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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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jmart1969 | @jmart1969 | Oct 5, 2022
In reply to @jmb73 "Hi J mart, I was diagnosed in 2018 with a meningioma and it was scary. Luckily,..." + (show)
@jmb73

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

Jump to this post

Hi. First hearing about the Gamma ray. I am in Jamaica. Any connection or contact over there?

REPLY
1 reply
jmart1969 | @jmart1969 | Oct 5, 2022
In reply to @colleenyoung "Welcome @jmart1969. I see that @rsfcowgirl and @jmb73 reached out with helpful supportive messages for you..." + (show)
@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

Hi. Thank you so much for reaching out to me. For treatment it's surgery. I am very scared and don't know what to expect. I am in Jamaica and if it is done here (remove some from a 3cm size) I would have to remove the balance in Miami. I wish this ould all be done over there.

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rsfcowgirl | @rsfcowgirl | Sep 26, 2022

Hi. I know it feels scary but I'm glad there is a treatment available so you retain your vision. Neurosurgeons are the smartest and most technically skilled Drs in the world. I hope uou can rest in the fact you're in the best hands, literally.
I am +will to be praying for you.
You have a few weeks to bolster your health and fitness in preparation for surgery +recovery, if you are so inclined.
Please let us know if there's anything we can do.
Blessings.

REPLY
cdgspirit | @cdgspirit | Sep 25, 2022

I am waiting for a ppointment for a six hour surgery to remove most of it they have to open my nose
its a very intense operation. Its going to take two doctors to do it. I have to go go Portland in a few weeks.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 25, 2022
In reply to @cdgspirit "I was recently diagnosed with meningioma it is not cancerous but it is located between the..." + (show)
@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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@cdgspirit, how are you doing? What did you learn from the surgeon at your appointment to review the MRI?

REPLY
jabax | @jabax | Sep 17, 2022
In reply to @colleenyoung "Welcome @jmart1969. I see that @rsfcowgirl and @jmb73 reached out with helpful supportive messages for you..." + (show)
@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

REPLY
purpleturtle | @purpleturtle | Sep 16, 2022
In reply to @lisakuehl "My step mom, age 81, who lives in central Kentucky, just had a frontal lobe meningioma..." + (show)
@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.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 16, 2022
In reply to @jmart1969 "I was diagnosed with meningioma in May 2022. I took the CT scan to rule out..." + (show)
@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?

REPLY
2 replies
rsfcowgirl | @rsfcowgirl | Sep 16, 2022
In reply to @jmart1969 "I was diagnosed with meningioma in May 2022. I took the CT scan to rule out..." + (show)
@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

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.

REPLY
1 reply
jmb73 | @jmb73 | Sep 16, 2022
In reply to @jmart1969 "Diagnosed with meningioma and really need someone to talk to" + (show)
@jmart1969

Diagnosed with meningioma and really need someone to talk to

Jump to this post

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

REPLY
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