2 years Post Chiari Surgery and having problems

Symptoms and Treatments
1

Hi everyone,

Any advice would be appreciated.

I had my Chiari surgery 8/12/2013 - main reason was I was stopping breathing in my sleep. I had the bad headaches and eye pain and back and neck pain but the breathing was the main reason I did it.

I had neck surgery 9/17/2014- I waited to see if the Chiari would help take the pressure off my spine but it did not and I ended up with terrible pain in my arms and hands. The deciding factor for this surgery was I started to wake up and could not move either arm and I freaked out.

The problem I'm having is a few months back the Chiari pressure and headaches have come back and it is making me real nervous that it will all come back. I sometimes get the old feeling of breathing problems. Also, I have had episodes where I jerk awake because it feels like I swallowed my tongue, it is a very weird feeling.

I dont want to go back to my Dr who did the Chiari because he doenst seem to listen - My neck dr doesnt treat Chiari. I'm going to see a nerve DR to see if they can help. Part of me wants to bury my head in the sand and maybe this will go away but the other part is so worried Im going to have to have another surgery. My poor family has been through enough and I just dont want to tell them how bad Im hurting again.

Any suggestions would be great

Seeing a new DR and she really doesn't want to listen either , she justs wants to keep trying stuff. She put me on Topimax and it gave me an allergic reaction and now she wants to try botox shots - Several members have told me to ask for a CINE MRI but I cant seem to find anyone who knows what that is - I'm afraid I will be switchings DRS once again

2

Hello KB, I apologise if I'm confused but didn't you have a CINE MRI before in 2013 .... so how come you can't now find anyone who knows what it is? Can you not see the same doc for the referral again if that is what they recommend.

It is great to have docs who you have a good rapport with but I don't just want someone who will listen to me, I want someone who offers up and discusses the potential solutions with me and is in for the long haul with me to work through them until we find what works best. Please give your doc a chance to help you before you jump ship again.

3

Hello again KB, we've got a couple of members saying the same thing today about patient~doctors relationships so I've looked up a couple of internet resources that you may want to take a read through to see if any of the tips they suggest might help you:

WebMD 1) How to Talk to Doctors When They Don't Listen 2) Breaking Up With Your Doctor

And check out the Advice pages on When Doctors Don't Listen

Kindest, Jules

4

Thank you

5

I wonder whether the docs offices you've spoken to may not have understood what you were asking for? I'm guessing here ..... I've often seen cine MRI's more fully described as 'CSF flow study with phase-contrast cine MRI'

Here are a couple of resources that might help:

ASAP - Cine MRI

Medscape - Chiari diagnosis - imaging