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mylttlebug
09-05-2008, 10:28 AM
I'm new here and my daughter was just diagnosed last week. She goes for her MRI on monday and then hopefully into a brace soon. I guess as soon as they can from what I here they are pretty booked in ortho. If anybody has any advice it would be greatly accepted. Thanks a ton.

mariaf
09-05-2008, 11:11 AM
Welcome Mylttlebug,

You'll get lots of info and support here. Most of us have been in your shoes before.

Do you know your daughter's degree of curvature?

My only advice, not knowing much about your situation, would be to make sure your daughter is seeing a pediatric orthopedic surgeon who SPECIALIZES in scoliosis.

Ideally, she should see someone who is familiar with scoliosis in a child so young. Many orthos treat a lot of teenagers and the more typical scoli cases. Scoliosis in a 6-year old child is relatively rare and you need to be sure her doctor is experienced with kids this young.

Please feel free to ask anything - and good luck!

Keep us posted.

mylttlebug
09-05-2008, 11:31 AM
Thanks a ton. Her degree is 28*. And I have done a ton of research on braces and treatment and have talked to people who have taken a less medical approach to treatment with great results and cures. We are putting her in a SpineCor brace and are doing Yoga and chiropractic and massage therapy. Plus she will have to do PT once she is in a brace. Thep Ortho specialist wanted to wait to see her again in 3 months and that is too long for me. There is one weird thing though which has a few questioning if it IS scoliosis. When she bends over she has her hump but her spine straghtens right out as if there was nothing wrong. Any thoughts?

mariaf
09-05-2008, 11:56 AM
I have done a ton of research on braces and treatment and have talked to people who have taken a less medical approach to treatment with great results and cures.

Hi again Mylttlebug,

I hope you don't mind my saying so, and I am NOT questioning your parenting or anything like that - not at all - but if it were my child I would NOT take a "less medical approach" to scoliosis in any child, let alone a 6-year old child. A "medical" approach is exactly what is needed!

You also use the word "cures" - if anyone tells you that a chiropractor, yoga instructor or ANYONE else "cured" their kid's scoliosis I would run the other way as scoliosis cannot be "cured".

Please consider taking your daughter to a PEDIATRIC orthopedic surgeon. If you are not happy with the approach of the first such specialist you saw, then please go for a second, or even a third opinion. If you are close to a Shriners Hospital, that might be a good place for another opinion. They are staffed by top doctors and see many of the less common scoli cases such as scoli in a child your daughter's age.

As far as the spine itself appearing straigther when she bends over that is not unusual. If her curve is 28 degrees on the x-ray then I'm afraid it IS scoliosis. The good news is it CAN be treated and there are many, many options open to you.

I hope you don't mind my candor - I only have your daughter's interests at heart, as I'm sure you do. My son was diagnosed nearly 8 years ago and I have tried during that time to learn as much as I can about scoliosis, PARTICULARLY as it effects younger kids.

Good luck!!

mylttlebug
09-05-2008, 12:35 PM
I have gotten many opinions frome the docs. ANd I also have talked to people that have and have had scoli. and I believe in my heart of hearts that it can be cured. Studies have been done and people have had sucess. And if needed I would travel to the ends of the earth for her I would. If it came down to it and she needed surgery I wouldn't hesitate. But with it being caught so early there is a good chance for improvement ( in what I've seen and heard). That's is why I don't feel waiting 3 months would be a good idea.All I have seen frome the "medical" side of thing is moniter...brace...surgery. There are not many willing to even think or look for other options and that is what I'm seeking out. She's 6 1/2 and doesnt need to be concerned with worrying about if she can play or should she not climb that tree. That is one of the reasons we are going with the SpineCor brace. And I have talked with a doc in Chicago that has had sucess with it also.I'm not saying it and end all, cure all but it's worth a shot. It may or may not work for her but we won't know unless we try. There is a director at her school that her daughter just had surgery at 15. And she said it is a helllasious thing to go through. If there is something I can do to prevent that from happening to her then I will exaust all paths trying to do so. But until then all I can do is pray and take everyday as it comes.
www.scoliosisspecialists.com

mariaf
09-05-2008, 12:40 PM
There is a director at her school that her daughter just had surgery at 15. And she said it is a helllasious thing to go through. If there is something I can do to prevent that from happening to her then I will exaust all paths trying to do so.

I agree 100% that the goal should be to avoid fusion surgery.

Again, I wish your daughter all the best.

debbei
09-05-2008, 01:24 PM
...I believe in my heart of hearts that it can be cured.


I wish your daughter the best. However, she will always have scoliosis, even if she gets some correction with a brace. This is a condition that she will have for life. I'm not saying that she can't have a perfectly normal life, but she WILL have scoliosis.

Good luck to you. I have a follow up appointment for my 9 year old daughter on Monday. I hope and pray that her scoliosis stays minimal and she doesn't follow in my footsteps. If the Dr. says she needs a brace though, she'll get a brace.

Let us know what happens.

mylttlebug
09-05-2008, 01:32 PM
We don't get to find out when our daughter can get a brace until after her MRI on monday. Then I'm hoping to get it ASAP. If I can't get it from here though we will go to Chicago for the weekend and have her fitted.I would like to have it right after her MRI. We do have one of the best hospitals in the country for kids so at least we have that on our side.

mylttlebug
09-05-2008, 01:34 PM
I am doing some research on the shriners right now. Thank you for the link. Just doing a little background checking before we jump into anything. I think the closest one is in OH. Just a few hours away. Another weekend trip:D I don't mind those at all. Thanks again

mariaf
09-05-2008, 02:27 PM
There is a Shriners Hospital in Cincinnati but it is a burn center. Out of the 22 Shriners hospitals, 3 specialize in burns, the rest treat orthopedic conditions. I know there is an excellent Shriners Hospital in Chicago - or maybe another one is closer for you. By the way, they will help with transportation, etc. should you need it.

Good luck and keep us posted!

Carmell
09-05-2008, 04:21 PM
Good luck with the MRI on Monday. The results (hopefully negative for everything) will help you know how to proceed with treatment for scoliosis. It's probably a good idea not to do any chiropractic treatments or big stretching until after the MRI. If there is a problem with the spinal cord, you don't want to cause any further damage to the nerves and tissues. Just be careful until you know the results. Another suggestion is to have the MRI scan (a full spine MRI, hopefully, not just lumbar) read by a PEDIATRIC neuroSURGEON, not just a radiologist.

txmarinemom
09-05-2008, 05:14 PM
I have gotten many opinions frome the docs. ANd I also have talked to people that have and have had scoli. and I believe in my heart of hearts that it can be cured. Studies have been done and people have had sucess.

mylttlebug,

As Maria mentioned earlier, it's critical to see a pediatric scoliosis specialist. You said you're near a top children's hospital, but do they have a group who specializes in pediatric scoliosis? As dangerous as the quacks, in my opinion, are the orthos who will treat a kid for this even though they're far over their head.

Anyone (including a doctor) who tells you they can cure scoliosis or they "had" scoliosis is either dishonest or *wrong*. Correction of scoliosis - to any degree, by any method (including fusion) - doesn't "cure" it. Yes, you can certainly live a normal life with it, but if you have it, you'll always have it. Period.

Would you mind posting the studies to which you refer?

I hope you're never faced with the decision to operate, but it's concerning to hear anyone looking for a "less medical" treatment. I've seen far too many of those people (who choose non-traditional treatments) left with very few options if (and it's usually *when*) those treatments fail.

Best wishes to you and your family.

Regards,
Pam

mylttlebug
09-06-2008, 09:06 AM
I think everyone is misunderstanding me. I know that she will always have scoliosis. Always. But there have been studies, rare yes, but to have almost 100% correction. I will go through my folders and try to find the links to what I have found. Yes they are doing a full spine MRI. And I will look into making sure her Dr.'2 are specialist in Ped. Scoli. We are going to MOTTS at the
Uof M.

Pooka1
09-06-2008, 12:05 PM
I think everyone is misunderstanding me. I know that she will always have scoliosis. Always. But there have been studies, rare yes, but to have almost 100% correction. I will go through my folders and try to find the links to what I have found. Yes they are doing a full spine MRI. And I will look into making sure her Dr.'2 are specialist in Ped. Scoli. We are going to MOTTS at the
Uof M.

There have been surgical fusions that bring the spine back to near straightness but it isn't obvious that that is correlated with less pain or less complications down the road. It might be just surgical grandstanding and I say that as a parent whose kid was corrected from 58 to 5 degrees. There is no evidence that her eventual outcome will be any different had she only been correct down to 10 or 15 degrees and the more correction, the more chance of a complication I think.

jillw
09-06-2008, 01:38 PM
Mylttlebug,

Hi, a year ago we were in a similar situation when my then almost 7 year old was diagnosed with scoli. You can see my daughter's specifics in the signature, below. We saw numerous pediatric orthopedists and many said to wait 6 months and then continue to wait until she progressed. I can understand your desire to try and take other actions rather than simply waiting. Especially since there is close to a decade of growth left which can contribute to further progression of the curve.
That was a choice we made as well. I don't know if it will help (although I certainly hope it will!), but as long as it does no harm and we go in with our eyes open, it's worth a shot. When you are at the stage when they are telling you to wait, it's easier to make a choice to use "alternate treatments" such as spinecor and try physical therapy than when the spine specialists are recommending a particular brace or treatment that you don't want to use. If we had waited - doing nothing- and then she had a big jump in the size of her curve (which I have seen happen with some of the children on these boards) I would always regret that we had done nothing. With spinecor and a little pilates which helps her strengthen her core muscles, maybe we are helping...she may still have a large jump in her curve. If so, we'll have to reevaluate what to do going forward. In the short term, though, it was an easy decision. Even if spinecor only delays the progression, at least it buys my daughter a little more time to run around without the restrictions of a hard brace. I figure the $ spent on pilates helps her with her dance anyway as it strengthens core muscles so even if it does nothing for scoli, it's not bad (and she's not doing intense pilates, it's really more to improve her proprioceptive awareness which has always been a weak point of hers aside from scoli). And the $ on spinecor has been worth it in my opinion because for the last year she has been walking around with a reduced curve while in brace. That doesn't mean her curve is "fixed", but at least the "erosion" and/or effects of gravity on a curved spine over time were lessened over the past year. Plus, I've had more time to research more options for potential future treatment. Still, I enter all of this with very realistic expectations and realize we may have to change my daughter's treatment over time (or heck, even next month when she gets her next xray)

I do think the important thing is to make sure to do no harm. As Carmell pointed out, it would make sense to get the results of the MRI before engaging in chiro and such. I haven't researched the use of chiro in kids, so I don't know anything about the potential risks, but I'm sure you have.

Anyway, I guess I rambled, but wanted to say Welcome, Good luck, I remember how I felt a year ago when we were in your shoes-it's a tough tough time, but you will all get through it.

Also, Pam brings up a very good point, that "as dangerous as the quacks, in my opinion, are the orthos who will treat a kid for this even though they're far over their head." In hindsight, I am SO grateful that the first orthopedic surgeon we saw (the one who diagnosed her scoliosis) was confident enough in his abilities to admit that he was NOT the one who should be treating her and that we should be finding a pediatric ortho who specializes in spine and sees kids with juvenile scolio on a regular basis.
an "e

jillw
09-06-2008, 01:46 PM
Mylttlebug,

Hi, a year ago we were in a similar situation when my then almost 7 year old was diagnosed with scoli. You can see my daughter's specifics in the signature, below. We saw numerous pediatric orthopedists and many said to wait 6 months and then continue to wait until she progressed. I can understand your desire to try and take other actions rather than simply waiting. Especially since there is close to a decade of growth left which can contribute to further progression of the curve.
That was a choice we made as well. I don't know if it will help (although I certainly hope it will!), but as long as it does no harm and we go in with our eyes open, it's worth a shot. When you are at the stage when they are telling you to wait, it's easier to make a choice to use "alternate treatments" such as spinecor and try physical therapy than when the spine specialists are recommending a particular brace or treatment that you don't want to use. If we had waited - doing nothing- and then she had a big jump in the size of her curve (which I have seen happen with some of the children on these boards) I would always regret that we had done nothing. With spinecor and a little pilates which helps her strengthen her core muscles, maybe we are helping...however, she may still have a large jump in her curve. If so, we'll have to reevaluate what to do going forward but we should be no worse off than if we did nothing. In the short term, though, it was an easy decision. Even if spinecor only delays the progression, at least it buys my daughter a little more time to run around without the restrictions of a hard brace. I figure the $ spent on pilates helps her with her dance anyway as it strengthens core muscles so even if it does nothing for scoli, it's not bad (and she's not doing intense pilates, it's really more to improve her proprioceptive awareness which has always been a weak point of hers aside from scoli). And the $ on spinecor has been worth it in my opinion because for the last year she has been walking around with a reduced curve while in brace. That doesn't mean her curve is "fixed", but at least the "erosion" and/or effects of gravity on a curved spine over time were lessened over the past year. However, going into it we realized that we might be throwing that $ away if spinecor didn't help at all and we had to switch treatments - but that was OK with us. Still, I enter all of this with very realistic expectations and realize we may have to change my daughter's treatment over time (or heck, even next month when she gets her next xray)

I do think the important thing is to make sure to do no harm. As Carmell pointed out, it would make sense to get the results of the MRI before engaging in chiro and such. I haven't researched the use of chiro in kids, so I don't know anything about the potential risks, but I'm sure you have.

Anyway, I guess I rambled, but wanted to say Welcome, Good luck, I remember how I felt a year ago when we were in your shoes-it's a tough tough time, but you will all get through it.

Also, Pam brings up a very good point, that "as dangerous as the quacks, in my opinion, are the orthos who will treat a kid for this even though they're far over their head." In hindsight, I am SO grateful that the first orthopedic surgeon we saw (the one who diagnosed her scoliosis) was confident enough in his abilities to admit that he was NOT the one who should be treating her and that we should be finding a pediatric ortho who specializes in spine and sees kids with juvenile scolio on a regular basis.

ecnw
09-07-2008, 02:09 AM
It's good to have an optomistic view of what is going on with one so young. When mine had their MRI's, they put them to sleep so they would stay still during it. They woke up very cranky and loopy. I wouldn't count on getting the brace molding done the same day. They also take a few weeks to actually construct if it's not a priority.
Just remember, in some cases, bracing can help keep the spine at a curve that they can live with and not need surgery. For others, as they grow it will keep progressing and they will eventually need surgery.
Luckily your daughter's curve is bracible and hopefully she won't need surgery.
But you will need to see a specialist and read up on different proceedures, that way if someone does mention surgery you can be more knowledgable and and decide what is the best treatment to choose.
Emily

leahdragonfly
09-07-2008, 11:53 AM
Welcome to the forum. I'm sure this all comes as a shock and it is a lot of information to absorb at once. My daughter was diagnosed at the beginning of this year at age 6, with essentially the same curve as your daughter's (Leah's was measured by radiologist at 30 degrees, 28 by first pedi ortho and 26 by second ortho. They said these are all the same measurement, due to the 5 degree margin of error.)

I was braced myself for 2 years as a young teen (and really hated it), so I can't imagine trying to keep my daughter braced in any brace for 9+ years. This determination to find an alternative led us to this forum where we learned about VBS.

I have a couple of thoughts after reading the posts above. You mentioned hoping that she can be cured, and this generated a lot of discussion. A VERY FEW Juvenile Idiopathic Scoliosis cases can have a spontaneous regression. I have read about this in several articles, it is considered rare but possible. I think the one study I read had about 110 cases of JIS. I believe 5 of those were non-progressive and spontaneously resolved. I can pull out the article and cite it if you are interested. The kids this happened to were all younger (5-6).

Unfortunately, the large amount of growth left in our young kids is usually considered to work against them in terms of higher risk of progression. Since no one has a crystal ball, we have to hope for the best but research and be prepared for the worst.

I agree with the other posts about the importance of seeking a pediatric scoliosis specialist. You can search through the Scoliosis Research Society (www.srs.org click on 'find a specialist') site to find one in your area. I did a quick search for Juvenile specialists in Michigan and don't think I saw the name Motts, but there are quite a few others in your area. You might want to check this out further, and/or find out if your doc specializes in pediatric spine deformities.

Good luck with the MRI tomorrow. My daughter did just fine with a 0.5 mg tablet of Ativan--we wanted to avoid using IV anesthesia if possible.

smileyskl
09-07-2008, 08:46 PM
I'm new here and my daughter was just diagnosed last week. She goes for her MRI on monday and then hopefully into a brace soon. I guess as soon as they can from what I here they are pretty booked in ortho. If anybody has any advice it would be greatly accepted. Thanks a ton.

mylittlebug,

I have been on this scoliosis roller-coster for almost a year now. So much has happened. My 9 year old was diagnosed, then told it was due to a teherered cord, had surgery, then was told the scoliosis was idiopathic. Hers started at 23 and in one year has progressed to 46 degree in three places. What I have learned in the year is that everyones scoliosis is different and opinions vary greatly. We are talking surgery now, after the brace didn't work. One thing that is consistantly said and is very important is that your daughter see a SCOLIOSIS PEDIACTRIC SPECIALIST. This is a very complicated condition and after a year I am still drowning in all the options. You have to work with a doctor you trust and be willing to take advice from those who have been there and get second opinions if necessary. I is a scary, unpredictable condition that you have to take one day at a time. I thank God we live in a country where treatment is available. Good luck with the MRI and keep us posted.:)

Smileyskl


Just FYI - my daughters pediactric orthopedic specialist is completely against chiropracters. He says that the improvements only last if you continue the treatment for the rest of your life. Also, as others mentioned, the x-rays after chiropracter visits are temporary corrections. This also happens if you have an x-ray after wearing a brace but you haven't had the brace off for 24 hours. Therfore, it is not a true correction. I have a family member whos a chiropracter who swears by the treatment but from all the socliosis specialists opinions, it is a bad idea. Just a thought.:)

Mom37
09-08-2008, 12:24 AM
Just want you to know there are alot of supportive people on this forum, and just hang in there. Take all the doctor opinions you can and do your homework, do what you think is best for your child, and just support you child the best you can. Bracing doesn't work for all but I hope it does for your child. We went to Shriners in Erie, PA. Flew to Cleveland, and then drove there. Wanted second opinion on brace we had, Spinecor which is one they use. They could get us in before our local masonic funded hospital. Also went to Scottish Rite in TX for a second opinion. Both free, and both orthopedic surgeons braced, but said bracing would not hold my daughters curve. She did have surgery, and is doing well. She was braced by a chiropractor, and follow up on brace by a different, closer chiropractor, but Erie Shriners uses by an orthopedic surgeon recommendation.

mylttlebug
09-10-2008, 06:18 PM
Well good news I guess. Got the MRI. Dr. called yesterday and said she has a spyrnix. Which is a fluid filled cyst on her spine which is most likely causing her curve. So the have to go in surgically and drain it and that will correct her curve. Slowly.. Then they do another MRI in about 6 months to make shure it hasn't filled up again. She has something called Chiari Type1. So I guess that is good news. Worried about the surgery though. We go for a consult on the 30th. ANyway just wanted to keep everyone posted.

mariaf
09-10-2008, 07:25 PM
Hang in there! At least they found the cause and that IS good news. One question I have is that they said they plan to drain the cyst - will they also perform surgery on the chiari itself?

Please keep us posted and best of luck to you!

Carmell
09-11-2008, 12:14 PM
I'm glad they did the MRI. It helps in determining the next plan for her. The Chiari needs to be addressed along with the syrinx. Chiari is a potentially dangerous condition if left untreated, or under treated. Headaches, difficulty swallowing, arm weakness/tingling, etc. are all signs that should never be ignored. Hopefully you have a good ped. neurosurgeon who understands the implications of Chiari type 1 in your daughter. Each patient is different. If you research this online, remember these are usually the worst-case scenarios. There are also many people walking the streets who have Chiari issues and never know it. They never have a reason to be tested. So, a very broad range of conditions and health issues can apply.

Also, there is a chance the Chiari correction (did they say they will need to do a decompression surgery?) will help the scoliosis - either stop it from progressing, or best case, help it improve. However, don't be disappointed if this doesn't happen. No guarantees here at all. The scoliosis needs to take a back seat to the Chiari issues. Then, you can find the right "plan" for the scoli.

Good luck.

smileyskl
09-11-2008, 08:22 PM
I certainly hope that the syrinx is the cause for the scoliosis, in our case it was not. We were told that by fixing it, it would probably stop the progression but it continued to get worse. Hers was not Chari though it was with a tethered cord so hopefully your outcome will be better. Good luck and keep us posted.

Smileyskl

mylttlebug
09-14-2008, 10:45 AM
The Dr. told us that this is more likly what is causing her curve. They are going to do decompression surgery. Then she said they would moniter her curve to make sure it is getting better. My concern is that if it doesn't start to get better by the time they realize it it will be too late for a brace or anything. I'm scard to death of the decompression surgery. I've been doing some reasearch on it and I didn't know they had to remove part of her vertibre(sp) Possibly the top 2-3. I guess I'll learn more when we go on the 30th to talk to neurosurgery.

Pooka1
09-14-2008, 11:03 AM
My concern is that if it doesn't start to get better by the time they realize it it will be too late for a brace or anything.

A few thoughts...

I would ask the Dr. if the average probability and rate of progression is known in cases like your daughter's. It may or may not be. It might be known that in those cases, progression is rare or progresses only very slowly after decompression.

If a large percentage will progress quickly then I suspect your Dr. will call for films early and often.

Either way, just asking this question will hopefully allay some concern on your part.

Good luck.

sharon

mylttlebug
09-14-2008, 02:30 PM
She did say that they would take more film in about 6 months after the surgery. She said that that is where Ortho and Neuro debate. Ortho thinks that the Syrinx causes the curve and Neurosugerons think the Syrinx is caused BY the curve. So now it's a question of who do I listen too. But I guess more films will tell which is which.