Scoliosis with chiari and syringomyelia?

[MamaBear]

Hello. I just discovered this group. We just got my daughters brace yesterday and she is having a very difficult time adjusting. A little background:

My daughter is 12 years old, will be 13 in October. She was diagnosed with Chiari Malformation at age 4 and was immediately decompressed. She had a 2nd decompression at age 9 at Denver Childrens, along with shunt placement for the syrinx that had developed through more then half of her spine. The syrinx apparently caused the scoliosis. She was checked once a year by an Orthopedic surgeon to monitor the curve. Her curve in 2006 was around a 12/13, in 2007 it was 14/15, in 2008 it was 15/18 and at her appointment last month it had jumped to T28, L36! They did an MRI to make sure the syrinx had not redeveloped and that is not the case. They have no explanation as to why her curve almost doubled in one year.

We picked her Boston brace up yesterday. She has to wear it for 18 hours a day including overnight. She is SO uncomfortable. She has trouble getting up from a sitting or laying position. She has no clothes that fit now. These are all things that will hopefully get better with time. I am interested to know if there are others here that have dealt with this after chiari and syrinx? Also, approximately how long are the braces worn? We were told until she is done growing. She has barely started puberty so I imagine we have a ways to go. How quickly are results seen?

So sorry for the long post.

Shannon

[LindaRacine]

Hi Shannon, and welcome...

I moved your thread from the kids forum to the parent forum.

I can respond to one of your questions... "How quickly are results seen?" I think that specialists like to see 50% in brace correction. (In case you don't know, the correction is temporary, as the curves almost always return to their original shape when treatment is discontinued.) If there isn't significant in brace correction, the brace is unlikely to be effective.

Good luck getting through the break in period. I understand that it's pretty tough.

Regards,
Linda

[emarismom]

Shannon,

I'm sorry to hear about your daghter's situation. By reading my signature you will see that my daughter is in a similar situation. She was decompressed at age 5, had several years where her curve was improved or stabilized, yet recently it seems her curve may be moving in the wrong direction

I have spent the a great deal of time reading about scoliosis related to syringomyelia/Chiari because the scoliosis was her main symptom at diagnosis. From what I have read it seems that scoliosis related to these conditions progresses quickly. That would explain why your daughter's curve changed so fast. If you want to talk just PM me and I'll give you my email address.

Michelle

[Mom37]

My daughters scoliosis progerssed rapidly too

I was told that my daughters curve had progressed too much and too fast and that it would only continue to get worse so we had spinal fusion. It is now 2 years later and my daughter expressed she is happy to not be braced and now glad she got the surgery. We hearde it was common with Chiari and Syrinx to progress even after the decompression surgery. We were hopeful there could be the possibility it would stop but unfortunately it continued to be a rapid progression on her curve. Her Syrinx did drain and were much closer to being flat. I hope you don't mind me asking, why did you have a second decompression? Did you have to have shunts or stints put in as not draining? We were very fortunated to not have a second one but was told that would be the reason for a second one for her. Feel free to private message me and I will give you my email if you would like it. It is much easier.

[curlyozmum]

question re chiari

Hi Shannon, just a quick question if you don't mind my asking, how come your daughter needed a second decompression for chiari? My daughter was diagnosed at 9 with scoliosis, MRI revealed chiari 1 and whole of cord syrinx. She had no other problems to alert us to this. In May last year she had a decompression and MRI at 6 months revealed a significant improvement in her syrinx. We were told at the time of surgery that a few curves will virtually disappear after decompression if it is done before 10 years of age (our daughter was 3 weeks shy of 10 at time of surgery so we hoped), some will not progress any further and some will continue to increase. Her curve kept progressing to 73 degrees (15 degrees in 18 months) and she had a spinal fusion 6 weeks ago and has recovered wonderfully. Good luck with the bracing. Kind regards Di

[Mom37]

Hi Shannon, just a quick question if you don't mind my asking, how come your daughter needed a second decompression for chiari? My daughter was diagnosed at 9 with scoliosis, MRI revealed chiari 1 and whole of cord syrinx. She had no other problems to alert us to this. In May last year she had a decompression and MRI at 6 months revealed a significant improvement in her syrinx. We were told at the time of surgery that a few curves will virtually disappear after decompression if it is done before 10 years of age (our daughter was 3 weeks shy of 10 at time of surgery so we hoped), some will not progress any further and some will continue to increase. Her curve kept progressing to 73 degrees (15 degrees in 18 months) and she had a spinal fusion 6 weeks ago and has recovered wonderfully. Good luck with the bracing. Kind regards Di

Glad to hear of her quick recovery. Just wait until 6 months. It is so wonderful. It is great to be moving on after Chiair and Scoliosis take over. My duaghter was 12-13 and now we are not on the forum much but always happy to hear great stories and don't at all mind questions. either of you feel free to private message me and or email me. I like to hear of others with as quick of a recovery and wish all others the same! Hang in there!