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need advice or feedback

Postby das123 » Fri May 18, 2007 5:38 pm

my 10 year old son was diagnosed with scoliosis 18 months ago. he went for xrays every 6 months since and his curve has gone from 18 degrees to 24 degrees. after his last checkup at the end of april his ortho sent him for an mri. the mri showed acm type 1--1.5 cm. luckily my son really isnt showing any symptoms--an occasional headache and mood swings. we have an appt at johns hopkins with dr ben carson on june 15. his ortho said the acm is the cause of the scoliosis--has anyone ever heard of this? do you think surgery is necessary with the symptoms he is showing? ortho says they may just monitor his condition. this is all very new to me and i would appreciate any feedback. thanks
das123
 

Postby mac » Fri May 18, 2007 6:22 pm

das, welcome to the board.

mac
Last edited by mac on Sat May 19, 2007 2:08 pm, edited 1 time in total.
mac
 

Postby cash71 » Fri May 18, 2007 6:57 pm

Hi,

Welcome to the board. I'm glad you found your way here. I would second Mac and say if at all possible go to TCI (The Chiari Institute) for an expert evaluation. They also have some really great videos on their website to educate yourself. Go to www.thechiariinstitute.com click on the videos tab and watch away!

Another website www.conquerchiari.org breaks research articles down into plain english making them really easy to read and understand. They actually have about 5-6 articles about scoliosis. One that looks particularily interesting entitled "Study indicates types of scoliosis that indicate Chiari" Their links never work but if you go to the homepage click on research articles in the center then scroll down thru the articles and near the bottom is a section about scoliosis.

Hope this helps and good luck,

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby Sandy » Fri May 18, 2007 7:21 pm

Das,

Welcome! Glad you found your way here. You also may find more valuable information in the pediatric section. THere are wonderful parents there with lots of experience.

In regard to your questions about surgery, treatment, I must remind you that not one of us here is qualified to offer expert medical advice, that must come from doctors and doctors alone.

We are simply a support group, and wonderful support group indeed! Your son's case is unique, as is every case, and I'm sure there's lots to consider that the doctors are aware of and will share as you seek treatment.

I can offer you my support and a gentle hug as you go through this difficult time, though. So here, please accept my offer and as always...

I'm here for anythign I can do.

love,
sandy :D [/b]
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Postby hartagold23 » Sat May 19, 2007 10:38 am

Hi,

I just wanted to say welcome and chime in with another idea:
First of all, did the MRI cover the complete spine? If not, you may want to have the lumbar spine checked out as well. Sometimes there is a hidden condition called "occult spina bifida," which can also cause scoliosis and pulling on the skull through some kind of tethering of the spine, to acquire a Chiari malformation. I'm no doctor, but it's just another thought.

Good luck!

Barb
SM/TCS/SB-lipoma/B12 def/Scoliosis/IBS. Had TCS surgery May 24 '07-syrinx totally drained! CSF leak repair--July 16 '07. Currently using a walker for short distances, probably permanently. Surgery was worth it to kill most of the pain!
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Postby drummergrl » Sat May 19, 2007 11:53 am

I don't think I can add a lot of medical advice, but I do have scoliosis and CM. My scoli was diagnosed at age 8 and my Chiari at 16. I wore a Milwaukee brace all the years in between. The chiari was discovered in an MRI taken to see why my right leg is weaker than the other. Basically I was told that my chiari/syringomyelia caused my scoliosis because the syrinx caused pressure on my spine = my 42 and increasing degree curve. I had the decompression 3 months later. So far my scoliosis has remained stable (although still in a nighttime brace). My neuro and ortho surgeons both agreed that the surgery and relief of syrinx pressure should stop my curve progression. It won't reverse it because I'm 17 and completely done growing, but with really young children (5 and under) it might actually decrease. I'm thrilled with the prospect of stopping bracing, so for me, the surgery was worth it just for that! I don't know your son's scoli facts, but for me, despite wearing a brace for 8+ years, my curve kept increasing. I was diagnosed at 27* and am now at at 42+ curve... but every scoli case is different. Have you been to www.spinekids.com yet? It's a board for kids and parents dealing with scoliosis, and it's amazing. There's a few moms on there who are dealing with younger children with both scoliosis and CM.
CM, SM, Scoliosis
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Postby daynthelife » Sat May 19, 2007 12:18 pm

Hi Das...first off let me welcome you to our support board. I would like to say bottom line this is YOUR child and you must follow your heart and do what you think is best for him. Please remember this is just a support site. None of us here are experts. The discussions we have here are mostly based on experience or research we have done ourselves. Some of us here don't have CM or SM but have learned so much from being here and learning right along with the rest of us.

If these conditions were cut and dried we'd have the answers we need and this board would most likely not be what it is. SM and CM are really unique to each individual. Some of us share the same symptoms and we have a variety of symptoms that are only exclusive to the individual. It's just not realistic to base your treatment on the experience or knowledge of others here. Again we are not experts. But we are here to help with anything we can and share OUR experiences and what knowledge we do have with each other.

On another note...I know several people with scoliosis and to my knowledge none of them suffer headaches...that is not to say it's not the case with your son but I would rely on the EXPERT advice of a specialist. If your son has been properly diagnosed with CM I would almost bet that is the cause of his headaches. Please keep in mind I DO NOT have CM. I have syringomyelia and this is only based on what I have read and what I understand from the experience of others.

Finding a specialist you are comfortable with is important. It may take some time to find one that you are comfortable with but in the end well worth it. Some of us here have gone through many, many Dr.s to find the one we feel is right for us. This is a bumpy road to be on...I'll admit but again we are here for you...to support you and help in anyway we can.

much luv,

Kathy
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Postby das123 » Sun May 20, 2007 4:46 pm

i want to thank everyone for the welcomes and the fast responses. you have definitely given good advice and given me alot to think about to be better prepared. thanks again and i will keep you updated on our appt :D
das123
 


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