Chiari Online Support Group

What I thought would be a good day.... wasn't

Today was my Neurosurgeon appointment that i've been looking forward to, I was hopeful that This Doctor could help me. He walked in shook the hands of me and my father.He began explaining what Chiari was which when he started I knew it was a mistake to see him because he told me what my PCP told me.The information that most doctors tell chiari patients, Told me I have chiari malformation, but it was so small that it would not cause my symptoms, and since my symptoms were so complex he didn't know what was wrong but it wasn't caused by the chiari. I said I had a full spine MRI coming up also and he said I shouldn't hold my breath he was pretty sure the chances of them finding anything was highly unlikely. He compared me to a normal person, saying the difference is not really anything. Then began reading off symptoms of chiari off a sheet which were all on the forms i filled out so they were there. On top of him being so dismissive he couldn't look at me while he talked, and he was very fidgety with his hands. He even answered his phone in the middle of the appointment. ( yes i know he is a doctor but he could have said excuse me for a moment instead of answering it in the room) He said Nothing surgical would help and he didn't even see a reason to do repeat mri's. I was so upset when i left his office wondering if I was crazy or if I just have to deal with whats going on with no real treatment. All in all he spent no more then ten minutes with me. My dad believes its because of my insurance since i have Medicaid, My mom thinks its because he just really don't know, and I'm at the point I'm feeling like my case is hopeless and I'm going to get relief from it. It took me 3 months to get this appointment and fighting to get my pcp to keep my meds going. I'm not sure where to go from here, If anyone has any suggestions on Doctors in Indiana please let me know, Any area is fine, alli was is a doctor who is respectful and looks at the symptoms along with the symptoms.

Sorry for the rant it's be a really bad day to say the least.

So sorry you had to go through that… So many doctors dis miss us… And it’s plain wrong !!You don’t give up…OK… God bless You

Normajean

Oh Adelyna, I am so sorry, you had such high hopes for this appointment. Has this doctor discharged you or has he kept the door open for you to go back? I am wondering if you or your pcp could follow up with the questions "Where do I go from here? If you don't think it's the Chairi causing my symptoms what direction do you recommend that further investigations take? Will you refer me?" Please arrange an appointment to see your pcp for help and support. Thinking of you.

That was asked at the appointment Jules G, he didn't think anything else needed to be done at least on his end and said he does not know what was causing it but there is no way its Chiari is to small. He was also asked what else could cause this and he said i don't know your symptoms are complex. He told me my chiari is too small to cause any issues because its not pushing against anything. He completely dismissed me so i'm looking for another one who might listen to me

Something similar happened to me when I saw the surgeon the other day. I’ve had symptoms for a long time now but because my syrinx is so small that they don’t even know if they can call it that they don’t even believe my symptoms are related to Chiari. My neurologists seem to believe me more than that surgeon did. I requested a second opinion and will set that up soon. I have almost all of the symptoms of Chiari…I’m not crazy and neither are you! It seems we had almost the same experience recently. I’m so sorry this happened to you.

I bawled my eyes out and felt so hopeless and devastated. I can only imagine you felt the same.

Need to continue took for a doctor who understands this and it has to be neurosurgeon wishing you the best.