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robinem
@robinem

Posts: 2
Joined: Feb 08, 2018

Watching a Meningioma Brain Tumor

Posted by @robinem, Feb 8, 2018

I’ve just been diagnosed with a 2cm meningioma tumor on the right front of my head. I am 59 years old and the surgeon has told me I will need to “do something” with my tumor someday since I am younger. What is the benefit of waiting?

REPLY

@lisalucier @hopeful33250
I went to the doctor today and was diagnosed with a concussion. The headaches continue so I’m supposed to limit my activity for a few days. I know this is very minuscule in comparison to what many of you are facing. I simply wanted to let you know that I did go to the doctor.

@mrector

I had a 9cm brain tumor removed 6 weeks ago. It is wrapped around my carotid artery and optic nerve on my left side. The neurosurgeon could only remove 85% of the tumor. I have lost vision in my left eye due to the tumor. My jaw is still really bothering me where they had to cut and remove tumor. I can't open my mouth wide and having a hard time eating. I have a lot of pain when I eat. Is this normal and just part of healing? It hurts in my tmj area temple area. I am good to a neuro-opthamologist October 15th to see what else to except with my eye. The neurosurgeon said I will eventually go completely blind in left eye so I hope to learn more on October 15th of what to expect.

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Hi @mrector, welcome to Connect. It takes time to heal after surgery. However, I would hope that some of the pain in your jaw would start to subside. Have you talked to your surgeon about it? It would also be good to mention it at your upcoming appointment with the neuro-opthamologist.

You may also be interested in this discussion on Connect:

– Optic Nerve Meningioma patients https://connect.mayoclinic.org/discussion/optic-nerve-meningioma-patients/

@colleenyoung

Hi @mrector, welcome to Connect. It takes time to heal after surgery. However, I would hope that some of the pain in your jaw would start to subside. Have you talked to your surgeon about it? It would also be good to mention it at your upcoming appointment with the neuro-opthamologist.

You may also be interested in this discussion on Connect:

– Optic Nerve Meningioma patients https://connect.mayoclinic.org/discussion/optic-nerve-meningioma-patients/

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I was thinking about talking to the neuro-opthamologist above it. I alsace sent my neurosurgeon at message asking him if it's normal. Hopefully I will hear from him by end of the week.

@twomama

@lisalucier @hopeful33250
I went to the doctor today and was diagnosed with a concussion. The headaches continue so I’m supposed to limit my activity for a few days. I know this is very minuscule in comparison to what many of you are facing. I simply wanted to let you know that I did go to the doctor.

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@twomama I'm glad that you saw your doctor. The best thing for concussion is rest and limiting your activity, including reducing screen time. Not that I want to send you away from Connect, but health comes first.

@kkenn

I've had some ringing in my left ear recently.

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Me, too. First annual W&W MRI today. Feel new symptom of tinnitus could mean growth. Scared beyond description. One step at a time. Work on facts only. Breathe. Expert NSs are out there. Keep on. Ok….anything else?? :/

@ees1

Me, too. First annual W&W MRI today. Feel new symptom of tinnitus could mean growth. Scared beyond description. One step at a time. Work on facts only. Breathe. Expert NSs are out there. Keep on. Ok….anything else?? :/

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Hi there – my saying (in trying to overcome my extreme fear LOL) is INCH BY INCH. And breath by breath! Enjoy each moment. It is great that you are relying on facts.
Peaace & Happiness
Gloria

@ees1

Me, too. First annual W&W MRI today. Feel new symptom of tinnitus could mean growth. Scared beyond description. One step at a time. Work on facts only. Breathe. Expert NSs are out there. Keep on. Ok….anything else?? :/

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@ees1 , Let us know how your 1st annual Watch and wait MRI went, we are all crossing our fingers and toes for you that there is NO growth!!!!

I am 44 and only after being in a car accident was my tumor discovered. I've named my tumor "Olive" because that is the size of the tumor. My meningioma sits just above my cerebellum. I go for my next MRI on December 11th

I continue to have decreased vision in my left eye since approximately May/2018. Had cataract surgery on both eyes when I began to notice my vision in my L eye was not right. After several tests, my eye doctor ordered a MRI which shows a meningioma on the optic chiasm. I saw a neurosurgeon yesterday and he went over my options, wait and see, or surgery. My eye doctor wants me to have the surgery immediately. I have been told I will, probably, lose sight in my L eye (depending on the growth of the tumor) and my R eye is also compromised. The wait and see option scares me but the surgery even more. Within 6 months my L eye vision continues to diminish.

Hi @kmart. You may have noticed I moved your post to this existing thread on meningioma brain tumors. I do this so that you can connect with others who have or had this tumor. Click VIEW & REPLY in your email and you will be able to read what past members have posted about this condition.

I also wanted to introduce you to @slakeman, @gloriajean and @rose4622 as they all have had this tumor and may be able to sympathize with what you are going through.

@kmart, you mentioned that the surgery scares you even more than the wait and see option. Do you mind sharing what about the surgery scares you?

@ethanmcconkey

Hi @kmart. You may have noticed I moved your post to this existing thread on meningioma brain tumors. I do this so that you can connect with others who have or had this tumor. Click VIEW & REPLY in your email and you will be able to read what past members have posted about this condition.

I also wanted to introduce you to @slakeman, @gloriajean and @rose4622 as they all have had this tumor and may be able to sympathize with what you are going through.

@kmart, you mentioned that the surgery scares you even more than the wait and see option. Do you mind sharing what about the surgery scares you?

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The wait and see option scares me since there is a good possibility of becoming blind. I am aware that this is usually a slow-growing tumor, however, my L optic nerve is already stretched a lot by the mass. I really would like to know if anyone has had this surgery .

Liked by mrector

@kmart

The wait and see option scares me since there is a good possibility of becoming blind. I am aware that this is usually a slow-growing tumor, however, my L optic nerve is already stretched a lot by the mass. I really would like to know if anyone has had this surgery .

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@kmart I have the same tumor. I was losing vision in my left eye and my eye Dr thought it was glaucoma. I was treated for that but my vision kept getting worse. Finally I got an MRI of my brain and the tumor was discovered. The only option for me was surgery due to the tumor being wrapped around my carotid artery and optic nerve. I had surgery on August 28th 2018. The neurosurgeon could only get 85% of the tumor due to high risks of the coratid artery and optic nerve involvement. The surgery lasted 10 hours but went very well. Unfortunately my vision in left eye is worse and I am trying to get used to that being the new normal. My right eye is trying to take over but could take up to a year. I have double vision and dizziness but I try to take one day at a time. I am 45 years old and this is definitely something that was a shock to be diagnosed with but I am thankful it was discovered and I am still here. I will have MRIs to monitor the remaining tumor and hopefully only radiation if the tumor grows. I wish you the best and I will be praying for you. I hope this helps a little. I am here if you need to talk.

@mrector

@kmart I have the same tumor. I was losing vision in my left eye and my eye Dr thought it was glaucoma. I was treated for that but my vision kept getting worse. Finally I got an MRI of my brain and the tumor was discovered. The only option for me was surgery due to the tumor being wrapped around my carotid artery and optic nerve. I had surgery on August 28th 2018. The neurosurgeon could only get 85% of the tumor due to high risks of the coratid artery and optic nerve involvement. The surgery lasted 10 hours but went very well. Unfortunately my vision in left eye is worse and I am trying to get used to that being the new normal. My right eye is trying to take over but could take up to a year. I have double vision and dizziness but I try to take one day at a time. I am 45 years old and this is definitely something that was a shock to be diagnosed with but I am thankful it was discovered and I am still here. I will have MRIs to monitor the remaining tumor and hopefully only radiation if the tumor grows. I wish you the best and I will be praying for you. I hope this helps a little. I am here if you need to talk.

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Thank you so much for your quick reply and yes, it really helped. Would like very much to stay in touch with you as I wonder down this path. k

Yes please stay in touch. I'll try to help as much as I can.

@ethanmcconkey

Hi @kmart. You may have noticed I moved your post to this existing thread on meningioma brain tumors. I do this so that you can connect with others who have or had this tumor. Click VIEW & REPLY in your email and you will be able to read what past members have posted about this condition.

I also wanted to introduce you to @slakeman, @gloriajean and @rose4622 as they all have had this tumor and may be able to sympathize with what you are going through.

@kmart, you mentioned that the surgery scares you even more than the wait and see option. Do you mind sharing what about the surgery scares you?

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I had a 3.3 cm acoustic neuroma removed Sept 10, 2018 at Mayo. I was scared but was told if I didn't have surgery I would be dead in 2 years. At 68 years old I wanted to try to survive surgery and possibly spend 10 or more years with my bubby of 43 years. I also have 4 adult kids and 10 grandkids. Im glad I had the surgery but am still in recovery. Im still hoping to improve balance enough to drive myself to appts. Hoping this is not my new normal but if it is I'm still happy to be alive.

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