Chiari Malformation Community
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Help :(

Hello :)

At the end of last month I fell down the stairs for a second time in thirty days and gave myself a nice concussion.  When the ER did the CT, they found a "possible chiari 1 malformation".  I researched it and it made alot of sense, primarily explaining my utter clumsiness (I'm 25 and falling down stairs) and my hx of migraines for 10 yrs.  
Three days ago I got out of the hospital after spending a night for severe head pain.  The MRI showed a herniation of 5.5 mm.  The neurologist that saw me said it was "borderline" and he doesn't know whether my symptoms are from a severe case of post concussive syndrome or the chiari.  I have two appt scheduled coming up, and another MRI to see the CSF flow and any blockage.  The first CT said that there was fluid buildup in the base of my skull.  
I'm an LVN at a subacute rehab, and I'm in so much pain it's hard to work!  Is anyone else going through the same thing?  Any advice?  I'm desperate :(

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Avatar_m_tn
There was a similar posting just like what you are experiencing on this forum the title is "cant walk no diagnosis." Check it out. My prayers are with you! Look at the bright side...there's no tumor involve.
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620923_tn?1405964489
Hi and welcome to the Chiari forum.

First let me ask how u were feeling when u feel..was it just losing ur balance on the stairs...or did something else happen?

Drs that gauge chiari as mild from the size of the herniation are wrong.....it is lack of CSF flow and overcrowding plus symptoms and or quality of life.

It is possible to have a much smaller herniation and suffer much more than one twice as long....the width of the herniation is  more of an issue than how long it is.

"selma"
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620923_tn?1405964489
Hi...I think u r mistaken as to which forum u r in...as u have not joined this one, nor have u posted here b4....

I also could not find a thread containing the info u suggest....if u can include the link that would be helpful.

"selma"
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1546631_tn?1321646804
Ok so it has been a year, and alot has changed. The first neurologist just wanted to give me vicodin or codeine, which I turned down. I told him I would rather fix the problem than cover it. My next one has been great, but after a certain amount of time, the meds stop working. Currently I am taking zonisamide 300mg daily, voltaren 75mg twice a day, hctz 25mg daily, amitryptalline 50mg daily, and a few others for bp and dm. He said I have "borderline sleep apnea" and gave me a choice on using the bipap. I also was referred to a neurosurgeon by him, who said the blockage isn't enough for surgery in the CINE mri. That appt. And MRI was almost a year ago. Now, we have been at a standstill, just trying med combinations. Anyway, the new symptoms are: insomnia, poor word recall, slurring words or it coming out as jibberish, left arm and leg weakness to where I am falling or dropping things, and difficulty concentrating. My question is, does anyone else have these with "minor blockage" or should I get a second opinion? Do I need more MRIs if the last one was so long ago? Should I seek out a specialist or keep working with the neuro I have now? Sorry its so long, but I feel like I'm going crazy from the pain and other symptoms and I just want it all to go away! Thanks :-)
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1546631_tn?1321646804
Oh and extreme nausea
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1546631_tn?1321646804
Oh geez...and ear/jaw pain, twitching eyes and hands, and dizziness. Ok I think I'm done. There you go, forgetfulness in action lol
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1306714_tn?1327260680
I would suggest for you to have another Mri if it has been a year and it sound's to me your signs are progressing.  Only you know how trusting you are with the NS you have.  It is good to have someone who you trust and are comfortable with.  I wish you the best.   The best advice is that I can give you is to get another MRI and see if it is progressing.  Keep us posted.
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1546631_tn?1321646804
Thanks for answering :-) I think I will do that. And it might help that I changed jobs so I might have to do it all again anyway to get the right referrals through the insurance. I feel bad for my family because I have to resort to "tv day" at the moment because I can't get off the couch :-(
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620923_tn?1405964489

  I agree with linny, with new symptoms u need to report those to ur dr and a new MRI would be in order since it was a yr ago the last one was done.

May I ask, was the NS u went to a Chiari specialist?

    "selma"
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1546631_tn?1321646804
The NS I went to said he has dealt with chiari cases before. I'm not sure if he was a chiari specialist though. I don't remember his name because it was so long ago :-( I definitely am going to make an appt. with my Dr as soon as my insurance starts this month.
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1546631_tn?1321646804
How often does everyone usually get MRIs done?
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620923_tn?1405964489

  Hi...MRI's and how often u get one will depend on ur Dr...but for the most part if u have a MRI and r seeing a new Dr, if the MRI  is more  then 6 months old they may require a new one, especially  if u have new symptoms.

And then to monitor it may be 1 a yr unless u develop new symptoms....

Post op it again depends on the Dr and if u develop new symptoms.

    "selma"
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