Chiari Online Support Group

Crisis Help Line

Are you in crisis, or maybe even feeling suicidal? Do need someone to listen and to support you right now? Take a deep breath, and find the helpline in your country:

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2 Likes

hi i’m new here and feel like i’m at the end of my rope. i’m seeing the first surgeon i ever saw reguarding my chiari. i dont feel like i trust him. also communicating with a surgeon 200 miles from me who believes that my cerebellum and tonsils have herniated worse than before decompression with yet another SURGEON. I DONT KNOW WHO TO TRUST AND I’M READY TO GIVE UP. I am supposed to have a LUMBAR PUNCTURE ON THE 13TH OF JUNE 2019. I TRIED TO FIND UPDATED POSTS ABOUT LP AND CHIARI. I STILL HAVE NOT HAD SYRINX RULED OUT. THIS SEEMS DANGEROUS.

Hey Decompressme,
This is something the really needs to be discussed with a neurologist or neurosurgeon. The risks of any procedure should be fully explained to you prior, at which time you should be able to voice any such concerns you may have and have your questions answered by a qualified medical practitioner. I do know that some dr’s do not like to be questioned about such procedures, but you have every right to ask about anything that is of concern to you.

Have you had any recent scans, CT or MRI, completed?? The scan reports should state anything of concern and your pcp should be able to interpret and translate any such reports without the need for a neuro. A more refined explanation may require consultation with a neuro but your pcp should be able to answer some of your concerns at the very least.

Merl from the Moderator Support Team

Decompress me, how are you feeling now?

Have you met @gabby_jazzypants yet? She’s one of our most sensible and straight-talking members. She may have some supportive and wise words for you as well.

Thinking of you

Seenie from ModSupport