Chiari ... Migraines... or both

[Cissylynn]

Dec. 2012 My oldest daughter, 23yrs was diagnosed with Chiari, 13mm herniation. Jan she had the decompress surgery. During those months we did a lot of research and learned a lot about Chiari.
About a year ago I took my 14yr-old to have her eyes checked. She was having blurred vision and bad headaches. Over the past year, her headaches have increased and her vision still blurry at times. I've taken her back to the eye Dr twice and he says her eyes are fine with the prescription she has. The week before my oldest daughters surgery my 14yr-old had a terrible headache and described it as it was going to explode! Said it felt like someone was behind her pounding on her neck so hard it was going through her head to the back of her eyes. I asked, just how many headaches do you get in a week? She said, mom I have a headache EVERY day! From the time I wake up till the time I go to bed. It never goes away. For the past year she has been alternating with Tylenol & IBuprofen. I asked her about other symptoms... She has horrible back pain along with constant neck pain/headaches, ringing in the ears, heart palpitations, tingling in her fingers and toes, difficulty swallowing, muscle tension/tightness, lightheaded (but not dizzy) blurred vision. I took her to the Dr the next day and had to beg for an MRI. Results came back slightly low lying cerebellar tonsils. We went to a Neurologist (he absolutely did not know anything about Chiari!) He spoke with a Neuro-radiologist to confirm "how low lying" they both said it was 5 to 6mm. It's not that big of a deal, it's not Chiari. She probably just has migraines. He wanted her to "try" a medicine and I said no I wanted another opinion. We then went up to the Children's Hospital and saw a Pediatric Neurologist. He looked at her MRI and said she doesn't have low lying cerebellar tonsils at all! She has migraines. (its hereditary and both grandparents suffered them) the other factor in this is she gets motion sickness and smells worsen her headaches - both are symptoms of migraines and not Chiari. He said she has continual consecutive migraines, meaning they never go away. But... what about the "other" symptoms? He said, what symptoms? She doesn't have any other symptoms. End of doctor visit! Looking back, when my 23yr old was 14, she too had these minor symptoms, "ringing in the ears, heart palpitations, tingling in her fingers and toes, difficulty swallowing, muscle tension/tightness, blurred vision" all through high school. When she turned 20 she began having the daily headaches and in December 2012 she started getting dizzy to the point she couldn't walk and that's how they ended up finding it.
Because my 14yr-old has motion sickness, headaches with smells and the hereditary factor of grandparents with migraines, I think it is possible that is the cause right now for her headaches. BUT for three other doctors to say she has (5-6mm) low lying cerebellar tonsils and this one to say she doesn't, makes me wonder... Could she have Chiari as well as migraines and it will progressively get worse like my older daughter's did?
Chiari runs in my family, my aunt had it (had - because she passed away a few years ago) my younger sister has it (had the surgery) and now my oldest daughter... could my younger daughter have it too?! Where do I go from here?

[selmaS]

  Yes that is Dr Oro he is well respected in the Chiari communities.

Do let us know what u find out : )

  Good Luck

[Cissylynn]

There is a Chiari Care Center in Aurora CO I will get another opinion. Thank you!

[actressmouse]

Sounds like you need another opinion...this time, from a Chiari specialist.  Everyone (even me!!) knows that any cerebellar tonsil 5 mm or more beyond the foramen magnum IS considered to be Chiari 1 Malformation.  And Selma is correct:  it's not a "malformation" of the brain insomuch as it's a malformation of the skull that houses the brain.  The overall anatomy needs to be taken into consideration.  For example, I had really thick, fat tonsils that were stuffed into the foramen magnum.  On MRI scans, it looked like a 6 mm herniation; however, when the doc got in there, it was obvious that there wasn't any room for any CSF to get by....Please consider getting another opinion.

[selmaS]

  Hi and welcome to the Chiari forum.

As Linda said, WOW...it does seem like Chiari is the issue...not knowing what symptoms ur older DD had b4 her DX and surgery, but I am sure it was similar to ur younger DD's issues.

The problem here lies with non Chiari specialist NS's that only look to the size of herniation to classify Chiari as chiari....ugh....the herniation is NOT Chiari , Chiari is the malformation of the skull which causes the herniation...and the length does not matter, what is important is if  it is creating a CSF obstruction.

A CINE MRI will show if this is an issue, and other MRI's should be done to rule out Syringomyelia, and disk issues and tethered cord, Then more testing to look for other related conditions such as ICP, POTS, and sleep apnea, and Ehlers-Danlos...as these conditions can affect how one feels and heals if surgery is done, and can cause all the same symptoms as Chiari.....so, if the Drs do not think  it is Chiari have them rule out all the others as well.

Not knowing where u r from, I can not say which Drs list u should use, but when research Drs ask if they treat Children as not all will.

Here is a link to our Drs lists so u can use to research.,...the list is NOT a referral...just a tool to use to find the right Dr for ur DD.
http://www.medhelp.org/health_pages/list?cid=186

[linnielou232]

Wow I guess you do have Chairi in your family.  I am hoping your younger one doesn't have it.  I'm in the process with my daughter who is 35 now who is experiecing the symptoms of it, praying it isn't.  Just wanted to wish you the best for you and your daughter.
Linda :)