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alpineir
@alpineir

Posts: 11
Joined: Feb 20, 2018

Optic Nerve Meningioma patients

Posted by @alpineir, Feb 20, 2018

I would like to connect with anyone who has an optic nerve meningioma and underwent surgery to resect this type of benign tumor.

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Has anyone had proton therapy ?

I had a meningioma surgically removed about 6 years. I had options of surgery, doing nothing and monitor, and gamma knife. The surgeon was concerned with gamma knife as he said if they were off just a little I could lose the vision in that eye. I was not a fan of radiation anyway. I am sot a good person for wait and see either. I chose to have surgery to remove the tumor. I was 48 and was told by the surgeon that my age would definitely help with the removal of the tumor as the younger you are the easier the tumor will peel off the optic nerve. I went ahead with surgery the next Monday at Mayo Clinic Rochester and retained my vision and have needed no further interventions. I have some residual nerve issues on that side of my face because of the surgery but nothing I can not handle

Hello
I had surgery to remove a benign memingioma near my optic nerve in 1995

Liked by mrector

Welcome to Connect @jeank1234 and @annethomas. It is so helpful to hear stories of others who have been there. I know @kmart and @mrector will appreciate meeting you.

What did you wish you had known before surgery?

Liked by mrector

I've lost most vision in my left eye now. I am going this coming Tuesday for my 6 month brain MRI. My appointment with my neurosurgeon isn't until March 4th. I am ready to get my results and see my neurosurgeon to make sure everything is okay.

@colleenyoung

Welcome to Connect @jeank1234 and @annethomas. It is so helpful to hear stories of others who have been there. I know @kmart and @mrector will appreciate meeting you.

What did you wish you had known before surgery?

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I had my surgery on 12/14/18 at The Mayo Clinic, Jacksonville. I had made a list of questions for my NS before surgery and he answered all. I was informed that I may lose (temporarily) my sense of balance and memory. I wasn't informed about losing my sense of smell, which I did. I would have liked more information re the actual process of the surgery, i.e. the removal of the skull and how it is replaced. Will I have screws? How will the first few days be like? I was very happy with my NS's (three were in surgery with me) and the hospital stay. The nurses were amazing. I had a lot of nausea even with meds for nausea. The first couple of weeks I walked and rested when tired. You tire easily. My headaches are hit and miss. After my 6-week post op appointment, I was given the okay to start back to the Y to work out.
My tumor was on my optic chiasm. They had to leave a small portion of the tumor. The NS informed me that they remove the tumor piece by piece as not to damage the optic nerves or artery.

I had a CT scan on 2/15/19 . I was concerned about a "bump" that is hard and above my at the corner of my L eyebrow. NS ordered the scan and this is the result. New acute and subacute bilateral holohemispheric subdural hemorrhages. Has anyone had this? Results? Treatment? Have not heard from my NS. Balance and headaches are an issue. Had removal of M on my optic chiasm on 12/14/18.

Liked by mrector

@kmart

I had a CT scan on 2/15/19 . I was concerned about a "bump" that is hard and above my at the corner of my L eyebrow. NS ordered the scan and this is the result. New acute and subacute bilateral holohemispheric subdural hemorrhages. Has anyone had this? Results? Treatment? Have not heard from my NS. Balance and headaches are an issue. Had removal of M on my optic chiasm on 12/14/18.

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Kay, oh that is quite the mouthful "acute and subacute bilateral holohemispheric subdural hemorrhages" and must have been worrisome to hear. Here is some information on subdural hematoma https://www.mayoclinic.org/diseases-conditions/intracranial-hematoma/symptoms-causes/syc-20356145

Please let us know what your hear from your clinical nurse specialist.

Liked by mrector

@colleenyoung

Kay, oh that is quite the mouthful "acute and subacute bilateral holohemispheric subdural hemorrhages" and must have been worrisome to hear. Here is some information on subdural hematoma https://www.mayoclinic.org/diseases-conditions/intracranial-hematoma/symptoms-causes/syc-20356145

Please let us know what your hear from your clinical nurse specialist.

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The NS tried a blood patch but ended up having emergency surgery Friday night for Hematomas . I am writing this from my hospital room at Mayo.

@kmart

The NS tried a blood patch but ended up having emergency surgery Friday night for Hematomas . I am writing this from my hospital room at Mayo.

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Wow, @kmart! How are you doing?

@kanaazpereira

Wow, @kmart! How are you doing?

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Tired and continue to have headaches. Too many holes in my head!

Keep us updated with your progress, as and when you can. I look forward to reading more of your posts, @kmart, and wish you all success.

@kanaazpereira

Keep us updated with your progress, as and when you can. I look forward to reading more of your posts, @kmart, and wish you all success.

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I'm so sorry you are going through this @kmart. Please keep us posted on how you are doing. Praying for you!

I came home yesterday with railroad tracks on my head. My NS did a "burr hole" on my L side behind my original craniotomy that is 3 " and on the R side did a craniotomy with a 4.5 " track. Thanks for your prayers, how are you doint?

Liked by mrector

@kmart

I came home yesterday with railroad tracks on my head. My NS did a "burr hole" on my L side behind my original craniotomy that is 3 " and on the R side did a craniotomy with a 4.5 " track. Thanks for your prayers, how are you doint?

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I'm so glad you are home. Praying for you. I am doing well, I have my checkup with my neurosurgeon next Monday. I pray everything is okay. I'll keep you posted

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