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crainectomy

› Forums › General Melanoma Community › crainectomy

  • Post
    • January 19, 2012 at 1:25 am
    lhaley
    Participant

      I was told about a month or so ago that the tumor was shrinking.  Then edema set in.  Met today with the nuerosurgeon and options are to wait it out on the dex which could take months till the edema gets absorbed.  We agree that I have to get off of these steroids before my immune system is 100% gone.   The issue is the tumor is still there that is deep and the area of speech can be affected.   I've decided that I have to take my chance.   He showed me how there is a cleft to go in through and feels that it will be ok.  If he feels he ca

      I was told about a month or so ago that the tumor was shrinking.  Then edema set in.  Met today with the nuerosurgeon and options are to wait it out on the dex which could take months till the edema gets absorbed.  We agree that I have to get off of these steroids before my immune system is 100% gone.   The issue is the tumor is still there that is deep and the area of speech can be affected.   I've decided that I have to take my chance.   He showed me how there is a cleft to go in through and feels that it will be ok.  If he feels he can't get the entire tumor (after pathology is done again) then they could do a touch up with radiation.

      They say that the amount of edema that I have is not common.  That tells them that I have had an excellent reaction to the radiation and that my immune system is still working.  

      Date is Feb 3rd.  The other option was Feb 2nd but late in the day.  All I could see was I didn't want to be on GroundHog day.  Kept picturing the movie and it keeps going over and over and over……..    Went with the 3rd.

      They are trying to get me a little off of the steroids before the surgery. Maybe I can get a little sleep tonight!

      Linda

    Viewing 8 reply threads
    • Replies
        • January 19, 2012 at 1:45 am
        KellieSue
        Participant
          I’ve been following your story and it seems a little similar to mine. Had a stroke on Nov 15, pretty big bleeding tumor that has shrunk a bit due to radiation but can’t do anything surgery wise right now because its still a bit too big. Hoping it keeps shrinking. Starting to deal with edema( after coming off steroids te first time) and trying to wean off them again. I too am told edema isn’t uncommon in my position. My tumor isn’t so deep as large now. I am wondering if I’ll having this exact discussion with oncologist tomorrow at appt.
          I’m glad you have a date set and hopefully edema will be resolved, sounds like it could start to become a pain in the ass! lol
          Good luck and I’ll be thinking about you. I enjoy reading your caringbridge.
            • January 19, 2012 at 2:02 am
            lhaley
            Participant

              Kellie,

              I hope yours gets small enough so they can operate also!   When I walked into the nuro's office he took one look at me and knew I wanted to do something. 

              This will work for both of us!

              Linda

              • January 19, 2012 at 2:02 am
              lhaley
              Participant

                Kellie,

                I hope yours gets small enough so they can operate also!   When I walked into the nuro's office he took one look at me and knew I wanted to do something. 

                This will work for both of us!

                Linda

                • January 19, 2012 at 2:02 am
                lhaley
                Participant

                  Kellie,

                  I hope yours gets small enough so they can operate also!   When I walked into the nuro's office he took one look at me and knew I wanted to do something. 

                  This will work for both of us!

                  Linda

                • January 19, 2012 at 1:45 am
                KellieSue
                Participant
                  I’ve been following your story and it seems a little similar to mine. Had a stroke on Nov 15, pretty big bleeding tumor that has shrunk a bit due to radiation but can’t do anything surgery wise right now because its still a bit too big. Hoping it keeps shrinking. Starting to deal with edema( after coming off steroids te first time) and trying to wean off them again. I too am told edema isn’t uncommon in my position. My tumor isn’t so deep as large now. I am wondering if I’ll having this exact discussion with oncologist tomorrow at appt.
                  I’m glad you have a date set and hopefully edema will be resolved, sounds like it could start to become a pain in the ass! lol
                  Good luck and I’ll be thinking about you. I enjoy reading your caringbridge.
                  • January 19, 2012 at 1:45 am
                  KellieSue
                  Participant
                    I’ve been following your story and it seems a little similar to mine. Had a stroke on Nov 15, pretty big bleeding tumor that has shrunk a bit due to radiation but can’t do anything surgery wise right now because its still a bit too big. Hoping it keeps shrinking. Starting to deal with edema( after coming off steroids te first time) and trying to wean off them again. I too am told edema isn’t uncommon in my position. My tumor isn’t so deep as large now. I am wondering if I’ll having this exact discussion with oncologist tomorrow at appt.
                    I’m glad you have a date set and hopefully edema will be resolved, sounds like it could start to become a pain in the ass! lol
                    Good luck and I’ll be thinking about you. I enjoy reading your caringbridge.
                    • January 19, 2012 at 4:02 am
                    King
                    Participant

                      Hi Linda,

                      I hope you know that you and your family are in my thoughts and prayers.  There's not much else I can say right now.  I am so sorry that all this is happening to you.  It has to be very frightening.  We're here for you like you've been here for all of us.  (((Linda)))

                      Stay Strong

                      King

                      Stage IV  7/05  Liver mets

                      • January 19, 2012 at 4:02 am
                      King
                      Participant

                        Hi Linda,

                        I hope you know that you and your family are in my thoughts and prayers.  There's not much else I can say right now.  I am so sorry that all this is happening to you.  It has to be very frightening.  We're here for you like you've been here for all of us.  (((Linda)))

                        Stay Strong

                        King

                        Stage IV  7/05  Liver mets

                        • January 19, 2012 at 4:02 am
                        King
                        Participant

                          Hi Linda,

                          I hope you know that you and your family are in my thoughts and prayers.  There's not much else I can say right now.  I am so sorry that all this is happening to you.  It has to be very frightening.  We're here for you like you've been here for all of us.  (((Linda)))

                          Stay Strong

                          King

                          Stage IV  7/05  Liver mets

                          • January 19, 2012 at 9:07 am
                          James from Sydney
                          Participant

                            Hi Linda

                            Sometimes when they go in, it is not as difficult as it looks on scan i hope that its a straight forward one for you as recovery will be quick. Thinking of you.

                            regards

                            James

                              • January 20, 2012 at 11:47 am
                              Vermont_Donna
                              Participant

                                Hi Linda,

                                   I have been thinking of you and am glad that you have a good plan in place. Stay strong and this too you will overcome!

                                hugs,

                                Vermont_Donna, stage 3a, NED

                                • January 20, 2012 at 11:47 am
                                Vermont_Donna
                                Participant

                                  Hi Linda,

                                     I have been thinking of you and am glad that you have a good plan in place. Stay strong and this too you will overcome!

                                  hugs,

                                  Vermont_Donna, stage 3a, NED

                                  • January 20, 2012 at 11:47 am
                                  Vermont_Donna
                                  Participant

                                    Hi Linda,

                                       I have been thinking of you and am glad that you have a good plan in place. Stay strong and this too you will overcome!

                                    hugs,

                                    Vermont_Donna, stage 3a, NED

                                  • January 19, 2012 at 9:07 am
                                  James from Sydney
                                  Participant

                                    Hi Linda

                                    Sometimes when they go in, it is not as difficult as it looks on scan i hope that its a straight forward one for you as recovery will be quick. Thinking of you.

                                    regards

                                    James

                                    • January 19, 2012 at 9:07 am
                                    James from Sydney
                                    Participant

                                      Hi Linda

                                      Sometimes when they go in, it is not as difficult as it looks on scan i hope that its a straight forward one for you as recovery will be quick. Thinking of you.

                                      regards

                                      James

                                  Viewing 8 reply threads
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