worried…

My husband had a craniotomy,nfollowed by gamma knife 3 years ago.  It took him several months to recover (at least 3-4 months).   He would sleep 16-18 hours a day for the first month or two.  Even at 6 months after, he would sleep 10-12 hours at night and many days need a nap.  He's still alive (and doing well with NED for almost 2 years), but has permanent brain damage.   He still struggles with short term memory, some cognition, and some vision.  He's certainly not the same person he was before his brain tumor, but he's alive and we've both worked extremely hard to adjust.  It's not easy, but try to take it a day at a time.  Steroids really messed with him…he was certainly not himself while on them.  Once he weaned off, I started seeing him inside there again.  Watching him recover and supporting him through was really hard.   Try to take it a day at a time and try not to worry too much (easier said than done, I know).  

My husband had a craniotomy,nfollowed by gamma knife 3 years ago.  It took him several months to recover (at least 3-4 months).   He would sleep 16-18 hours a day for the first month or two.  Even at 6 months after, he would sleep 10-12 hours at night and many days need a nap.  He's still alive (and doing well with NED for almost 2 years), but has permanent brain damage.   He still struggles with short term memory, some cognition, and some vision.  He's certainly not the same person he was before his brain tumor, but he's alive and we've both worked extremely hard to adjust.  It's not easy, but try to take it a day at a time.  Steroids really messed with him…he was certainly not himself while on them.  Once he weaned off, I started seeing him inside there again.  Watching him recover and supporting him through was really hard.   Try to take it a day at a time and try not to worry too much (easier said than done, I know).  

My husband had a craniotomy,nfollowed by gamma knife 3 years ago.  It took him several months to recover (at least 3-4 months).   He would sleep 16-18 hours a day for the first month or two.  Even at 6 months after, he would sleep 10-12 hours at night and many days need a nap.  He's still alive (and doing well with NED for almost 2 years), but has permanent brain damage.   He still struggles with short term memory, some cognition, and some vision.  He's certainly not the same person he was before his brain tumor, but he's alive and we've both worked extremely hard to adjust.  It's not easy, but try to take it a day at a time.  Steroids really messed with him…he was certainly not himself while on them.  Once he weaned off, I started seeing him inside there again.  Watching him recover and supporting him through was really hard.   Try to take it a day at a time and try not to worry too much (easier said than done, I know).  

My Mom had gamma knife radiation last year for a total of 25 mets treated. So, I look for information on this quite a bit. Recently, there was a study in Europe that tracked patients who had it plus canabinoids. Those that took canabinoids did bettet than thoes that didn’t. You might look into this. I had my Mom take CBDs starting about 1 week before the first procedure and she is still taking them. She had done very well. You may also look onto neurofeedback it might be helpful for his brain as it recovers.

http://m.huffpost.com/us/entry/6181060?ir=Healthy+Living

http://www.braincancer.org/2014/11/21/cannabinoids-and-treating-glioblastoma-brain-tumor-patientshttp://www.gwpharm.com/oncology.aspx

My Mom had gamma knife radiation last year for a total of 25 mets treated. So, I look for information on this quite a bit. Recently, there was a study in Europe that tracked patients who had it plus canabinoids. Those that took canabinoids did bettet than thoes that didn’t. You might look into this. I had my Mom take CBDs starting about 1 week before the first procedure and she is still taking them. She had done very well. You may also look onto neurofeedback it might be helpful for his brain as it recovers.

http://m.huffpost.com/us/entry/6181060?ir=Healthy+Living

http://www.braincancer.org/2014/11/21/cannabinoids-and-treating-glioblastoma-brain-tumor-patientshttp://www.gwpharm.com/oncology.aspx

My Mom had gamma knife radiation last year for a total of 25 mets treated. So, I look for information on this quite a bit. Recently, there was a study in Europe that tracked patients who had it plus canabinoids. Those that took canabinoids did bettet than thoes that didn’t. You might look into this. I had my Mom take CBDs starting about 1 week before the first procedure and she is still taking them. She had done very well. You may also look onto neurofeedback it might be helpful for his brain as it recovers.

http://m.huffpost.com/us/entry/6181060?ir=Healthy+Living

http://www.braincancer.org/2014/11/21/cannabinoids-and-treating-glioblastoma-brain-tumor-patientshttp://www.gwpharm.com/oncology.aspx

Hi Yasmin,

I think "generically speaking" fatigue is a long-term part of recovery for brain tumor treatment. Here are a couple of discussions of fatigue related to brain tumors. Both of these guides also both recommend to discuss fatigue issues with the doctors, to try to rule out any other issues:

http://www.abta.org/brain-tumor-treatment/side-effects/fatigue.html

http://www.brainsciencefoundation.org/Portals/0/Uploads/documents/public/bt_and_fatigue.pdf

For myself, I was very fatigued for the immediate weeks following treatments. Longer-term I've needed to cut back what I do each day to keep an even keel and not overdo it.

I found the following advice particularly relevant to my own experience, from the National Brain Tumor Society: "Develop realistic expectations. Avoid competing with the person you once were or holding yourself to former standards. You now operate without the energy reserves you once had. Resist the pull to keep running on empty. Give yourself permission to take a rest or a break without feeling that you are “giving in to the tumor.” Long-term survivorswho feel they have conquered fatigue say they did so by redefining “normal” and accepting the person they are now."

Again, that doesn't mean that someone shouldn't talk with their doctors about fatigue — all these references say they should, to rule out any other factors besides "normal" acute short-term fatigue and possibly longer-term fatigue as well.

Hi Yasmin,

I think "generically speaking" fatigue is a long-term part of recovery for brain tumor treatment. Here are a couple of discussions of fatigue related to brain tumors. Both of these guides also both recommend to discuss fatigue issues with the doctors, to try to rule out any other issues:

http://www.abta.org/brain-tumor-treatment/side-effects/fatigue.html

http://www.brainsciencefoundation.org/Portals/0/Uploads/documents/public/bt_and_fatigue.pdf

For myself, I was very fatigued for the immediate weeks following treatments. Longer-term I've needed to cut back what I do each day to keep an even keel and not overdo it.

I found the following advice particularly relevant to my own experience, from the National Brain Tumor Society: "Develop realistic expectations. Avoid competing with the person you once were or holding yourself to former standards. You now operate without the energy reserves you once had. Resist the pull to keep running on empty. Give yourself permission to take a rest or a break without feeling that you are “giving in to the tumor.” Long-term survivorswho feel they have conquered fatigue say they did so by redefining “normal” and accepting the person they are now."

Again, that doesn't mean that someone shouldn't talk with their doctors about fatigue — all these references say they should, to rule out any other factors besides "normal" acute short-term fatigue and possibly longer-term fatigue as well.

Hi Yasmin,

I think "generically speaking" fatigue is a long-term part of recovery for brain tumor treatment. Here are a couple of discussions of fatigue related to brain tumors. Both of these guides also both recommend to discuss fatigue issues with the doctors, to try to rule out any other issues:

http://www.abta.org/brain-tumor-treatment/side-effects/fatigue.html

http://www.brainsciencefoundation.org/Portals/0/Uploads/documents/public/bt_and_fatigue.pdf

For myself, I was very fatigued for the immediate weeks following treatments. Longer-term I've needed to cut back what I do each day to keep an even keel and not overdo it.

I found the following advice particularly relevant to my own experience, from the National Brain Tumor Society: "Develop realistic expectations. Avoid competing with the person you once were or holding yourself to former standards. You now operate without the energy reserves you once had. Resist the pull to keep running on empty. Give yourself permission to take a rest or a break without feeling that you are “giving in to the tumor.” Long-term survivorswho feel they have conquered fatigue say they did so by redefining “normal” and accepting the person they are now."

Again, that doesn't mean that someone shouldn't talk with their doctors about fatigue — all these references say they should, to rule out any other factors besides "normal" acute short-term fatigue and possibly longer-term fatigue as well.

Hi, 

I had both the craniotomy and the SRS a year ago last September 2013. I found the steroids I was on after the sugery to be absolutely brutal. I know they serve the purpose of reducing swelling which make them very valuable but the side effects totally through off my sleep pattern only allowing 2-3 hours of uninterrupted sleep so the exhaustion had me nodding off during the day as well as being in a pretty irritable mood. I also had radiation followup on the resected tumor bed and that caused fatigue also. I asked my Dr for a sleeping aid for the month which helped quite a bit and after I was weaned off the nasty steroids I slowly returned to normal. Do watch out for exposing him to  any people with winter colds or flu as steroids lower your resistance. I found out the hard way that a 3 year old nephew with the runny nose and cold can knock you so hard you can end up in the emergency room and hospital admittance with the ER staff misdiagnosing the symptoms as either a surgery related infection and fever or meningitis. Fast forward 15 months and one additional successful June 2014 SRS on a new tumor on the brain dura (not in the brain like the resected one) and I am very much alive and kicking and as of Nov body and Dec brain scans am NED. The only thing not fully recovered are some lingering cognitive issues like quantitative task speed, occasional word finding, train of thought and the like. A small price to pay and my friends without brain surgery say they are slipping also due to natural aging. I found my Oncologist's referral to a Neurologist very helpful in walking my wife and I through both the effects of surgery on my temporal lobe and then radiation treatment to that site. Hang in there and give those steroids some time to get out of his system and give him some time to let the brain heal. Having been where your husband was 15 months ago hearing what he's going through sounds so familiar. I think he will be making major strides back towards normalcy over the next few months. Best wishes to your husband for a speedy recovery. 

Hi, 

I had both the craniotomy and the SRS a year ago last September 2013. I found the steroids I was on after the sugery to be absolutely brutal. I know they serve the purpose of reducing swelling which make them very valuable but the side effects totally through off my sleep pattern only allowing 2-3 hours of uninterrupted sleep so the exhaustion had me nodding off during the day as well as being in a pretty irritable mood. I also had radiation followup on the resected tumor bed and that caused fatigue also. I asked my Dr for a sleeping aid for the month which helped quite a bit and after I was weaned off the nasty steroids I slowly returned to normal. Do watch out for exposing him to  any people with winter colds or flu as steroids lower your resistance. I found out the hard way that a 3 year old nephew with the runny nose and cold can knock you so hard you can end up in the emergency room and hospital admittance with the ER staff misdiagnosing the symptoms as either a surgery related infection and fever or meningitis. Fast forward 15 months and one additional successful June 2014 SRS on a new tumor on the brain dura (not in the brain like the resected one) and I am very much alive and kicking and as of Nov body and Dec brain scans am NED. The only thing not fully recovered are some lingering cognitive issues like quantitative task speed, occasional word finding, train of thought and the like. A small price to pay and my friends without brain surgery say they are slipping also due to natural aging. I found my Oncologist's referral to a Neurologist very helpful in walking my wife and I through both the effects of surgery on my temporal lobe and then radiation treatment to that site. Hang in there and give those steroids some time to get out of his system and give him some time to let the brain heal. Having been where your husband was 15 months ago hearing what he's going through sounds so familiar. I think he will be making major strides back towards normalcy over the next few months. Best wishes to your husband for a speedy recovery. 

Hi, 

I had both the craniotomy and the SRS a year ago last September 2013. I found the steroids I was on after the sugery to be absolutely brutal. I know they serve the purpose of reducing swelling which make them very valuable but the side effects totally through off my sleep pattern only allowing 2-3 hours of uninterrupted sleep so the exhaustion had me nodding off during the day as well as being in a pretty irritable mood. I also had radiation followup on the resected tumor bed and that caused fatigue also. I asked my Dr for a sleeping aid for the month which helped quite a bit and after I was weaned off the nasty steroids I slowly returned to normal. Do watch out for exposing him to  any people with winter colds or flu as steroids lower your resistance. I found out the hard way that a 3 year old nephew with the runny nose and cold can knock you so hard you can end up in the emergency room and hospital admittance with the ER staff misdiagnosing the symptoms as either a surgery related infection and fever or meningitis. Fast forward 15 months and one additional successful June 2014 SRS on a new tumor on the brain dura (not in the brain like the resected one) and I am very much alive and kicking and as of Nov body and Dec brain scans am NED. The only thing not fully recovered are some lingering cognitive issues like quantitative task speed, occasional word finding, train of thought and the like. A small price to pay and my friends without brain surgery say they are slipping also due to natural aging. I found my Oncologist's referral to a Neurologist very helpful in walking my wife and I through both the effects of surgery on my temporal lobe and then radiation treatment to that site. Hang in there and give those steroids some time to get out of his system and give him some time to let the brain heal. Having been where your husband was 15 months ago hearing what he's going through sounds so familiar. I think he will be making major strides back towards normalcy over the next few months. Best wishes to your husband for a speedy recovery.