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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

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marcyprof | @marcyprof | Jan 25, 2020
In reply to @shellegrego "I have the exact same tumor. It is inoperable because it’s in the ICA and 5..." + (show)
@shellegrego

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.

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Thanks for sharing.

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1 reply
KarenBB | @pejiota4jack | Jan 25, 2020
In reply to @lisalucier "@pejiota4jack - it sounds as though some good things are happening with your vision if the..." + (show)
@lisalucier

@pejiota4jack - it sounds as though some good things are happening with your vision if the ground no longer appears to move when you walk. Interesting that you get a cue from your vision when you're over tired now.

Would you say that you are feeling frustrated and discouraged as your recovery is taking a different amount of time than you'd thought, or because of the new limits, or something else?

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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.

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KarenBB | @pejiota4jack | Jan 25, 2020
In reply to @marcyprof "Thanks for sharing." + (show)
@marcyprof

Thanks for sharing.

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How are you doing? Managing the pain?

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tumgo | @tumgo | Jul 23, 2020

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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1 reply
jrt26 | @jrt26 | Jul 23, 2020
In reply to @tumgo "Hi, I hope you are feeling much better. I noticed you posted this last year. I..." + (show)
@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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shellegrego | @shellegrego | Aug 16, 2020

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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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 16, 2020
In reply to @shellegrego "I have the same brain tumor and did receive gamma knife radiation. The tumor also cause..." + (show)
@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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nanatessie | @nanatessie | Aug 17, 2020
In reply to @shellegrego "I have the same brain tumor and did receive gamma knife radiation. The tumor also cause..." + (show)
@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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loolookirl | @loolookirl | Aug 28, 2020

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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1 reply
Iowakate | @katehedderich | Aug 28, 2020

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

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