I was recently diagnosed with Chiari (2 weeks ago) and have an upcoming appt with the Mayfield Chiari Center to discuss surgery. I have a multitude of symptoms with the worst being autonomic dysfunction. I have also been diagnosed with Ehlers-Danlos Syndrome. With EDS being a genetic disorder, I can see that my son shows the same s/s. But I am wondering if he also has Chiari too and we just don't know it.
I have plagiocephaly (flattened occiput), my son has this physical feature too. My son has significant weakness and complaints of back & neck pain (but he hasn't ever complained of having headaches). It seemed that when he hit puberty and had a growth spurt, THAT's when all the problems really hit for him. (He is now 16 years old. ) I am wondering if the sudden growth spurt effected the cerebellopontine angle and made a chiari malformation worse and/or symptomatic. He has SEVERE problems with depression, social anxiety to the point that he has absolutely NO friends and cannot talk to people. He used to be very popular, Vice President of his class, played football, & was considered to be one of the popular kids and somewhat of a "class clown" as well. He was full of energy....laughed and loved life. Now he is a totally different person. He has lost all motivation and this straight A/B student is struggling to even pass most of his classes. His memory is non-existent. He can't remember what he's been taught in school or when his tests are coming up. He has been on every anti depressant, at the highest dosages that his pediatric physician could prescribe. His doctor said that my son is THE most difficult case he has ever had and cannot understand why the medications are not helping him. He said that at least one of the meds always works for his patients. He has been on Zoloft, Celexa, Wellbutrin, Cymbalta, and now he is seeing a psychiatrist and is currently on Effexor XR. It's not working. This has been a battle for the past 4 years.
My son has gone from being a driven & motivated, popular kid, suddenly becoming someone that nobody recognizes, including himself! He has cried to me and said "I don't want to be this way." He wants desperately to go back to the way he was before, but medications and therapy has not worked. I would go to the ends of the earth for my son and we have a wonderful relationship. He is honest with me about how he feels. He's fully aware of the changes in himself, he doesn't want to be this way, but nothing helps. It seems like my son has disappeared and no matter how much medication & therapy he has received over the past 4 years, he has become more and more withdrawn & depressed, lacking any motivation....fatigued & weak all the time.
Any advice how I approach this? I know that a doctor won't order an MRI without valid concerns regarding the possibility of a chiari. I've never read about psychological manifestations being extremely pronounced (more so than the physical s/s of chiari) so I don't know if I'm barking up the wrong tree. I haven't asked him a lot of specific questions just yet to dig further and see if he has some of the other symptoms that he just hasn't ever mentioned. I just feel at a loss. I'm watching my once vibrant, active son wasting away emotionally and physically. Finding out that I had Chiari, it made me wonder if this could be the etiology of his problems and maybe that is why no doctor in the past 4 years have been able to help? IDK :(
Any advice would be SO greatly appreciated!! (I've attached a pic of my son during his happier days. Caught him with his eyes closed, but he looked so darn happy. I want that back for him so badly.)
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