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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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julieannarcand | @julieannarcand | Oct 5, 2019
In reply to @pejiota4jack "I have a cavernous sinus menegioma and was wondering how it has been handled. So far..." + (show)
@pejiota4jack

I have a cavernous sinus menegioma and was wondering how it has been handled. So far I have had a recomendation for microsurgery (eyebrow) and resecting as much as possible.

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Have you had this surgery yet and if so, did it help?

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julieannarcand | @julieannarcand | Oct 5, 2019
In reply to @jrt26 "@julieannarcand Sorry to hear you have this cavernous sinus meningioma. Mine did not wrap around the..." + (show)
@jrt26

@julieannarcand Sorry to hear you have this cavernous sinus meningioma. Mine did not wrap around the carotid artery. It was discovered after my eyes crossed and had double vision as well as
Shooting pains in my right eye and face. I went to UCSF and the neurosurgeon recommended gamma knife which helped for the next 5 years. My vision returned to normal after 5-6 months and no facial pains or shooting pin like pains in my eye. Let me know if you have any specific questions. Since I did experience new growth after 5 years.

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I have heard that there is a strong possibility of there returning either in the same location or a different one. My tumor didn't shrink with radiation and the next specialist said that 60% of them do not. I'm only 5 months post radiation but my eye sight has gotten worse and so have my headaches. The people I saw where I had my radiation done were all very nice but it seemed like any questions I had the answer was always " it will take 6 months to a year " for the fatigue or any other symptoms I was experiencing. So I just stopped asking

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KarenBB | @pejiota4jack | Oct 5, 2019

A surgeon in Denver was willing to do the surgery but my family didn’t like the odd of survival versus chances of improvement. I think it was the best choice. Reoccurrence happens with surgery too. Right now I’m cherishing the good days.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 6, 2019
In reply to @julieannarcand "I want to have my records sent to Mayo or go there. There was one suggestion..." + (show)
@julieannarcand

I want to have my records sent to Mayo or go there. There was one suggestion from a successful surgical woman in Pennsylvania who had the same tumor in the same spot. I think you nailed it ok the head when you said that there is a huge frustration that it will only be managed and never truly taken care of. I was told that with meningiomas that they can grow back, they they can reappear or another can appear at anytime. Also that typically in our area they are very hard and dense and 60% of the tumors don't shrink. Is there anything else you were told??? I am to get am MRI every year unless my vision gets worse or my headaches worsen ( they can't possibly) or my gait is off more than I am unable to stand on my right foot and I cannot walk toe to toe. Also I have the vagal nerve reaction and if that worsens.

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Hi @julieannarcand, you mention that you may wish to seek care at Mayo Clinic. Naturally, I support the idea of seeking a second opinion at Mayo Clinic. Experts at the Mayo Clinic can help navigate your healthcare journey, answer your questions and guide you through the treatment plan. When you call at any of our 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-hour Access program.

It starts with a phone call and then you can decide whether to seek the second opinion or not.

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KarenBB | @pejiota4jack | Oct 7, 2019
In reply to @julieannarcand "I want to have my records sent to Mayo or go there. There was one suggestion..." + (show)
@julieannarcand

I want to have my records sent to Mayo or go there. There was one suggestion from a successful surgical woman in Pennsylvania who had the same tumor in the same spot. I think you nailed it ok the head when you said that there is a huge frustration that it will only be managed and never truly taken care of. I was told that with meningiomas that they can grow back, they they can reappear or another can appear at anytime. Also that typically in our area they are very hard and dense and 60% of the tumors don't shrink. Is there anything else you were told??? I am to get am MRI every year unless my vision gets worse or my headaches worsen ( they can't possibly) or my gait is off more than I am unable to stand on my right foot and I cannot walk toe to toe. Also I have the vagal nerve reaction and if that worsens.

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I didn’t realize I could no longer walk toe to toe till I tried to in the Dr. office. I was shocked but the Dr report said normal for my age! I’m 56 and I guarantee I did it less then a year ago with my daughter. I am having a hard time working part time and homeschooling with this headache.

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KarenBB | @pejiota4jack | Oct 21, 2019
In reply to @julieannarcand "Have you had this surgery yet and if so, did it help?" + (show)
@julieannarcand

Have you had this surgery yet and if so, did it help?

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I had the gamma knife procedure. It must have stopped the growth, my vision is returning to normal . At least the ground is no longer moving when I walk!! Victory!

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KarenBB | @pejiota4jack | Nov 18, 2019
In reply to @julieannarcand "I have heard that there is a strong possibility of there returning either in the same..." + (show)
@julieannarcand

I have heard that there is a strong possibility of there returning either in the same location or a different one. My tumor didn't shrink with radiation and the next specialist said that 60% of them do not. I'm only 5 months post radiation but my eye sight has gotten worse and so have my headaches. The people I saw where I had my radiation done were all very nice but it seemed like any questions I had the answer was always " it will take 6 months to a year " for the fatigue or any other symptoms I was experiencing. So I just stopped asking

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My double vision is quite a bit better. Still very "bone tired" and headaches are only better because of the gabapentin (sp?) When I've done too much the vision in my good eye lets me know I am over tired. 2 and 1/2 months after Gamma knife and still praying for healing but a little ...fustrated,,,discouraged. Trying to embrace the new limits.

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1 reply
Lisa Lucier | @lisalucier | Nov 18, 2019
In reply to @pejiota4jack "My double vision is quite a bit better. Still very "bone tired" and headaches are only..." + (show)
@pejiota4jack

My double vision is quite a bit better. Still very "bone tired" and headaches are only better because of the gabapentin (sp?) When I've done too much the vision in my good eye lets me know I am over tired. 2 and 1/2 months after Gamma knife and still praying for healing but a little ...fustrated,,,discouraged. Trying to embrace the new limits.

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@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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1 reply
marcyprof | @marcyprof | Nov 28, 2019
In reply to @pejiota4jack "I went to Mayo in Rochester and had Gamma knife surgery. They did not consider it..." + (show)
@pejiota4jack

I went to Mayo in Rochester and had Gamma knife surgery. They did not consider it operable. I was actually pretty upset when they said inoperable. Realized it will never be truly “fixed”, just managed. Very thankful to have a chance for no further damage! I have even regained a little more control of my right eye and have less double vision.

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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.

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shellegrego | @shellegrego | Jan 24, 2020

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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