Anita J
Thank you! My daughter is 28 and 4 years of subtle things happening to her. Chest pains and a lot of anxiety for her and put her on antidepressants, no help. This spring her fiancé mentioned she was having “spells” and would pee the bed. I mentioned seizures and from there she has a grandmal seiUre and with a ct nothing was found. MRI has been done chiari 1 found. She is having speech problems seizures and neck pain headaches and periods of partial seizure activity. 2 day EEG done. Diagnosis of seizures. Her seizure specialist dismisses any link for the chiari. She has episodes of a very low heart rate and a very fast heart rate. All kinds of chiari 1 symptoms, in fact all of them. Now I am worried the chiari is so far advanced that seizures are from the chiari, please tell me I am not crazy. She needs to demand to be seen by neurologist that specializes in this problem. Right???
7 minutes ago
I would most definitely recommend it. If her seizure specialist (I'm guessing a neurologist specializing in epilepsy) isn't willing to even consider the Chiari is involved, I would request a second opinion or suggest a consult with a Chiari specialist, or at least a neurosurgeon with knowledge of it. As far as my NS was concerned, Chiari can become so advanced that other diseases become diagnosed and the Chiari goes unattended (for me it was more like ALS/Parkinsons.) If the doctor still refuses, seek one out on your own (or encourage her to.) The facility will give you a copy of all images on a disc (MRI, CT scans, etc. It would be especially helpful if she had a CSF flow study done too.) Often times specialists don't REQUIRE a referral. Best Wishes!! XOXOXO
Thank you!!!
Anita, welcome. a neurologist cannot treat Chiari, in fact I am not sure there is such a thing as a Chiari neurologist. They can prescribe medications, but even if a med works it will only work on symptoms. The only way to stop the progression of Chiari symptoms is to have the surgery. There are many people with Chiari who also have seizures. Your daughter needs to be seen by a Chiari specialized neurosurgeon. A brain surgeon is not specialized enough, she needs a NS with lots of experience with Chiari, Ehlers Danlos Syndrome, and Dysautonomia. Seeing an NS does not mean she has to have the surgery, but you need the full picture before you decide. The heart rate issues sounds like possible dysautonomia - something many of have secondary to the Chiari.
There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.
Vitamin d deficiency
Magnesium deficiency
Vitamin Bs deficiencies
Syringomyelia /syrinx- cyst within the spinal cord as a result of CSF hypertension/blocked or partially blocked CSF flow.
Ehlers Danlos syndrome- google the Brighton Critetia and the Beighton Criteria. This can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done without correcting the CCI you may continue to have the same symptoms or worsening symptoms- a second surgery will be required. Finding a surgeon who screens for CCI is tough- not all Chiari surgeons have started screening for and treating CCI.
Dysautonomia- Dinet.org
Tethered cord syndrome
Sleep apnea
I am glad you found us and keep us in the loop 
Jenn