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nahi
@nahi

Posts: 8
Joined: Dec 17, 2017

meningioma behind left ear

Posted by @nahi, Dec 17, 2017

I had MRI yesterday and diagnosed with meningoma behind my left ear. Waiting for my appointment with neourosugen. I am facing the scariest weekend in my life

REPLY

Hello @nahi I am sorry to read of your healthcare journey, but even given the circumstances it is nice to e-meet you here on Connect! I am Scott and my wife was diagnosed with brain cancer and I was her primary caregiver. I remember all too well the times of waiting as often being among the most difficult to manage! I wish I had some magic suggestion of what we did to pass the waiting time, but all I can say is we made sure we kept as busy as we could to occupy ourselves. We did a lot of goofy, unnecessary things, but anything to help the time pass without thinking about what we didn’t know.

Personally I had a stroke two and a half weeks ago and it lodged in my right eye. I am in the doctor-specialist-more doctors-another specialist, with lots of days of waiting time. The time in-between in the worst! I’d rather just know!

One of the best aspects of Connect, at least to me, is the fact so many are here who have been through what some of us have so we can share, suggest, and best of all listen!

If you’re comfortable sharing, did this come out of the blue?

Sending strength, courage, and peace!

Hi @nahi. I was diagnosed with a grape-sized meningioma Sept 2 following an MRI. Mine is just left of center in the frontal lobe area resting against the large center vein (I can’t remember the medical name. Something sinus). I understand the waiting is hard. I have prayed a lot. I keep busy and lean on my husband for emotional support. I recommend getting at least a second opinion regarding your diagnosis and treatment, if any. I had two neurosurgeons and one neurologist review my scans. It was decided that the shape (very smooth and round, not jagged) led them to believe it is not cancer. I know the feeling of “but it’s not supposed to be there!” Most meningiomas are not cancer. So they decided to take the watch and wait approach rather than take the risk of surgery. I had my second MRI in November, 90 days after the first one. No signs of change. The headaches that led to the first MRI have subsided because I cut way back on Caffeine. My system isn’t crying out for caffeine in the middle of the night. Now we are waiting six months for the next MRI.I tell you all this because I am learning to live with it knowing many people live very long with meningiomas. Some don’t even know they have them. Since they are not in the grey matter area they usually are easier to take out if surgery is the route you and your medical team take. Stay as active as you can. Take walks if you are able. I feel for you and hope and pray things go well for you. I do relate to the waiting game.

@wkindel

Hi @nahi. I was diagnosed with a grape-sized meningioma Sept 2 following an MRI. Mine is just left of center in the frontal lobe area resting against the large center vein (I can’t remember the medical name. Something sinus). I understand the waiting is hard. I have prayed a lot. I keep busy and lean on my husband for emotional support. I recommend getting at least a second opinion regarding your diagnosis and treatment, if any. I had two neurosurgeons and one neurologist review my scans. It was decided that the shape (very smooth and round, not jagged) led them to believe it is not cancer. I know the feeling of “but it’s not supposed to be there!” Most meningiomas are not cancer. So they decided to take the watch and wait approach rather than take the risk of surgery. I had my second MRI in November, 90 days after the first one. No signs of change. The headaches that led to the first MRI have subsided because I cut way back on Caffeine. My system isn’t crying out for caffeine in the middle of the night. Now we are waiting six months for the next MRI.I tell you all this because I am learning to live with it knowing many people live very long with meningiomas. Some don’t even know they have them. Since they are not in the grey matter area they usually are easier to take out if surgery is the route you and your medical team take. Stay as active as you can. Take walks if you are able. I feel for you and hope and pray things go well for you. I do relate to the waiting game.

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Thank you for your help and giving me highlights to follow them. The size of mine about 1,5 cm I don’t know if consider it big or small that information I got from my primary doctor waiting tomorrow to call me from neurosurgeon office. I really appreciate your concern good luck for us

@IndianaScott

Hello @nahi I am sorry to read of your healthcare journey, but even given the circumstances it is nice to e-meet you here on Connect! I am Scott and my wife was diagnosed with brain cancer and I was her primary caregiver. I remember all too well the times of waiting as often being among the most difficult to manage! I wish I had some magic suggestion of what we did to pass the waiting time, but all I can say is we made sure we kept as busy as we could to occupy ourselves. We did a lot of goofy, unnecessary things, but anything to help the time pass without thinking about what we didn’t know.

Personally I had a stroke two and a half weeks ago and it lodged in my right eye. I am in the doctor-specialist-more doctors-another specialist, with lots of days of waiting time. The time in-between in the worst! I’d rather just know!

One of the best aspects of Connect, at least to me, is the fact so many are here who have been through what some of us have so we can share, suggest, and best of all listen!

If you’re comfortable sharing, did this come out of the blue?

Sending strength, courage, and peace!

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Thank you for your support , I really feel stronger with your words.

@IndianaScott

Hello @nahi I am sorry to read of your healthcare journey, but even given the circumstances it is nice to e-meet you here on Connect! I am Scott and my wife was diagnosed with brain cancer and I was her primary caregiver. I remember all too well the times of waiting as often being among the most difficult to manage! I wish I had some magic suggestion of what we did to pass the waiting time, but all I can say is we made sure we kept as busy as we could to occupy ourselves. We did a lot of goofy, unnecessary things, but anything to help the time pass without thinking about what we didn’t know.

Personally I had a stroke two and a half weeks ago and it lodged in my right eye. I am in the doctor-specialist-more doctors-another specialist, with lots of days of waiting time. The time in-between in the worst! I’d rather just know!

One of the best aspects of Connect, at least to me, is the fact so many are here who have been through what some of us have so we can share, suggest, and best of all listen!

If you’re comfortable sharing, did this come out of the blue?

Sending strength, courage, and peace!

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Good Evening. So sorry to hear of your stroke. Hoping for the best for you!! Sending healing thoughts your way. 
Nancy

@IndianaScott

Hello @nahi I am sorry to read of your healthcare journey, but even given the circumstances it is nice to e-meet you here on Connect! I am Scott and my wife was diagnosed with brain cancer and I was her primary caregiver. I remember all too well the times of waiting as often being among the most difficult to manage! I wish I had some magic suggestion of what we did to pass the waiting time, but all I can say is we made sure we kept as busy as we could to occupy ourselves. We did a lot of goofy, unnecessary things, but anything to help the time pass without thinking about what we didn’t know.

Personally I had a stroke two and a half weeks ago and it lodged in my right eye. I am in the doctor-specialist-more doctors-another specialist, with lots of days of waiting time. The time in-between in the worst! I’d rather just know!

One of the best aspects of Connect, at least to me, is the fact so many are here who have been through what some of us have so we can share, suggest, and best of all listen!

If you’re comfortable sharing, did this come out of the blue?

Sending strength, courage, and peace!

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I am sorry to hear what happened to you and your wife I will pray for all of us

@IndianaScott

Hello @nahi I am sorry to read of your healthcare journey, but even given the circumstances it is nice to e-meet you here on Connect! I am Scott and my wife was diagnosed with brain cancer and I was her primary caregiver. I remember all too well the times of waiting as often being among the most difficult to manage! I wish I had some magic suggestion of what we did to pass the waiting time, but all I can say is we made sure we kept as busy as we could to occupy ourselves. We did a lot of goofy, unnecessary things, but anything to help the time pass without thinking about what we didn’t know.

Personally I had a stroke two and a half weeks ago and it lodged in my right eye. I am in the doctor-specialist-more doctors-another specialist, with lots of days of waiting time. The time in-between in the worst! I’d rather just know!

One of the best aspects of Connect, at least to me, is the fact so many are here who have been through what some of us have so we can share, suggest, and best of all listen!

If you’re comfortable sharing, did this come out of the blue?

Sending strength, courage, and peace!

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You are welcome.  I will pray for you that you have the best report possible when you meet with the neurosurgeon.   I will also pray for peace to calm your fears.   I would love to hear how things go. The Mayo Clinic is a great place we all can share.  

It sucks. No other way to say it. This forum is great, though. A place to share thoughts and feelings that you can’t express to others. Learn as much as you can. I have meningioma … blah, blah, wait and watch and small cavernoma. “Probably there forever, don’t worry”. You face your own mortality finally. I hate this human feeling but there’s no other way out. Something, after all, has to get everybody. Maybe that’s the good thing. …… Technology now allows us to see so much we never would have known about otherwise. Good or bad. Plan your life. Live it to your fullest. Be smart. Surround yourself with knowledge.

Today was my appointment with neurosurgeon and he recommended to wait and watch since the surgery is very risky, the hearing nerve damaged probably up to ./.80. After three months another MRI and if it grows we will go with radiation . He didn’t recommend to go for biopsy and assure it is not cancer what do you think do I need a second opinion? please help.

If it was me, I would get a 2nd opinion. I decided to go with the SRS therapy to shrink my brain tumor. My tumor is pressing on my trigeminal nerve. Ask you neurosurgeon to refer you to a oncologist and get his advice. That is what I did.

Liked by EES1

@mrser52

If it was me, I would get a 2nd opinion. I decided to go with the SRS therapy to shrink my brain tumor. My tumor is pressing on my trigeminal nerve. Ask you neurosurgeon to refer you to a oncologist and get his advice. That is what I did.

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Surgery is very risky, and you don’t want that if there are no other options. So I you should wait and see what the next MRI shows. I got to thinking about my last comment to you, and I would do is trust your doctor. I will be praying for you.

Thank you , that what I will do If the next MRI shows any change. I will go to Mayo Clinic in Jacksonville sine I live in Florida. Do you recommend any doctor there.

Hi @nahi, If coming to Mayo Clinic is an option you are considering for a second opinion, here a link to the contact numbers to request an appointment http://mayocl.in/1mtmR63 When you call at any of our 3 campuses, you will be offered an appointment within 48 hours. Be sure to mention the Brain Tumor 48-access program.

@mrser52 mentioned that s/he decided to go with stereotactic radiosurgery (SRS), which is a non-surgical radiation therapy used to treat functional abnormalities and small tumors of the brain. SRS is the general term. You may also hear it referred to as gamma knife or cyberknife. I think you might both be interested in this discussion on Connect:
– Meningiomas. Gamma knife or Cyber Knife. Which is more effective ? https://connect.mayoclinic.org/discussion/meningeomas-gamma-knife-or-cyber-knife-which-is-more-effective/

You might also appreciate our Video Q&A with Dr. Bernard Bendok, neurosurgeon, and Dr. Sujay Vora, radiation oncologist, at Mayo Clinic https://connect.mayoclinic.org/webinar/mayoclinicneurochat-on-brain-tumors/

All the best with your treatment tomorrow, mrser52.

Liked by EES1

@mrser52

If it was me, I would get a 2nd opinion. I decided to go with the SRS therapy to shrink my brain tumor. My tumor is pressing on my trigeminal nerve. Ask you neurosurgeon to refer you to a oncologist and get his advice. That is what I did.

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I am scared the doctor said there is ./.5 risk in radiation to damage hearing nerve so we don’t need to take the risk if it shows no growing. Especially if we can mange the dizznes and headache .

I’d definitely get second opinion. No good reason not to. Peace of mind. One step at a time. Knowledge is good.

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