Any advice on what to do about my chiari!

[Trae21]

Hello there! My name is Trisha, I'm 21 years old and got diagnosed with a chiari malformation when I was 16. It was really hard to deal with on a day to day basis, I had to quit dancing because of the dizziness, nausea, headaches and sometimes fainting. I have gotten used to living with it without any kind of treatment because I was told that it is not severe enough to have surgery. Since it is affecting my life daily, I feel that it is severe enough for me. Last night I experience (for the first time) urinary incopitince. It happened while I was feeling very dizzy and confused. I felt the headache coming on and was getting up to get some Advil. I had severe pain in the back of my head and while I was walking to the kitchen I felt my pants getting wet. I didn't even feel like I needed to go to the bathroom! I lost complete control over my bladder. Can this be from chiari? I need help! I just got married in October, my husband is so loving and supportive of me, and always helps in whatever way he can when I'm having my symptoms. But this was so embarrassing! He was so helpful but I don't want him or me to have to deal with this for the rest of my life! I went to a neurologist in Portland, OR and he said that my chiari isn't severe enough for surgery. He put me on some medication but it's side affects were awful, and barely helped with my symptoms anyways. Any advice?? Does anyone know of an actual chiari specialist in Oregon? Thanks in advance!

[selmaS]

  Hi Trae21 and welcome to the Chiari forum.

Too many Drs are not aware of how Chiari can and does affect us and how serious it can become....some it may never develop into a surgical option...but far too many of us do.

More testing is needed to see if you have a CSF obstruction...as mentioned above a CINE MRI is done....then MRI's of your complete spine to rule out disk issues as well as syringomyelia, tetehred cord....Chiari alone is not always the cause of all of the symptoms we experience.

As mentioned above, CSF flow needs to be checked via a CINE MRI....they also will review for CCI and retroflexed odontoid....

Other related conditions like EDS, POTS....can also cause the same symptoms so they too need to be ruled out.

Here are the names of Drs for your state....keep in mind this is not a referral nor an endorsement.....the list is meant to be used to research the Drs, visit a few compare them to see who is right for you....and know you may need to travel out of state in order to have the best care,

[poosygirl]

I am not an expert but have lived with chiari for 61 years without any treatment so far. I would say that what you are experiencing is serious. Dizziness, incontinence and confusion are signs of hydrocephalus, or maybe a syrinx. You need to find a specialist who will do a CINE MRI to check your CSF flow, and MRI's of your entire back to look for a syrinx. Chiari can be progressive so you could have gotten worse since last seeing your NL. Hang in there but continue to do research and find the right doctor. Good luck to you!