Chiari Malformation Community
New Symptoms and Check-Up
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New Symptoms and Check-Up

Hey all. I'm going back to my NS for a check-up this Friday, I'm 18 months post-op now. My Chiari decompression went super well, couldn't want any better, and my cranial reconstruction is almost entirely solid by now. The Chiari symptoms have not re-occured, and in general I am really well, (except for those nasty weather days, we all love to hate).

What bothers me is that a few weeks ago I began to have new and different symptoms: vision in one eye has changed, trouble with my leg on the same side upon standing and my hand dexterity on that side too is slightly weak. Screams nerve, I know. Head pain totally on that hempisphere, but not that pregnant head Chiari pain. It's a dense pain. Had an MRI last week and the cerebellum looks great, no herniation, but the report suggests compression on the spinal cord somewhere cervical - and yet the radiologist ruled out syrinx (love those radiologists)

Does any of this sound familiar? Ideas? My NS is cpecialist who trained at the Chiari Institute, so I'm confident. But can you think of any questions I should ask him, or symptoms I should consider to present?
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4816750_tn?1368808270
I am new with Chiari had my surhery in July 2012 along with some others at the same time.  Doing really good too.  The symptoms I had have went away and haven't returned and I have no new ones.  But I would let you NS knlw of all the symptoms or problems that are happening cause it can be the little things that  help.  They found my Ciari by me telling the DR in the ER that my arm went numb.

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1645944_tn?1305246937
Thanks for that. I'll write some things down. When you've lived your whole life with weird symptoms, it's kinda hard to know what to present to the dr. I mean, what is normal?

You make a good point, and I will remember that when I meet with him. Thanks,
Abby
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620923_tn?1405964489

  Hi Abby,

Had they ruled out Ehlers-Danlos for u? The reason I ask is those with EDS can also have ceriocranial instability which can cause issues in the cervical spine.

I agree with Frankie that u need to tell ur Dr about all issues/symptoms u r dealing with, in hopes it will help the Dr pin point what is going on.

Good luck
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1645944_tn?1305246937
Thanks. Just saw the NS today, and the good news is that he didn't see anything on my films that concern him. I have some degenerative disk in the cervical spine, but have had for years.

Dr Capocelli said that what I am having is common to a lot of Chiarians both pre and post surgery. It's called "Autonomic Dysregulation", which basically means that my autonomic nervous system is not responding in typical time.  He does want me to have the eye looked at by an opthamologist.
I am to drink eletrolyte-balanced fluids and walk daily to help my cardiac system to re-regulate and hopefully the rest of my autonomic responses with follow suit. It goes away with time, but I can modify my behaviors to try and help.

So glad to hear that it's not something scary. Just more Chiari related "time will make it better, eventually" stuff.

Thanks for your encouragement!
Abby
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620923_tn?1405964489


  Abby,   I feel the walking I did which I started with my walker when I came home was a huge help to me and how I felt as were the neck exercises it is important to move post op to avoid blood clots, scar tissue and the muscles getting tight....

Keep us posted : )
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