Scoliosis

Jenny - posted on 02/10/2009

I'd love to know more--we're taking her for a 2nd opinion in 2 days.  Was the recovery fast?  Did she have any limitations (i.e. climbing stairs or anything else)?  is there a way to prepare for what she'll need afterward?

Betty - posted on 02/10/2009

Hi: My daughter is 8 and had the growing rods put in last November. She is going for her first lengething next week.

Jenny - posted on 02/03/2009

So after surgery, were there any physical limitations?  Things like climbing into/out of an SUV? 

Kimberly - posted on 02/01/2009

Hello, I reside in Winnipeg, Manitoba Canada and recently found in our community paper that bracing and exercise will not reduce or correct a scoliosis and may simply prolong pain and suffering. Chiropractic care can be an effective, non-surgical approach to reducing and correcting a scoliosis. Some use a brace, surgery where a rod is inserted and chiropractic care. I hear a lot of good things with a Networking chiropractor

Trisha - posted on 01/28/2009

I know what you mean about working around other things.  I tell people that I dont need to take my son to "Build a Bear" stores because he himself is a "Build a Boy".  He has a VNS for seizures, Rods for scoliosis, Trach for Sleep apnea, and a feeding tube because he won't eat orally.  But I have the happiest litle boy you ever met, so we are very blessed.

Christie - posted on 01/28/2009

Quoting Trisha:

My son just had rods placed this past July and is having them lengthend this April for the first time.  He is 11 and doing great with them. He grew like 3 inches.  But our surgery only took about 1 1/2 hrs.  The surgeon we had does them all the time and is great.  If you want to look at a surgeon to have it done he is at Johns Hopkins Hospital in Baltimore Maryland.  his name is Dr. Paul Sponseller.  I have never had such a great doctor for my son as him and he have had a lot of different doctors over the years as my son has many medical issues.

The reason it took so long the first time was other issues we also worked around.  She was shaken at 4 months old and is completely disabled.  She has shunts, feeding tubes, baclophen pump in her stomach, screws in her hips, etc....so they already had to work around alot of things to get them in her.  Now when we go to have them lengthened it usually takes only 2 hours, but even then while they have her open they check her other hardware in her.  Bless her heart she can set off walmart alarms....

Christie - posted on 01/28/2009

What I was told by my doctor.....yes it does prevent growth "some".  Meaning that if you don't go back every so many months to "lengthen" the rods she can't continue to grow.  But you can't stop them from growing with the rods.  I hope this makes some sense.  Soooo because she has so many disabilities we want to stunt her growth some because she is only six and she is getting big for me now.  Thats why we are only lengthing the rods once a year now.  Eventually, we will have to remove those rods and put others in once she "out grows" those.....I hope this helps.

Diane - posted on 01/28/2009

We put off my daughter having surgery (rods) until she was around 16. It's scary but well worth it. She's a singer and has found a whole new way to breathe!!! Ask around about the ortho/surgeon and allow your son to speak with other patients/kids who've been through it. There's a great web site for children with scoliosis and their parents.

Trisha - posted on 01/28/2009

My son just had rods placed this past July and is having them lengthend this April for the first time.  He is 11 and doing great with them. He grew like 3 inches.  But our surgery only took about 1 1/2 hrs.  The surgeon we had does them all the time and is great.  If you want to look at a surgeon to have it done he is at Johns Hopkins Hospital in Baltimore Maryland.  his name is Dr. Paul Sponseller.  I have never had such a great doctor for my son as him and he have had a lot of different doctors over the years as my son has many medical issues.

Christie - posted on 01/28/2009

I was afraid that rods would be terrible, but the rods have helped my daughter  so much.  We did have to have surgery every 6 months to "lengthen" the rods, but now we are doing it once a year.  The surgery the first time was the longest surgery my daughter had ever been thru.  It took nearly 10 hours, but we also had to put screws in her hip because the scoliosis had pulled it out.

Jenny - posted on 01/28/2009

Quoting Christie:

My daughter has severe scoliosis.  She is only 6 and has rods in her back.  This would be for the extreme case.  If he is just being diagnosised I would suggest that you see a specialist immediately.  From what I know your son may need to wear a brace or if he is severe he might need to have rods placed.

We've seen a specialist...at Childrens' Memorial in Chicago.  We're going to Riley in Indy next month for a 2nd opinion, as the other physician measured her curvature at 22 degreees in June; then at 47.5 degrees in December....meaning that we missed the boat on bracing.  Now we're looking at surgeries.

Did the placement of the rods in your daughter's back cause her to stop growing, or cause any other issues?

Christie - posted on 01/28/2009

My daughter has severe scoliosis.  She is only 6 and has rods in her back.  This would be for the extreme case.  If he is just being diagnosised I would suggest that you see a specialist immediately.  From what I know your son may need to wear a brace or if he is severe he might need to have rods placed.