Hi guys, Great idea to get updates on all of us from years ago!!! I just did my MRI's after waiting 2 years from the last one. No new growth since then. One of mine has grown a small amount over the past several years, and funny but it was my first one that had remained stable for over 10 years. The 2nd one that had popped up after all my Breast Cancer surgery, radiation and chemo showed up the first time at the same size as my old one and then really didn't grow after that first year. My BC was NOT related to my Meningiomas....opposite actually as a triple negative instead of the expected estrogen fed brain ones. Hope most on "watch and wait" are still able to avoid surgery as I am!!!!!!
It's so great to see you Lindajean!!!! Also happy to see things are "mostly normal", or at least a normal we are able to live and thrive with. Fabulous on avoiding further surgery. I'm doing the same. much love , peg
I have been keeping an eye on 2 meningiomas for 13 years. One started off gumball size and is now golf ball sized. The other is small and hasn’t grown. I have no symptoms so we’re not doing anything at this time.
I have been keeping an eye on 2 meningiomas for 13 years. One started off gumball size and is now golf ball sized. The other is small and hasn’t grown. I have no symptoms so we’re not doing anything at this time.
Hi, I'm so happy you're symptom free!! I have also been dealing with mine for 12 years now, but honestly, it's getting kind of old:-) I wish you all the best. peg
Hi there,
I just have one meningioma, and I am deciding between the 3 options of wait and watch, gamma knife, or surgery.
I was diagnosed last august.
Mine is in a tricky location. Most neurosurgeons say to wait and watch, some say gamma knife, and there’s 1 who specializes in this area of the brain and has completed many many successful removals. Anyway, I’m almost 47, and I look at it this way, but I think I need to hear more opinions from others who are in my shoes.
It’s as small as it will be right now. And I’m not getting any younger. It will grow. It is 2.8cm currently. It can become catastrophic if it grows.
Along thjs journey, I’ve met some people who swear their Dr is the best. At a different facility. Etc. and I suppose I’d be foolish not to meet with another great neurosurgeon.
Waiting and watching is literally wondering 24/7 what’s going on in my head. It is close to impossible to “forget about it for the next 6 months”. Living like this is brutal.
Gamma knife has good outcomes of stopping the growth. But then again, we then wait and watch. Surgery comes with such risk. Hence why I found a neurosurgeon who specializes in this area.
It would be wonderful to get this out of me. Meeting with that surgeon again 6/9.
I pray for a sign each day. And I will continue to pray for all of you. Please feel free to share your train of thoughts here. I feel like I need to hear it all.
Hi there,
I just have one meningioma, and I am deciding between the 3 options of wait and watch, gamma knife, or surgery.
I was diagnosed last august.
Mine is in a tricky location. Most neurosurgeons say to wait and watch, some say gamma knife, and there’s 1 who specializes in this area of the brain and has completed many many successful removals. Anyway, I’m almost 47, and I look at it this way, but I think I need to hear more opinions from others who are in my shoes.
It’s as small as it will be right now. And I’m not getting any younger. It will grow. It is 2.8cm currently. It can become catastrophic if it grows.
Along thjs journey, I’ve met some people who swear their Dr is the best. At a different facility. Etc. and I suppose I’d be foolish not to meet with another great neurosurgeon.
Waiting and watching is literally wondering 24/7 what’s going on in my head. It is close to impossible to “forget about it for the next 6 months”. Living like this is brutal.
Gamma knife has good outcomes of stopping the growth. But then again, we then wait and watch. Surgery comes with such risk. Hence why I found a neurosurgeon who specializes in this area.
It would be wonderful to get this out of me. Meeting with that surgeon again 6/9.
I pray for a sign each day. And I will continue to pray for all of you. Please feel free to share your train of thoughts here. I feel like I need to hear it all.
Everyone is different. I had a meningioma that grew and broke through my brain lining, which then caused headaches. I felt I had no choice but to have surgery. Because of the tricky location, the surgeon was unable to remove the whole thing, so I also had the gamma knife radiation afterwards. Both were successful, and my annual MRIs have shown no regrowth in the 4 1/2 years since. I have some odd residual symptoms that the surgeon does not believe are related to the tumor or surgery -- a strange new way of processing certain sounds that occur at the same time -- but I can mostly avoid those situations, so I wouldn't say it affects my quality of life much. I never doubted or regretted my decision, but it is a scary thing to think about before you arrive safely on the other side. Good luck with your decision and I hope it works out well for you.
Hi there,
I just have one meningioma, and I am deciding between the 3 options of wait and watch, gamma knife, or surgery.
I was diagnosed last august.
Mine is in a tricky location. Most neurosurgeons say to wait and watch, some say gamma knife, and there’s 1 who specializes in this area of the brain and has completed many many successful removals. Anyway, I’m almost 47, and I look at it this way, but I think I need to hear more opinions from others who are in my shoes.
It’s as small as it will be right now. And I’m not getting any younger. It will grow. It is 2.8cm currently. It can become catastrophic if it grows.
Along thjs journey, I’ve met some people who swear their Dr is the best. At a different facility. Etc. and I suppose I’d be foolish not to meet with another great neurosurgeon.
Waiting and watching is literally wondering 24/7 what’s going on in my head. It is close to impossible to “forget about it for the next 6 months”. Living like this is brutal.
Gamma knife has good outcomes of stopping the growth. But then again, we then wait and watch. Surgery comes with such risk. Hence why I found a neurosurgeon who specializes in this area.
It would be wonderful to get this out of me. Meeting with that surgeon again 6/9.
I pray for a sign each day. And I will continue to pray for all of you. Please feel free to share your train of thoughts here. I feel like I need to hear it all.
No. I didnt have any side effects from cyber knife. I had 5 treatments in a row for 5 days one hr. Each time. My tumor is 7mm in size behind my right eye. The original tumor was on mytemporal lobe it was the size of a ping pong ball. I wish ur sister all the best.
________________________________________
How is your vision now? did you end having more surgeries or more radiation since 2017? Thank you for sharing your experience. I'm going through a very similar one.
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It's so great to see you Lindajean!!!! Also happy to see things are "mostly normal", or at least a normal we are able to live and thrive with. Fabulous on avoiding further surgery. I'm doing the same. much love , peg
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1 ReactionI have been keeping an eye on 2 meningiomas for 13 years. One started off gumball size and is now golf ball sized. The other is small and hasn’t grown. I have no symptoms so we’re not doing anything at this time.
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2 ReactionsHi, I'm so happy you're symptom free!! I have also been dealing with mine for 12 years now, but honestly, it's getting kind of old:-) I wish you all the best. peg
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1 ReactionHi there,
I just have one meningioma, and I am deciding between the 3 options of wait and watch, gamma knife, or surgery.
I was diagnosed last august.
Mine is in a tricky location. Most neurosurgeons say to wait and watch, some say gamma knife, and there’s 1 who specializes in this area of the brain and has completed many many successful removals. Anyway, I’m almost 47, and I look at it this way, but I think I need to hear more opinions from others who are in my shoes.
It’s as small as it will be right now. And I’m not getting any younger. It will grow. It is 2.8cm currently. It can become catastrophic if it grows.
Along thjs journey, I’ve met some people who swear their Dr is the best. At a different facility. Etc. and I suppose I’d be foolish not to meet with another great neurosurgeon.
Waiting and watching is literally wondering 24/7 what’s going on in my head. It is close to impossible to “forget about it for the next 6 months”. Living like this is brutal.
Gamma knife has good outcomes of stopping the growth. But then again, we then wait and watch. Surgery comes with such risk. Hence why I found a neurosurgeon who specializes in this area.
It would be wonderful to get this out of me. Meeting with that surgeon again 6/9.
I pray for a sign each day. And I will continue to pray for all of you. Please feel free to share your train of thoughts here. I feel like I need to hear it all.
Everyone is different. I had a meningioma that grew and broke through my brain lining, which then caused headaches. I felt I had no choice but to have surgery. Because of the tricky location, the surgeon was unable to remove the whole thing, so I also had the gamma knife radiation afterwards. Both were successful, and my annual MRIs have shown no regrowth in the 4 1/2 years since. I have some odd residual symptoms that the surgeon does not believe are related to the tumor or surgery -- a strange new way of processing certain sounds that occur at the same time -- but I can mostly avoid those situations, so I wouldn't say it affects my quality of life much. I never doubted or regretted my decision, but it is a scary thing to think about before you arrive safely on the other side. Good luck with your decision and I hope it works out well for you.
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Helpful -
Hug
1 ReactionThank you for your response and I wish you the very best!
Can you share what surgeon you went to?
How is your vision now? did you end having more surgeries or more radiation since 2017? Thank you for sharing your experience. I'm going through a very similar one.