What does this mean? Chiari and crossing eye...

[christiemon]

My presenting symptom of Chiari was that my left eye started turning inward in early 2012.  That lead to my MRI and my Chiari diagnosis with a 22 mm.  It was shocking - I almost never had headaches, just occasional head pressure.  Anyways - decompressed by a specialist a few months later - my eyes got a little better with rest but did not ever fix themselves and I wound up having eye muscle surgery to straighten them back 8 months after decompression surgery.  Now I'm a year and a half out of the decompression surgery and the back of my head has been really hurting, more pressure headaches and most recently my eye started turning in again.  What does this mean?  Who do I see?  My "homebase" neuro ordered a CT scan a few months ago when I started complaining of the pressure but didn't see any changes.  Do I contact my neurosurgeon?  

Thank you for your help = )

[christiemon]

Thank you Selma = )  You are such a blessing to so many people. = )

[selmaS]

  My understanding is you can have a 2 on the Beighton  Score and have EDS...

Oh so you did have a MRI of the entire spine?...that is good.

Really you have a sacral dimple and no further testing was done? ....That is surprising as I know this condition can worsen post op....

Keep  us posted on what you find out.

[christiemon]

Thank you Selma - even though I did go to one of the best, I asked the neurosurgeon regarding many of these things and did not get much answer.  I did not have Syringomyelia on the spinal MRI (which I requested) but "incidental findings" were multiple Tarlov Cyst - however no one said anything to me about it - I just saw it on the copy of my medical records.

I was rated high on the Brigten (sp?) score for Ehlers-Danlos during my neurosurgeon visit, but he didn't seem concerned and I have since seen a rheumotologist and a geneticist who do not feel that I have ED.

I have asked once about a tilt test for POTS and it never got scheduled.  I asked the neurosurgeon during my consult about the possibility of tethered cord since I have a dimple on my lower back (just to the left of the center though) and have hyper reflexes and he said yes he treats them, but did not feel the need to look for one.  

So basically I finally got worn out from being my advocate and being looked at by doctors like I'm some Googling crazy woman and just settled into day to day as many of us have. = (

I did get copies of pre and post MRI's - my neurosurgeon was very happy with the results.  

Thank you - I will contact my neurosurgeon - he's out of state and I have different insurance now, but hopefully I can get some help. = )

[selmaS]

  Hi...so sorry to hear you hare having these issues resurface......

May I ask, were ALL related conditions ruled out? Like Tethered Cord? Syringomyelia, ICP, POTS, Ehlers-Danlos?

Also did they check you for scar tissue?

  Deff contact your NS and ask what you may need to do testing wise....they tend to need a DX b4 they will see you....but since they did the original surgery they may be able to offer some insight as to what to look at.

Do you have copies of pre and post op MRI's?