Meningioma showing signs of re-growth

Posted by mrector @mrector, Sep 20, 2020

I had 85% of my meningeoma removed in August of 2018. I saw my neurosurgeon by phone on September 15th, 2020. According to the MRI, the meningeoma is growing slightly.
I have noticed that I’m having dull aching headaches almost everyday for the past few months. I blamed them on tension headaches or being so hot outside. Not really thinking that it was tumor related. Also vision seems to be worse in left eye.
My neurosurgeon wants to wait and repeat the MRI on December 14, 2020. I see my neuro-opthamologist on October 15th to check peripheral vision. My question is should I request to be seen sooner than December since I’m having these symptoms? Or should I wait and see what the peripheral vision test shows in October and go from there?

You should be seen sooner—especially as you’re having symptoms!

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You definitely should get an earlier appointment. Listen to your body as it's warning you that something is going on. Good luck.

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Hi @mrector, I'm sorry to hear of the possible re-growth of the meningioma. Is the neurosurgeon aware of the headaches, their frequency and intensity?

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@colleenyoung

Hi @mrector, I'm sorry to hear of the possible re-growth of the meningioma. Is the neurosurgeon aware of the headaches, their frequency and intensity?

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Yes he's aware. He wants me to see my neuro-opthamologist first to check peripheral vision in left eye. I'm getting frustrated because I can't see him until October 15th. I've tried to get seen earlier but they are booked up. I guess that means it's okay to wait until then???

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Hi @mrector, I wanted to check in with you. How did the appointment with the neuro-opthamologist go? What did you find out?

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The appointment went well. Tumor is growing and I do have more vision loss in my left eye. Waiting on answers from my neurosurgeon to see if I am doing radiation or another surgery. I don't see the neurosurgeon until December 14, but trying to get in sooner.

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I saw my neurosurgeon today, Nov 2nd. My meningioma tumor is growing causing headaches and more vision loss in my left eye. My neurosurgeon is surprised that the tumor grew that much in just 2 years after craniotomy.

My Dr recommends Gamma Knife radiation or an aggressive 2nd surgery. My tumor is wrapped around my carotid artery and optic nerve but he wants to try and remove most of it. He said it would be a risky surgery with possible brain bleed or stroke.

He said that the tumor will not shrink with the radiation but will stabilize it. I am leaning towards the Gamma Knife but wanted some advice.

I have headaches everyday, would the radiation help with the headaches since it's not shrinking the tumor? Will the tumor still grow after radiation at some point and if so can I do radiation again?? I'm just a little overwhelmed at the moment and just need some advice from people who have gone through this.

Thanks for listening
Mandy Rector

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@mrector

I saw my neurosurgeon today, Nov 2nd. My meningioma tumor is growing causing headaches and more vision loss in my left eye. My neurosurgeon is surprised that the tumor grew that much in just 2 years after craniotomy.

My Dr recommends Gamma Knife radiation or an aggressive 2nd surgery. My tumor is wrapped around my carotid artery and optic nerve but he wants to try and remove most of it. He said it would be a risky surgery with possible brain bleed or stroke.

He said that the tumor will not shrink with the radiation but will stabilize it. I am leaning towards the Gamma Knife but wanted some advice.

I have headaches everyday, would the radiation help with the headaches since it's not shrinking the tumor? Will the tumor still grow after radiation at some point and if so can I do radiation again?? I'm just a little overwhelmed at the moment and just need some advice from people who have gone through this.

Thanks for listening
Mandy Rector

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@mrector It sounds like you saw your neurosurgeon early due to experiencing more visions loss and headaches. Your doctor recommends Gamma Knife but it is a risky surgery.

That sounds like an extremely difficult decision to make. You are feeling overwhelmed and you need advice from people that have gone through something similar. Listed below are a few discussions that you may find of interest.

– Gamma knife treatment in 2018 for meningioma around the optic area https://connect.mayoclinic.org/discussion/gamma-knife-treatment-in-2018-for-meningioma-around-the-optic-area/

– Stereotactic Radiosurgery Surgery (Gamma or Cyberknife) for Meningioma https://connect.mayoclinic.org/discussion/gamma-knife-radio-surgery-for-meningioma/

– Cerebral amyloid angiopathy https://connect.mayoclinic.org/discussion/cerebral-amyloid-angiopathy/

@nanatessie @pegorr @jill333 @jmb73 are all active members that have been part of these discussions in the past. They may be helpful in navigating your difficult decision.

May I ask, do you have loved ones that are helping you make this decision?

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@erikas

@mrector It sounds like you saw your neurosurgeon early due to experiencing more visions loss and headaches. Your doctor recommends Gamma Knife but it is a risky surgery.

That sounds like an extremely difficult decision to make. You are feeling overwhelmed and you need advice from people that have gone through something similar. Listed below are a few discussions that you may find of interest.

– Gamma knife treatment in 2018 for meningioma around the optic area https://connect.mayoclinic.org/discussion/gamma-knife-treatment-in-2018-for-meningioma-around-the-optic-area/

– Stereotactic Radiosurgery Surgery (Gamma or Cyberknife) for Meningioma https://connect.mayoclinic.org/discussion/gamma-knife-radio-surgery-for-meningioma/

– Cerebral amyloid angiopathy https://connect.mayoclinic.org/discussion/cerebral-amyloid-angiopathy/

@nanatessie @pegorr @jill333 @jmb73 are all active members that have been part of these discussions in the past. They may be helpful in navigating your difficult decision.

May I ask, do you have loved ones that are helping you make this decision?

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Thank you for your response. I will definitely read through these. I am so thankful I have an amazing husband and family that are helping me pray and decide which procedure to take.

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@mrector

I saw my neurosurgeon today, Nov 2nd. My meningioma tumor is growing causing headaches and more vision loss in my left eye. My neurosurgeon is surprised that the tumor grew that much in just 2 years after craniotomy.

My Dr recommends Gamma Knife radiation or an aggressive 2nd surgery. My tumor is wrapped around my carotid artery and optic nerve but he wants to try and remove most of it. He said it would be a risky surgery with possible brain bleed or stroke.

He said that the tumor will not shrink with the radiation but will stabilize it. I am leaning towards the Gamma Knife but wanted some advice.

I have headaches everyday, would the radiation help with the headaches since it's not shrinking the tumor? Will the tumor still grow after radiation at some point and if so can I do radiation again?? I'm just a little overwhelmed at the moment and just need some advice from people who have gone through this.

Thanks for listening
Mandy Rector

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Hi Mandy, I am so sorry that you are going through so much. I was lucky as my neurosurgeon gave me all the choices but strongly recommended Gamma surgery. I was told it wouldn't shrink the tumor but would stop it from growing. I just had my 1 year MRI and it has gone from long and skinny to short and fat (like Me)! I have had no problems after the Gamma Surgery. Before I had it done, I researched the recommended neurosurgeon and he was/is the Director of the Gamma Surgery Dept. So I went with what he felt was best. Jill, another member of this group, "walked me through it". So if you decide to have Gamma surgery, I would be happy to "walk you through" it. Take care. I will keep you in my thoughts and prayers. Joan

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@mrector

Thank you for your response. I will definitely read through these. I am so thankful I have an amazing husband and family that are helping me pray and decide which procedure to take.

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Hi, I have the same type of tumor and after 80% of it was removed it stated growing very aggressively after only 3 months. The doctor did gama knife radiation but the headaches were still very strong so the neurosurgeon referred me to pain management where I had a nerve block done for the pain. It’s been a lot better since. I just did another scan last week which I’m not too happy with the results based on my understanding but I’m waiting for an appointment from my doctor to hear what he has to say.
In your case don’t go for another craniotomy, do the gamma knife radiation. My tumor did reduce in size after gamma knife radiation.

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@tumgo

Hi, I have the same type of tumor and after 80% of it was removed it stated growing very aggressively after only 3 months. The doctor did gama knife radiation but the headaches were still very strong so the neurosurgeon referred me to pain management where I had a nerve block done for the pain. It’s been a lot better since. I just did another scan last week which I’m not too happy with the results based on my understanding but I’m waiting for an appointment from my doctor to hear what he has to say.
In your case don’t go for another craniotomy, do the gamma knife radiation. My tumor did reduce in size after gamma knife radiation.

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@tumgo It sounds like you have experience with the gamma knife radiation and information to share. When is the appointment with your provider?

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Hi Erika, I had my appointment with the neurosurgeon last week and he told me the tumor reduced just a tiny bit which I’m very happy about. I was worried because I was feeling strange sensation in my head and more headaches. He scheduled my next scan in a year unless something comes up. I guess I can say gamma knife works for me so far cause it’s been decreasing since I had it done. I definitely recommend it.

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Hi everyone. I have an appointment with a Radiation Oncologist on Wednesday, December 9th for a consultation about Gamma Knife. I'm counting down the days. I'm just ready for answers and hopefully a treatment plan. I appreciate your thoughts and prayers. I'll keep you posted.

Mandy

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