Optic Nerve Meningioma patients

Posted by alpineir @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.

I am wanting several opinions and definitely minimally invasive like nano knife or endonasal endoscopic surgery something other than radiation and craniotomy.

@tammywyatt

I am wanting several opinions and definitely minimally invasive like nano knife or endonasal endoscopic surgery something other than radiation and craniotomy.

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@tammywyatt You are wise to get several opinions and to research minimally invasive options. To contact Mayo Clinic, here is the online form and contact numbers for our 3 campuses http://mayocl.in/1mtmR63 We offer appointments within 48 hours through the the Brain Tumor 48-access program. Experts at the Mayo Clinic can help you navigate your options and answer questions about nano knife and endonasal endoscopic surgery. Be sure to mention the Brain Tumor 48-access program.

I also have a meningioma mass effect on the optic chiasm. I have a tunnel/blurry vision in my left eye and my right eye optic nerve is also compromised. I saw a neurosurgeon and surgery is the only option, or wait and see. My eye doctor is pressing me to have the surgery immediately. In the last 6 months, I have had a total knee replacement and rotator cuff surgery. Not anxious for more surgery but also scared of becoming blind. I too am looking to hear from someone that underwent the removal of the tumor on the optic nerve.

@kmart

I also have a meningioma mass effect on the optic chiasm. I have a tunnel/blurry vision in my left eye and my right eye optic nerve is also compromised. I saw a neurosurgeon and surgery is the only option, or wait and see. My eye doctor is pressing me to have the surgery immediately. In the last 6 months, I have had a total knee replacement and rotator cuff surgery. Not anxious for more surgery but also scared of becoming blind. I too am looking to hear from someone that underwent the removal of the tumor on the optic nerve.

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Since my posting on 11/17, I have met with a neurosurgeon at Mayo in Jacksonville. I was not at all comfortable nor liked the neurosurgeon I met in my city and immediately made an appointment at Mayo. I am scheduled for surgery at Mayo on 12/14/18 and feel very confident with my surgeon and staff. This is not the best time of year to do surgery, ie, holidays, but as my eyesight lessens I am starting to have slight balance problems it is time to do the surgery. Dr. Riemer answered all my questions ( I had prepared my questions before my appointment.) He has scheduled me for several appointments with other specialists before the surgery which adds to my confidence. If anyone has any advise or ideas I need to be aware of please let me know.

@kmart

Since my posting on 11/17, I have met with a neurosurgeon at Mayo in Jacksonville. I was not at all comfortable nor liked the neurosurgeon I met in my city and immediately made an appointment at Mayo. I am scheduled for surgery at Mayo on 12/14/18 and feel very confident with my surgeon and staff. This is not the best time of year to do surgery, ie, holidays, but as my eyesight lessens I am starting to have slight balance problems it is time to do the surgery. Dr. Riemer answered all my questions ( I had prepared my questions before my appointment.) He has scheduled me for several appointments with other specialists before the surgery which adds to my confidence. If anyone has any advise or ideas I need to be aware of please let me know.

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@kmart I'm thrilled that you found care that you can be confident in. Good for you for coming prepared with questions. Did you see this discussion on Connect?
– Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

I bet you would have some great tips to add.

@tammywyatt

I am wanting several opinions and definitely minimally invasive like nano knife or endonasal endoscopic surgery something other than radiation and craniotomy.

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Hi @tammywyatt, it's been a while. Did you and your care team decide which treatment option is best for you? Have you had treatment since you last wrote?

I'd like to bring a new member into this discussion, @eewtao has experience with many of the treatment options you are researching, including craniotomy, endoscopic endonasal surgery and gamma knife. Perhaps you can ask your questions.

I have a question but not sure which group to post in. I had a craniotomy to remove 85% of my brain tumor on August 28th, 2018. I also have arthritis and bulging disc in my lower back. I've had 2 epidural spinal injections and they have not helped. I am going January 3rd, 2019 for my 3rd injection. The Dr I am seeing does not want to do surgery, just injections. He prescribed Tramadol for pain. I have not taken the Tramadol because I read that if you have a brain tumor to not take Tramadol. I also take Prozac and I was told by my pharmacist that Tramadol and Prozac can cause a reaction if taken together. Are these statements true and do I need to request something else for pain? I'm very frustrated with the pain that I have and only been able to take Tylenol which does nothing for the pain. Please help…
Mandy Rector

@mrector

I have a question but not sure which group to post in. I had a craniotomy to remove 85% of my brain tumor on August 28th, 2018. I also have arthritis and bulging disc in my lower back. I've had 2 epidural spinal injections and they have not helped. I am going January 3rd, 2019 for my 3rd injection. The Dr I am seeing does not want to do surgery, just injections. He prescribed Tramadol for pain. I have not taken the Tramadol because I read that if you have a brain tumor to not take Tramadol. I also take Prozac and I was told by my pharmacist that Tramadol and Prozac can cause a reaction if taken together. Are these statements true and do I need to request something else for pain? I'm very frustrated with the pain that I have and only been able to take Tylenol which does nothing for the pain. Please help…
Mandy Rector

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Hi, @mrector – sounds like through this process of dealing with the arthritis and bulging disc in your back, you are looking out for yourself and taking care with your medications, especially with your history of brain tumor.

Here is some pertinent Mayo Clinic information about tramadol and interactions – see the Drug Interactions section https://www.mayoclinic.org/drugs-supplements/tramadol-oral-route/before-using/drg-20068050

Perhaps the best route at this point would be to go back to the doctor you are seeing who prescribed the Tramadol for a discussion on taking this if you have a brain tumor and whether this medication and the fluoxetine (Prozac) you are taking can cause a reaction (or is required despite this). Would it be possible to contact this doctor tomorrow? Are you finding anything that provides any relief in the meantime?

Liked by mrector

@mrector

I have a question but not sure which group to post in. I had a craniotomy to remove 85% of my brain tumor on August 28th, 2018. I also have arthritis and bulging disc in my lower back. I've had 2 epidural spinal injections and they have not helped. I am going January 3rd, 2019 for my 3rd injection. The Dr I am seeing does not want to do surgery, just injections. He prescribed Tramadol for pain. I have not taken the Tramadol because I read that if you have a brain tumor to not take Tramadol. I also take Prozac and I was told by my pharmacist that Tramadol and Prozac can cause a reaction if taken together. Are these statements true and do I need to request something else for pain? I'm very frustrated with the pain that I have and only been able to take Tylenol which does nothing for the pain. Please help…
Mandy Rector

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@mrector
Hi Mandy,
Yes it’s absolutely true. Your very wise heeding your pharmacists warnings. My Neurologist cautioned me about it because it can increase seizure activity, my nemesis. It can have interactions with Antibiotics and some blood thinners. There have been cases where people have died. I believe that is rare.
There are some effective NSAID meds. I took Vioxx and switched to Celebrex after Vioxx was banned. Vioxx was an awesome medication except for killing 60,000 or so people. Feldene was a good drug that helped me. Although you need to be aware of long term NSAID use especially if your older. Possible kidney failure, ulcers, heart attacks and stroke among other less serious problems. However I don’t know how much is safe but your doctor will. You might want to see a Rheumatologist.
Hope you find something safe and effective that controls your pain.
Health and happiness,
Jake

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@lisalucier

Hi, @mrector – sounds like through this process of dealing with the arthritis and bulging disc in your back, you are looking out for yourself and taking care with your medications, especially with your history of brain tumor.

Here is some pertinent Mayo Clinic information about tramadol and interactions – see the Drug Interactions section https://www.mayoclinic.org/drugs-supplements/tramadol-oral-route/before-using/drg-20068050

Perhaps the best route at this point would be to go back to the doctor you are seeing who prescribed the Tramadol for a discussion on taking this if you have a brain tumor and whether this medication and the fluoxetine (Prozac) you are taking can cause a reaction (or is required despite this). Would it be possible to contact this doctor tomorrow? Are you finding anything that provides any relief in the meantime?

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I can only take Tylenol for pain because I am allergic to ibuprofen, alieve and Aspirin. Tylenol does not help the pain. I'm going Thursday to get the epidural spinal injection by the Dr that prescribed the Tramadol and I am going to talk to him and see what he recommends. I feel like I am overreacting and being a pain. Thank you for helping me feel better about not taking the Tramadol. So thankful for this group
Mandy

@mrector

I can only take Tylenol for pain because I am allergic to ibuprofen, alieve and Aspirin. Tylenol does not help the pain. I'm going Thursday to get the epidural spinal injection by the Dr that prescribed the Tramadol and I am going to talk to him and see what he recommends. I feel like I am overreacting and being a pain. Thank you for helping me feel better about not taking the Tramadol. So thankful for this group
Mandy

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@mrector – it sounds like through your health journey you've learned to be your own advocate and look out for your best interests.

Liked by mrector

@nancye3

Hi Pranas,
How large is your tumor? Are you having any side effects from it. My sister had surgery 15 years ago for a frontal lobe tumor. She did lose her sense of smell but vision is fine. She recently found out that she has a New meningioma very close to her optic nerve. After consultations with several NS she decided to fly to Rochester
Mayo Clinic where she had Gamma Knife Radiation on that meningioma and 2 other new ones. She will go back in April for another MRI to see if they have shrunk in size. Hopefully you will hear back from others on this wonderful site who can be of some help to you and share surgical experiences. Best of Luck and sending well wishes your way. Nancy

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Hello. My name is Paula. I had proton radiation in 2009. I have a Optic Nerve Meningioma. I have had 3 brain surgeries and 128 proton beam radiation treatments. If you would like to talk. I would love talk. I would love to share my experiences. I have been fighting for my life sine 1999.
God bless.
Paula

I posted this to another person in this group. I’m not sure how this works. I’m new to the group.

Hello. My name is Paula. I had proton radiation in 2009. I have a Optic Nerve Meningioma. I have had 3 brain surgeries and 128 proton beam radiation treatments. If you would like to talk. I would love talk. I would love to share my experiences. I have been fighting for my life sine 1999.
God bless.
Paula

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@paulaakelley70

I posted this to another person in this group. I’m not sure how this works. I’m new to the group.

Hello. My name is Paula. I had proton radiation in 2009. I have a Optic Nerve Meningioma. I have had 3 brain surgeries and 128 proton beam radiation treatments. If you would like to talk. I would love talk. I would love to share my experiences. I have been fighting for my life sine 1999.
God bless.
Paula

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Welcome @paulaakelley70. Thank you for joining the group about Optic Nerve Meningioma to share your experiences, especially with surgery and proton radiation, but also living with such a diagnosis. I'm confident that @kmart @pranas @07ram @israel53 @tammywyatt and others will appreciate your insights.

Paula, why did you have to have 3 surgeries? How are you doing today? What vision issues do you manage?

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It is very hard for me now to type. 🙂
Please forgive my mistakes.
The first brain surgery took 17 hours. Wow. Right ? 7 years later it came back with a vengeance. It had spread into my cavernous sinus. Wrapping around all 3 cranial nevers. Right side frontal lobe. I was terminal. Inoperable as well. Then 7 years later I had # 3 surgery they removed as much of the tumor from internal crartive artery. I was having 50 or so seizures a day. They couldn’t remove anymore without horrific permanent damage. Then I did proton beam. 5 days a week for 4 months. I’m now blind in my right eye.
I struggle even today. You must understand I was terminal. Proton beam extended my life considerably. 8 years later I bless god everyday. I will answer any questions anyone has. Please feel free to ask away. 😘

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