Craniotomy

Lisa,

 So sorry to hear your news. Here is a link that is very informative:

Craniotomy | Preparation, Risks, Complications, Brain Surgery …

 

What were the results of your pet/ctscans??? Is yervoy working for you..are you still a responder?

Good luck with your surgery,

Kathy

Lisa,

 So sorry to hear your news. Here is a link that is very informative:

Craniotomy | Preparation, Risks, Complications, Brain Surgery …

 

What were the results of your pet/ctscans??? Is yervoy working for you..are you still a responder?

Good luck with your surgery,

Kathy

Lisa,

 So sorry to hear your news. Here is a link that is very informative:

Craniotomy | Preparation, Risks, Complications, Brain Surgery …

 

What were the results of your pet/ctscans??? Is yervoy working for you..are you still a responder?

Good luck with your surgery,

Kathy

Lisa,

I'm so glad they are going to do the crainotomy!  My next mri is next Wed and scared to death.  I have heard from someone in Louisiana that goes to MDA that has had 6 crainotomy's and is still working full time. 

My recovery was more difficult because my muscles were so wasted.  Because of location of tumor is different for each person. 

I was in ICU for 24 hours and then in the hospital for 2 more days.  Was told that they would have sent me home after 1 day after the ICU but didn't let me since we lived so far.

You will definitley put you on steroids if not on them now but will start to wean you off immediately.  Even with being on for so long at the end of 3 weeks I was off of them.  Expect for them not to let you drive for about a month and will most likely put you on anti-seizure meds for about 2 weeks.

Make sure and let us know how you are doing. 

Linda

Lisa,

I'm so glad they are going to do the crainotomy!  My next mri is next Wed and scared to death.  I have heard from someone in Louisiana that goes to MDA that has had 6 crainotomy's and is still working full time. 

My recovery was more difficult because my muscles were so wasted.  Because of location of tumor is different for each person. 

I was in ICU for 24 hours and then in the hospital for 2 more days.  Was told that they would have sent me home after 1 day after the ICU but didn't let me since we lived so far.

You will definitley put you on steroids if not on them now but will start to wean you off immediately.  Even with being on for so long at the end of 3 weeks I was off of them.  Expect for them not to let you drive for about a month and will most likely put you on anti-seizure meds for about 2 weeks.

Make sure and let us know how you are doing. 

Linda

Lisa,

I'm so glad they are going to do the crainotomy!  My next mri is next Wed and scared to death.  I have heard from someone in Louisiana that goes to MDA that has had 6 crainotomy's and is still working full time. 

My recovery was more difficult because my muscles were so wasted.  Because of location of tumor is different for each person. 

I was in ICU for 24 hours and then in the hospital for 2 more days.  Was told that they would have sent me home after 1 day after the ICU but didn't let me since we lived so far.

You will definitley put you on steroids if not on them now but will start to wean you off immediately.  Even with being on for so long at the end of 3 weeks I was off of them.  Expect for them not to let you drive for about a month and will most likely put you on anti-seizure meds for about 2 weeks.

Make sure and let us know how you are doing. 

Linda

My husband had a craniotomy in November. Pain was minimal…only tylenol after the first night. Dr. thought 3-5 nights in the hospital, but he was discharged in 48 hours. The nurses were amazed he was walking the halls less than 24 hours after surgery. Recover took forever…at least 6-8 weeks before he felt himself. He was just soooooo tired. I think he slept more than he was awake for the first week or two. Not sure how much was the recovery from the surgery or how much was the anti-seizure meds and steroids he was on. Once he got off all of those (at about 8 weeks), he felt better. He also had gamma knife 4 weeks after the craniotomy, so I’m sure that made things worse. It took him a good 3 months to feel good. Medicine schedule was tough for awhile…3 different meds (he was on Zelboaf, too) were all on different schedules. Make a chart and it will make it so much easier. Ask for help…you’ll need it:). I stayed with him 24/7 for the first 6 weeks (the doctor was really concerned about seizures, especially after gamma knife). He couldn’t drive for 3 months.
The surgery was the easiest one he’s had (scariest,but easiest,,at least in terms of pain control). He said the worst part was really the anti seizure meds and steroids.

My husband had a craniotomy in November. Pain was minimal…only tylenol after the first night. Dr. thought 3-5 nights in the hospital, but he was discharged in 48 hours. The nurses were amazed he was walking the halls less than 24 hours after surgery. Recover took forever…at least 6-8 weeks before he felt himself. He was just soooooo tired. I think he slept more than he was awake for the first week or two. Not sure how much was the recovery from the surgery or how much was the anti-seizure meds and steroids he was on. Once he got off all of those (at about 8 weeks), he felt better. He also had gamma knife 4 weeks after the craniotomy, so I’m sure that made things worse. It took him a good 3 months to feel good. Medicine schedule was tough for awhile…3 different meds (he was on Zelboaf, too) were all on different schedules. Make a chart and it will make it so much easier. Ask for help…you’ll need it:). I stayed with him 24/7 for the first 6 weeks (the doctor was really concerned about seizures, especially after gamma knife). He couldn’t drive for 3 months.
The surgery was the easiest one he’s had (scariest,but easiest,,at least in terms of pain control). He said the worst part was really the anti seizure meds and steroids.

My husband had a craniotomy in November. Pain was minimal…only tylenol after the first night. Dr. thought 3-5 nights in the hospital, but he was discharged in 48 hours. The nurses were amazed he was walking the halls less than 24 hours after surgery. Recover took forever…at least 6-8 weeks before he felt himself. He was just soooooo tired. I think he slept more than he was awake for the first week or two. Not sure how much was the recovery from the surgery or how much was the anti-seizure meds and steroids he was on. Once he got off all of those (at about 8 weeks), he felt better. He also had gamma knife 4 weeks after the craniotomy, so I’m sure that made things worse. It took him a good 3 months to feel good. Medicine schedule was tough for awhile…3 different meds (he was on Zelboaf, too) were all on different schedules. Make a chart and it will make it so much easier. Ask for help…you’ll need it:). I stayed with him 24/7 for the first 6 weeks (the doctor was really concerned about seizures, especially after gamma knife). He couldn’t drive for 3 months.
The surgery was the easiest one he’s had (scariest,but easiest,,at least in terms of pain control). He said the worst part was really the anti seizure meds and steroids.

The craniotomy was not the problem as much as the effects of the steroids that I was on before and after. I'm sure that you're already aware of that though. It really didn't take too long to recuperate from the surgery. The upper right parietal lobe was the location of my cranie so that may have had something to do with it.

Best to you for a swift recovery,

Karen

The craniotomy was not the problem as much as the effects of the steroids that I was on before and after. I'm sure that you're already aware of that though. It really didn't take too long to recuperate from the surgery. The upper right parietal lobe was the location of my cranie so that may have had something to do with it.

Best to you for a swift recovery,

Karen

The craniotomy was not the problem as much as the effects of the steroids that I was on before and after. I'm sure that you're already aware of that though. It really didn't take too long to recuperate from the surgery. The upper right parietal lobe was the location of my cranie so that may have had something to do with it.

Best to you for a swift recovery,

Karen

Lisa- I have had 6 crani's. The recovery has been differnt for each one. I have been out of hospital within 48 hours each time. I have been able to walk within 24 hours without any problems. I go to MDA in Houston. I have 2 young children and run a psych.treatment center for children so work a lot of hours. I am back to work within 2 weeks. Taking care of the kids right away is difficult. You will be given instructions not to lift anything or carry anything heavier than 5 lbs. You can not bend over either. The steroids are awful but they taper you off quickly. I had to remain on steroids for 9 months for the first year due to edema. I have not been able to get off of the anti seizure meds due to ongoing issues with  partial seizures. I have mri at MDA on Wed. and see neurosurgeon on thurs. If all is good hope to get off Keppra soon. You will probably tire easily but I have found that if I stay active, rest when needed and follow dr. instructions I recover very quickly. I have my staples/sutures removed by sister (nurse). It is not  very painful and sounds worse than it is. Ihad a thoracotomy which was 100 times worse! Take pj's that button in the front so you wont have to put anything over your head. Just easier. Good luck and will keep you in my thoughts!

Robyn

Lisa- I have had 6 crani's. The recovery has been differnt for each one. I have been out of hospital within 48 hours each time. I have been able to walk within 24 hours without any problems. I go to MDA in Houston. I have 2 young children and run a psych.treatment center for children so work a lot of hours. I am back to work within 2 weeks. Taking care of the kids right away is difficult. You will be given instructions not to lift anything or carry anything heavier than 5 lbs. You can not bend over either. The steroids are awful but they taper you off quickly. I had to remain on steroids for 9 months for the first year due to edema. I have not been able to get off of the anti seizure meds due to ongoing issues with  partial seizures. I have mri at MDA on Wed. and see neurosurgeon on thurs. If all is good hope to get off Keppra soon. You will probably tire easily but I have found that if I stay active, rest when needed and follow dr. instructions I recover very quickly. I have my staples/sutures removed by sister (nurse). It is not  very painful and sounds worse than it is. Ihad a thoracotomy which was 100 times worse! Take pj's that button in the front so you wont have to put anything over your head. Just easier. Good luck and will keep you in my thoughts!

Robyn

Lisa- I have had 6 crani's. The recovery has been differnt for each one. I have been out of hospital within 48 hours each time. I have been able to walk within 24 hours without any problems. I go to MDA in Houston. I have 2 young children and run a psych.treatment center for children so work a lot of hours. I am back to work within 2 weeks. Taking care of the kids right away is difficult. You will be given instructions not to lift anything or carry anything heavier than 5 lbs. You can not bend over either. The steroids are awful but they taper you off quickly. I had to remain on steroids for 9 months for the first year due to edema. I have not been able to get off of the anti seizure meds due to ongoing issues with  partial seizures. I have mri at MDA on Wed. and see neurosurgeon on thurs. If all is good hope to get off Keppra soon. You will probably tire easily but I have found that if I stay active, rest when needed and follow dr. instructions I recover very quickly. I have my staples/sutures removed by sister (nurse). It is not  very painful and sounds worse than it is. Ihad a thoracotomy which was 100 times worse! Take pj's that button in the front so you wont have to put anything over your head. Just easier. Good luck and will keep you in my thoughts!

Robyn

Lisa, when I was a kid, I for sure never thought, hmm, maybe when I grow up one day, I’ll be on the receiving end of brain surgery. But I’ve been lucky enough (which I definitely mean sincerely) to have had two. Like, holy cow, they’re pulling out all the stops to take care of me.

Like Linda, I’m also glad to hear they’re going the resection route for you. My impression is that craniotomy may have “better” results in some situations than radio surgery. For me, so far #1 (resected) hasn’t come back, knock on wood, but #2 which got beam radiation only, came back, and was resected some months later, one year ago.

Going in for this can be kind of surreal. But the second surgery for me (a double) had a better initial recovery. I don’t know if it was the steroid bounce, or that the worst neuro symptoms from before the surgery had abated, or that I’d been through it once before, but I felt f$&@’n great waking up afterwards, as my neurosurgeon tapped me on the toe to check in on me. And of course it felt really great knowing that stuff was physically outta my head too.

Best of luck next week. -Kyle

Lisa, when I was a kid, I for sure never thought, hmm, maybe when I grow up one day, I’ll be on the receiving end of brain surgery. But I’ve been lucky enough (which I definitely mean sincerely) to have had two. Like, holy cow, they’re pulling out all the stops to take care of me.

Like Linda, I’m also glad to hear they’re going the resection route for you. My impression is that craniotomy may have “better” results in some situations than radio surgery. For me, so far #1 (resected) hasn’t come back, knock on wood, but #2 which got beam radiation only, came back, and was resected some months later, one year ago.

Going in for this can be kind of surreal. But the second surgery for me (a double) had a better initial recovery. I don’t know if it was the steroid bounce, or that the worst neuro symptoms from before the surgery had abated, or that I’d been through it once before, but I felt f$&@’n great waking up afterwards, as my neurosurgeon tapped me on the toe to check in on me. And of course it felt really great knowing that stuff was physically outta my head too.

Best of luck next week. -Kyle

Lisa, when I was a kid, I for sure never thought, hmm, maybe when I grow up one day, I’ll be on the receiving end of brain surgery. But I’ve been lucky enough (which I definitely mean sincerely) to have had two. Like, holy cow, they’re pulling out all the stops to take care of me.

Like Linda, I’m also glad to hear they’re going the resection route for you. My impression is that craniotomy may have “better” results in some situations than radio surgery. For me, so far #1 (resected) hasn’t come back, knock on wood, but #2 which got beam radiation only, came back, and was resected some months later, one year ago.

Going in for this can be kind of surreal. But the second surgery for me (a double) had a better initial recovery. I don’t know if it was the steroid bounce, or that the worst neuro symptoms from before the surgery had abated, or that I’d been through it once before, but I felt f$&@’n great waking up afterwards, as my neurosurgeon tapped me on the toe to check in on me. And of course it felt really great knowing that stuff was physically outta my head too.

Best of luck next week. -Kyle

Hi Lisa! I hope you are doing well. My dad was diagnosed same time as you and have been praying for you.

Maggie

Hi Lisa! I hope you are doing well. My dad was diagnosed same time as you and have been praying for you.

Maggie

Hi Lisa! I hope you are doing well. My dad was diagnosed same time as you and have been praying for you.

Maggie