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Brain surgery! Help please!

Forums General Melanoma Community Brain surgery! Help please!

  • Post
    Sharyn
    Participant

    Hi MPIP family,

    I was scheduled for SRS on Monday for 2 tumors. However I just got a call from my Dr to say that one of the tumors has grown from 1cm to 4.5cm in 2 months, so it will have to be removed surgically. The other one will be done with SRS. If anone has any experience with brain surgery, could you please share it with me? I am really scared!

    Hugs

    Sharyn, Stage IV

    Hi MPIP family,

    I was scheduled for SRS on Monday for 2 tumors. However I just got a call from my Dr to say that one of the tumors has grown from 1cm to 4.5cm in 2 months, so it will have to be removed surgically. The other one will be done with SRS. If anone has any experience with brain surgery, could you please share it with me? I am really scared!

    Hugs

    Sharyn, Stage IV

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Viewing 31 reply threads
  • Replies
      Jerry from Cape Cod
      Participant

      Sharyn,

      Check out Nic from OZ and Jag's posts.  Both have too much experience with brain surgery but they are both great sources of information.

      Hugs,

      Jerry from Cape Cod

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      Jerry from Cape Cod
      Participant

      Sharyn,

      Check out Nic from OZ and Jag's posts.  Both have too much experience with brain surgery but they are both great sources of information.

      Hugs,

      Jerry from Cape Cod

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      James from Sydney
      Participant

      Hi Sharyn

      If they have suggested surgery it must be in a position that is accessible, Michael had a 5cm Met that bled but the Operation was straight forward and recovery quick, its surprising even when he had a 2nd Met one month later he was out of Hospital in 2 days!  As stated Nic and John have had multiple Ops. with no probs.

      I thought there would be a massive incision but no they generally  do like a little trapdoor. Good luck with it and in my opinion Surgery is the best option.

      best wishes

      James

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      James from Sydney
      Participant

      Hi Sharyn

      If they have suggested surgery it must be in a position that is accessible, Michael had a 5cm Met that bled but the Operation was straight forward and recovery quick, its surprising even when he had a 2nd Met one month later he was out of Hospital in 2 days!  As stated Nic and John have had multiple Ops. with no probs.

      I thought there would be a massive incision but no they generally  do like a little trapdoor. Good luck with it and in my opinion Surgery is the best option.

      best wishes

      James

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      ValinMtl
      Participant

      Oh no.  I'm so sorry to hear about this latest situation.  Sharyn,  if I can do anything to help in whatever way just give me a ring.  Val  xx

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        Vermont_Donna
        Participant

        Hi Sharyn,

        So sorry to hear of this turn of events…darn melanoma!!! Good luck with your surgery, I am sure you will sail right through it and get that nasty tumor out of there!

        Thinking of you,

        Vermont_Donna, stage 3a

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        Vermont_Donna
        Participant

        Hi Sharyn,

        So sorry to hear of this turn of events…darn melanoma!!! Good luck with your surgery, I am sure you will sail right through it and get that nasty tumor out of there!

        Thinking of you,

        Vermont_Donna, stage 3a

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      ValinMtl
      Participant

      Oh no.  I'm so sorry to hear about this latest situation.  Sharyn,  if I can do anything to help in whatever way just give me a ring.  Val  xx

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      Carmon in NM
      Participant

      Hi Sharyn – I had emergency brain surgery last June for a 2×3 cm tumor that had started bleeding into my brain. I didn't have to go through the advance fear because I was unconscious prior to the surgery but I woke up in recovery making jokes!

      The tumor that was bleeding was on the right temporal lobe. I have a scar about 5 inches long that runs from above my temple over and past my ear. I had the surgery on Friday night and was moved out of the ICU Saturday morning and given the option of going home on Sunday. I was convinced they were trying to poison me with the hospital food so I opted to go home even though my husband was a bit afraid of that choice.

      Don't try to be a hero about pain medication! Any surgery involving bones will have a lot of pain for the first 48 hours so take whatever medication you need to stay ahead of it knowing it will get better really fast! About five days after surgery, I was up and walking slowly and carefully out to sit next to the fence where my horses are, my best medicine! By then I really wasn't experiencing any pain at all from the surgery.

      Depending on where the tumor is located, you may experience an increase in symptoms for a while from swelling so don't let it worry you! You also may experience some new ones like things tasting weird, visual problems, balance problems and so on. Just be sure to ask the neurologist what to expect from where the tumor is located.

      Be prepared to feel incredibly tired. I slept more than I was awake for the first two weeks and my onc told me that was the best thing for me since the brain does the majority of healing during deep sleep. Just rest and eat as nutritionally as possible and be prepared to be impressed at how amazingly the brain can recover from trauma!

      My symptoms gradually disappeared over about a three month period. In my case, some were permanant, mostly vision and hearing problems and some language comprehension but that's a small price to pay! In my case, two tumors were treated one month after the craniotomy with gamma knife surgery and my 3 month and 6 month brain MRIs were clear of new tumors and the two old ones are considered to be just scar tissue now.

      I know it's easy for me to say but try not to be afraid! If I were told I had to go back in for more brain surgery, I would not be any more afraid now that I've experienced it than I would of any other surgery. In fact, in some ways the recovery was easier than some of my other surgeries over the last two years.

      What I remember more than anything else was that I laughed more and felt more uninhibited joy those first couple of months after brain surgery than I've ever felt in my life. Most of that was just pure gratitude that we get to experience the advances that have been made in recent years for treating brain mets and mostly, it was shear joy at being alive! I hope that is what you wake up to in recovery too, absolute joy at being alive! My best wishes and prayers to you for as easy a recovery as I had…Carmon

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      Carmon in NM
      Participant

      Hi Sharyn – I had emergency brain surgery last June for a 2×3 cm tumor that had started bleeding into my brain. I didn't have to go through the advance fear because I was unconscious prior to the surgery but I woke up in recovery making jokes!

      The tumor that was bleeding was on the right temporal lobe. I have a scar about 5 inches long that runs from above my temple over and past my ear. I had the surgery on Friday night and was moved out of the ICU Saturday morning and given the option of going home on Sunday. I was convinced they were trying to poison me with the hospital food so I opted to go home even though my husband was a bit afraid of that choice.

      Don't try to be a hero about pain medication! Any surgery involving bones will have a lot of pain for the first 48 hours so take whatever medication you need to stay ahead of it knowing it will get better really fast! About five days after surgery, I was up and walking slowly and carefully out to sit next to the fence where my horses are, my best medicine! By then I really wasn't experiencing any pain at all from the surgery.

      Depending on where the tumor is located, you may experience an increase in symptoms for a while from swelling so don't let it worry you! You also may experience some new ones like things tasting weird, visual problems, balance problems and so on. Just be sure to ask the neurologist what to expect from where the tumor is located.

      Be prepared to feel incredibly tired. I slept more than I was awake for the first two weeks and my onc told me that was the best thing for me since the brain does the majority of healing during deep sleep. Just rest and eat as nutritionally as possible and be prepared to be impressed at how amazingly the brain can recover from trauma!

      My symptoms gradually disappeared over about a three month period. In my case, some were permanant, mostly vision and hearing problems and some language comprehension but that's a small price to pay! In my case, two tumors were treated one month after the craniotomy with gamma knife surgery and my 3 month and 6 month brain MRIs were clear of new tumors and the two old ones are considered to be just scar tissue now.

      I know it's easy for me to say but try not to be afraid! If I were told I had to go back in for more brain surgery, I would not be any more afraid now that I've experienced it than I would of any other surgery. In fact, in some ways the recovery was easier than some of my other surgeries over the last two years.

      What I remember more than anything else was that I laughed more and felt more uninhibited joy those first couple of months after brain surgery than I've ever felt in my life. Most of that was just pure gratitude that we get to experience the advances that have been made in recent years for treating brain mets and mostly, it was shear joy at being alive! I hope that is what you wake up to in recovery too, absolute joy at being alive! My best wishes and prayers to you for as easy a recovery as I had…Carmon

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      Bonnie Lea
      Participant

      Dearest Sharyn:   My prayers are with you as always.  John and Nic can talk you through this, they both have come through thhis procedure, and yes I know everyone is different, but sometimes having someone who knows sort of what you will be facing, someone who you know…is easier.

       

      My love to you all. 

      Bonnie and Bob and Jennifer too!

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      Bonnie Lea
      Participant

      Dearest Sharyn:   My prayers are with you as always.  John and Nic can talk you through this, they both have come through thhis procedure, and yes I know everyone is different, but sometimes having someone who knows sort of what you will be facing, someone who you know…is easier.

       

      My love to you all. 

      Bonnie and Bob and Jennifer too!

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      Bonnie Lea
      Participant

      Dearest Sharyn:   My prayers are with you as always.  John and Nic can talk you through this, they both have come through thhis procedure, and yes I know everyone is different, but sometimes having someone who knows sort of what you will be facing, someone who you know…is easier.

       

      My love to you all. 

      Bonnie and Bob and Jennifer too!

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      Bonnie Lea
      Participant

      Dearest Sharyn:   My prayers are with you as always.  John and Nic can talk you through this, they both have come through thhis procedure, and yes I know everyone is different, but sometimes having someone who knows sort of what you will be facing, someone who you know…is easier.

       

      My love to you all. 

      Bonnie and Bob and Jennifer too!

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      lhaley
      Participant

      Sharyn,

      I know this was not what you planned on. You have had such a positive attitude during this journey, I hate the thought that you are really rattled by this. Take those that have done so well with surgery as your guide post that you too can do this!!  I hope they can fit you in very quickly to alleviate the anxiety.

      We are all pulling for you and your remarkable strength!

      Linda

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      lhaley
      Participant

      Sharyn,

      I know this was not what you planned on. You have had such a positive attitude during this journey, I hate the thought that you are really rattled by this. Take those that have done so well with surgery as your guide post that you too can do this!!  I hope they can fit you in very quickly to alleviate the anxiety.

      We are all pulling for you and your remarkable strength!

      Linda

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      bcl
      Participant

      Hi Sharyn, Nic is currently recovering from surgery so I will give you a link to her recent advice to Katy about craniotomy surgery. (Nic just had her eighth operation, sounds great and is clamoring for food and coffee at the moment:) 

      Good luck Sharyn, I hope you will find this procedure will be easier than it first sounds.

      http://www.melanoma.org/community/mpip-melanoma-patients-information-page/craniotomy-comin-down-pike-advice#comment-8536

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      bcl
      Participant

      Hi Sharyn, Nic is currently recovering from surgery so I will give you a link to her recent advice to Katy about craniotomy surgery. (Nic just had her eighth operation, sounds great and is clamoring for food and coffee at the moment:) 

      Good luck Sharyn, I hope you will find this procedure will be easier than it first sounds.

      http://www.melanoma.org/community/mpip-melanoma-patients-information-page/craniotomy-comin-down-pike-advice#comment-8536

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      Carole K
      Participant

      HI sharyn,

      I am so so sorry for what you are going through. I know how hard this is for you.  Hang in …Keep telling yourself  .  I CAN DO THIS..  EVERYTHING IS GOING TO BE OK.   

      I also had to have a craniotomy. I went in for Gamma Knife and my tumor had burst. Sharyn, I was devastated. I had so hoped to have Gamma Knife.  My doctors had wanted to do the surgery but I had said no in the begining.  For whatever reason,  GK was not in the cards for me.

      I had the craniotomy the next day…. tumor was behind my left occipital lobe.  Sharyn, I have to say after the surgery was easy. In fact initially was to stay in the hospital 1 week and the next day my doctor asked if I was ready to go home..  My recovery at home went well except I did not like what the steroids did.  I ate like a horse and couldn't sleep but I was EXHAUSTED.  The only other issue I had was with the meds and which to take when. My daughter set her alarm to make sure I took the right ones. I was like a zombie because of the steroids. 

      I know it's frightening..  Try to take a deep breath and know you are in good hands and you will be up the next day.  I had my srugery Jan 30th and was driving April 1st.  Just think about going to your special home that you love spending time with your friends and family.  When is your surgery? If I am free I will come up to be with you if you need me.   Sending you big hugs, strength and lots of love Lady.  You are amazing.

      Love and Light

      Carole

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      Carole K
      Participant

      HI sharyn,

      I am so so sorry for what you are going through. I know how hard this is for you.  Hang in …Keep telling yourself  .  I CAN DO THIS..  EVERYTHING IS GOING TO BE OK.   

      I also had to have a craniotomy. I went in for Gamma Knife and my tumor had burst. Sharyn, I was devastated. I had so hoped to have Gamma Knife.  My doctors had wanted to do the surgery but I had said no in the begining.  For whatever reason,  GK was not in the cards for me.

      I had the craniotomy the next day…. tumor was behind my left occipital lobe.  Sharyn, I have to say after the surgery was easy. In fact initially was to stay in the hospital 1 week and the next day my doctor asked if I was ready to go home..  My recovery at home went well except I did not like what the steroids did.  I ate like a horse and couldn't sleep but I was EXHAUSTED.  The only other issue I had was with the meds and which to take when. My daughter set her alarm to make sure I took the right ones. I was like a zombie because of the steroids. 

      I know it's frightening..  Try to take a deep breath and know you are in good hands and you will be up the next day.  I had my srugery Jan 30th and was driving April 1st.  Just think about going to your special home that you love spending time with your friends and family.  When is your surgery? If I am free I will come up to be with you if you need me.   Sending you big hugs, strength and lots of love Lady.  You are amazing.

      Love and Light

      Carole

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      glewis923
      Participant

      Best of luck, I'm sure you'll be fine !    If it's Friday afternoon, I'll be getting 2 of my 13 and counting brain lesions "burned' Out.  So, let's be thinking of each other!   I really think you'll be okay.  

      Goodnight, Grady &Family.

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      glewis923
      Participant

      Best of luck, I'm sure you'll be fine !    If it's Friday afternoon, I'll be getting 2 of my 13 and counting brain lesions "burned' Out.  So, let's be thinking of each other!   I really think you'll be okay.  

      Goodnight, Grady &Family.

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      jag
      Participant

      Sharyn,

      I'm sorry that you are going through this.  My first brain surgery, I felt like I was planning my own plane crash, very freaked out.   have faith that your body will heal and that you will think just as clearly as before if not more so.(I don't know, I just feel like I have to be extra careful to not make mistakes so that people don't start second guessing me)   Most importantly be sure that you have a good neurosurgeon.

      Good luck and God Bless.

      John

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      jag
      Participant

      Sharyn,

      I'm sorry that you are going through this.  My first brain surgery, I felt like I was planning my own plane crash, very freaked out.   have faith that your body will heal and that you will think just as clearly as before if not more so.(I don't know, I just feel like I have to be extra careful to not make mistakes so that people don't start second guessing me)   Most importantly be sure that you have a good neurosurgeon.

      Good luck and God Bless.

      John

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      KatyWI
      Participant

      Sharon,

      Please don't feel scared!  I had craniotomy on Tuesday – I came home Thursday – today's only Friday!  Every surgery is different; I think I am definitely on the leading edge of how easy it can be – BUT it is definitely not as scary as I thought.  All I did, the entire time I was in the hospital, was think, "boy, this is a lot easier than IL-2!"  Frankly, it is easier than my WLE and my LND way back in 2001.  And on top of it, some of my doctors believe that surgical removal is superior in outcome to SRS.  You're likely to do just fine – more than fine.  Email any time – you can find my contact info on my profile.

      Big hugs,

      KatyWI

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      KatyWI
      Participant

      Sharon,

      Please don't feel scared!  I had craniotomy on Tuesday – I came home Thursday – today's only Friday!  Every surgery is different; I think I am definitely on the leading edge of how easy it can be – BUT it is definitely not as scary as I thought.  All I did, the entire time I was in the hospital, was think, "boy, this is a lot easier than IL-2!"  Frankly, it is easier than my WLE and my LND way back in 2001.  And on top of it, some of my doctors believe that surgical removal is superior in outcome to SRS.  You're likely to do just fine – more than fine.  Email any time – you can find my contact info on my profile.

      Big hugs,

      KatyWI

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      Suzan AB
      Participant

      Good Luck Sharyn!  Thinkin of you and sending healing prayers.

      Suzan AB

      Stage IV with lung F*&kin nodes

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      Suzan AB
      Participant

      Good Luck Sharyn!  Thinkin of you and sending healing prayers.

      Suzan AB

      Stage IV with lung F*&kin nodes

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      Sharyn
      Participant

      Thank you all so much for such wonderful advice and words of encouragement. I have to admit that I was quite scared last night. But after reading about all your experiences with craniotomies, I feel considerably less fearful, and I realize this is just another bump in the road. I learned a lot from you all last night and today, and for that I am hugely grateful!

      I will still go to Montreal for Monday as planned to do SRS on one smaller tumor, but the wheels are in motion to have the craniotomy done on the larger one, and doing it here in Newfoundland very soon. That's a huge relief!  I don't know how this is going to affect my ipi treatment, but I hope I can continue on schedule. I'll update you when I get more information.

      Thank you all once again. What a fabulous bunch you are!

      Hugs

      Sharyn, Stage IV 

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      Sharyn
      Participant

      Thank you all so much for such wonderful advice and words of encouragement. I have to admit that I was quite scared last night. But after reading about all your experiences with craniotomies, I feel considerably less fearful, and I realize this is just another bump in the road. I learned a lot from you all last night and today, and for that I am hugely grateful!

      I will still go to Montreal for Monday as planned to do SRS on one smaller tumor, but the wheels are in motion to have the craniotomy done on the larger one, and doing it here in Newfoundland very soon. That's a huge relief!  I don't know how this is going to affect my ipi treatment, but I hope I can continue on schedule. I'll update you when I get more information.

      Thank you all once again. What a fabulous bunch you are!

      Hugs

      Sharyn, Stage IV 

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        NicOz
        Participant
        Hi Sharyn- had browser trouble & couldn’t log in to reply. Sorry ur facing the prospect of the surgery, but as many have assured u (sorry for SMS speak but using phone) it is a very do-able procedure and quite minimal in terms of pain as opposed to many other surgeries. Had another double 2 days ago and am already starting to wean off the steroids & not requiring pain relief for my head at all. Currently hav some pain in relation to being positioned face down but being like that for 8 hours and not
        moving just put some pressure where am not used to it. All in all, I feel fantastic!
        Up and showered next morning. Most frustration comes from having to do things at
        THEIR speed- not mine :) patience is not my strong suit!
        I think u will be pleasantly surprised at how smoothly it will go for you. The fear of the unknown is worse than the reality. Anyhoo, must dash before phone goes flat. Feel free to email me- will be home tomorrow.
        Have no doubt u will handle it like a trooper! :)

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        NicOz
        Participant
        Hi Sharyn- had browser trouble & couldn’t log in to reply. Sorry ur facing the prospect of the surgery, but as many have assured u (sorry for SMS speak but using phone) it is a very do-able procedure and quite minimal in terms of pain as opposed to many other surgeries. Had another double 2 days ago and am already starting to wean off the steroids & not requiring pain relief for my head at all. Currently hav some pain in relation to being positioned face down but being like that for 8 hours and not
        moving just put some pressure where am not used to it. All in all, I feel fantastic!
        Up and showered next morning. Most frustration comes from having to do things at
        THEIR speed- not mine :) patience is not my strong suit!
        I think u will be pleasantly surprised at how smoothly it will go for you. The fear of the unknown is worse than the reality. Anyhoo, must dash before phone goes flat. Feel free to email me- will be home tomorrow.
        Have no doubt u will handle it like a trooper! :)

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      JoanR
      Participant

      My dear Newfie !!   I ,along with all your family here, am so sad you are facing another hurdle. I scrolled down to see who had responded and was so pleased to see that Carole had. I have met Carole 2ice and after what she went through with her brain mets and how she is today is remarkable. And she had her surgery 10 years ago, so many advancenments have been made since then. You remind me of Carole and I expect your results will be too. This disease is not fair, and certainly you have had your share of setbacks. You have been fortunate to have had continuous care and monitoring which gives you a leg up when there have been changes..you are unique in the Canadian Melanoma scene…My love to you and Jim…thanks for thinking of us and posting..and we are all here for you……BIG HUGS back to you Joan

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      JoanR
      Participant

      My dear Newfie !!   I ,along with all your family here, am so sad you are facing another hurdle. I scrolled down to see who had responded and was so pleased to see that Carole had. I have met Carole 2ice and after what she went through with her brain mets and how she is today is remarkable. And she had her surgery 10 years ago, so many advancenments have been made since then. You remind me of Carole and I expect your results will be too. This disease is not fair, and certainly you have had your share of setbacks. You have been fortunate to have had continuous care and monitoring which gives you a leg up when there have been changes..you are unique in the Canadian Melanoma scene…My love to you and Jim…thanks for thinking of us and posting..and we are all here for you……BIG HUGS back to you Joan

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      Terra
      Participant

      I'm sorry no advice but man thoughs and prayers that the surgery goes well.

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      Terra
      Participant

      I'm sorry no advice but man thoughs and prayers that the surgery goes well.

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