› Forums › General Melanoma Community › Scared about a craniotomy
- This topic has 24 replies, 6 voices, and was last updated 12 years, 5 months ago by
CKasper.
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- November 22, 2011 at 1:20 pm
My husband is scheduled for a craniotomy next Wednesday to remove a large (5cm x 5cm) tumor. We are both scared and worried about complications. It’s in the motor area and the doctor said there was a chance of left side paralysis, plus a bunch of other complications. Any advice on what to expect, how to handle the anxiety and fears, recovery, etc. We have 3 young boys at home and I’m worried about juggling it all. He’s been through a small bowel resection and a thoracotomy and breezed through both surgeries with no complications. This surgery sounds so scary. Any advice?My husband is scheduled for a craniotomy next Wednesday to remove a large (5cm x 5cm) tumor. We are both scared and worried about complications. It’s in the motor area and the doctor said there was a chance of left side paralysis, plus a bunch of other complications. Any advice on what to expect, how to handle the anxiety and fears, recovery, etc. We have 3 young boys at home and I’m worried about juggling it all. He’s been through a small bowel resection and a thoracotomy and breezed through both surgeries with no complications. This surgery sounds so scary. Any advice?
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- November 22, 2011 at 2:41 pm
I had a craniotomy on Nov 1. It is no walk in the park, but it isn't as scary as it sounds either. I did not feel pain during the surgery at all. Post surgery was uncomfortable and generally speaking I did not like being in the hospital hooked up to IVs. After this proceedure I also had radiation to a 3rd lesion that was in a more critial area. I have found myself a little "off" since. There are a few wierd neuological things going on that worry me, but my docs say these are normal and many of them will disappear with time. Brain surgery is a scary thing but for these docs – they do it day i and day out. And brain surgery is in many ways less invasive than surgery to the body. I too have 3 young children – 2 boys and a 3 year old girl. The harest part for me right now is that I cannot play with them for long. My head still hurts and my ears are very sensitive to noise. I am usually a fun dad and I like to play, so being denied this fun is tough on me. But taking time to heal is very very important. Help you husband get some peace and quiet and don't be afraid to ask family and friends to help witht the kids. Good luck to you and your husband.
David
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- November 22, 2011 at 2:41 pm
I had a craniotomy on Nov 1. It is no walk in the park, but it isn't as scary as it sounds either. I did not feel pain during the surgery at all. Post surgery was uncomfortable and generally speaking I did not like being in the hospital hooked up to IVs. After this proceedure I also had radiation to a 3rd lesion that was in a more critial area. I have found myself a little "off" since. There are a few wierd neuological things going on that worry me, but my docs say these are normal and many of them will disappear with time. Brain surgery is a scary thing but for these docs – they do it day i and day out. And brain surgery is in many ways less invasive than surgery to the body. I too have 3 young children – 2 boys and a 3 year old girl. The harest part for me right now is that I cannot play with them for long. My head still hurts and my ears are very sensitive to noise. I am usually a fun dad and I like to play, so being denied this fun is tough on me. But taking time to heal is very very important. Help you husband get some peace and quiet and don't be afraid to ask family and friends to help witht the kids. Good luck to you and your husband.
David
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- November 22, 2011 at 2:41 pm
I had a craniotomy on Nov 1. It is no walk in the park, but it isn't as scary as it sounds either. I did not feel pain during the surgery at all. Post surgery was uncomfortable and generally speaking I did not like being in the hospital hooked up to IVs. After this proceedure I also had radiation to a 3rd lesion that was in a more critial area. I have found myself a little "off" since. There are a few wierd neuological things going on that worry me, but my docs say these are normal and many of them will disappear with time. Brain surgery is a scary thing but for these docs – they do it day i and day out. And brain surgery is in many ways less invasive than surgery to the body. I too have 3 young children – 2 boys and a 3 year old girl. The harest part for me right now is that I cannot play with them for long. My head still hurts and my ears are very sensitive to noise. I am usually a fun dad and I like to play, so being denied this fun is tough on me. But taking time to heal is very very important. Help you husband get some peace and quiet and don't be afraid to ask family and friends to help witht the kids. Good luck to you and your husband.
David
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- November 22, 2011 at 3:25 pm
Hey…
They HAVE to tell you there's a risk of paralysis, complications, etc. There is a risk of all those things. There's also a risk his surgery will get posponed because the doctor's wife goes into labor (oh wait, that already happened to me!) OK, that was intentionally lighthearted, but remember that risk doesn't equal certitude. Many of us have had craniotomies that turned out to be not nearly so scary as we thought; I'm one of them. If you search my posts circa January, you'll find an exceptionally kind note NicOz wrote me about how her (vast) experience with crani's went. She gave me some tips about recovery. I think it's best to soberly understand the risks, as you are doing, but then expect the best. The best outcome is probably more likely than the worst.
Good luck to him and to you,
Katy
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- November 22, 2011 at 6:24 pm
PS I found Nic's advice…it's here: http://www.melanoma.org/community/mpip-melanoma-patients-information-page/craniotomy-comin-down-pike-advice
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- November 22, 2011 at 6:24 pm
PS I found Nic's advice…it's here: http://www.melanoma.org/community/mpip-melanoma-patients-information-page/craniotomy-comin-down-pike-advice
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- November 22, 2011 at 6:24 pm
PS I found Nic's advice…it's here: http://www.melanoma.org/community/mpip-melanoma-patients-information-page/craniotomy-comin-down-pike-advice
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- November 22, 2011 at 3:25 pm
Hey…
They HAVE to tell you there's a risk of paralysis, complications, etc. There is a risk of all those things. There's also a risk his surgery will get posponed because the doctor's wife goes into labor (oh wait, that already happened to me!) OK, that was intentionally lighthearted, but remember that risk doesn't equal certitude. Many of us have had craniotomies that turned out to be not nearly so scary as we thought; I'm one of them. If you search my posts circa January, you'll find an exceptionally kind note NicOz wrote me about how her (vast) experience with crani's went. She gave me some tips about recovery. I think it's best to soberly understand the risks, as you are doing, but then expect the best. The best outcome is probably more likely than the worst.
Good luck to him and to you,
Katy
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- November 22, 2011 at 3:25 pm
Hey…
They HAVE to tell you there's a risk of paralysis, complications, etc. There is a risk of all those things. There's also a risk his surgery will get posponed because the doctor's wife goes into labor (oh wait, that already happened to me!) OK, that was intentionally lighthearted, but remember that risk doesn't equal certitude. Many of us have had craniotomies that turned out to be not nearly so scary as we thought; I'm one of them. If you search my posts circa January, you'll find an exceptionally kind note NicOz wrote me about how her (vast) experience with crani's went. She gave me some tips about recovery. I think it's best to soberly understand the risks, as you are doing, but then expect the best. The best outcome is probably more likely than the worst.
Good luck to him and to you,
Katy
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- November 22, 2011 at 8:43 pm
For me, the experience was basically, that first I had to show up the day of surgery (nervous). Then I laid down, they knocked me out, and then I was happy to find myself waking up next thing. The first 2 days of post-recovery at the hospital were no fun, nor was the first week or so at home. The less steroids, the better I could sleep. Post-craniotomy dreams for me were pretty intense.
If they think they can cut it out, in my case that's definitely the choice I made (biggest was ~3.5 cm). I have had some long term neurological issues but having that stuff pulled out of my brain more than made up for those. As you're aware each case is unique. I'm fortunate to say that I've been very lucky in the type and severity of long-term issues.
So I would say my experience are in line with David's and Katy's. There is a risk that is mentioned, which varies a little bit depending on the tumor site. And that I know is real. There's no guarantees. But at the tumor size you mention, I don't know that there's really any viable alternatives?
-Kyle
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- November 22, 2011 at 8:43 pm
For me, the experience was basically, that first I had to show up the day of surgery (nervous). Then I laid down, they knocked me out, and then I was happy to find myself waking up next thing. The first 2 days of post-recovery at the hospital were no fun, nor was the first week or so at home. The less steroids, the better I could sleep. Post-craniotomy dreams for me were pretty intense.
If they think they can cut it out, in my case that's definitely the choice I made (biggest was ~3.5 cm). I have had some long term neurological issues but having that stuff pulled out of my brain more than made up for those. As you're aware each case is unique. I'm fortunate to say that I've been very lucky in the type and severity of long-term issues.
So I would say my experience are in line with David's and Katy's. There is a risk that is mentioned, which varies a little bit depending on the tumor site. And that I know is real. There's no guarantees. But at the tumor size you mention, I don't know that there's really any viable alternatives?
-Kyle
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- November 24, 2011 at 3:34 am
I had a craniotomy in June 2011, I only found out I had brain tumors the day before, so I was taken to the Hospital immediately, after complaining of headaches & blurry vision for a month, so I went to the ER and they found the tumors (one large orange size one above my left eye & a small quarter size one).
I had no time to really even think about all I was going to go thru, having brain surgery, so I didn't have time to fear anything, or prepare myself emotionally for it , which I think was good, or I may have been freaked out by all of it. I was just freaked out by the fact I was 31 years old, with brain tumors, and what the hell is going on in my life right now! I don't even recall them telling me anything about it, or things I may experience afterwards.
All I remember is them coming to take me away, laying back on a table, and them putting a mask on me, I counted to maybe 6, and I was out! 6 hours later, I wake up, think I'm in some weird dream, I literally thought I was on "Bachelor", and I was one of the girls who was going to date the guy, then within about 20 seconds, I realized, what my name was, and started shouting it out to the nurses who were moving me, etc! I wanted them to know who I was! Freakiest moment of my life thinking I was someone else for those few seconds!
The did not even know when they went in, that my spot was cancerous, and it took them 6 hours to remove it, it wasn't until they took it out, that they tested it and I was then diagnosed with Stage IV Melanoma (Brain, Liver & Lung) a few days later.
Thankfully I dont think I've suffered any after effects, no memory loss, etc, every once in awhile I'll have to think for a few seconds to come up with a word, but that could be from my Gamma Knife treatments as well that I had in July 2011. Just this past month I've had some "aches" in my head, on the side of my head where the big tumor was, I won't know til next Friday if I have more tumors growing or not, I sure hope not! But if I don't have new tumors, then that just means the craniotomy is what is affecting my head and making it ache everyday, not painful, just like 'oooohhh there's a little ache or tingle", or I get some tenseness, like a muscle is contracting or something, which may just be from my skin being messed up where they sewed it back together or from where the titanium plates are on my skull.
I wish the best of luck during the craniotomy. These Brain surgeons, they know what they are doing. Just trust that they will do it right and that everything will go ok!
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- November 24, 2011 at 3:34 am
I had a craniotomy in June 2011, I only found out I had brain tumors the day before, so I was taken to the Hospital immediately, after complaining of headaches & blurry vision for a month, so I went to the ER and they found the tumors (one large orange size one above my left eye & a small quarter size one).
I had no time to really even think about all I was going to go thru, having brain surgery, so I didn't have time to fear anything, or prepare myself emotionally for it , which I think was good, or I may have been freaked out by all of it. I was just freaked out by the fact I was 31 years old, with brain tumors, and what the hell is going on in my life right now! I don't even recall them telling me anything about it, or things I may experience afterwards.
All I remember is them coming to take me away, laying back on a table, and them putting a mask on me, I counted to maybe 6, and I was out! 6 hours later, I wake up, think I'm in some weird dream, I literally thought I was on "Bachelor", and I was one of the girls who was going to date the guy, then within about 20 seconds, I realized, what my name was, and started shouting it out to the nurses who were moving me, etc! I wanted them to know who I was! Freakiest moment of my life thinking I was someone else for those few seconds!
The did not even know when they went in, that my spot was cancerous, and it took them 6 hours to remove it, it wasn't until they took it out, that they tested it and I was then diagnosed with Stage IV Melanoma (Brain, Liver & Lung) a few days later.
Thankfully I dont think I've suffered any after effects, no memory loss, etc, every once in awhile I'll have to think for a few seconds to come up with a word, but that could be from my Gamma Knife treatments as well that I had in July 2011. Just this past month I've had some "aches" in my head, on the side of my head where the big tumor was, I won't know til next Friday if I have more tumors growing or not, I sure hope not! But if I don't have new tumors, then that just means the craniotomy is what is affecting my head and making it ache everyday, not painful, just like 'oooohhh there's a little ache or tingle", or I get some tenseness, like a muscle is contracting or something, which may just be from my skin being messed up where they sewed it back together or from where the titanium plates are on my skull.
I wish the best of luck during the craniotomy. These Brain surgeons, they know what they are doing. Just trust that they will do it right and that everything will go ok!
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- November 24, 2011 at 3:34 am
I had a craniotomy in June 2011, I only found out I had brain tumors the day before, so I was taken to the Hospital immediately, after complaining of headaches & blurry vision for a month, so I went to the ER and they found the tumors (one large orange size one above my left eye & a small quarter size one).
I had no time to really even think about all I was going to go thru, having brain surgery, so I didn't have time to fear anything, or prepare myself emotionally for it , which I think was good, or I may have been freaked out by all of it. I was just freaked out by the fact I was 31 years old, with brain tumors, and what the hell is going on in my life right now! I don't even recall them telling me anything about it, or things I may experience afterwards.
All I remember is them coming to take me away, laying back on a table, and them putting a mask on me, I counted to maybe 6, and I was out! 6 hours later, I wake up, think I'm in some weird dream, I literally thought I was on "Bachelor", and I was one of the girls who was going to date the guy, then within about 20 seconds, I realized, what my name was, and started shouting it out to the nurses who were moving me, etc! I wanted them to know who I was! Freakiest moment of my life thinking I was someone else for those few seconds!
The did not even know when they went in, that my spot was cancerous, and it took them 6 hours to remove it, it wasn't until they took it out, that they tested it and I was then diagnosed with Stage IV Melanoma (Brain, Liver & Lung) a few days later.
Thankfully I dont think I've suffered any after effects, no memory loss, etc, every once in awhile I'll have to think for a few seconds to come up with a word, but that could be from my Gamma Knife treatments as well that I had in July 2011. Just this past month I've had some "aches" in my head, on the side of my head where the big tumor was, I won't know til next Friday if I have more tumors growing or not, I sure hope not! But if I don't have new tumors, then that just means the craniotomy is what is affecting my head and making it ache everyday, not painful, just like 'oooohhh there's a little ache or tingle", or I get some tenseness, like a muscle is contracting or something, which may just be from my skin being messed up where they sewed it back together or from where the titanium plates are on my skull.
I wish the best of luck during the craniotomy. These Brain surgeons, they know what they are doing. Just trust that they will do it right and that everything will go ok!
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- November 22, 2011 at 8:43 pm
For me, the experience was basically, that first I had to show up the day of surgery (nervous). Then I laid down, they knocked me out, and then I was happy to find myself waking up next thing. The first 2 days of post-recovery at the hospital were no fun, nor was the first week or so at home. The less steroids, the better I could sleep. Post-craniotomy dreams for me were pretty intense.
If they think they can cut it out, in my case that's definitely the choice I made (biggest was ~3.5 cm). I have had some long term neurological issues but having that stuff pulled out of my brain more than made up for those. As you're aware each case is unique. I'm fortunate to say that I've been very lucky in the type and severity of long-term issues.
So I would say my experience are in line with David's and Katy's. There is a risk that is mentioned, which varies a little bit depending on the tumor site. And that I know is real. There's no guarantees. But at the tumor size you mention, I don't know that there's really any viable alternatives?
-Kyle
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- November 24, 2011 at 3:37 am
I forgot to say too, i have 2 year old and 6 year old…thankfully we had a friend watch our 2 year old and my mom watched my 6 year old, while my husband was working (he started a new job the week this happened, so he couldn't take off work). You will need some help for a few days or a week or so to help manage them, as you know you'll be stressed out too! Don't be afraid to ask people for help!! All the people who helped cook for us the weeks following my Brain surgery & my Lumbar puncture the following week (when my fluid wasn't draining properly from my head), were total saviors to us!
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- November 24, 2011 at 3:37 am
I forgot to say too, i have 2 year old and 6 year old…thankfully we had a friend watch our 2 year old and my mom watched my 6 year old, while my husband was working (he started a new job the week this happened, so he couldn't take off work). You will need some help for a few days or a week or so to help manage them, as you know you'll be stressed out too! Don't be afraid to ask people for help!! All the people who helped cook for us the weeks following my Brain surgery & my Lumbar puncture the following week (when my fluid wasn't draining properly from my head), were total saviors to us!
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- November 24, 2011 at 3:37 am
I forgot to say too, i have 2 year old and 6 year old…thankfully we had a friend watch our 2 year old and my mom watched my 6 year old, while my husband was working (he started a new job the week this happened, so he couldn't take off work). You will need some help for a few days or a week or so to help manage them, as you know you'll be stressed out too! Don't be afraid to ask people for help!! All the people who helped cook for us the weeks following my Brain surgery & my Lumbar puncture the following week (when my fluid wasn't draining properly from my head), were total saviors to us!
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- November 24, 2011 at 10:33 am
I had left sided paralysis of my left leg after one surgery and yesterday I was jogging. He may at first experience this and over time it will get better (hopefully). The main thing I would stress on recovery is to do the physical therapy. I made the mistake of assuming I was going to die after my second brain surgery and not bothering to go. Instead, approach this trauma like an injured football player, or Iraq war veteran, or somebody who got in a car crash. Often times the initial paralysis is due to swelling, over time, the swellling will go down. Basically prepare for the worst, and hope for the best.
God be with you, and get the boys to chip in and help out with his recovery, don't spring it on them after surgery, and then have him depressed and embarrassed that he is a different man.. No reason he should feel like a burden, melanoma is not his fault.
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- November 28, 2011 at 12:38 am
I went through one in 2007. Its was probably the scariest thing I ever encountered. It was recommended that I have the surgery and I just mustered up my courage and went t hrough it.
It was painful, and the recovery time was I think long, but I got through it. I'm glad I did.
Good Luck.
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- November 28, 2011 at 12:38 am
I went through one in 2007. Its was probably the scariest thing I ever encountered. It was recommended that I have the surgery and I just mustered up my courage and went t hrough it.
It was painful, and the recovery time was I think long, but I got through it. I'm glad I did.
Good Luck.
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- November 28, 2011 at 12:38 am
I went through one in 2007. Its was probably the scariest thing I ever encountered. It was recommended that I have the surgery and I just mustered up my courage and went t hrough it.
It was painful, and the recovery time was I think long, but I got through it. I'm glad I did.
Good Luck.
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- November 24, 2011 at 10:33 am
I had left sided paralysis of my left leg after one surgery and yesterday I was jogging. He may at first experience this and over time it will get better (hopefully). The main thing I would stress on recovery is to do the physical therapy. I made the mistake of assuming I was going to die after my second brain surgery and not bothering to go. Instead, approach this trauma like an injured football player, or Iraq war veteran, or somebody who got in a car crash. Often times the initial paralysis is due to swelling, over time, the swellling will go down. Basically prepare for the worst, and hope for the best.
God be with you, and get the boys to chip in and help out with his recovery, don't spring it on them after surgery, and then have him depressed and embarrassed that he is a different man.. No reason he should feel like a burden, melanoma is not his fault.
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- November 24, 2011 at 10:33 am
I had left sided paralysis of my left leg after one surgery and yesterday I was jogging. He may at first experience this and over time it will get better (hopefully). The main thing I would stress on recovery is to do the physical therapy. I made the mistake of assuming I was going to die after my second brain surgery and not bothering to go. Instead, approach this trauma like an injured football player, or Iraq war veteran, or somebody who got in a car crash. Often times the initial paralysis is due to swelling, over time, the swellling will go down. Basically prepare for the worst, and hope for the best.
God be with you, and get the boys to chip in and help out with his recovery, don't spring it on them after surgery, and then have him depressed and embarrassed that he is a different man.. No reason he should feel like a burden, melanoma is not his fault.
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