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.

@mrector

I'm so glad you are home. Praying for you. I am doing well, I have my checkup with my neurosurgeon next Monday. I pray everything is okay. I'll keep you posted

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How was your check up? Sending prayers to you for a clean and healthy checkup.
@

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Is there anything simple about this surgery and recovery. On 2/28/19 I was taken by ambulance to the hospital. Suddenly I became dizzy, nausea, and my legs gave way. For about 2 hours I had slurred speech and my left side was weak. I was tested for a stroke and a seizure. All good. My NS thought it was PLEDS….had to look up and still not sure what "that" is. I am fine and again told, "do nothing". The words "do nothing" are not in my life. Very difficult for me as I have always worked out every day.

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@kmart

How was your check up? Sending prayers to you for a clean and healthy checkup.
@

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@kmart My checkup went well. My residual tumor is not growing and I'm healing on schedule. Thank you so much for your prayers. I have a repeat brain MRI scheduled for Aug and my next appointment is in September.

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@kmart

Is there anything simple about this surgery and recovery. On 2/28/19 I was taken by ambulance to the hospital. Suddenly I became dizzy, nausea, and my legs gave way. For about 2 hours I had slurred speech and my left side was weak. I was tested for a stroke and a seizure. All good. My NS thought it was PLEDS….had to look up and still not sure what "that" is. I am fine and again told, "do nothing". The words "do nothing" are not in my life. Very difficult for me as I have always worked out every day.

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@kmart I haven't heard of PLEDS. I'll have to research it. I'm so sorry you are going through all this. I'm praying you don't have anymore complications. Hopefully someone will see this post and be able to help you more. Just please keep me posted on how you are doing and I will try to help in anyway I can.

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Hi everyone!!! I just found this site. My boyfriend has meningioma tumor on right side pressing on his trigemal nerve He has had surgery, 15 years ago. Lost his hearing. Then they did gamma knife surgery. We live in CO going to Mayo clinic In MInnasot in April. Any advise???? His option of three procedures.
He has numbness in his face, tongue roof of mouth. Thank you!

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I have posted about my tumour a lot here. Ots not the same as your boyfriend.. after 15 months of this I can say that isikeky aide changing trip and things go really slowly…dont dis pair about these symptoms as things can indeed come right …

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Mine is on the optic nerve and surrounding the carotid artery. They said it was inoperable because of the many different delicate things in that area. I've had 2 opinions one from an extremely good neurosurgeon and another who has seen many in the area or on the optic nerve and said he has never seen it operated on for the damage it can do. I am set up for 5 day radiation to shrink it or slow the growth in 2 weeks. How badly is your eye effected? Wishing you well, Julie

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@coconut1

Hi everyone!!! I just found this site. My boyfriend has meningioma tumor on right side pressing on his trigemal nerve He has had surgery, 15 years ago. Lost his hearing. Then they did gamma knife surgery. We live in CO going to Mayo clinic In MInnasot in April. Any advise???? His option of three procedures.
He has numbness in his face, tongue roof of mouth. Thank you!

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Welcome to Connect, @coconut1. Your boyfriend will be in good hands at Mayo Clinic. @kmart @jeank1234 @nancye3 and @frit5 all have experience with brain tumor treatment at Mayo. You may be interested in the discussions in the group called:
– Visiting Mayo Clinic https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

Coconut, what 3 procedure options are being considered for your boyfriend?

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I recently, Feb 12, had surgery to remove meningioma from optic nerve on my left side. I had lost most of my vision in that eye. No peripheral vision or depth perception. I was hoping after surgery to get some of that back. I do nails for a living and still can not see like I would like to. If anyone has had something similar to this and got their vision back. I would love to hear about it.

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@kelleroberts

I recently, Feb 12, had surgery to remove meningioma from optic nerve on my left side. I had lost most of my vision in that eye. No peripheral vision or depth perception. I was hoping after surgery to get some of that back. I do nails for a living and still can not see like I would like to. If anyone has had something similar to this and got their vision back. I would love to hear about it.

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Hi…I am in a similar situation. My Meningioma is growing around my left optical nerve and I am planning an operation this year. I am very scared to lose my vision as well and look for the best neurosurgeon. Please let me know more details … was this your first operation, where was your operation?

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I was diagnosed last June; left eye has a meningioma wrapped around the optic nerve causing vision loss, color blindness, pain, and pressure.

The tumor spread into my brain near the sinuses as well. I had surgery the day before my birthday; July 31, 2018. They were only able to remove the part that had spread into my brain. The neurosurgeon didn't dare to remove any from the eye once they realized how wrapped up it was in the blood vessels. He was nervous it would blind me for sure and didn't want to take the chance.

I did 6 weeks of radiation. Last treatment was New Year's Eve. My oncologist and the rest of my medical team is disappointed that things have not only not improved, they have become worse. Testing shows the nerve is thinning and my vision continues to deteriorate.

I have been strong throughout this journey but that strength is waning… I have been monitoring this feed for a while but didn't feel up to posting; at this point, however, I could really use support from others that understand what I'm going through.

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@lynzee

I was diagnosed last June; left eye has a meningioma wrapped around the optic nerve causing vision loss, color blindness, pain, and pressure.

The tumor spread into my brain near the sinuses as well. I had surgery the day before my birthday; July 31, 2018. They were only able to remove the part that had spread into my brain. The neurosurgeon didn't dare to remove any from the eye once they realized how wrapped up it was in the blood vessels. He was nervous it would blind me for sure and didn't want to take the chance.

I did 6 weeks of radiation. Last treatment was New Year's Eve. My oncologist and the rest of my medical team is disappointed that things have not only not improved, they have become worse. Testing shows the nerve is thinning and my vision continues to deteriorate.

I have been strong throughout this journey but that strength is waning… I have been monitoring this feed for a while but didn't feel up to posting; at this point, however, I could really use support from others that understand what I'm going through.

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I know how you feel. My tumor is wrapped around my left optic nerve also. I have lost most vision in my left eye and eventually will be blind in that eye. I had 85% of the tumor removed August 2018. Dr is continuing to monitor the remaining tumor. I get so frustrated with how this has changed my life completely, don't get me wrong, I am thankful I am still here but I feel worthless now. I no longer can work and don't understand why God didn't go ahead and take me. I'm so sorry you are going through this too. Let me know if I can help in any way. I'm here to listen.
Mandy Rector

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@pranas

Hi…I am in a similar situation. My Meningioma is growing around my left optical nerve and I am planning an operation this year. I am very scared to lose my vision as well and look for the best neurosurgeon. Please let me know more details … was this your first operation, where was your operation?

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This was my first operation. My surgeon said he wouldn't go back in again. My surgery was done in Murray UT. Now we are planning on radiation that will last 6 weeks, 5 days a week. I am having MRI's every 3 months.This has been a crazy journey. Im sad that my vision didn't change with this surgery and am doing all I can to stay positive..

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@kelleroberts

This was my first operation. My surgeon said he wouldn't go back in again. My surgery was done in Murray UT. Now we are planning on radiation that will last 6 weeks, 5 days a week. I am having MRI's every 3 months.This has been a crazy journey. Im sad that my vision didn't change with this surgery and am doing all I can to stay positive..

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@kelleroberts My surgery was done by a team of neurosurgeons at Tuft's in Massachusetts. Every day I was there the entire team would come in to check in on me; as this condition, as I'm sure you're aware, is so rarely seen.

I hate to say this; I had high hopes and tried to stay as positive as possible throughout this journey too. However, these past couple of months I have struggled. None of my doctors have any insight to provide besides saying we're essentially in a "holding pattern". I swear, I am going to write a bio and name it "Holding Pattern; The New Normal."

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@mrector

I know how you feel. My tumor is wrapped around my left optic nerve also. I have lost most vision in my left eye and eventually will be blind in that eye. I had 85% of the tumor removed August 2018. Dr is continuing to monitor the remaining tumor. I get so frustrated with how this has changed my life completely, don't get me wrong, I am thankful I am still here but I feel worthless now. I no longer can work and don't understand why God didn't go ahead and take me. I'm so sorry you are going through this too. Let me know if I can help in any way. I'm here to listen.
Mandy Rector

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@mrector It sounds like we were hospitalized around the same time! I was in from July 31-August 6. As I said in my message to Kelle; My surgery was done by a team of neurosurgeons at Tuft's in Massachusetts. Every day I was there the entire team would come in to check in on me; as this condition, as I'm sure you're aware, is so rarely seen.

I totally get the way you feel… I just spoke with my Long Term Disability Insurance company's attorney to start the process of applying for SSI….I know that supposedly the universe doesn't give you more than you can handle… But I tell you what, my fingertips are about worn out and I think I'm starting to lose my grip. 😭

What symptoms are you having at this point? I'd like to compare, just out of curiosity. 🤔

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