Need Chiari Advice

[KGill18]

Okay, so I have Chiari type 1 which for most of my life (I'm only 17) was asymptomatic (besides a few things). This past year though it has become very symptomatic so I contacted a peds neurosurgeon who was listed to specialize in Chiari, my mom called, but the place scheduled me with a different doctor. He did a full spine and brain mri along with a cine mri, today they called me and they told me I had no tethered cord, no syrinx, so blockage, and that my chiari was too small (7mm) to operate on and too stable (what does stable mean?). They basically dropped me and told me to go back to my neurologist. What should I do? I have a boatload of symptoms that greatly affect my quality of life, but I feel like no doctor will take me seriously because my chiari is "too small". I've had double vision for as long as I can remember, I have POTS (I don't know if that is chiari related but it causes lightheadedness and dizziness), I have Ehlers-Danlos type 3, I'm numb all over, I can't feel my toes or certain parts of my feet, I have countless vision problems, I have migraines that are nearly impossible to control with medication plus the chiari back of a head migraine and neck pain, I have chronic fatigue and pain, and just a lot of those oddball chiari symptoms. The only good thing that came of that appointment is that I have updated scans, and that the doctor said I have minor disc herniation in my neck, but that I shouldn't be having symptoms from it, the notes on the MRI say I have "disc osteophyte complex" or very mild disc degeneration in cervical spine. I don't get it, is all of this caused by something else but just looks like chiari? Have you guys dealt with this kind of thing? What should I do? Has anyone had a successful decompression with an "unsignificant" chiari? Should I just give up?

[lasel22]

Hi KGill. I had a chiari that ranged in size from 4-8 mm depending on where it was measured. Decompression surgery helped me a lot. However, over the course of 2 years some of my symptoms are returning. I've been diagnosed with craniocervical instability now which could be helped with a fusion. I would recommend sending your images to a chiari specialist that only deals with chiari and related conditions as selma suggested. Also, an upright mri may be helpful in your case since you do have EDS and are very young to have disc degeneration.

[ShortyC17]

Research and find a neuro who knows about it I saw 3 docs b4 I was diagnosed and didnt even know it existed. I'm 3 weeks post surgery and it has relieved some symptoms
Dont give up. I spent years dealing with this not even knowing it existed. Best of luck

[SC_Chiari2009]

You sound like me very symptomatic but no answers. I think this is because I have found since moving from Denver to TX a lot of doctors do not know what Budd Chiari is. Some pretend they do. Be careful learn as much as you can so that you can tell who knows their stuff and who doesn't

[selmaS]

Hi and welcome to the Chiari forum.

YES, POTS and EDS are both Chiari related and it is not the size of the herniation for them to consider surgery but if there is a blockage of CSF fluid....did you have a CINE MRI?
Also, the EDS and POTS can be causing most of your symptoms....so a NL would be the Dr to help.....

And do you know if this Dr is a true Chiari specialist?

BTW- my herniations were 4mm and 6 mm and I had surgery......but I did have restriction to CSF flow as well as a partially retroflexed odontoid.

I would not give up, but make sure the Dr is one that treats only Chiari and related conditions.