Beyond Confused

I went for a 3rd opinion at the Cleveland Clinic with Neuro Surgeon Violette Racions on Tuesday. I almost skipped the appointment but decided last minute to go. I expected her to say you dont have Chiari and your dysautonomia is caused by something else. WRONG! She said the MRI shows a 4mm herniation. At the same time she showed me different measuring points. If you measure from a different area it was less than 1mm. Confused after hearing what she said and showed me we began to talk. She was very kind and I was blown away with compassion when speaking about her patients. She said she would not advice I have surgery at this point. She said if my symptoms continue to get worse then we can talk again. She also felt I'm a boarderline case and thats what the two guys from Akron University said. At the end of the apt she wanted me to have a full spine MRI so I'll be having that in a few weeks.

So a recap of the last few months:

I sent my info to NY Chiari Institute and they wanted me to come out.

I went to UPMC saw a Neuro Surgeon and they felt my herniation is not whats causing my issues.

Spoke to the two guys at Akron University and they felt I'm a boarderline case.Cleveland agree's but feels surgery is not the way to go...

On top of that Dr. Racinos said the outcome of boarderline patients arent to great 50/50.

Where to go from here?..

She kept referring to my cineflow. She said the flow was good. Did you or your friend have a cine flow mri?

I know you must be very confused. You can have Chiari symptoms regardless of the size of your herniation. I think all the NS's are taking a let's see stance. Which is good. It sounds like you like& respect Dr.Racinos. I would have the MRI & see what that shows. Then get back with Dr. Racinos if your symptoms change. Hopefully they can treat your symptoms and you will never have to have surgery. Do you have a Dr'. that will treat your Chiari symptoms?

NS can usually tell you have a good CSF Flow without a CINE MRI if your herniation isn't bad. That's why she told you that you had a good flow. The only time you need a CINE MRI is if there is a question about the herniation being large enough to hinder proper CSF Flow.

I was happy that the doc did not want to do surgery right from the get go. I feared that more than anything with both Neuro Surgeons I met with. Its just so frustrating/confusing to me and others with my current situation. I need to step back for the moment and just wait till I have my next MRI and see where it goes from here.

For POTS/Dysautonomia I've tried all kinds of things. I've been on 4 beta blockers that made my breathing issues absolutely horrible. I thought I was going to die on them. I tried Neurontin but it made me tired and very mean. I tried Cymbalta and it made my myoclonus jerks/tics worse. Effexor had the same result and the jerks were twice as violent. Ummm... Lets see what else. Oh I've tried busperin and it made me more dizzy same with I tried a few other drugs in that category and they were all the same. I was on a prednizone pack and it caused horrible halos in my eyes, they took about 6 months to go away. They hooked me up to do iv infusion with Kepra, Magnisium, and some other stuff and that caused all kinds of hell on me.

At this point I try to except whats going on (even though I have a hard time with that). I eat decent and frequent, stay over hydrated, exercise including lifting weights and doing cardio, and most important balance out pushing myself and listening to my body. I avoid caffeine, booze, crowds, stress and overdoing it.

POTS is a more garbage can term and its just a collection of symptoms. Dysautonomia is when the autonomic nervous system is malfunctioning. As far as type, no they havent told me. The doctors that understand it say we need to find the "root" of the problem. In my eyes people with Chiari and Dysautonomia, Chiari is the root cause.

I have pain but they dont feel thats POTS. Headaches yes but pain in my hands, feet, and other areas are not from POTS according to my Neuro.

Yes sorting through the mess of 100 symptoms is an issue in itself. What has caused what?..

I still say put out the fire and a lot of issues will go...

Sounds like that doctor for your third opinion is a keeper!

I've asked all the docs (except the neuro surgeon if I could have EDS). They all tell me "no". However I broke my elbow years back and walked around with it broke or should I say fractured for 3.5 years before having it fixed. I have joint issues from time to time as well.

Abby said:

What your doctor was referring to, could be Ehlers Danlos, which we think is responsible for my POTS & Chiari. I. Was diagnosed with EDS last week.
I put some information out on a discussion which you might want to check out.
My genetic doctor explained their theory on how they are connected and now it maked a lot more sense.
Sorry you can't take meds that help you. My new beta blocker has really helped me and drinking a lot of gador ade and power aid.
Hope your doctors find the right combination that will help you feel better.
If a doctor wants to rush into surgery I would be questioning if they cared more for money than me. Another thing maybe you may consider is having a genetic test for EDS. Best to you.