Diagnosed with Meningioma

Posted by IrishMomz @irishmomz, Aug 7, 2019

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.

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@cdgspirit

I was recently diagnosed with meningioma it is not cancerous but it
is located between the optic nerve and I took an MRI a few weeks ago
and the last time I spoke to my surgeon he told me he could not remove the whole tumor because it was too close to the optic nerve and blood vessels. I have to be transported to Portland for the surgery
I have an appointment with the surgeon on Sept 8 to go over the new MRI and find out when I will get this done I am very scared and nervous I am 71 years old female and always had good health but my eyes are starting to go blurry when I take off my glasses. any advice?

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By the way, it's not uncommon that the surgeon does not remove an entire tumor when it's located close to critical structures. That approach is taken when it would create more damage to disturb the tumor at the critical structure than leaving the partial tumor. Since meningiomas grow very slowly most of the time, the outcome for an older person with some residual tumor is very good, per medical statistics, bc we often just outlive the tumor's presence and slow growth. But the specifics of your individual case should be covered to you by your surgeon. When I received my diagnosis, I chose to have a 2nd opinion from another experienced Neurosurgeon. They are often free of charge if it's just a review of your MRI. And no one takes offence by that.

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@cdgspirit

I was recently diagnosed with meningioma it is not cancerous but it
is located between the optic nerve and I took an MRI a few weeks ago
and the last time I spoke to my surgeon he told me he could not remove the whole tumor because it was too close to the optic nerve and blood vessels. I have to be transported to Portland for the surgery
I have an appointment with the surgeon on Sept 8 to go over the new MRI and find out when I will get this done I am very scared and nervous I am 71 years old female and always had good health but my eyes are starting to go blurry when I take off my glasses. any advice?

Jump to this post

Hello,
I’m sorry to hear that you’re going through this stress! I also had a tumor growing onto my optic nerve. I had a host of health issues going on, as the tumor was a pituitary adenoma, destroying function of the pituitary gland and then impairing my optic nerve. It was only when I had lost all vision in my right eye, that an mri was done and the tumor was discovered. By then it was huge. I had surgery to remove the tumor and afterwards immediately regained some vision back in my eye. The vision is blurry, but still much better than right-eye vision loss. I have also found that my left (good) eye, compensates for the visual deficiencies of the right. I also had gamma knife done a year later, as the tumor was large (macro-adenoma) and any residual tumor is likely to grow. I continue to see a neuro-ophthalmologist yearly and he monitors for any changes, but my eyes have remained stable. As an avid reader, I continue to enjoy reading. Put your trust in your surgeon. This area is their specialty. The body works to heal itself. Give yourself time to recover and try to focus on enjoying life. Good luck!

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@cdgspirit

I was recently diagnosed with meningioma it is not cancerous but it
is located between the optic nerve and I took an MRI a few weeks ago
and the last time I spoke to my surgeon he told me he could not remove the whole tumor because it was too close to the optic nerve and blood vessels. I have to be transported to Portland for the surgery
I have an appointment with the surgeon on Sept 8 to go over the new MRI and find out when I will get this done I am very scared and nervous I am 71 years old female and always had good health but my eyes are starting to go blurry when I take off my glasses. any advice?

Jump to this post

Diagnosed with meningioma and really need someone to talk to

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@cdgspirit

I was recently diagnosed with meningioma it is not cancerous but it
is located between the optic nerve and I took an MRI a few weeks ago
and the last time I spoke to my surgeon he told me he could not remove the whole tumor because it was too close to the optic nerve and blood vessels. I have to be transported to Portland for the surgery
I have an appointment with the surgeon on Sept 8 to go over the new MRI and find out when I will get this done I am very scared and nervous I am 71 years old female and always had good health but my eyes are starting to go blurry when I take off my glasses. any advice?

Jump to this post

I was diagnosed with meningioma in May 2022. I took the CT scan to rule out a stroke because the right side of my face was paralysed.( Just a reversal here. I had bells palsy in 2019.)
CT result was a meningioma I did the MRI same result.
To cut to the chase. I had the same location of the meningioma
I am scared to this surgery. Have the same symptoms l am 52 years old

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@jmart1969

Diagnosed with meningioma and really need someone to talk to

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Hi. I'm not an expert but I have one. I know how frightening and disruptive it is to hear the diagnosis. I found Brain Tumor Network 1 844-286-6110. They are comprehensive for no cost professional (RN) phone and hand on support for the entire journey. They also provide you with options for top medical care, such as Mayo Clinic or true experts in your area. So glad you reached out. Someone from Mayo here will respond shortly. I'm stepping up so you have a connection to grab onto.

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@jmart1969

Diagnosed with meningioma and really need someone to talk to

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Hi J mart,
I was diagnosed in 2018 with a meningioma and it was scary. Luckily, my neuro-ophthalmologist sent me to brain surgeon who specializes in Gamma Ray surgery. Jill, another Gamma Ray gal, walked me through it and I had no problems. I did have to get an MRI every 6 months and then once a year and now I'm down to every 3 years. It's always on my mind but the MRI reassures me that the Gamma Ray surgery did its job. If you can get that, then go for it.
Let me know how you are doing.
Joan

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@jmart1969

I was diagnosed with meningioma in May 2022. I took the CT scan to rule out a stroke because the right side of my face was paralysed.( Just a reversal here. I had bells palsy in 2019.)
CT result was a meningioma I did the MRI same result.
To cut to the chase. I had the same location of the meningioma
I am scared to this surgery. Have the same symptoms l am 52 years old

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Hi. I'm newly diagnosed too. I haven't gone thru surgery but have read here the many postings about great neurosurgeons who specialize in our tumor types and the good results people have had. There are options. But all would agree that the most important action is to have an experienced neurosurgeon in skull based tumors. As for fear, of course anyone would feel that. People here can help you thru the journey. My diagnosing Primary Care MD was no help. I found Brain Tumor Network- a no charge comprehensive RN navigation and education + support organization. Made everything so easy. Gave me my medical services options, specific info and even sent my MRI's to a specialist I wanted to consult for me. I am stable and under observation status. Not having surgery. Someone from Mayo Clinic will have a great response for you shortly as I've seen here time after time. I draw from my deep faith as my way of coping. I also take calming supplements. But we are all different. Hang in there. I know it's alot to handle. You can get thru it and never have to go it alone. Wishing you the best.

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@jmart1969

I was diagnosed with meningioma in May 2022. I took the CT scan to rule out a stroke because the right side of my face was paralysed.( Just a reversal here. I had bells palsy in 2019.)
CT result was a meningioma I did the MRI same result.
To cut to the chase. I had the same location of the meningioma
I am scared to this surgery. Have the same symptoms l am 52 years old

Jump to this post

Welcome @jmart1969. I see that @rsfcowgirl and @jmb73 reached out with helpful supportive messages for you already.

To connect with even more members like @mrector @kmart @mkjames @pam1954 @purpleturtle @fiddlinchuck @jabax @barbiejk @cdgspirit and many others, I moved your message to this existing discussion:

- Diagnosed with Meningioma: https://connect.mayoclinic.org/discussion/diagnosed-with-meningioma/

I know this diagnosis is very scary. But you are not alone.

You have a lot to absorb right now. Have they talked about a treatment plan? Surgery? How are you doing?

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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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Your story almost mimics mine. I had the Gamma knife procedure done in 2019 at Mayo Rochester to stop the growth on my tumor. Like you I developed edema and was put on strong steroids which were horrible. Sadly my tumor started to grow rapidly resulting in seizures and strikes. I had emergency surgery to remove my tumor that same year and had a difficult recovery. My speech and walking on my left side were effected. My tumor was on my left side. After much therapy I am glad to report that I have recovered well. I still have MRIs every 6 months to check and see if is growing back.

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@colleenyoung

Welcome @jmart1969. I see that @rsfcowgirl and @jmb73 reached out with helpful supportive messages for you already.

To connect with even more members like @mrector @kmart @mkjames @pam1954 @purpleturtle @fiddlinchuck @jabax @barbiejk @cdgspirit and many others, I moved your message to this existing discussion:

- Diagnosed with Meningioma: https://connect.mayoclinic.org/discussion/diagnosed-with-meningioma/

I know this diagnosis is very scary. But you are not alone.

You have a lot to absorb right now. Have they talked about a treatment plan? Surgery? How are you doing?

Jump to this post

I am getting a head MRI every 6 months now
to make sure meningioma does not change
hopefully. No surgery planned unless symptoms
not bearable. I have numbness in half face and
mouth but able to function. Eyes tearing with
weight of mass which bothers me of course.
Balance is also affected now.
Thank you, Judy Baxter

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