Chiari Online Support Group

Not again

So I had surgery in 2005 and had a patch put in and my C1 & C2 shaved down. I am 15 yrs as of the 27th since surgery. I am now having headaches again dizziness black spot and left eye going blurry. I have had 2 LP past yr to drain additional fluid around my brain. My neuro told me to drink more water and do yoga would not order a MRI. So it is crazy to me. I cant get into a NS very easily due to the fact I’ve already had surgery. Thanks in advance

Ugh. I hear ya sister…we have the surgery, so now we are “cured”…never to suffer from Chiari issues again. SO frustrating. I can’t get ANY help. Now I am diagnosed with anxiety and depression because of my symptoms of brain fog, insomnia, numbness, headaches, chest pressure, falling, dizziness, etc. (Sounds pretty much like pre-surgery me to me!!) Noone will bother to see if I have reherniated, etc. SO defeating. (Or take me seriously about possible EDS)

i’m with you also. have you tried asking you primary care to send you for MRI? If you can get one and it shows issues, you may have a better chance to get into another specialist. suggest trying to get into a neurologist not a neuro-surgeon first off. the neurologist should be able to refer to surgeon if that is needed. There are surgeon that specialize is secondary surgery, you have to hunt for them and may need to go out of state for the help. I had luck sending my scans to Mayo, Jacksonville Florida and they were willing to see me. just know they were 3-4 months out for appointments. you may want your primary to send off medical records and request Mayo to review them. There is a specialty place in long neck, new York also that will see chiari patience’s who need second surgery also. hang in there and know your not alone.

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I had a neurologist and she kept putting me on pills and she refused to do a MRI on me. I now have clear liquid coming out of my nose she told me it was normal. I informed my PCP she has not gotten back to me yet. If it gets worse today im going to the ER because I am so tired of feeling this way.