Momma needing some answers about Chiari I

My 2yr old little boy was diagnosed with chiari I at 9months. The doctors also found his spinal cord was tetherd. They did a tethered cord release back in Feb 2011. Now back in November he started saying "my leg hurt Mommy." At first I just thought he pulled a muscle. But on Christmas morning we woke crying & saying his leg hurt. I got reall worried, so off to the Dr we go. They did xrays, everything looked normal. So I called his neurosurgeon, he did another MRI to make sure his spinal cord had not retethered, and it didn't. We have seen a orthopedic Dr too, to make sure there are no bone problems with his hip. He checked out okay there too. So the neurosurgeon, is suggesting we do a decompression. As being a concerned mother, I look at my 2yr old, and he looks and acts like a 2yr old should. I have read were people are experiencing pain. I want to know how and were there pain is. Does anyone have leg pain? I worry my little man maybe in more than what I realize at times. That bothers me to think my child being in pain. And how long has he felt it, and thinking its normal, because he does not know how to express his pain since he is only 2. i just want to understand how someone feels. Maybe it will help me with him. Still so confused about this all, but I want to make the right decision for him if he needs surgery. I hope this all makes since and someone can help me get some answers. Thankyou AndieK

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Comment by Andrea on February 5, 2012 at 10:34am: That does help me. Thankyou. I worry about my little guy all the time. I did find out the other day from his recent MRI that his still growing also. We go this tuesday to find what our next step is. I will keep you & your daughter in my prayers. Thankyou for your friend invite.

Comment by Dawn Stouffer Toy on February 4, 2012 at 9:25am: hello there...my daughter just turned 3 and she also had a thethered cord(released at 9 months old) and because of her Mri's for that we found her Chiari and at first they were just watching it and it continued to grow so they gave us no choice and said we had to do the decompression surgery so on nov 8 of 2011 we had it done...she is doing great (me not so well) i am a nervous wreck and she has alot of swelling they checked a few weeks ago for fluid build up and there was not any!!! but her swelling is really bad...the docs keep saying its fine and the swelling will go down it just takes a long time and i completely trust her NS...but to answer your question she acts like any other 3 yr old...she never showed or complained of any pain at all so i wander if she had any and just thought it was normal or if she never had any...its so hard with little ones... we go back in 5 months for a follow up mri and to see if he swelling has went down...and hopefully everything is good and that is the end of this process for us...I hope u and your family are doing well and i hope i helped in some way and my best advice would be to talk to you NS and if u dont like or trust them find one that u do...This is a big surgery and u have to have someone u trust dealing with it...If u have any other questions done hesistate to ask i am kinda new to this too but i will help if i can!!!!

Dawn T

Comment by Andrea on January 27, 2012 at 7:25pm: That would scare me to think my child couldn't walk. This is all scary at times. Carter has just recently started saying his head hurts. I'm gonna call his neuro dr to let him know tomorrow. Because I am scared it will get worse. I will pray for your daughter & you.

Comment by Megan's Mom on January 25, 2012 at 3:45pm: Andie, I know what you are going through my 14 yr old daughter over the past year has been complaining of head and neck pain and just over the last couple of months it has gotten worse. One day I have to pick her up from school because she couldn't even walk. She will be going in here to have the decompression done. I am worried not only does she has the Chiari I but she also has CP. I don't know how this will affect her. The Dr. is hoping that once the surgery is done she will no longer have any pain, these are my hopes as well.