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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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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?

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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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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.

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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?

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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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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

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

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1 reply
jmart1969 | @jmart1969 | Oct 5, 2022
In reply to @rsfcowgirl "Hi. I'm newly diagnosed too. I haven't gone thru surgery but have read here the many..." + (show)
@rsfcowgirl

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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Thank you so much for reaching out to me. Thanks for your words of encouragement. I am not getting as much info from my doc. I am schedule for surgery and I am having second thoughts

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jmb73 | @jmb73 | Oct 5, 2022
In reply to @jmart1969 "Hi. First hearing about the Gamma ray. I am in Jamaica. Any connection or contact over..." + (show)
@jmart1969

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

Jump to this post

It would be worth it to ask your Dr. about the possibility of having Gamma Ray surgery. I live in Orlando and my neurosurgeon is Dr. Field with Advent Health. He lectures all over about Gamma Ray surgery. Maybe your Dr. has heard of him.
Good luck,
Joan

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rsfcowgirl | @rsfcowgirl | Oct 5, 2022

I don't know about the quality or sophistication of care in Jamaica. I faced the possibility of brain surgery recently. I live in a relatively advanced US area. Even still, I sought the consultation with the top recognized neurosurgeons + hospitals near me. I strongly agree with your second thoughts. Having 2 brain surgeries did not seem like a good plan to me at all. Florida has very good neurosurgeons + hospitals. Mayo Clinic is also there.
It doesn't seem like you have had sufficient info for an informed decision. Don't be pressured into surgery in Jamaica. Look into a consult with someone from Florida. You can get help with this in 24 hrs for free from the American Brain Tumor Association. 1-800-886 -ABTA. I encourage you to reach out to them today. They have nurses who can provide you with information that covers everything from info on your diagnosis to coordination of consultations for 2nd opinions of your MRI. There is no charge for their help.

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rsfcowgirl | @rsfcowgirl | Oct 5, 2022

PS. ABTA Also can inform you of all options other than surgery. Even clinical trials you may qualify for if you have no other options.

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sambarry8585 | @sambarry8585 | Oct 24, 2022

I had a posterior fossa meningioma removed back in 2010. Now after headaches, issues with my words and vision problems, I had a new MRI performed.
It shows new, rounded, extra-axial, enhancing lesion with dural tail adjacent tot he lateral aspect of the left cerebellar hemisphere. Enhancing lesion is 1.5 x 1.6 cm. No significant diffusion restriction. Lesion abuts and probably invades the left transverse sinus. No evidence of venous hemorrhage/infarction. There is an additional smaller similar appearing lesion just adjacent to the other lesion measuring 7 x 4 mm. Prior left retromastoid cranially surgical changes. Minimal encephalomalacia present on the lateral aspect of the left cerebral hemisphere.

Not sure what to think about this. Being referred to a neurosugeon to discuss my "options"

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