Posterior Fossa Arachnoid Cysts

Posted by josh1barr @josh1barr, Jul 17, 2021

I had a craniotomy in May 2020 to fenestrate a cyst. Symptom free for a few weeks only to discover excess CSF causing increased pressure. Several lumbar punctures later it was determined my protein levels were too high for a shunt insertion. Symptoms again went away only return around December 2020. Surgeon again wanted to insert shunt. I saw neurologist for non-surgical approach. Feel like he is throwing darts to figure this out. Symptoms have returned rapidly over last week. Am considering Mayo or John’s Hopkins. Any advice would be appreciated as this has become extremely debilitating.

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

Lori, Volunteer Mentor | @loribmt | Jul 19, 2021

Hi @josh1barr Welcome to Mayo Clinic Connect. I’m so sorry to see you’re having ongoing symptoms after the craniotomy. How frustrating and stressful! I can certainly understand your wanting to get this taken care of as soon as possible and seeking a second opinion is an excellent idea. I may be a bit biased but I’d highly recommend Mayo Clinic after all of my experiences with them. Their collaborative teams work together to find the best treatment plan for each individual.

I’ve posted a link for a referral to Mayo Clinic. It provides you with numbers to call to get the appointment process started. You can choose which campus you’d prefer. http://mayocl.in/1mtmR63

It isn’t necessary but sometimes having a referral from your doctor/neurologist along with sending records can help the process along. But making initial contact is the best way to begin.

This is a link for a physician referral…

https://www.mayoclinic.org/medical-professionals/provider-relations/refer-patient