Cavernous sinus meningioma

Posted by julieannarcand @julieannarcand, Mar 12, 2019

Hello, I have recently been diagnosed with a right cavernous sinus meningioma that has wrapped around the carotid artery and is pressing on the optic nerve and 2 other cranial nerves. Even though I live in a large city, I feel very limited by the physicians whom I have seen so far. They first said, I will see you after surgery. Then inoperable due to the area and surrounding structures and I am finally getting a second opinion where I have found out that radiation to or around the optic nerve is very dangerous. Has anyone had surgery in this area successfully or did you forgo surgery for radiation and how did that effect your vision and optic nerve ( I have double vision and severe headaches , as well as, a few other symptoms like ringing in the ears, face pain etc. I would appreciate any comments and experiences, thank you

@tumgo

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.

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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.

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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.

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@shellegrego

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.

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@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?

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@shellegrego

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.

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Thank you for your response. It helps a lot

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thoughts anyone? A mass in my right cavernous sinus was found, nuero says it is inoperable, he is currently comparing an older MRI to see if mass was missed previously, he said next step if it wasn't there or has grown and was missed will be oncology for radiation, chemo or gamma knife. I did feel he was a bit dismissive of my symptoms, blurred vision, double vision, pain in right side of my face and ear behind eye and facial numbness that goes down cheek into lip/teeth, dizziness, fatigue, headache daily…… the list can go on and on. I need some guidance or advice.

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Get a second opinion. Preferably from a nationally known medical facility. I go to mayo in Minnesota.

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@loolookirl

thoughts anyone? A mass in my right cavernous sinus was found, nuero says it is inoperable, he is currently comparing an older MRI to see if mass was missed previously, he said next step if it wasn't there or has grown and was missed will be oncology for radiation, chemo or gamma knife. I did feel he was a bit dismissive of my symptoms, blurred vision, double vision, pain in right side of my face and ear behind eye and facial numbness that goes down cheek into lip/teeth, dizziness, fatigue, headache daily…… the list can go on and on. I need some guidance or advice.

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Hi @loolookirl You should be referred to a neurosurgeon. The Neurologist did the same to me by dismissing me and saying it was very small. I was in so much pain. My eyes crossed which caused double vision and my face was numb plus all the other symptoms you are having. I found out the meningioma was small however it was pressing on the cranial nerves. The unbearable shooting pain was due to trigeminal neuralgia and the Neuro surgeon placed me on Tegratol 300-500 mg 4-6x per
Day until they could schedule the gamma knife. The pain went away within a few days, double vision for better after 4-5 months. The numbness may also take a few weeks to improve. Also ask the nuerosurgeon if possible Tolassa Hunt Syndrome (inflammation in the cavernous sinus) and see if antibiotics and steroids will alleviate the pain and numbness. Hope this helps.

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Hello, Juliana. Two years ago, I was diagnosed with a very condition very similar to yours. I had a large meningioma wrapped around my carotid artery and right optical nerve. Fortunate for me, though, I had no symptoms. I was referred to Oregon Health Sciences &University in Portland (not too far from you in Seattle) for surgery, by Dr. Dogan. Dr. Cetas is well known there, too. It was a 13-hr surgery that removed most of the tumor. I have had little in the way of side affects and no vision problems. Because there is still a remnant of the tumor remaining, I have had followup MRI’s, initially on a 6-mo. frequency, now on a 12-mo. frequency. You might check out the OHSU neurosurgery group and arrange for a consult. They will be straight with you on whether it is operable or not operable. Best wishes and good luck to you!

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