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Avatar universal

Help, please read my story

I have struggled since last year with all the symptoms, to find out I had Chiari. Been hospitalized three times for unbearable pain. In May I finally got a CINE and it says there is obstruction and along with that sub dermal mass. I had neurosurgeon say, it's up to me to go forward with surgery. Had 2 opinions since then and another says I have way too much going on for him to help, herniated disc, spondylitis, stenosis, he said I need to see therapist cause I started crying which I am cause it's taken over my life.

My MRI showe 1 and 4 mm protrusion in Sept 2014, CINE showed 7mm May 2015. With diminished csf flow. Third neuro said he doesn't agree with findings. I understand Drs have different opinions on treatment, but how can a dr not agree with tests results?

My head always feels like my eyes are being stabbed, along with, dizzy, tremors, blurred vision, memory issues, the list goes on.....

Who do I believe? What do I do? I know the obstruction is clearly the thing to look at when deciding treatment. All 3 Drs deal with Chiari.
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620923 tn?1452915648
COMMUNITY LEADER

  There are a few types the 2 mains ones are obstructive... something blocking the airways when the throat relaxes..., other one central...is when the brain does not send proper  signals to control the muscles that control breathing....

Chiari could be responsible for the central type....but I do not some that were DX'd with Chiari that had the obstructive type.
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Avatar universal
What is the sleep apnea caused by?
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620923 tn?1452915648
COMMUNITY LEADER

  Did you have a sleep apnea test since you are having breathing issues?

A PCP can do that for you...it can be set up to be done in your home and is covered by INS....ask your Dr about NOVASOM....
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Avatar universal
Sorry I have t responded, not feeling well. I feel like I can't catch my breath most of the time. Not sleeping well either with the headaches. They say no to the above mentioned illnesses, but not sure about vitamin levels. Csf flow is diminished and I know that's from CINE.

I feel down a lot and a decision needs to be made. These Drs are all educated with Chiari. So they say. My ins only covers these Drs.

I'm still waiting on disability which is stressful. A lot of stress that I need to learn to handle. Tremors and speech are worsening as well. Still very confused.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi so sorry you are going thru this.....it is easy for a Dr to not agree with test findings since it is possible each MRI was done on different settings and different machines....so results can vary....it can make the herniation appear to shrink or grow depending on which slice they look at...

Not sure if the Drs you have been to are true Chiari specialists but that is where I would suggest you start or go to next....deal with or treat Chiari is not indicate a specialist. Did they test you for ALL related conditions? Most of the specialists can help regardless of the other issues you have so if it is too much for a Dr they are not well experienced with Chiari. JMHO

Did they test your vitamin and mineral levels? Test for Syringomyelia ? EDS, ICP, POTS, CCI, sleep apnea?
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