Diagnosed with Meningioma

Posted by IrishMomz @irishmomz, Wed, Aug 7 10:16pm

Saw a neurosurgeon went over my options. My surgery date is tentatively the end of this month. Nervous.. looking for advice from someone who has been through it. Tumor is located behind my left eye and is attached to my optic nerve.

I am sorry to hear about your recent diagnosis. My tumor was on my optic chiasm causing sight loss in both eyes but mostly in my L eye. I was told that if I didn’t have it removed I would lose my vision. I had surgery at Jacksonville Mayo in December and my vision has improved. I was in the hospital for 3 days. Please write down all your questions to ask your surgeon. On this site there have been suggestions from many patients as to what questions to ask. Wishing you good juju as you begin your journey. I will be happy to answer any questions you may have and hopefully I have an answer.

Liked by mrector

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I am so sorry you are going through this. I was diagnosed last year and had part of my tumor removed August 28, 2018. My tumor was wrapped around my left eye optic nerve and carotid artery. I have lost most of my vision in my left eye. I started losing vision in that eye before I was diagnosed. That's the only reason they suggested an MRI of my brain because of rapid vision loss. My surgery went well. I was in the hospital for 4 days. First 2 days in ICU, which is normal. If you have specific questions please feel free to ask. There are several of us on here that have been through this and will try to help. I am praying for you as you go through this journey.
Mandy Rector

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@kmart

I am sorry to hear about your recent diagnosis. My tumor was on my optic chiasm causing sight loss in both eyes but mostly in my L eye. I was told that if I didn’t have it removed I would lose my vision. I had surgery at Jacksonville Mayo in December and my vision has improved. I was in the hospital for 3 days. Please write down all your questions to ask your surgeon. On this site there have been suggestions from many patients as to what questions to ask. Wishing you good juju as you begin your journey. I will be happy to answer any questions you may have and hopefully I have an answer.

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Hi Kay, I'm so glad you are doing well. I think of you often and how you are doing.

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My step mom, age 81, who lives in central Kentucky, just had a frontal lobe meningioma removed at the University of Kentucky, although she is a Mayo RST patient and initially underwent gamma knife radiation there to supress its growth. That part was a success, but the resulting edema, and the need for steroids to control it, caused far more issues for her. So after a year post gamma knife and intolerable side effects from the edema, all on her care team agreed that the removal was really the best option. She is about 6 weeks post-op and seems to be doing very well. Tapering off of the steroids and getting her blood sugars back to normal. The edema/steroids were really scary – it effected her balance and her leg strength and thinking and she took many falls and hits to her head. We are lucky that the falling alone did not seriously injure her. It's my understanding that edema side effects are considered rare. Anyone else have any similar issues after gamma knife?

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@lisakuehl

My step mom, age 81, who lives in central Kentucky, just had a frontal lobe meningioma removed at the University of Kentucky, although she is a Mayo RST patient and initially underwent gamma knife radiation there to supress its growth. That part was a success, but the resulting edema, and the need for steroids to control it, caused far more issues for her. So after a year post gamma knife and intolerable side effects from the edema, all on her care team agreed that the removal was really the best option. She is about 6 weeks post-op and seems to be doing very well. Tapering off of the steroids and getting her blood sugars back to normal. The edema/steroids were really scary – it effected her balance and her leg strength and thinking and she took many falls and hits to her head. We are lucky that the falling alone did not seriously injure her. It's my understanding that edema side effects are considered rare. Anyone else have any similar issues after gamma knife?

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I should add that her post-surgery protocol was about a week in the hospital, then transfer to a rehab facility for PT/OT for several weeks to make sure she was able to get around and be steady on her feel while doing it. She is now back living at home and traveling, so all appears to be going the right direction.

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@mrector

Hi Kay, I'm so glad you are doing well. I think of you often and how you are doing.

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Hi back..and think of you often. I have had issues. Bilateral bleed that required emergency surgery (crani and burr hole) three weeks later had another bleed with a midline shift that required emergency surgery and had it in Savannah as I didn’t have time to get to Mayo. Spent 5 days in ICU and hated the ICU at the local hospital. So between December and the middle of March I have had 3 craniotomies and 2 burr holes. So far so good but was told “it is critical that you don’t raise your blood pressure or your heart rate.” I am back at the Y and working out. How is your journey going?? Sending you a hug.

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@mrector

I am so sorry you are going through this. I was diagnosed last year and had part of my tumor removed August 28, 2018. My tumor was wrapped around my left eye optic nerve and carotid artery. I have lost most of my vision in my left eye. I started losing vision in that eye before I was diagnosed. That's the only reason they suggested an MRI of my brain because of rapid vision loss. My surgery went well. I was in the hospital for 4 days. First 2 days in ICU, which is normal. If you have specific questions please feel free to ask. There are several of us on here that have been through this and will try to help. I am praying for you as you go through this journey.
Mandy Rector

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Hi Mandy! My name is Melissa James & I was recently diagnosed with ONSM on my right eye. I had biopsy surgery for proper diagnosis before starting radiation this past week. I noticed you said you had surgery to remove part of the tumor, did you have radiation/Chemotherapy for the rest? Wondering how you’re doing & if you’ve regained any of your sight? Hoping you’re doing well & sending prayers & good vibes your way ❤️

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So sorry to hear about your diagnosis. I know it is very nerve racking!
I recently had a biopsy on my optic nerve & was diagnosed with a WHO grade 1 ONSM- benign- thank the Lord. I started radiation last week & all is well so far.
Just wondering if by surgery you mean biopsy, or are they planning to surgically remove the tumor? Will you have radiation & what grade have they told your tumor is?
I hope all goes well, I will be praying for you to have a quick, easy recovery. I will be here in Jacksonville for the next six weeks for treatment; would love to meet up & chat if you can. You can never have too many friends in a situation like we are in. ☺️
Rest assured you are at the right place & that the wonderful group at Mayo will take really good care of you. ❤️

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