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?

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Profile picture for mrector @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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Profile picture for tumgo @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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Profile picture for jmb73 @jmb73

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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@jmb73 Hi,
I'm wondering how you are now (5 yrs later)? I'm having Gamma Knife procedure at Northwestern in Chicago in April, and frankly, frightened.
Janeelaine.

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Profile picture for janeelaine @janeelaine

@jmb73 Hi,
I'm wondering how you are now (5 yrs later)? I'm having Gamma Knife procedure at Northwestern in Chicago in April, and frankly, frightened.
Janeelaine.

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@janeelaine, I can understand your being frightend to get brain stereotactic radiosurgery (SRS) or Gamma Knife treatment. I'm tagging @jmb73 @mrector @purpleturtle @gammaqueen and others who can share more about what to expect.

While we wait for people to chime in, you might also appreciate the comments in this discussion:
- Stereotactic Radiosurgery Surgery (Gamma or Cyberknife) for Meningioma: https://connect.mayoclinic.org/discussion/gamma-knife-radio-surgery-for-meningioma/

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Profile picture for janeelaine @janeelaine

@jmb73 Hi,
I'm wondering how you are now (5 yrs later)? I'm having Gamma Knife procedure at Northwestern in Chicago in April, and frankly, frightened.
Janeelaine.

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@janeelaine I'm doing well. I didn't have to have gamma knife radiation. I was given brain radiation for 30 treatments. My tumor is stable. The Dr says I can have an MRI every year now instead of every 6 months.

I hope you find some answers on here before your treatment. I will keep you in my prayers.

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