Brain MRI – I have a question

Lisa,

I've now been 2 months and 2 weeks.  Originally I had the first appointment in EMR after 2 weeks. I sure learned then that what a real headache is.  Now I've had much worse ones that I was originally that weekend.   I had the follow up at 6 weeks (mine was early because of the bleeding to make sure that it had stopped, they would have originally gone to the 4 weeks but saw was stable after the 2 weeks).  I was able then to see it had shrunk by about 20% and they could tell it would continue to shrink.   Because of seeing double today they again did another mri today, 1 month later and saw that it has shrunk even more. 

Seeing the comparing scans was interesting.  You can still see where it had bled and also see how much it has shrunk!  I have another appointment with my radiologist and nuerologist next week.  My issue is now edema.  I've been told that this can be common from the high dose of radiation.  Now the decision is to do a crainectomy or not.  My issue was that the tumor itself was so deep inside. 

I would think with your larger tumor would have shrunk if you felt it by now.  It was really interesting (once I wasn't panicked) to compare the different scans.  Now it's totally gray. 

My friend just had a crainectomy and it was 4.2cm (not including the bleeding), he did not feel any symptoms until 2 weeks before his surgery, but some people have symptoms that are small.  

Enjoy the next 2 weeks and try to put aside the anxiety until right before.   Easier said then done.

Linda

Lisa,

I've now been 2 months and 2 weeks.  Originally I had the first appointment in EMR after 2 weeks. I sure learned then that what a real headache is.  Now I've had much worse ones that I was originally that weekend.   I had the follow up at 6 weeks (mine was early because of the bleeding to make sure that it had stopped, they would have originally gone to the 4 weeks but saw was stable after the 2 weeks).  I was able then to see it had shrunk by about 20% and they could tell it would continue to shrink.   Because of seeing double today they again did another mri today, 1 month later and saw that it has shrunk even more. 

Seeing the comparing scans was interesting.  You can still see where it had bled and also see how much it has shrunk!  I have another appointment with my radiologist and nuerologist next week.  My issue is now edema.  I've been told that this can be common from the high dose of radiation.  Now the decision is to do a crainectomy or not.  My issue was that the tumor itself was so deep inside. 

I would think with your larger tumor would have shrunk if you felt it by now.  It was really interesting (once I wasn't panicked) to compare the different scans.  Now it's totally gray. 

My friend just had a crainectomy and it was 4.2cm (not including the bleeding), he did not feel any symptoms until 2 weeks before his surgery, but some people have symptoms that are small.  

Enjoy the next 2 weeks and try to put aside the anxiety until right before.   Easier said then done.

Linda

Lisa,

I've now been 2 months and 2 weeks.  Originally I had the first appointment in EMR after 2 weeks. I sure learned then that what a real headache is.  Now I've had much worse ones that I was originally that weekend.   I had the follow up at 6 weeks (mine was early because of the bleeding to make sure that it had stopped, they would have originally gone to the 4 weeks but saw was stable after the 2 weeks).  I was able then to see it had shrunk by about 20% and they could tell it would continue to shrink.   Because of seeing double today they again did another mri today, 1 month later and saw that it has shrunk even more. 

Seeing the comparing scans was interesting.  You can still see where it had bled and also see how much it has shrunk!  I have another appointment with my radiologist and nuerologist next week.  My issue is now edema.  I've been told that this can be common from the high dose of radiation.  Now the decision is to do a crainectomy or not.  My issue was that the tumor itself was so deep inside. 

I would think with your larger tumor would have shrunk if you felt it by now.  It was really interesting (once I wasn't panicked) to compare the different scans.  Now it's totally gray. 

My friend just had a crainectomy and it was 4.2cm (not including the bleeding), he did not feel any symptoms until 2 weeks before his surgery, but some people have symptoms that are small.  

Enjoy the next 2 weeks and try to put aside the anxiety until right before.   Easier said then done.

Linda

hey Lisa-    Your case sounds a lot like mine- excep[ i had like 9 more or so under 1 cm tumours .  I also had WBR on top of 7 or 9 SRS's .  I know many people are hesitant about WBR, but I'm not a blithering idiot yet !  (no more 'dan i ever wus)  I would consider doing WBR as extra precaution…..especially IF anything new shows up in your next week MRI,  and let's pray to God nothing will.    I started IPI immediately after SRS and WBR and my lung issues mostly cleared up…..AND i give IPI (and WBR) some credit for keeping my numerous brain tumors in check- especially the few small ones that were NOT SRS's.     Take Care !!!  Grady.     PS:  JAG/John has been an immense inspiration to me- I thought for sure from all i read and the radiologists' attitude that there was little or no hope for me….4-6 mths…..then i read John's Story and realized i could be just as stubborn and proactive against the brain buggers!  

hey Lisa-    Your case sounds a lot like mine- excep[ i had like 9 more or so under 1 cm tumours .  I also had WBR on top of 7 or 9 SRS's .  I know many people are hesitant about WBR, but I'm not a blithering idiot yet !  (no more 'dan i ever wus)  I would consider doing WBR as extra precaution…..especially IF anything new shows up in your next week MRI,  and let's pray to God nothing will.    I started IPI immediately after SRS and WBR and my lung issues mostly cleared up…..AND i give IPI (and WBR) some credit for keeping my numerous brain tumors in check- especially the few small ones that were NOT SRS's.     Take Care !!!  Grady.     PS:  JAG/John has been an immense inspiration to me- I thought for sure from all i read and the radiologists' attitude that there was little or no hope for me….4-6 mths…..then i read John's Story and realized i could be just as stubborn and proactive against the brain buggers!  

hey Lisa-    Your case sounds a lot like mine- excep[ i had like 9 more or so under 1 cm tumours .  I also had WBR on top of 7 or 9 SRS's .  I know many people are hesitant about WBR, but I'm not a blithering idiot yet !  (no more 'dan i ever wus)  I would consider doing WBR as extra precaution…..especially IF anything new shows up in your next week MRI,  and let's pray to God nothing will.    I started IPI immediately after SRS and WBR and my lung issues mostly cleared up…..AND i give IPI (and WBR) some credit for keeping my numerous brain tumors in check- especially the few small ones that were NOT SRS's.     Take Care !!!  Grady.     PS:  JAG/John has been an immense inspiration to me- I thought for sure from all i read and the radiologists' attitude that there was little or no hope for me….4-6 mths…..then i read John's Story and realized i could be just as stubborn and proactive against the brain buggers!  

Hey Lisa. Once you have the Brain Mets, you'll go every 2+ months til they don't see anything on your scan basically.  Once there is nothing there, my brain doctor said he wants to see me every 4 months (which I"m scared of now, as that's all the longer it took for my orange size tumor to grow they said!).

I'm sure yours are shrinking with the Gamma Knife, as it works on 85% of people, and lets hope there's no new tumors of course too!  Not having any symptoms sounds great too.

My brain was clear last checkup, I'm due again in March 9th for my next checkup, but of course I"m always worried. Before my last checkup my head was just feeling achy (as if you have a cold, etc), and it still always feels like that, even now, the spot where I had my giant tumor removed from just aches (like as if someone is pushing on the spot there), but I guess I have to live with that now always having a weird feeling there.

Best of luck on the next scan and I hope it's good news for the Brain when you go back and it shows shrinkage of the tumors!

Hey Lisa. Once you have the Brain Mets, you'll go every 2+ months til they don't see anything on your scan basically.  Once there is nothing there, my brain doctor said he wants to see me every 4 months (which I"m scared of now, as that's all the longer it took for my orange size tumor to grow they said!).

I'm sure yours are shrinking with the Gamma Knife, as it works on 85% of people, and lets hope there's no new tumors of course too!  Not having any symptoms sounds great too.

My brain was clear last checkup, I'm due again in March 9th for my next checkup, but of course I"m always worried. Before my last checkup my head was just feeling achy (as if you have a cold, etc), and it still always feels like that, even now, the spot where I had my giant tumor removed from just aches (like as if someone is pushing on the spot there), but I guess I have to live with that now always having a weird feeling there.

Best of luck on the next scan and I hope it's good news for the Brain when you go back and it shows shrinkage of the tumors!

Hey Lisa. Once you have the Brain Mets, you'll go every 2+ months til they don't see anything on your scan basically.  Once there is nothing there, my brain doctor said he wants to see me every 4 months (which I"m scared of now, as that's all the longer it took for my orange size tumor to grow they said!).

I'm sure yours are shrinking with the Gamma Knife, as it works on 85% of people, and lets hope there's no new tumors of course too!  Not having any symptoms sounds great too.

My brain was clear last checkup, I'm due again in March 9th for my next checkup, but of course I"m always worried. Before my last checkup my head was just feeling achy (as if you have a cold, etc), and it still always feels like that, even now, the spot where I had my giant tumor removed from just aches (like as if someone is pushing on the spot there), but I guess I have to live with that now always having a weird feeling there.

Best of luck on the next scan and I hope it's good news for the Brain when you go back and it shows shrinkage of the tumors!