My son was in his senior year of high school, basketball player, and after a weekend tournament called that he felt "weird" and his friends were making fun of him at lunch, they said he was acting drunk. He nearly immediately had severe headaches & back pain in combination with odd speech (couldn't recall words), vertigo, leaning left when he sat, stomach pain, and issues swallowing. He would have what we eventually called "episodes" where all of this including confusion was intensified for intervals of about 2 hours in duration. Initially, the neurologist said he had meningitis, but they did a spinal tap, which was negative. All MRI's & CT's, normal they said. He never received a diagnosis. We had to pull him out of school because he couldn't function for an entire day, but about a month later the symptoms subsided EXCEPT for the "stuffiness" at the base of his skull and severe back and neck pain. Several months later we took him to a NS, who noticed he had Type I ACM. He gave him muscle relaxers and said the ACM would likely never cause him a problem, and it likely was not related to his problems a few months prior. Now, he's 20, and had to leave work today because his neck and back pain were so intense. This literally started at the moment the other issues began, and is something he deals with every day. Has anyone experienced anything similar with ACM? We cannot find a doctor to see him, the NS says he doesn't need to, a non-surgical Ortho doc sent him back to a "spine" Ortho who now doesn't see neck pain patients, only back. HELP?
With straining comes more pain for many with Chiari, the symptoms cycle so we have ups and downs and since MRI's have not been around all that long, there r not many Drs that understand just how chiari can and does affect us.
We do have a list of Drs that the members here have been to and liked...it is not meant as a referral, and not all Drs on the list may be true chiari specialists, but it is a means for u to start ur research of Drs.
Much of ur description of how he feels is pretty typical for many of us.
Seems the more active we r the worse we feel....
A CINE MRI would be the next step to see if he has a CSF obstruction, then a MRI of the cervical, thoracic and lumbar spine to rule out a syrinx, disk issues and tethered cord...we also must look at ICP, POTS,sleep apnea, and ehlers-danlos and thyroid, vitamin and mineral levels ...as they all can affect how we feel and heal should he have surgery......
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