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Any suggestions for severe headaches/nausea after G Knife ?
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Any suggestions for severe headaches/nausea after G Knife ?

› Forums › General Melanoma Community › Any suggestions for severe headaches/nausea after G Knife ?

  • Post
    • December 16, 2011 at 2:57 am
    AlisonC
    Participant

      I was reading Lisa's post and wishing for the same for my friend David here in Singapore.  He is only 8 weeks post diagnosis of 3 brain mets (almost 3 years post stage IIIA) and he's having a really rough time.  He had a craniotomy for 2 tumours on Nov 1st and Gamma Knife on a 3rd a week or so later.  Since then he's had an awful time with bleeding, raised intracranial pressure and nausea/vomiting that have seen him re-admitted twice (and back at the hospital more than that).  It's brutal because I know he wants a great Christmas with his family and 3 you

      I was reading Lisa's post and wishing for the same for my friend David here in Singapore.  He is only 8 weeks post diagnosis of 3 brain mets (almost 3 years post stage IIIA) and he's having a really rough time.  He had a craniotomy for 2 tumours on Nov 1st and Gamma Knife on a 3rd a week or so later.  Since then he's had an awful time with bleeding, raised intracranial pressure and nausea/vomiting that have seen him re-admitted twice (and back at the hospital more than that).  It's brutal because I know he wants a great Christmas with his family and 3 young children. 

      We have a satellite clinic of Johns Hopkins here in Singapore (which is where he's being treated) and he gets additional opinions from the Mayo Clinic.  Does anyone have any additional advice (even lifestyle, things to eat/drink that help) that might help him get through the pain and nausea ? and sleeplessness ?    They've done repeated scans and so far he remains NED (not counting the gamma knifed tumour which obviously is still visible) but he's just suffering such a lot.

      Any advice appreciated and I'll pass it on….

      AlisonC

      StageIIIB

      NED since 2001

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    • Replies
        • December 16, 2011 at 4:12 am
        lhaley
        Participant

          I've also had problems like David.  They have done my mri to show that it has shrunk and the bleeding stopped within two weeks.

          My problem is they can't get me off of the steroids.  They started me because of the bleeding right away. I was at the ERM room within 2 weeks and the mri said that I was stable.  Of course they weren't sure what was going on yet so they didn't take me off of the steroids.  Now we realize that (and I had my own opinions) the issue was the steroids.  Last week while doing the final stage of getting them off I did something (again my opinion) that I wanted to get off of these quickly.  We have a special family this coming weekend and wanted to be off of the steroids.  By Monday the headache was so bad and then I also couldn't walk.  Now I have to start weaning all over again.   I have gone to an endocronologist and they want to test the cortisal levels. The only problem is they can't test the levels until the steroids are gone – 2 days later.  

          I'm assuming with the bleeding that David is on the steroids also. 

          I do hope he is feeling better and the Doctors will help him.  Here I have been so happy that I saw good news about shrinkage and necrosis, just still can't feel better. This weekend is my granddaughter's 2nd birthday and my sons graduation for his MBA. My husband did not want us to go there.  I'm not allowing this to stop, just wish I wasn't having to travel almost 4 hours.

          Best wishes,

          Linda

          • December 16, 2011 at 4:12 am
          lhaley
          Participant

            I've also had problems like David.  They have done my mri to show that it has shrunk and the bleeding stopped within two weeks.

            My problem is they can't get me off of the steroids.  They started me because of the bleeding right away. I was at the ERM room within 2 weeks and the mri said that I was stable.  Of course they weren't sure what was going on yet so they didn't take me off of the steroids.  Now we realize that (and I had my own opinions) the issue was the steroids.  Last week while doing the final stage of getting them off I did something (again my opinion) that I wanted to get off of these quickly.  We have a special family this coming weekend and wanted to be off of the steroids.  By Monday the headache was so bad and then I also couldn't walk.  Now I have to start weaning all over again.   I have gone to an endocronologist and they want to test the cortisal levels. The only problem is they can't test the levels until the steroids are gone – 2 days later.  

            I'm assuming with the bleeding that David is on the steroids also. 

            I do hope he is feeling better and the Doctors will help him.  Here I have been so happy that I saw good news about shrinkage and necrosis, just still can't feel better. This weekend is my granddaughter's 2nd birthday and my sons graduation for his MBA. My husband did not want us to go there.  I'm not allowing this to stop, just wish I wasn't having to travel almost 4 hours.

            Best wishes,

            Linda

            • December 16, 2011 at 4:12 am
            lhaley
            Participant

              I've also had problems like David.  They have done my mri to show that it has shrunk and the bleeding stopped within two weeks.

              My problem is they can't get me off of the steroids.  They started me because of the bleeding right away. I was at the ERM room within 2 weeks and the mri said that I was stable.  Of course they weren't sure what was going on yet so they didn't take me off of the steroids.  Now we realize that (and I had my own opinions) the issue was the steroids.  Last week while doing the final stage of getting them off I did something (again my opinion) that I wanted to get off of these quickly.  We have a special family this coming weekend and wanted to be off of the steroids.  By Monday the headache was so bad and then I also couldn't walk.  Now I have to start weaning all over again.   I have gone to an endocronologist and they want to test the cortisal levels. The only problem is they can't test the levels until the steroids are gone – 2 days later.  

              I'm assuming with the bleeding that David is on the steroids also. 

              I do hope he is feeling better and the Doctors will help him.  Here I have been so happy that I saw good news about shrinkage and necrosis, just still can't feel better. This weekend is my granddaughter's 2nd birthday and my sons graduation for his MBA. My husband did not want us to go there.  I'm not allowing this to stop, just wish I wasn't having to travel almost 4 hours.

              Best wishes,

              Linda

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