Left Anterior Clinoid Meningioma Surgery

Posted by rosannen @rosannen, Thu, Mar 14 11:18pm

Hi my name is Rosanne, i’m 52 and I have recently been diagnosed with a 1cm left anterior clinoid meningioma that was found because of left peripheral vision loss. I’m looking to connect with others who have had the surgery to remove this tumor to find out their outcomes, recommendations, tips, etc.

Unfortunately, I’m not on the “watch and wait” list due to the loss in vision that I have. I just returned from Mayo in MN after seeing a Neuro Oncologist and Neurosurgeon and both suggest surgery sooner rather than later to preserve whatever vision they can in my left eye. I’m not a good candidate for radiation due to the proximity to my optic nerve.

Of course I have major concerns with having the surgery so if there is anyone out there willing to share their experience and recovery I’d love to hear from you.

Thanks!

Welcome to the group. I'm so sorry you are going through this. I had a meningeoma on my optic nerve and carotid artery. I had 85% of it removed on August 28th 2018. Mine was found also due to vision loss in my left eye. My surgery lasted ten hours. I was in the hospital four days after surgery and so far I don't have any complications.I have lost most of my vision in my left eye now but my neurosurgeon said that is expected and I will eventually lose all of the vision in that eye. My tumor is not growing as of my 6 month check-up, but he will monitor it every 6 months with MRI. If it starts growing he will do radiation. I will try to answer any questions you may have as well as others on here that have been through this. My prayers are with you. Take care
Mandy

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@mrector

Welcome to the group. I'm so sorry you are going through this. I had a meningeoma on my optic nerve and carotid artery. I had 85% of it removed on August 28th 2018. Mine was found also due to vision loss in my left eye. My surgery lasted ten hours. I was in the hospital four days after surgery and so far I don't have any complications.I have lost most of my vision in my left eye now but my neurosurgeon said that is expected and I will eventually lose all of the vision in that eye. My tumor is not growing as of my 6 month check-up, but he will monitor it every 6 months with MRI. If it starts growing he will do radiation. I will try to answer any questions you may have as well as others on here that have been through this. My prayers are with you. Take care
Mandy

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Thank you for responding. It’s definitely nice to see that you are doing well. I expected loss of vision at some point although the Dr. at Mayo seems to think I only have a 10% chance of losing vision completely and 50/50 chance that I will stay the same or slightly improve if I have the surgery.

Did you have your surgery at Mayo in Rochester? I’m in Oklahoma and while there are good surgeons here, the hospital is a concern for me so if I do choose to do this I will definitely do it at Mayo in MN.

I have been told that the surgery would probably be 6-8 hours, in hospital 3-5 days as long as there are no complications and recovery would be 3 months. With a follow up at Mayo 3 months after surgery for a MRI and visit with the surgeon. Then watching it after that.

I’m told that this type of tumor will not shorten my life span, however it may, and most likely will make me go blind, if I don’t have the surgery. You sound like you were in a similar position, did you ever think of not getting the surgery? And, at this point, do you have any regrets from having the surgery?

I know I really should do the surgery (and I most likely will) but it’s like the devil I know vs. the devil I don’t know, which is the scary part.

I wish you all the best in your recovery, you sound like you are handling this very well!

Liked by mrector

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@rosannen

Thank you for responding. It’s definitely nice to see that you are doing well. I expected loss of vision at some point although the Dr. at Mayo seems to think I only have a 10% chance of losing vision completely and 50/50 chance that I will stay the same or slightly improve if I have the surgery.

Did you have your surgery at Mayo in Rochester? I’m in Oklahoma and while there are good surgeons here, the hospital is a concern for me so if I do choose to do this I will definitely do it at Mayo in MN.

I have been told that the surgery would probably be 6-8 hours, in hospital 3-5 days as long as there are no complications and recovery would be 3 months. With a follow up at Mayo 3 months after surgery for a MRI and visit with the surgeon. Then watching it after that.

I’m told that this type of tumor will not shorten my life span, however it may, and most likely will make me go blind, if I don’t have the surgery. You sound like you were in a similar position, did you ever think of not getting the surgery? And, at this point, do you have any regrets from having the surgery?

I know I really should do the surgery (and I most likely will) but it’s like the devil I know vs. the devil I don’t know, which is the scary part.

I wish you all the best in your recovery, you sound like you are handling this very well!

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I had my surgery in Columbia, SC at Palmetto Health Richland. I didn't have a choice with surgery. My tumor was bigger and had to be removed, at least as much as could be gotten. I don't regret having the surgery at all. It's been life changing as far as my vision loss but as long as I know what to expect I can deal with it. I go every 6 months for MRI and checkups to make sure it's not growing. I was told I will have Gamma Knife radiation if it grows. I wish you all the best and I'm here if you need to talk.

Liked by rosannen

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Hi…what happened to your vision ?

Liked by mrector

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Hi… a family member had a meningioma treated at Mayo Rochester last August with the gamma knife. The procedure was a success, but she experienced significant post-procedure swelling about 4 months later and ended up having to go to the emergency room with a multitude of neurological symptoms. The steroids she had tapered off of were needed to be added back to control the swelling. She has had several more bouts of neuro symptoms each time the steroid was reduced. She is just coming back out of the hospital and rehab again on a new maintenance steroid plan. Her tumor was small enough to be a good gamma knife candidate. Not sure what the long-term plan will be. Hoping to find just the right dosing of steroids to control the swelling with out any significant side effects. She is a very young 81 years old.

Liked by mrector, rosannen

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@lisakuehl

Hi… a family member had a meningioma treated at Mayo Rochester last August with the gamma knife. The procedure was a success, but she experienced significant post-procedure swelling about 4 months later and ended up having to go to the emergency room with a multitude of neurological symptoms. The steroids she had tapered off of were needed to be added back to control the swelling. She has had several more bouts of neuro symptoms each time the steroid was reduced. She is just coming back out of the hospital and rehab again on a new maintenance steroid plan. Her tumor was small enough to be a good gamma knife candidate. Not sure what the long-term plan will be. Hoping to find just the right dosing of steroids to control the swelling with out any significant side effects. She is a very young 81 years old.

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I'm kinda scared of the Gamma Knife. I've read a lot of complications from it months after the treatment. I hope I never have to do it but I probably will eventually.

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@annrmarie

Hi…what happened to your vision ?

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I started losing peripheral vision in my left eye. Eye Dr thought it was glaucoma but I kept losing vision too quickly. Finally had an MRI of my brain and they found the tumor. The tumor is wrapped around my optic nerve so I will eventually be blind in that eye.

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@mrector

I started losing peripheral vision in my left eye. Eye Dr thought it was glaucoma but I kept losing vision too quickly. Finally had an MRI of my brain and they found the tumor. The tumor is wrapped around my optic nerve so I will eventually be blind in that eye.

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That’s very similar to what happened to me. I’ve been treated for glaucoma for many (probably 7) years and finally they said it was cataracts. Had the cataract surgery Sept. 2018 and still did not improve, they told me YAG laser would fix it. Had YAG in December 2018. Still bad vision in left eye. Right eye is fine.

My cataract surgeon sent me to a Glaucoma specialist in February 2019 and within 5 minutes he said I don’t and have never had Glaucoma and he sees slight pallor in my left optic nerve with APD. Sent me for a brain MRI and here I am. 7 years after being diagnosed with Glaucoma I find out I never had it, probably had cataract and yag surgery for no good reason too. I’m seriously irritated with the ophthalmologists ( I have seen many over the years) I have seen since I’ve been complaining about peripheral vision loss for years. No on ever mentioned doing an MRI. It probably wouldn’t have changed things, I would have been on a ‘watch and wait list’ at that point but it still seems that if a patient complains of peripheral vision loss and they have visual fields that prove it then an MRI should be an automatic recommendation.

I do not know if the tumor is wrapped or pushing around the optic nerve, I also know it’s close to the carotid although they don’t think it’s on it. The MRI I had was grainy and the cuts were too thick…lesson learned…there are different qualities of MRI and you get what you pay for. Mayo recommended a better MRI but after talking to the Neurosurgeon he recommenced I do that prior to surgery or in a few months to see if the tumor is growing.

I will definitely go back to Mayo for the MRI, and i’m leaning towards the surgery (probably around June when weather in MN is a lot nicer than now). Going to take a couple of weeks to process this whole thing and make my final decision. It’s definitely overwhelming to say the least.

Liked by mrector

REPLY
@lisakuehl

Hi… a family member had a meningioma treated at Mayo Rochester last August with the gamma knife. The procedure was a success, but she experienced significant post-procedure swelling about 4 months later and ended up having to go to the emergency room with a multitude of neurological symptoms. The steroids she had tapered off of were needed to be added back to control the swelling. She has had several more bouts of neuro symptoms each time the steroid was reduced. She is just coming back out of the hospital and rehab again on a new maintenance steroid plan. Her tumor was small enough to be a good gamma knife candidate. Not sure what the long-term plan will be. Hoping to find just the right dosing of steroids to control the swelling with out any significant side effects. She is a very young 81 years old.

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Hello, I’m sorry to hear about your family member. I hope she starts doing better soon. I know this whole thing can be wearing and any of the solutions — radiation and/or surgery — have a long road of recovery. Wishing her all the best and a speedy recovery!

Liked by mrector

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@rosannen

That’s very similar to what happened to me. I’ve been treated for glaucoma for many (probably 7) years and finally they said it was cataracts. Had the cataract surgery Sept. 2018 and still did not improve, they told me YAG laser would fix it. Had YAG in December 2018. Still bad vision in left eye. Right eye is fine.

My cataract surgeon sent me to a Glaucoma specialist in February 2019 and within 5 minutes he said I don’t and have never had Glaucoma and he sees slight pallor in my left optic nerve with APD. Sent me for a brain MRI and here I am. 7 years after being diagnosed with Glaucoma I find out I never had it, probably had cataract and yag surgery for no good reason too. I’m seriously irritated with the ophthalmologists ( I have seen many over the years) I have seen since I’ve been complaining about peripheral vision loss for years. No on ever mentioned doing an MRI. It probably wouldn’t have changed things, I would have been on a ‘watch and wait list’ at that point but it still seems that if a patient complains of peripheral vision loss and they have visual fields that prove it then an MRI should be an automatic recommendation.

I do not know if the tumor is wrapped or pushing around the optic nerve, I also know it’s close to the carotid although they don’t think it’s on it. The MRI I had was grainy and the cuts were too thick…lesson learned…there are different qualities of MRI and you get what you pay for. Mayo recommended a better MRI but after talking to the Neurosurgeon he recommenced I do that prior to surgery or in a few months to see if the tumor is growing.

I will definitely go back to Mayo for the MRI, and i’m leaning towards the surgery (probably around June when weather in MN is a lot nicer than now). Going to take a couple of weeks to process this whole thing and make my final decision. It’s definitely overwhelming to say the least.

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I had to persist with eye Dr's. I finally saw a retnia specialist and he sent me for the MRI. My tumor is also wrapped around my carotid artery. I wish you all the best

Liked by rosannen

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