Chiari Online Support Group

Stunted leg growth

My son is 5 years out from surgery. He is 17 and is one leg has not developed correctly. It is an inch shorter, very little feeling and no muscle tone. They are saying it’s from the nerve damage prior to his surgery. We only found out that he had Chiat because he ended up with his toes all dropping on that leg. Has anyone else heard of this and had any success in correcting it. Thanks

Did he have synrixs in his spine. My son has Chiari and the neuro said that he would not operate on a my son unless he had syrnixs as this puts pressure on the nerves in the spine and it can stop growth or damage the nerve endings

Wow! Have you sought a second opinion? As I’ve understood it, the presence or absence of a syrnixs would not be the only determining factor for surgery. How symptomatic is your son? Do his symptoms ( related to his Chiari) impede his everyday life and the quality thereof? I’m curious. My 11 yo daughter was diagnosed in August. Her herniation is only 6 mm and she has no syrinx ( that has been identified thus far), however she is very symptomatic and it is definitely interfering with her daily life. By many doctors “standards”, her 6 mm herniation alone is reason enough to deny her surgery. I am pursuing a second opinion for her because Chiari has completely disrupted her life and the quality of life she has. Any input you can offer is greatly appreciated.
Kindest Regards, Angel

We live in South Africa - there are not many neurosurgeons that know about chiari - we got 3 opinions and all said we should operate as the pressure on the spine due to syrnix could cause nerve damage - they said one day he could wake up with a limp arm or leg and it was irreversible. Another lady who I have become friendly with - her daughter has chiari and saw the same doctors and because she did not have syrnix refused to operate. We decided to operate after a long deciding - as a parent it is hard making those decisions but his chiari was squeezing his throat - he felt like someone was strangling him most days and then could have 8 panic attacks in a row . He refused to attend school and did not even want to go out the house. He had is surgery in 2015 and after a few years a few of his symptoms came back which made him spiral out of control due to anger. He is now home schooled and slowly not so angry anymore. His hands still shake/ringing in his ears/ tired and nauseous/ angry outbursts if he is about to get a snotty nose/sensitive eyes- fortunately he does not get headaches often. Try keep her as active as possible even if she does not want too - find something like dance or gym classes or any nice sport at school - because it does mess with mind and you do not want to go out or move but keeping that spine and brain fluid moving is good

1 Like

May God bless you and your son. I can already see the effects this is having on her mind— thought process. She no longer wants to go to school either… she used to love school. I keep her outside as weather permits and have her help me with flowers and plants. We are looking forward to our spring garden. Thank you for your input, it’s so easy to get lost in all that is Chiari.
Kindest Regards and best wishes, Angel

Hi

Is this your email?