Brain Stent? Pseudotumor cerebri

Posted by alicein_wonderland @alicein_wonderland, Mar 23, 2016

Brain Stent?
I am a 32 y/o woman with a history of pseudotumor cerebri, acquired chiari malformation & syrinx. Ive undergone 8 surgeries for repairs and revisions of my shunts. My doctors dont know why I need 2 shunts or why I still have headaches & fatigue/lightheadedness. I suspect overdrainage. I feel strongly that my VP & LP shunt are failing to properly control the CSF. In recent years Ive read alot about stenting the transverse sinus instead of shunting. But my doctors wont do an angiogram to determine if I am a candidate. They say its too dangerous & causes strokes. Im wondering if there's truth to that claim and has anyone here had a brain stent that was successful for PTC? Im running out of options here and living in pain & exhaustion every day.

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Colleen Young, Connect Director | @colleenyoung | Mar 23, 2016

Hi @alicein_wonderland
I'm tagging @cynaburst @rosesareredmylove2016 and @audrapopp to join this discussion. Having had brain shunts the may be able to share some thoughts.

You may also want to connect with @joyschance @ashleykay @yusofa on this thread about pseudotumor cerebri https://connect.mayoclinic.org/discussion/pseudotumor-cerebrivision-loss/

Have you considered getting a second opinion?

Cynaburst, Alumna Mentor | @cynaburst | Mar 23, 2016

Wow. Sorry for your troubles. I have had the same VP shunt for 14 years now due to a brain tumor which is now gone, and have been lucky that I have not had any issues. Where is your neurosurgeon? Maybe you could visit a specialist? Mayo Clinic has good ones.

amcteague | @amcteague | Mar 24, 2016

I am so sorry for your pain. I have a VP shunt for a different reason and had my first revision/valve replacement in December. There isn't a day that I have relief. My head pain gets so bad, the vision in my right eye is affected, and I am miserable. We have played with my shunt settings and nothing seems to work. I had. CT done in December that showed collapsed ventricles in my brain. I wish for the day that my head feels normal!