WOW! We want to say THANKS....

[Amymichele]

Hello all.
I am Amy, mother of 14 yr old Lacey. I have spent the last several hours scouring your forum, in between errands and kid chauffering, of course!
WHAT a complete BLESSING to find so many great folks willing to share your stories, advice and encouragement to those dealing w/ similar circumstances!!
I have even had time to read a few small portions of some of your posts to my husband this evening. He too, is thankful and takes heart in the fact that we now know of at least one place to turn with our multitude of questions, apprehensions, etc.
Lacey wore her brace for 2 yrs, like a trooper. Hoping against hope that it would serve to hold the progression of the curve.
Hers was about 15 when diagnosed. She was being checked every 6 months, but in the spring of her 6th grade yr, it suddenly worsened greatly.
She was running Track, and fighting a sinus infection. I took her to our family Dr. for antibiotics, and she gasped when she saw how much worse it was.
So, we went straight to our orthop. specialist. It was up to 45 or so.
On went the brace. This past June, tho, it had moved to 53. Lacey's curve is a backwards C on her upper right side, and it has caused her back and shoulder in that area to bulge out quite a bit.
Dr. believes that left alone, the curve will begin to close in on itself. That it can not sustain the position it is in, even tho she has most likely finished growing.
Our specialist comes to us highly recommended by our family practice doc(he has performed several surgeries on HER teenage daughter w/ cerebral palsy), and by my sister, whose daughter has been under his care for Perthes(not sure on the sp.)
We feel good about his experience, and respect his opinion.
Yet, this is THE most frightening trial I believe we have ever been presented with. She's our LITTLE GIRL!
THANK YOU all so very much for all your insight and most of all for your good hearts, that have led you to want to be an encourement to others.
Lacey WILL most definitely be reading as much as I can get her to read here

:) .

[mumof5]

Hi Amy, welcome.
I am sure that you find a great deal of support here. My daughter Amber had surgery 12 weeks ago tomorrow. Her curves kept on progressing after she had finished growing.
I hope that all goes well for your family and that your youngest ones curve stays where it is.
Best wishes.
Cheryl.

[jc3]

welcome amy,
i am pretty much new here too and our daughters curve just recently worsened quickly and surgery is also highly recommended here too. She is 14 and her curve now is 50 degrees and she still has alot of growth left to do according to her x-rays. It is a very hard decision for us as parents to make. This is the place to be for great support from other people going through the same thing.
Jennifer

[Carmell]

Welcome Amy and Lacey. I hope you find this a place for warmth and support. I believe that having an orthopedist (pediatric preferrably) who has extensive experience with patients similar to your daughter is the best start to treatment. Having 100% confidence in the surgeon is paramount. Spine surgery is NEVER an easy decision. Scoliosis surgery is rarely an emergent surgery, so take your time to find the right "plan" for her and your family.

Jennifer - I wanted to say the same thing to you - please find the right doctor who has the right "plan" recommended at the right time. This is the hard part for us parents (putting it all together). Being 14 and having lots of growth left in the spine could have a different recommendation and outcome than someone who is 17 and skeletally mature. A 50 degree curve is one that should be watched closely, but rarely does it need surgery immediately. Good luck finding the right options for your daughter.

My best,

[jc3]

carmell
thanks for writing. Our dr. said the same thing that scoliosis surgery is not an emergency. But she did say that after 50 degrees the curve usually does continue to progress into adulthood. I just feel that if she does need surgery i would rather do it now while she is only 14 and going into 9th grade than wait until she is older and has more things going on to miss out on. I would rather get this over with already and let her enjoy, she always has this on her mind for the past two years with batteling her to wear the brace, so many tears over this, i kind of just want to get this over with already.
we have an appointment with a very well know surgeon and we will see what he has to say tomorrow. Also, that is one of my questions tomorrow whether it is better to wait until she is skelletally mature. What are your feelings on that?
thanks again.
jennifer

[Carmell]

Hi Jennifer,

You asked my opinion about surgery sooner or later (depending on skeletal maturity). My gut feeling is (and depending on the surgery recommended) that there may be more risks for future problems if a surgery is done too soon. I've heard from enough families who's children had a fusion surgery before skeletal maturity and have gone on to have problems with spine imbalance (because part of the spine continued to grow while the other part of the spine was fused in place) and other things. If the surgeon recommends posterior only surgery, I'd be concerned that the anterior (front) portion of the spine may grow in a way that would cause a problem down the road.

I agree that having the surgery done sooner than later, and having it done with the child/patient is young and more likely to have a smoother recovery, and timing for the family, etc. are good ideas. I just worry that the "get it done now" attitude may not be the right one... Again, I don't know your daughter's details so this is ONLY my opinion. We, as parents especially, want to "fix" a problem our child may be having so there are no more worries. With scoliosis, that may not be the right plan.

If the right surgery is done, at the right time, then most scoliosis surgeries are successful and those patients go on to lead very active healthy lives, and don't bother to hang out on support boards like this.

Having said all that (rambling is what I do best, apparently ;) ) I would have an in-depth talk with the surgeon and figure out the best "game plan" for her, and the best timing for her and the family and any other details that may apply. Schooling is a BIG deal, but there's always a way to work those details out. My daughter has had idiopathic scoliosis since age 13. She is now 18 and at that borderline curve measurement (40 degree lumbar curve with "significant" rotation of the spine) where we may need to decide if surgery is better to be done now, as a teenager, than later as an adult. So many questions and very few answers. I'm finding that the idiopathic scoliosis is MUCH harder to make the "right" decision about than my son with congenital scoliosis. I guess his problem was (and still) is very cut-and-dry - he needed surgical intervention or his lungs would not have been healthy at all.

I wish you the best. I'll be curious to hear what the ortho says tomorrow about your daughter.

[mumof5]

We got 2 opinions for Amber's back and over the years with different problems/accidents etc we have talked to doctors alot about skeletal growth as well as growth in general. Generally (not always) a girl has finished growing approximately 2 years after her periods become resonable regular. I had one Dr. tell me it was 2 yrs from the first one. But most have said that because a girl may have one then the second months later, that the 2 yr guide starts when they are much closer and regular.
I don't know if that helps or not but it is something else to add to the list of things to think about and ask about.
Best wishes.
Cheryl.

[Amymichele]

jc3, it seems that our daughter's circumstances are quite similar, huh?
thank you, carmell & mumof5 for your welcomes.
can someone explain exactly what the anterior(front) and posterior(back) fusions mean? we have yet to meet with our surgeon concerning details, and the NEED to KNOW is getting the better of me now!
he ,so far as we can tell, only plans to put in 1 rod. i guess I don't fully understand why rods would be needed front AND back.
also...the term fusion, seems to indicate a permenant bonding of the spine to the rod. he described to us a process similar to bracing of teeth, where the rod and curved spine will be connected by wires, then the tension will pull the spine back into alignment w/ the rod.
so, I'm picturing some give when it's finished..space between the rod & spine and the wires stretching to over to the position the curve WAS in.
Does that sound like what most of you have?

Thank you for ANY input. Patience, I know, is a virtue! and yet....this appt can not come soon enough for us.:)

[Carmell]

Hi Amy,

When you meet with the orthopedist/surgeon, you may not get detailed answers to these questions. Some docs don't like to share the vivid details of what's involved in scoliosis surgery, but you, as a parent, have the right to know. Most orthos will explain (in English) what goes on, but some do not... just be aware.

Anterior fusion is sometimes done in conjunction with posterior fusion. It means literally fusing the front and back part of the spine in the area needed. The spine is a three-dimensional object. Fusing only the posterior (back) part means the anterior (front) side is not surgically altered. Most anterior surgeries are done through the ribcage (thoracotomy). Not through the abdomin like it sounds.

Most scoliosis surgeries involve placing a rod along a portion of the spine as a temporary brace. The rod/instrumentation holds the fusion material (pieces of bone from the patient or other source) in place as the fusion becomes solid. In teenagers, fusion is typically solid 6-12 months after surgery. Fusion means the bone mass is solid - there is no space or flexibility in the fused area. Fused spines are rigid in the fused area. Because fusing the spine makes it rigid (doesn't bend anymore) most orthos fuse the minimum number of vertebrae as possible.

Scoliosis surgery is serious stuff. Your spine will never be the same. Surgery to "correct" scoliosis should be considered very carefully, weighing all the pros and cons carefully. I wish you the best in your quest for finding the right recommendation for your daughter. I hope this lay-explanation has helped some. Ask your doctor for a specific description of the recommended procedure for your daughter.

[Amymichele]

Thank you, carmell..that is precisely what I was wondering. ..and your descriptions are quite helpful. This knowledge will be a huge help when we do speak again with our surgeon.

Btw, we drove thru your state on our way home from our whirlwind tour of the West a few weeks ago...it's lovely. Wish we could have seen more than just what our view from the interstate offered!
;)

[mumof5]

Carmell you explained that very well. I would like to say that Amber's Dr. here (her original one not the one that did the surgery) had in his office a portion of spine (like the full skeletons students use, not real bone). This one actually had all the instrumentation attached. He layed it on his lap and explained everything. We could see and touch exactly where everything went. It was much better than trying to imagine or seeing diagrams. I'm sure there are other doctors around that have the same thing. Maybe it's worth asking around.
Best wishes.
Cheryl.

[jc3]

hi carmell
i found it really interesting what you said about waiting until they are skelletally mature. I think i am going to give the dr. a call on that next week and see what he says about that.
in the meantime, we went yesterday and we set a date of nov. 3rd for her to have the surgery. At one point we were really hoping that she would be able to avoid having surgery and the curve would all of a sudden magically stop progressing, but we were only fooling ourselves. Her curve has been progressing fast. Her back looks so bad even to the eye, she has a significant rib hump with rotation. But we felt very comfortable with him and the whole office, we got to meet a 16 year old girl that had surgery 3 weeks ago and it was amazing how great she was doing, you would have never known.
thanks for your input and i am going to find out more information on that, i am curious now.
thanks again
jennifer

[mamakay]

Hello all,

I am so confused about the skeletal maturity thing.
My daughter had an xray of her hip bone and her hand which are suppose to be acurate in defining bone maturity and it seems one was complete and the other showed her growth at the age of a 13 year old.(Which I guess meant she still has alot of growing?!?!) She is 15 almost 16.
She started her period less than a year ago. Which is late but not unusual since she is thin.
Does anyone understand the skeletal maturity issue and whether it is a good or bad thing when surgery is inevitable.
Her curve was 52 degrees when discovered in mid June and although our Dr's tell us we don't have to hurry to surgery.
(but not to wait a full year.)
It seems her curve and ribhump lookalot worse lately.
Does anyone think it can change that fast?
She is active in watersports but has back pain too.
One other thing ..Has anyone had the shooting and burning pain run from the neck down to their spine when they jerk their head around?
She still has this alot and it was happening before we discovered the scoliosis.

Thanks and annie I'm glad your back and better!!

I may not be able to check this board for about 3 days.

We are still trying to get a few other opinions but it is hard to just pick a name.
Thanks all..

[Justin]

From what my doctors tell me. When you do the anteriorposterior x-ray of the spine you see the neck, throacic, lumbar spine as well as the hip. They check the hip to see if it is fused already. If the hip is fused it means that the spine is fully matured and that the spine can not grow in length but can curve if your daughter already has 40+ degree curve.

http://www.fpnotebook.com/ORT389.htm
Go here its pretty accurate and most research does show if the hip is fused(risser sign is risser grade 5) than unless the curvature is already 40+ degree it will most likely not curve in adulthood.

Since your daughter's curve is already 52 its more likely to progress through adulthood with 1-2 degrees worser each year.

Another thing to determine spine fused already is this way by girls only have. This may be embarassing but there's alot of sites that tell you that once your daughter has her 1st period or her period regularly. Then 1.5-2 years is the time span which after that your daughter is done growing in the spine.



As for curvature progression in non spine fused teens. I was like 16.5 years old I had a 37 degree big throacic curve.(18 in december) Doctor told me my spine is close to fusing fully. That probably mean the risser grade 4 determined from the hip. When i checked up in December just before my 17th birthday, i was already 44 degree curve. 7 degree in 6 month and when the spine is about to finish fusing is pretty scary.


I don't think the hand x-ray means much. If your daughter is short because of small upperbody, dont worry the scoliosis will make up for it on the legs. The scoliosis puts pressure on the legs so the legs grow longer. Cause my legs are like as long as a girls legs and im a male. as for my spine its sad that the tshirt medium boys ibought for my elementary school graduation. I can still wear as of today. Oh well don't mind it much.

[Justin]

As your daughter said she has her period for less than a year. I think its more trustworthy to trust the hip x-ray than if she has her period for less than a year. There are different stages of fusion of the hip.
http://www.fpnotebook.com/END168.htm

If the x-ray shows that the iliac apophysis and the iliac crest is together all the way like this
http://medlib.med.utah.edu/scoliosis/risser.htm

Then, there's no way she can grow any taller at the spine. It means that she's skeletally matured(spine fused completely)

[Justin]

Sorry if im being mean to you. As saying if your daughter can't grow taller. If she wants to, she can do the surgery and add 1-2 inches to her height. As for me im only 5'5, havent done the spinal fusion surgery yet. Still researching the pros and cons, I know how it feels as i was always the shortest guy in my grade every year.

The burning pain i get when my curve was 44 degrees and not 37 degrees. It's sometimes like a hot liquid burning in the shoulder blades or the area between the 2 shoulder blades. If not, sometimes i get like insect like stings from the same area.

If your daughter is tall than its all good.

Sorry again if i typed alot. Just trying to help yur daughter. As we both have like sort of the same symptoms.

Last tip i've been told by my doctors. Doctor Tredwell, one of world's famous doctors told me rowing is a good exercise if your daughter has alot of pain. Also don't let her carry heavy load items.

[Mary Lou]

Mamakay...

I hope this doesn't confuse you more, but I wanted to write of my daughter's experience to let you know you're not the only confused one here.

My daughter will be 13 in 7 days, started her periods about 1 1/2 years ago at the age of 11 1/2 (young, I know). Doctors at our local Children's Hospital have been telling us since October of last year that she is a Risser 0 (I think that is on a scale of 0-5 with 5 being skeletally mature), which means she has a lot more growing to do, but at the same time, because of when her periods started, they say she only has about one year to grow yet. They always x-ray her hips. Had her to a doctor in a larger city last week and they x-rayed her hand and told me she was almost done growing. They said her bone age is about 14-14 1/2 years of age.

I know we all need to get atleast a second opinion, but it just makes things so much more confusing! Sorry if I confused you more, but I wanted to let you know you aren't the only one.

Mary Lou

[jc3]

hi this is to mamakay
i just read your post and you sound as confused as i do about this skelatally mature thing.
My daughters rib hump changed very quickly as well. I'd say there is a drastic difference for the worse since last summer. Her curve also went for the worse quickly too, in four months it went from 42 to 50-52 degrees. One surgeon said it was 50 and another told us 52. But the rib hump is the thing that bothers me the most. We just scheduled her surgery for nov. 3rd, i hated to have to do it, but i guess if it has to be done at all, better now. This is the hardest thing to go through. She is not happy at all. My daughter has no pain at all, which i can't believe.
jennifer

[mumof5]

At one of the doctors visits that we went to the Dr. took out the x-rays, glanced at the report and started measuring the x-rays himself. You could see the marks on there from the radiologist. I asked him why he was measuring again. He said that every doctor measures differently and from different points. That is why you get a slight variation in the degree of curve.
I think I also remember him saying that the spine is the first of the bodies skeletal areas to stop growing. On the x-rays if you look on the outside of the top of the hip there is what looks like a white not quite solid line. It grows into the centre. That is what they are looking at for the Risser scale. The further along the hip the less growing still to do.
Best wishes.
Cheryl.

[jc3]

My daughter is 14 and the first dr. said risser 1 and the second dr. said about risser 1 or 2, which at each visit for the past 1 year we were hoping would change and it hasn't so she still has alot of growing left to do.
jennifer

[mamakay]

justin,
thankyou for your info and link about my daughter's skeletal questions.She is 5'5 also. So I guess it is best for surgery if the spine is not matured yet, right?
Is that why a bone graft comes from the hip and not ribs?Anyone?

I discourage her from carrying heavy anythings, it is hard to change a persons habits but I told her she must, then she gets upset about her scoliosis.
But I know she is trying. I will tell her about the rowing, that will be a positive thing to hear for a change.
Good luck on your surgery decision.
jc3,
Thank you also for replying to me.
I will ask more skeletal questions at our next (2nd opinion)Dr's appt this month.
I'm upset as all of us so maybe I should listen harder. This is so shocking to me as she has always had such great posture and a beautiful long back.
Her back was measured differently also. I guess there is a 5 degree margin some how bc of what Carmel? said about how differently they measure. This is scaarey bc it seems the number is always more than less so I wonder if the curve is rapidly changing!!
We are looking at surgery soon too. Will your child give blood for her surgery?
Best of luck
Mary lou,
Thank you too for explaining your confusion like mine about the period and risser scale. We will get a second opinion Aug 23rd at the medical center in Houston. I really don't want her to have surgery so far from home but I know I have to get another opinion.
Well sorry for such a long reply. I am praying for strength for all.
This board has been such a help to me and I'm grateful to everyone for sharing their pain,advice and strength.

[jc3]

hi mamkay
i don't know if my daughter will give her own blood, i think the drs like for the kids to use their own, we haven't gotten that far with them about that yet. They said they are working on all the paperwork for the surgeries for october and they will be sending out the paperwork shortly for the november surgeries, which will have all the information about the tests she needs to have done before the surgery. She hates needles and is going to freak when we tell her she has to donate blood.
the dr. has told us there is a five degree margin in measuring curves. Our dr. measured 50 degrees and when we went to our new dr. he measured it to be 52 on the same x-ray, not much of a difference but i was hoping the first dr. measured wrong and it would have been less.
let me know how it goes when you go for your second opinion
jennifer