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Avatar universal

in the hospital, formally dx

After a year+ of being told my MRI was normal by my doctors (Who only read the report) I got so fed up and mailed it to Dr. Heffez.  His nurse called and yes you do have chiari and you do have a congenital cervical stenosis.  I am getting worse quick and I am scared.  

I am actually currently in the hospital.  Last week I started looking strength in my legs.  By Sunday I was propped at my stove trying to cook because I didn't have the strength.   I had horrible tremors too.  First the hospital figured I had to be on drugs - Once that was ruled out they figured anxiety.  I was given ativan and calmed down so they were going to release me.  The nurse helped me up and said no you shouldn't be going home when she saw my trying to walk so I was admitted.  


I was given another mri, shows low lying tonsils 4mm, 3 bulging disc in the neck and narrowing of spinal canal.  The doctor didn't even tell me this, I made the nurse read it to me. She said "Oh I see you still have tonsils". Shake my head! The doctor said it was normal.  She also said Chiari 1 never causes issue!!!!!!

So here I am lost ready to give up this fight.  I can't even walk.  They say it is in my head and I need to see psych today.   I don't know what to do.
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Avatar universal
Thank you!
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi....well there are Drs in CO, and Chicago, Ill...that I would suggest u look into....get copies of all testing reports and MRI's on cd so u can show to the other Drs.
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Avatar universal
I am in Minnesota.  My husband called the Mayo today.  They will see me if this doctor signs for a transfer.  It's been 36 hours since I have seen the doctor.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi.....I have no idea where in the country u r located to offer whom to call....there are Drs that may offer surgery, but u want a true Chiari specialist....and even then there are some better then others.

U also need to find out what related conditions u may have b4 surgery is considered....

I know u r not in a position to wait long for answers or to do research, but this is y I am asking where u are and where u might be able to get to....
Helpful - 0
Avatar universal
Tell the psych team to look up symptomatic chiari one malformation and than tell the doctors that its in the doctors head not yours (also known as ego)
Helpful - 0
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620923 tn?1452915648
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