› Forums › General Melanoma Community › Craniotomy for Radiation Necrosis Today
- This topic has 39 replies, 11 voices, and was last updated 9 years, 4 months ago by
Brendan.
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- December 3, 2014 at 2:36 pm
Hello friends,
I'll have to fill in the details later, but for those of you who know my recent background dealing with ups and downs from radiation necrosis over the past six months as a result of CyberKnife from almost two years ago, l had a significant decline in left side motor control deficits and impact of Decadron steroid side effects over the past week. After much deliberation, we decided to move forward with a second craniotomy which was moved up from tomorrow to today for simple scheduling reasons. Most of my team of doctors still believe this is necrosis and not recurrent tumor, although there is a possibility it's both, but surgery will get both, regardless. We're hopeful that the physical deficits that have affected the use of my left arm, hand, leg, and foot, will not be permanent and that the powerful effects of prolonged (6+ months) Decadron use will resolve soon as I'm able to taper down after surgery.
I will post more for the group later as there are some lessons to be learned, but wanted to ask you all for your thoughts and prayers today as we await an actual start time and go over this not completely unexpected bump in the road.
Best, Joe
- Replies
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- December 3, 2014 at 4:28 pm
Good luck Joe.
Artie
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- December 3, 2014 at 4:28 pm
Good luck Joe.
Artie
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- December 3, 2014 at 4:28 pm
Good luck Joe.
Artie
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- December 3, 2014 at 9:58 pm
I'm hoping it went well, Joe. Take it easy for now but let us know whenever you feel up to it.
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- December 3, 2014 at 11:47 pm
Joe,
I'm praying that everything went well today. You and your family are in my prayers! Take care and let us know when you can how you are doing. Take care.
Maureen
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- December 3, 2014 at 11:47 pm
Joe,
I'm praying that everything went well today. You and your family are in my prayers! Take care and let us know when you can how you are doing. Take care.
Maureen
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- December 3, 2014 at 11:47 pm
Joe,
I'm praying that everything went well today. You and your family are in my prayers! Take care and let us know when you can how you are doing. Take care.
Maureen
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- December 16, 2014 at 3:32 am
Good evening all, my apologies for not updating sooner, it has been a rough couple of weeks, but things are finally heading in the right direction again. I've been meaning to check in, but the roller-coaster just never seemed to stop long enough. First thing first, the craniotomy itself went well — it appears that the area of concern was all radiation necrosis (RN), both visually and from the quick "frozen section" pathology conducted during the procedure. We're still waiting on the final pathology of the entire lesion. The area of RN had grown to 2.5-cm, which is the same size as the original tumor removed almost two years ago. Immediately post-op, I was doing well, a minor headache managed well with Tylenol for a couple of days. I had of course hoped that all of the left side weakness and motor control issues (arm, hand, leg, foot) would resolve quickly, but we still don't know for sure how much I'll get back — there has been some improvement, though.
Unfortunately, six months on the steroid (Decadron/dexamethasone) took a much worse toll on me than we knew, except perhaps my surgeon, who was as adamant about the need to excise the RN as he was about getting me off of the steroid as soon as possible. So, following the craniotomy, I spent six nights in the ICU dealing with post-op complications exacerbated by six months straight on Decadron. With my first craniotomy, I spent one night in the ICU, one in a "regular" room, and I was home the next day. But this time around, the most serious problem was a deep-vein thrombosis (DVT), below the knee, which is usually considered manageable, but in my case travelled and became a dangerous pulmonary embolism (PE) in my lung. On my birthday of all days, I had been moved out of the ICU to a regular room, only to start having blood pressure and heart rate issues, leading them to give me a chest CT, discover the PE, and move me back to the ICU for two more nights. The normal course of action would apparently have been to start me on blood thinners and monitor me closely. Blood thinners and brain surgery don't mix, though, so they needed to wait a few more days to clear me to start. In the meantime, they placed an inferior vena cava (IVC) filter up through my groin up into the vein to catch any new DVTs traveling up my leg. DVT is apparently more common in cancer patients, and again made worse by the Decadron. In addition to the DVT/PE, my blood pressure was very high, as was my blood sugar, again, all Decadron related. So it's taken some time to get those things back under control with blood pressure medication, insulin, and now blood thinner.After all that, in order to regain as much of both the left side function while rebuilding strength lost to steroid-induced myopathy and two weeks in a hospital bed, I'm in inpatient rehabilitation for physical and occupational therapy, where I can work on things for several hours a day instead of several hours per week. It's both about regaining strength and allowing the brain to heal from six months of edema and learn new motor pathways. I've been here since the end of last week, not sure yet when I'll be going home, hoping to discuss that tomorrow. In the meantime, it's now two and a half weeks since Thanksgiving night when I experienced the acute decline. Being able to move and start physical therapy (PT) has felt good, we'll see how far it takes me. They've been rapidly tapering my Decadron, which necessarily had to go to an even higher dose post-op. But tomorrow is my last "demon pill" and then they'll transition me to hydrocortisone as they try to nudge the adrenal gland back to normal function, all coordinated with an endocrinologist. My blood sugar continues to be well-managed with insulin and I should be able to discontinue it soon after finishing the Decadron, or so they tell me — point being it hasn't made me a life-long diabetic. Blood pressure, too, continues to do well, even as I increase PT activities. I'll remain on some form of blood thinner for three months and the IVC filter is recommended to be removed around the same time.It's all still too close to reflect on lessons learned, other than to say that radiation necrosis is in many ways just as dangerous as a brain metastasis itself and dexamethasone is a powerful, dangerous, but sometimes necessary part of the cancer journey for some. In hindsight, I think I would have been better off if I'd had surgery a month earlier, but there was no way to know.I hope to post again soon. In the meantime, thanks for everyone's support and concern.All my best,Joe -
- December 16, 2014 at 3:32 am
Good evening all, my apologies for not updating sooner, it has been a rough couple of weeks, but things are finally heading in the right direction again. I've been meaning to check in, but the roller-coaster just never seemed to stop long enough. First thing first, the craniotomy itself went well — it appears that the area of concern was all radiation necrosis (RN), both visually and from the quick "frozen section" pathology conducted during the procedure. We're still waiting on the final pathology of the entire lesion. The area of RN had grown to 2.5-cm, which is the same size as the original tumor removed almost two years ago. Immediately post-op, I was doing well, a minor headache managed well with Tylenol for a couple of days. I had of course hoped that all of the left side weakness and motor control issues (arm, hand, leg, foot) would resolve quickly, but we still don't know for sure how much I'll get back — there has been some improvement, though.
Unfortunately, six months on the steroid (Decadron/dexamethasone) took a much worse toll on me than we knew, except perhaps my surgeon, who was as adamant about the need to excise the RN as he was about getting me off of the steroid as soon as possible. So, following the craniotomy, I spent six nights in the ICU dealing with post-op complications exacerbated by six months straight on Decadron. With my first craniotomy, I spent one night in the ICU, one in a "regular" room, and I was home the next day. But this time around, the most serious problem was a deep-vein thrombosis (DVT), below the knee, which is usually considered manageable, but in my case travelled and became a dangerous pulmonary embolism (PE) in my lung. On my birthday of all days, I had been moved out of the ICU to a regular room, only to start having blood pressure and heart rate issues, leading them to give me a chest CT, discover the PE, and move me back to the ICU for two more nights. The normal course of action would apparently have been to start me on blood thinners and monitor me closely. Blood thinners and brain surgery don't mix, though, so they needed to wait a few more days to clear me to start. In the meantime, they placed an inferior vena cava (IVC) filter up through my groin up into the vein to catch any new DVTs traveling up my leg. DVT is apparently more common in cancer patients, and again made worse by the Decadron. In addition to the DVT/PE, my blood pressure was very high, as was my blood sugar, again, all Decadron related. So it's taken some time to get those things back under control with blood pressure medication, insulin, and now blood thinner.After all that, in order to regain as much of both the left side function while rebuilding strength lost to steroid-induced myopathy and two weeks in a hospital bed, I'm in inpatient rehabilitation for physical and occupational therapy, where I can work on things for several hours a day instead of several hours per week. It's both about regaining strength and allowing the brain to heal from six months of edema and learn new motor pathways. I've been here since the end of last week, not sure yet when I'll be going home, hoping to discuss that tomorrow. In the meantime, it's now two and a half weeks since Thanksgiving night when I experienced the acute decline. Being able to move and start physical therapy (PT) has felt good, we'll see how far it takes me. They've been rapidly tapering my Decadron, which necessarily had to go to an even higher dose post-op. But tomorrow is my last "demon pill" and then they'll transition me to hydrocortisone as they try to nudge the adrenal gland back to normal function, all coordinated with an endocrinologist. My blood sugar continues to be well-managed with insulin and I should be able to discontinue it soon after finishing the Decadron, or so they tell me — point being it hasn't made me a life-long diabetic. Blood pressure, too, continues to do well, even as I increase PT activities. I'll remain on some form of blood thinner for three months and the IVC filter is recommended to be removed around the same time.It's all still too close to reflect on lessons learned, other than to say that radiation necrosis is in many ways just as dangerous as a brain metastasis itself and dexamethasone is a powerful, dangerous, but sometimes necessary part of the cancer journey for some. In hindsight, I think I would have been better off if I'd had surgery a month earlier, but there was no way to know.I hope to post again soon. In the meantime, thanks for everyone's support and concern.All my best,Joe -
- December 16, 2014 at 3:32 am
Good evening all, my apologies for not updating sooner, it has been a rough couple of weeks, but things are finally heading in the right direction again. I've been meaning to check in, but the roller-coaster just never seemed to stop long enough. First thing first, the craniotomy itself went well — it appears that the area of concern was all radiation necrosis (RN), both visually and from the quick "frozen section" pathology conducted during the procedure. We're still waiting on the final pathology of the entire lesion. The area of RN had grown to 2.5-cm, which is the same size as the original tumor removed almost two years ago. Immediately post-op, I was doing well, a minor headache managed well with Tylenol for a couple of days. I had of course hoped that all of the left side weakness and motor control issues (arm, hand, leg, foot) would resolve quickly, but we still don't know for sure how much I'll get back — there has been some improvement, though.
Unfortunately, six months on the steroid (Decadron/dexamethasone) took a much worse toll on me than we knew, except perhaps my surgeon, who was as adamant about the need to excise the RN as he was about getting me off of the steroid as soon as possible. So, following the craniotomy, I spent six nights in the ICU dealing with post-op complications exacerbated by six months straight on Decadron. With my first craniotomy, I spent one night in the ICU, one in a "regular" room, and I was home the next day. But this time around, the most serious problem was a deep-vein thrombosis (DVT), below the knee, which is usually considered manageable, but in my case travelled and became a dangerous pulmonary embolism (PE) in my lung. On my birthday of all days, I had been moved out of the ICU to a regular room, only to start having blood pressure and heart rate issues, leading them to give me a chest CT, discover the PE, and move me back to the ICU for two more nights. The normal course of action would apparently have been to start me on blood thinners and monitor me closely. Blood thinners and brain surgery don't mix, though, so they needed to wait a few more days to clear me to start. In the meantime, they placed an inferior vena cava (IVC) filter up through my groin up into the vein to catch any new DVTs traveling up my leg. DVT is apparently more common in cancer patients, and again made worse by the Decadron. In addition to the DVT/PE, my blood pressure was very high, as was my blood sugar, again, all Decadron related. So it's taken some time to get those things back under control with blood pressure medication, insulin, and now blood thinner.After all that, in order to regain as much of both the left side function while rebuilding strength lost to steroid-induced myopathy and two weeks in a hospital bed, I'm in inpatient rehabilitation for physical and occupational therapy, where I can work on things for several hours a day instead of several hours per week. It's both about regaining strength and allowing the brain to heal from six months of edema and learn new motor pathways. I've been here since the end of last week, not sure yet when I'll be going home, hoping to discuss that tomorrow. In the meantime, it's now two and a half weeks since Thanksgiving night when I experienced the acute decline. Being able to move and start physical therapy (PT) has felt good, we'll see how far it takes me. They've been rapidly tapering my Decadron, which necessarily had to go to an even higher dose post-op. But tomorrow is my last "demon pill" and then they'll transition me to hydrocortisone as they try to nudge the adrenal gland back to normal function, all coordinated with an endocrinologist. My blood sugar continues to be well-managed with insulin and I should be able to discontinue it soon after finishing the Decadron, or so they tell me — point being it hasn't made me a life-long diabetic. Blood pressure, too, continues to do well, even as I increase PT activities. I'll remain on some form of blood thinner for three months and the IVC filter is recommended to be removed around the same time.It's all still too close to reflect on lessons learned, other than to say that radiation necrosis is in many ways just as dangerous as a brain metastasis itself and dexamethasone is a powerful, dangerous, but sometimes necessary part of the cancer journey for some. In hindsight, I think I would have been better off if I'd had surgery a month earlier, but there was no way to know.I hope to post again soon. In the meantime, thanks for everyone's support and concern.All my best,Joe
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