Chiari Malformation Community
Just diagnosed last week with Chiari Malformation
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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Just diagnosed last week with Chiari Malformation

Hello, I am 40 years young and just got out of the hospital last night. Ive had vision problems for two years now. Last time I was told I had a TIA in 2010 cause I lost my vision and numbness but none of the test proved I had a TIA, I had MRI of head and nothing showed up. Two years passed and in the past month I've lost my vision twice for over an hour. I went to eye dr and she said eyes are find go to family doc. So I went to family doc on Thurs and he admitted me to hospital same day. They did MRI of head and neck cause I was also having palpitations. The MRI showed Chiari Malf, which no other test showed this before. The Neuro did not seem concerned just gave me a script for Topamax and said see me in four week. I also have two wholes in my heart congenital defects, and the ultrasound
yesterday show I had a aneurysm too but they said nothing to worry about. HELLO I am scared to death. I'm only 40 years old and you tell me something is wrong with my brain and heart. My mom had some type of cancer cells when she was prego w/me and Dr wanted her to abort me but she wouldnlt. The doc then said I would be deformed or mentally handicaped. Is this a conicedence? Sorry for misspelling btw. Well I'm thinking of going to Cleveland Clinic. I live near Toledo Ohio,. These doctor act as if this is no big deal and from the research I've done in 24 hrs I am scared. I travel daily to nursing facilities for my job and I audit charts and patient medications. They expect me to work Monday and my neck is killing me. Doc said go back to work youll be fine. OMG I am freaking out here. Please HELP I am also hypothryoid, and have sleep apnea and high cholesterol and anxiety. My feet burn at night like their on fire. The last six months I sweat with any activity at all. I mean my hair gets soaked I sweat that much. If anyone touches my arms or bumps into me I want to jump and scream because it feels like their punching me. I also have pain in the lower back I think sciotica area. Sorry for misspelling. Gosh I don't know what to do! I am scared. I was also in a card accident in 2000 and I had whiplash. My neck hurts every day and by upper shoulders and lower back. My feet are on FIRE every night in bed, but right now their ice cubes.
3 Comments Post a Comment
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620923_tn?1413427272

  Hi and welcome to the Chiari forum.

First, take a deep breath...and exhale...relax....I know u r stressed out, but that will only make ur symptoms worse...try to calm down.

Much of what u described is and are chiari and related conditions.....

Many with chiari have been dx'd with sleep apnea...some do well postop no longer needing the C-Pap nemore....some  do....but surgery can help this ....

Also many of us have an autoimmune thyroid condition so the being hyperthyroid is not uncommon either....same with the high cholesterol...this can be due to if u also have ehlers-danlos or the thyroid issues...

As for the sweating it could also be that ur pituitary gland is compressed...


  Ur research has u poised to head in the right direction......CC has been a great place for a few of our members....

U will want a CINE MRI to see if u have a CSF obstruction, and  MRI's of the thoracic and lumbar spine to rule out a syrinx, disk issues, tethered cord, ICP, POTS, ehlers-danlos, vitamin and mineral levels,....I did not mention sleep apnea or the thyroid since u already know about them.

  Know u r not alone in this....
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Hi
I also suffer from anxiety and this has me over the ROOF. It's allot to take in at once for sure. The report did say CINE study should be done. I am waiting for an appt with the UTMC. I am working on making a list of my symptoms and I have both MRI disc from 2010 and most recently last week. It baffles me this wasn't caught two years ago, they said it was a tia because of symptoms. I just want a proper diagnosis and treatment. I want to feel good again, after all I'm only 40 years old.

Thank you
April
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620923_tn?1413427272

  That can be Chiari as well....

2 yrs ago they may have seen it, but when u have Drs that were not trained on what chiari is or how it affects us, they only see it as an incidental finding....

The one thing u may have to face is u may always have symptoms and issues from this, but u can feel better then u do now....chiari is life altering....

Hang in there <3
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