

  15. #15
    Join Date
    Jan 2006
    Posts
    25

    CT Scan

    Hi again everyone!

    We just got home from Graham's MRI and had a message from the MRI Place (I don't know the proper name) that the radiologist had looked at the MRI and wanted to do a CT scan.

    Now of course it is Friday evening so by the time I get off the phone with the scheduling department it is too late to call the Dr. at Shriners to find out what the CT scan is for.

    Is this something I should be worried about? Of course my first reaction is "they found a tumor". Now I know this is probably overreacting. I see that a couple of you said your kids had MRI's and Mary Lou said that her daughter had both. They lady in the scheduling dept just said that there was something they wanted to get a better look at.

    Anyone have any words of wisdom for me? I am probably mostly looking for some comfort to ease my fears that they found something serious.

    Thank you all for being there.
    Katy

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