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Brain Edema Questions

Forums General Melanoma Community Brain Edema Questions

  • Post
    Lisa13
    Participant

      Last November, I had gamma knife on a 2.5cm brain mets.   In the last 2 weeks, I've had definate symptoms that are part of the edama.  I sometimes forget words briefly and my eyesite in one eye is a little weirds.  I have a brain mri in 2 weeks which will be 2 months after my last gamma knife. What symtoms of edema have you experienced?  What can you do in regards to edema? Linda – I know how muc you know about this stuff 🙂

      Lisa

      Last November, I had gamma knife on a 2.5cm brain mets.   In the last 2 weeks, I've had definate symptoms that are part of the edama.  I sometimes forget words briefly and my eyesite in one eye is a little weirds.  I have a brain mri in 2 weeks which will be 2 months after my last gamma knife. What symtoms of edema have you experienced?  What can you do in regards to edema? Linda – I know how muc you know about this stuff 🙂

      Lisa

    Viewing 5 reply threads
    • Replies
        lhaley
        Participant

          Lisa,

          I've been concerned that we haven't heard from you.   I had a few signs that showed problems that ended up being the edema.  I was weaning the steroids when I started getting some pains at the top of my head (will explain that one in a moment) that made me feel as if there was huge pressure,  Everyonce and awhile I would loose the feeling on my entire side of my body (this would quickly go away when I would walk around), and most of all I felt as if colors were shooting out of my eyes and saw doubles – that's the day I got an MRI and we saw the edema, at that point the Edema was everywhere in the brain.  They put me from 1 mg a day of steroids to 4 a day. 2 days later it had not helped and they put me to 8 mgs a day.  2 weeks later they reduced me to the 4 mgs a day and 10 days later I had the crainectomy.

          The top of the pain – For right now my MRI which I had on Monday is CLEAR!!!!!   No edema.  They have discovered that my body is hypersensitive (a medical term was given but I didn't pick up what it was) due to being on the steroids.  Evidently while on the steroids I could not tell if this was inside the skull or outside. I kept even feeling as if my hair roots were hurting.  I have been off of the steroids since March 2nd and still having side effects.  I am hypersensitive all over my body wherever I have ever hurt.  The top of the head was where 2.5 years ago I dropped a shredder paper motor on the top of my head while we were packing up the house.  Several of the pains that I have, and ones that I would tell them about pains in the back of the heads are still there (they come and go) and now I can tell these pains are outside of the skull (this was from a concussion)!    I even have a place on the bottom of my foot that hurts off and on where I had surgery in 1963!   

          That was all incidental to what info you need though. My point is that the vision was the most obvious point that there was a problem for edema, at least for me. 

          Having issues with words was where my tumor was so for me the problems was where the tumor was, not the edema. I'm still having problems with words and I also am shaking (some days more than others). These problems could be from the left over side effects from the steroids. I'm not thinking of damage during the radiation or surgery because these problems come and go. 

          Your appointment is in 2 weeks but you might want to either call or just show up at the emergency room concerned.  I was given the option of waiting off the edema with the higher steroids (said could be 3 months to many months) or the surgery. The surgery was not a problem for me, the problem was rebuilding my body to get over how the steroids had destroyed my body.  I am much stronger now and back to driving. Now the hypersensitivity has to leave along with the shakiness.  

          Been thinking of you and hope this can be dealt with easily,

          Linda

            Lisa13
            Participant

              Hi Linda,

              Thanks for sending me a message.  It's good to hear that everything is going great with the craniotomy.  I'm hoping to hear that I'm as lucky as you – NED would always be sweet. 

              My MRI is in 2 weeks after 2 months of gamma knife. I've been getting them done every 2 months so that I don't catch anything too late.  Both my Dr's thing it's edema and don't mind waiting.  I don't get these problems everyday, but its just bizaare to not remember words.  The ear and eye is on the same side as that 2.5cm I had removed last noveber.   All these things starting happening right after my second ipi reinjuctionn (now going on my 3rd injection), so let's hope it does something for the brain mets.  

              I feel great – still running around now with my daugtjter and feeling as though nothing is happening.  Besides the brain mets, everything remains the same and still doing okay after a year later.  The fact that I can do anything I want, makes me believe in good things.

              Lisa

              Lisa13
              Participant

                Hi Linda,

                Thanks for sending me a message.  It's good to hear that everything is going great with the craniotomy.  I'm hoping to hear that I'm as lucky as you – NED would always be sweet. 

                My MRI is in 2 weeks after 2 months of gamma knife. I've been getting them done every 2 months so that I don't catch anything too late.  Both my Dr's thing it's edema and don't mind waiting.  I don't get these problems everyday, but its just bizaare to not remember words.  The ear and eye is on the same side as that 2.5cm I had removed last noveber.   All these things starting happening right after my second ipi reinjuctionn (now going on my 3rd injection), so let's hope it does something for the brain mets.  

                I feel great – still running around now with my daugtjter and feeling as though nothing is happening.  Besides the brain mets, everything remains the same and still doing okay after a year later.  The fact that I can do anything I want, makes me believe in good things.

                Lisa

                Lisa13
                Participant

                  Hi Linda,

                  Thanks for sending me a message.  It's good to hear that everything is going great with the craniotomy.  I'm hoping to hear that I'm as lucky as you – NED would always be sweet. 

                  My MRI is in 2 weeks after 2 months of gamma knife. I've been getting them done every 2 months so that I don't catch anything too late.  Both my Dr's thing it's edema and don't mind waiting.  I don't get these problems everyday, but its just bizaare to not remember words.  The ear and eye is on the same side as that 2.5cm I had removed last noveber.   All these things starting happening right after my second ipi reinjuctionn (now going on my 3rd injection), so let's hope it does something for the brain mets.  

                  I feel great – still running around now with my daugtjter and feeling as though nothing is happening.  Besides the brain mets, everything remains the same and still doing okay after a year later.  The fact that I can do anything I want, makes me believe in good things.

                  Lisa

                lhaley
                Participant

                  Lisa,

                  I've been concerned that we haven't heard from you.   I had a few signs that showed problems that ended up being the edema.  I was weaning the steroids when I started getting some pains at the top of my head (will explain that one in a moment) that made me feel as if there was huge pressure,  Everyonce and awhile I would loose the feeling on my entire side of my body (this would quickly go away when I would walk around), and most of all I felt as if colors were shooting out of my eyes and saw doubles – that's the day I got an MRI and we saw the edema, at that point the Edema was everywhere in the brain.  They put me from 1 mg a day of steroids to 4 a day. 2 days later it had not helped and they put me to 8 mgs a day.  2 weeks later they reduced me to the 4 mgs a day and 10 days later I had the crainectomy.

                  The top of the pain – For right now my MRI which I had on Monday is CLEAR!!!!!   No edema.  They have discovered that my body is hypersensitive (a medical term was given but I didn't pick up what it was) due to being on the steroids.  Evidently while on the steroids I could not tell if this was inside the skull or outside. I kept even feeling as if my hair roots were hurting.  I have been off of the steroids since March 2nd and still having side effects.  I am hypersensitive all over my body wherever I have ever hurt.  The top of the head was where 2.5 years ago I dropped a shredder paper motor on the top of my head while we were packing up the house.  Several of the pains that I have, and ones that I would tell them about pains in the back of the heads are still there (they come and go) and now I can tell these pains are outside of the skull (this was from a concussion)!    I even have a place on the bottom of my foot that hurts off and on where I had surgery in 1963!   

                  That was all incidental to what info you need though. My point is that the vision was the most obvious point that there was a problem for edema, at least for me. 

                  Having issues with words was where my tumor was so for me the problems was where the tumor was, not the edema. I'm still having problems with words and I also am shaking (some days more than others). These problems could be from the left over side effects from the steroids. I'm not thinking of damage during the radiation or surgery because these problems come and go. 

                  Your appointment is in 2 weeks but you might want to either call or just show up at the emergency room concerned.  I was given the option of waiting off the edema with the higher steroids (said could be 3 months to many months) or the surgery. The surgery was not a problem for me, the problem was rebuilding my body to get over how the steroids had destroyed my body.  I am much stronger now and back to driving. Now the hypersensitivity has to leave along with the shakiness.  

                  Been thinking of you and hope this can be dealt with easily,

                  Linda

                  lhaley
                  Participant

                    Lisa,

                    I've been concerned that we haven't heard from you.   I had a few signs that showed problems that ended up being the edema.  I was weaning the steroids when I started getting some pains at the top of my head (will explain that one in a moment) that made me feel as if there was huge pressure,  Everyonce and awhile I would loose the feeling on my entire side of my body (this would quickly go away when I would walk around), and most of all I felt as if colors were shooting out of my eyes and saw doubles – that's the day I got an MRI and we saw the edema, at that point the Edema was everywhere in the brain.  They put me from 1 mg a day of steroids to 4 a day. 2 days later it had not helped and they put me to 8 mgs a day.  2 weeks later they reduced me to the 4 mgs a day and 10 days later I had the crainectomy.

                    The top of the pain – For right now my MRI which I had on Monday is CLEAR!!!!!   No edema.  They have discovered that my body is hypersensitive (a medical term was given but I didn't pick up what it was) due to being on the steroids.  Evidently while on the steroids I could not tell if this was inside the skull or outside. I kept even feeling as if my hair roots were hurting.  I have been off of the steroids since March 2nd and still having side effects.  I am hypersensitive all over my body wherever I have ever hurt.  The top of the head was where 2.5 years ago I dropped a shredder paper motor on the top of my head while we were packing up the house.  Several of the pains that I have, and ones that I would tell them about pains in the back of the heads are still there (they come and go) and now I can tell these pains are outside of the skull (this was from a concussion)!    I even have a place on the bottom of my foot that hurts off and on where I had surgery in 1963!   

                    That was all incidental to what info you need though. My point is that the vision was the most obvious point that there was a problem for edema, at least for me. 

                    Having issues with words was where my tumor was so for me the problems was where the tumor was, not the edema. I'm still having problems with words and I also am shaking (some days more than others). These problems could be from the left over side effects from the steroids. I'm not thinking of damage during the radiation or surgery because these problems come and go. 

                    Your appointment is in 2 weeks but you might want to either call or just show up at the emergency room concerned.  I was given the option of waiting off the edema with the higher steroids (said could be 3 months to many months) or the surgery. The surgery was not a problem for me, the problem was rebuilding my body to get over how the steroids had destroyed my body.  I am much stronger now and back to driving. Now the hypersensitivity has to leave along with the shakiness.  

                    Been thinking of you and hope this can be dealt with easily,

                    Linda

                    KRob
                    Participant

                      Hi, Lisa.

                      I had symptoms of brain swelling up to 2 yrs after my 3rd brain lesion was gamma knifed. Finally, after trying 4 + mos of steroids, my neurologist agreed it was time to perform a craniotomy to remove the radiation damaged tissue. Once that was done and I was weaned off steroids, the symptoms went away.

                      Hope you feel better soon…it's so frustrating to be dealing with that.

                      Karen

                        Lisa13
                        Participant

                          Hi Karen,

                          Hearing about your brain mets gives me hope.  The fact that you had 3 5 years ago is pretty amazing!

                          My brain edema has been happening since I statred ipi again.  In 2 weeks, I'll know what's going on and hope I don't have any more.  I've had 3 small mets and 1 larger one which was definately ipi back in the day.  I havn't taken any steroids because I don't want to effect ipi right now, but we'll see how it goes.

                          The edema is frutrating cause it happens on some days. Difficuly reading and writing as well as forgetting words.  I just hope I have no more brain mets for the time being.  My blood work is looking good and has been looking around the normal range, so I really, reakly want this to work again!

                          I'm hoping to be as lucky as you Karen! 

                          Lisa 

                          Lisa13
                          Participant

                            Hi Karen,

                            Hearing about your brain mets gives me hope.  The fact that you had 3 5 years ago is pretty amazing!

                            My brain edema has been happening since I statred ipi again.  In 2 weeks, I'll know what's going on and hope I don't have any more.  I've had 3 small mets and 1 larger one which was definately ipi back in the day.  I havn't taken any steroids because I don't want to effect ipi right now, but we'll see how it goes.

                            The edema is frutrating cause it happens on some days. Difficuly reading and writing as well as forgetting words.  I just hope I have no more brain mets for the time being.  My blood work is looking good and has been looking around the normal range, so I really, reakly want this to work again!

                            I'm hoping to be as lucky as you Karen! 

                            Lisa 

                            Lisa13
                            Participant

                              Hi Karen,

                              Hearing about your brain mets gives me hope.  The fact that you had 3 5 years ago is pretty amazing!

                              My brain edema has been happening since I statred ipi again.  In 2 weeks, I'll know what's going on and hope I don't have any more.  I've had 3 small mets and 1 larger one which was definately ipi back in the day.  I havn't taken any steroids because I don't want to effect ipi right now, but we'll see how it goes.

                              The edema is frutrating cause it happens on some days. Difficuly reading and writing as well as forgetting words.  I just hope I have no more brain mets for the time being.  My blood work is looking good and has been looking around the normal range, so I really, reakly want this to work again!

                              I'm hoping to be as lucky as you Karen! 

                              Lisa 

                            KRob
                            Participant

                              Hi, Lisa.

                              I had symptoms of brain swelling up to 2 yrs after my 3rd brain lesion was gamma knifed. Finally, after trying 4 + mos of steroids, my neurologist agreed it was time to perform a craniotomy to remove the radiation damaged tissue. Once that was done and I was weaned off steroids, the symptoms went away.

                              Hope you feel better soon…it's so frustrating to be dealing with that.

                              Karen

                              KRob
                              Participant

                                Hi, Lisa.

                                I had symptoms of brain swelling up to 2 yrs after my 3rd brain lesion was gamma knifed. Finally, after trying 4 + mos of steroids, my neurologist agreed it was time to perform a craniotomy to remove the radiation damaged tissue. Once that was done and I was weaned off steroids, the symptoms went away.

                                Hope you feel better soon…it's so frustrating to be dealing with that.

                                Karen

                            Viewing 5 reply threads
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