Cavernous sinus meningioma

Thank you for your response. It helps a lot

@shellegrego, you may also be interested in following this discussion in the Stroke & Cerebrovascular group:
- Internal carotid artery aneurysm https://connect.mayoclinic.org/discussion/internal-carotid-artery-aneurysm/

What side effects are you dealing with?

I have the same brain tumor and did receive gamma knife radiation. The tumor also cause a internal carotid artery aneurysm from the pressure of tumor. The radiation may of slowed growth but did not shrink it. I’m not sure if side effects are worse due to radiation or the tumor and aneurysm.

Hope it continues to shrink. You may have Trigeminal Neuralgia which is one of the Largest cranial nerves in the cavernous sinus area. I had Gamma Knife twice. My NS at UCSF did not recommend surgery. I’m feeling better but have developed inflammation In the dura that could be Tolasa Hunt Syndrome. They are currently diagnosing it as Idiopathic Pachymeningitis. Prednisone taper down worked but came back as soon as I stopped the prednisone so I was given Rituximab infusions every 12-18 months. I just had my third set of Rituximab infusions this month and feeling better now.

Hi, I hope you are feeling much better. I noticed you posted this last year. I was just curious what came up about my tumor situation and I happened to see your post. When I read your post I realized I experienced the exact same symptoms with the same tumor type. I was referred to a great Neurosurgeon by a friend. He performed my surgery and Everything came out great. He did it open base skull but he couldn't take out everything without doing damage so he left 20% of it. 3 months after surgery it started growing back, I then did radiation. I have no double vision, but the headaches are unbearable at times. The last scan showed it's shrinking and I hope it continues to. There's no way I can undergo another open skull surgery.

How are you doing? Managing the pain?

I would say I am a little frustrated with my progress. I would love to be where I was three years ago but that may not happen. It’s always hard to accept limitations on your abilities. I am taking 6 months off of work and we’ll see where I am at that point. Short term memory has been a challenge.

Thanks for sharing.

I have the exact same tumor. It is inoperable because it’s in the ICA and 5 cranial nerves including optic and trigemnial. Very painful but I keep trying new regimens of medication to assist. I did have Gamma Knife Radiation, with no success to shrink it just hopefully contained it. I had it done at Geisinger in PA.

Hello Karen @pejiota4jack, I just read your different posts. I had a cavernoma in May 2017, as it was liquid blood, it was removed by biopsy (without surgery). However, a year later, a brain tumor (nonoperable) appeared in the same place. My tumor, central, is located at the 3rd ventricle, behind the eyes. I am treated in chemotherapy, which controls growth for the moment. Like you, the tumor is still there. My neuro-oncologist might also want to treat me with gamma knife. We are still lucky to benefit from this advanced technology. Do you have any information to share on gamma knife? Also, I thought we were doing gamma knife only once. Did you have several treatments? Have you had any negative side effects? How's it going? Thank you for your help.