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Karl
@Karl

Posts: 2
Joined: Oct 17, 2015

Might have a brain tumor. Should I get a second opinion?

Posted by @Karl, Oct 17, 2015

Hello. Well….I am 52 and found out yesterday that i have something going on in my brain…. The neurosurgeon wasn’t sure, but thought it looked like a Glioma from the MRI. He recommends an open biopsy ASAP to confirm and to allow him to visualize the area. Right now i am in the absorbing stage and looking for suggestions on whether to proceed with him, or immediately assume the worst and escalate to requesting an appointment at Mayo Clinic.

REPLY

Hi @Karl, Welcome to Connect. Well that’s a lot to process and you’re right to take some time to absorb, research and consider your options. Getting a second opinion doesn’t necessarily mean to assume the worst. You current neurosurgeon may even appreciate your getting a second opinion. Requesting an appointment is as simple as clicking the link at the top right of the page.

What led you to think the MRI showed glioma?

@colleenyoung

Hi @Karl, Welcome to Connect. Well that’s a lot to process and you’re right to take some time to absorb, research and consider your options. Getting a second opinion doesn’t necessarily mean to assume the worst. You current neurosurgeon may even appreciate your getting a second opinion. Requesting an appointment is as simple as clicking the link at the top right of the page.

What led you to think the MRI showed glioma?

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I had a ‘visual disturbance’ which precipitated the MRI. My doctor consulted with a neurologist, the radiologist and a neurosurgeon before getting back with me. The consensus is that they are not 100% sure of what is going on, but there is a very high probability i have a glioma. Main indication is 1.8×2.0cm in the occipital region with a leader to a smaller area in the thalmic region.

I think a second opinion in treating a serious condition is a very smart thing to do. I would get one before I had any kind of invasive procedure.

My name is Jackie, I am 24 years old and I am a brain tumor survivor of 20 years. I have a Glioma type of tumor. I’ve had radiation, chemo therapy, and five brain surgeries. I now have one brain shunt and an ommyaresawar. I still have the tumor, the doctors r not able to remove all of it. The tumor has taken some of my eye sight, my energy, and ability to do some things on my own. I suffer from chronic fatigue. I have joined this site because I hoped to find someone who shares my experiences and someone who knows what I’m talking about and would like to share some of their experiences with me.

Hi @Jackiewizardof, welcome. I’m so glad that you found Connect. I’m the new Community Director here and one of my main priorities is to help people connect with other people with similar experiences and build the community. I’ll get back to you soon (I hope).

It sounds like much of your life was/is spent in and out of hospitals. Have you ever connected with someone who shares your experience while in hospital?

@colleenyoung

Hi @Jackiewizardof, welcome. I’m so glad that you found Connect. I’m the new Community Director here and one of my main priorities is to help people connect with other people with similar experiences and build the community. I’ll get back to you soon (I hope).

It sounds like much of your life was/is spent in and out of hospitals. Have you ever connected with someone who shares your experience while in hospital?

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No I haven’t. Thank u for contacting me

Well, I aim to change that here on Connect. Having being diagnosed as a child and now 24, do you get treated in a pediatric facility or adult facility? Young adults often fall between the cracks don’t they?

Liked by Jackiewizardof

Hi Jackie -Welcome. I am also a brain tumor survivor, though I do not have a glioma. However, I do have a VP shunt. Is that the same kind of shunt you have? Mine is for hydrocephalus caused by my tumor, which was actually an acoustic neuroma.

@Jackiewizardof

My name is Jackie, I am 24 years old and I am a brain tumor survivor of 20 years. I have a Glioma type of tumor. I’ve had radiation, chemo therapy, and five brain surgeries. I now have one brain shunt and an ommyaresawar. I still have the tumor, the doctors r not able to remove all of it. The tumor has taken some of my eye sight, my energy, and ability to do some things on my own. I suffer from chronic fatigue. I have joined this site because I hoped to find someone who shares my experiences and someone who knows what I’m talking about and would like to share some of their experiences with me.

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Hi Jackie and welcome. I joined recently, like you, to find out if other people have, my kind of cancer in their colon with a huge tumor in the liver. I was diagnosed early this year and have had chemo for several months and the tumor is not shrinking. They’re going to try the SIR-Spheres procedure on me in 2 weeks. This puts radiation microspheres directly in my liver tumor and it is said that it will shrink the tumor in a few months small enough that a surgeon should be able to resect it. I know my situation is not at all like yours, but just thought I’d mention that this is a great site and nice people here. Good luck to you.

@Jackiewizardof

My name is Jackie, I am 24 years old and I am a brain tumor survivor of 20 years. I have a Glioma type of tumor. I’ve had radiation, chemo therapy, and five brain surgeries. I now have one brain shunt and an ommyaresawar. I still have the tumor, the doctors r not able to remove all of it. The tumor has taken some of my eye sight, my energy, and ability to do some things on my own. I suffer from chronic fatigue. I have joined this site because I hoped to find someone who shares my experiences and someone who knows what I’m talking about and would like to share some of their experiences with me.

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Thank u so much! I hope everything goes well for u to. My thoughts and prayers r with u

Liked by Sue

@colleenyoung

Well, I aim to change that here on Connect. Having being diagnosed as a child and now 24, do you get treated in a pediatric facility or adult facility? Young adults often fall between the cracks don’t they?

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No I’m seen by an adult practiced doctor. We sure do fall between the cracks

No, my shunt is used for the sists that fill up with CFS fluid and drain into my stomach. The ommyaresawar just holds the fluid and has to b drained by a needle.

I was just wondering if anyone has experienced a feeling of their head shaking? I sit in my chair and try to relax but it feels as if my head is shaking in some way

@Jackiewizardof

My name is Jackie, I am 24 years old and I am a brain tumor survivor of 20 years. I have a Glioma type of tumor. I’ve had radiation, chemo therapy, and five brain surgeries. I now have one brain shunt and an ommyaresawar. I still have the tumor, the doctors r not able to remove all of it. The tumor has taken some of my eye sight, my energy, and ability to do some things on my own. I suffer from chronic fatigue. I have joined this site because I hoped to find someone who shares my experiences and someone who knows what I’m talking about and would like to share some of their experiences with me.

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Hey Jackie~
Although I’m not “exactly” like you….no two brain tumor patients really are, I do have some similarities. I am a 16 year survivor of a very rare brain tumor called an Ansplastic PXA. I have also had 5 surgeries, 3 different chemotherapies, standard radiation and most recently proton beam radiation too. I was not a child through all of this but experience the fatigue and some long term side effects of treatments. The best advice I can give is to really stay as active as you can despite the side effects…even if that means just doing a short activity each day. I learned at Mayo Clinic that simply practicing daily meditation or doing yoga can improve fatigue. Keep making plans and having things to look forward too! Most importantly…be good to yourself!! It’s ok to feel bad about what has happened to you sometimes, but just don’t allow yourself to get stuck there! If you have the opportunity to join a local brain tumor support group I would highly suggest it. You are not alone!!!

@cynaburst

Hi Jackie -Welcome. I am also a brain tumor survivor, though I do not have a glioma. However, I do have a VP shunt. Is that the same kind of shunt you have? Mine is for hydrocephalus caused by my tumor, which was actually an acoustic neuroma.

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Hi! my daughter’s hydrocephalus was also caused by her tumor. Instead of a shunt, surgeon put in a catheter. Where was/is your tumor?

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