Cavernous sinus meningioma

Posted by julieannarcand @julieannarcand, Tue, Mar 12 9:05pm

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

Gosh…I wish 8 had advise for you but I dont know about this tumour…do they say if it is cancerous or not ? I have similar symptoms but these were caused by the surgery that was needed to remove a tumour in the 4 th ventricle… all I know is that it's been a hellish life changing year but slowly slowly getting better…I'm in New Zealand and presume ypu are in the states…I thought the best treatment was there… goodluck and post how its going

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@annrmarie

Gosh…I wish 8 had advise for you but I dont know about this tumour…do they say if it is cancerous or not ? I have similar symptoms but these were caused by the surgery that was needed to remove a tumour in the 4 th ventricle… all I know is that it's been a hellish life changing year but slowly slowly getting better…I'm in New Zealand and presume ypu are in the states…I thought the best treatment was there… goodluck and post how its going

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Thank you for your reply. I hope that you at least felt like you got good and compassionate care. That is what seems lacking in the Seattle area where I initially was diagnosed. I go for the second opinion today to a cancer center in a much smaller town (though the mother hospital is based out of Seattle). Just that they were so compassionate and kind has already made me feel better. Are you saying surgery, initially made things worse? And are gradually getting better? Did you also have to have radiation? Best wishes

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@julieannarcand

Thank you for your reply. I hope that you at least felt like you got good and compassionate care. That is what seems lacking in the Seattle area where I initially was diagnosed. I go for the second opinion today to a cancer center in a much smaller town (though the mother hospital is based out of Seattle). Just that they were so compassionate and kind has already made me feel better. Are you saying surgery, initially made things worse? And are gradually getting better? Did you also have to have radiation? Best wishes

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Hi @julieannarcand and welcome to Connect. I'd like to bring @jrt26, who has also been treated for a meningioma in the right cavernous sinus, into this discussion. You may also be interested in this discussion with members who have a meningioma involving the optic nerve:
– Optic Nerve Meningioma patients https://connect.mayoclinic.org/discussion/optic-nerve-meningioma-patients/

There are also a couple of discussions about gamma knife radiation:
– Gamma Knife Radio Surgery for Meningioma https://connect.mayoclinic.org/discussion/gamma-knife-radio-surgery-for-meningioma/
– Gamma knife for meningiomas https://connect.mayoclinic.org/discussion/gamma-knife-for-meningiomas/

How was your appointment for a second opinion, Julie?

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@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 also been diagnosed with a tumor in the dura of the cavernous sinus. It has given me double vision headaches and a numb face. I have spent a lot of time looking for treatment options but I have high hopes for an appointment at Mayo next week.

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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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@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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Where are you located? I am in the Seattle area and they keep saying inoperable until death is more worrisome than the mortality rate of the surgery??? Even though I keep reading about so many people having successful surgery

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@julieannarcand

Where are you located? I am in the Seattle area and they keep saying inoperable until death is more worrisome than the mortality rate of the surgery??? Even though I keep reading about so many people having successful surgery

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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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I live in Montana. Rochester was an 11 hour drive.

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@pejiota4jack

I live in Montana. Rochester was an 11 hour drive.

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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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@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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@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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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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@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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@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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