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Tumor Removed in Brain/So exhausted
On November 24th I had brain surgery in Memorial Sloan Kettering Hospital in NYC. I had one of the leading Neurosurgeons but feel my question is never answered directly.
I am absolutely exhausted. I'm so tired that it feels like depression - yet I have visited a psychiatrist who doesn't seem to think I'm depressed. I did go off a steroid about 3 weeks ago, which I was prescribed after the brain began to swell after surgery. There was also a 2nd surgery a week after the first to open a 'canal' so the brain would drain. I will also mention that the appendanoma removed was not cancerous, but in its removal microscopically, I did hemorage. About 20% of the tumor is remaining but will be followed up by MRIs after all the blood has cleared up. Again, I am exhausted after minimal exercise - almost all the time.
Would this tiredness be a familiar reaction? Some say "It's only been two months." Others say "You should feel better - It's been two months!". These are friends & family - not the medical community who just seem to write it down on their pads and not comment specifically.
I am absolutely exhausted. I'm so tired that it feels like depression - yet I have visited a psychiatrist who doesn't seem to think I'm depressed. I did go off a steroid about 3 weeks ago, which I was prescribed after the brain began to swell after surgery. There was also a 2nd surgery a week after the first to open a 'canal' so the brain would drain. I will also mention that the appendanoma removed was not cancerous, but in its removal microscopically, I did hemorage. About 20% of the tumor is remaining but will be followed up by MRIs after all the blood has cleared up. Again, I am exhausted after minimal exercise - almost all the time.
Would this tiredness be a familiar reaction? Some say "It's only been two months." Others say "You should feel better - It's been two months!". These are friends & family - not the medical community who just seem to write it down on their pads and not comment specifically.
Hi,
My mother had brain surgery with chemo in 1987. She was diagnosed with Anaplastic Astrocytoma Grade III. They could only resect part of the tumor so the other is still there. But I just wanted to let you know that in our experience you will be off and on tired for a while it really depends on your body. But I can tell you in our case it did get better. One thing my mom would do is slowly start excercising a little at a time and gradually work up. Now if it was a long day for her or she was having one of the bad days it was okay to skip that day. And just to tell you the type of tumor she has the survival rate for a full resection is only 20% of patients for 5 years. My mom was given at most 2-3 years and they were not going to be good but she kept up her faith and pushed past. Take care and hope you feel better soon. Michelle
My mother had brain surgery with chemo in 1987. She was diagnosed with Anaplastic Astrocytoma Grade III. They could only resect part of the tumor so the other is still there. But I just wanted to let you know that in our experience you will be off and on tired for a while it really depends on your body. But I can tell you in our case it did get better. One thing my mom would do is slowly start excercising a little at a time and gradually work up. Now if it was a long day for her or she was having one of the bad days it was okay to skip that day. And just to tell you the type of tumor she has the survival rate for a full resection is only 20% of patients for 5 years. My mom was given at most 2-3 years and they were not going to be good but she kept up her faith and pushed past. Take care and hope you feel better soon. Michelle
Well, steroids can cause muscle weakness, so perhaps that's all it is. Eventually your body will recover, but drug effects can do a number on a person. You can try more protein, like eggs and milk, to build back your strength. And anytime you have brain surgery, there are lingering effects...which is the case following lots of surgeries. I mean, they can't take out part of your bowels, for example, and then you go run a marathon, and I'm exaggerating to prove a point. As for depression, from what I understand, that really is from an operation on the brain. Your head has been invaded, it's been bleeding, it's shut down a little bit to recover. I don't know what your "minimal exercise" is, but just a short easy walk down the street and back, a few days a week, is all you should be doing until you start feeling more like yourself. You've had brain surgery, which is no small thing!
I am glad to see in "print" your statement of "it is your right to ask the doctor about your condition. I wish my mother's neurologist felt that way. Instead, he says he is the doctor and basically we are to accept that fact. Every question we asked him at her last appointment was rebuffed.
That is why we are working to get her in to see a neurosurgeon ASAP!
That is why we are working to get her in to see a neurosurgeon ASAP!
Hi.
I will be perfectly honest with you and tell you that it would be extremely difficult for us to determine whether 2 months has been long enough for recovery or is too short a time still. There are numerous factors to consider when making assumptions on the time of recovery, and these include the following:
- type of surgery performed
- complications during and after surgery
- severity of disorder for which the surgery was performed
- extent of brain involvement of primary disorder
- general well being of patient prior to and after the surgery
Easy fatigue may or may not be related to the surgery, and would have to be evaluated for other causes as well. It would be highly advisable to consult your neurosurgeon and ask him/her about this symptoms as well as what to expect about your recovery process. Do not be afraid to ask about your condition, as it is your right to do so.
Hope this helps.
I will be perfectly honest with you and tell you that it would be extremely difficult for us to determine whether 2 months has been long enough for recovery or is too short a time still. There are numerous factors to consider when making assumptions on the time of recovery, and these include the following:
- type of surgery performed
- complications during and after surgery
- severity of disorder for which the surgery was performed
- extent of brain involvement of primary disorder
- general well being of patient prior to and after the surgery
Easy fatigue may or may not be related to the surgery, and would have to be evaluated for other causes as well. It would be highly advisable to consult your neurosurgeon and ask him/her about this symptoms as well as what to expect about your recovery process. Do not be afraid to ask about your condition, as it is your right to do so.
Hope this helps.
Hi Mrs. Ricardo,
Maybe that Neurontin that Pisces reported would help you. Thanks too for your feedback on the pain issue. By the way, I came across a note this morning I made that said either the title or the subtitle to the book you provided about the doctor that had a brain tumor is "I had brain surgery, what's your excuse," I think it said, becuz naturally now I cannot find the note, which is part of MY disability situation. The physical discomfort I'm in from a bunch of syndromes and disorders mixes me up. Anyhooo, jus wanted to git that in there in case we've read two diff books. I am really glad you are going to get a second opinion, because you might get some good help with these terrible things happening to you. I wish you well.
GG
GG
Maybe that Neurontin that Pisces reported would help you. Thanks too for your feedback on the pain issue. By the way, I came across a note this morning I made that said either the title or the subtitle to the book you provided about the doctor that had a brain tumor is "I had brain surgery, what's your excuse," I think it said, becuz naturally now I cannot find the note, which is part of MY disability situation. The physical discomfort I'm in from a bunch of syndromes and disorders mixes me up. Anyhooo, jus wanted to git that in there in case we've read two diff books. I am really glad you are going to get a second opinion, because you might get some good help with these terrible things happening to you. I wish you well.
GG
GG
A typo up there......"I too HAD A BRAIN hemorage like your partner" it should have read.
Since the operation, I experienced excruiting headaches which brought me to the emergency room of another hospital. If you Google "Brain Surgery Headaches" you'll find this is not unusual but mine were very painful (9 on scale of 10 as they ask).
I too had a My partner brain hemmhorrage, requiring a 2nd operation before leaving the hospital. It's been a nightmare. Now I face the possibility of having radiation therapy though the tumor was benign.
Gregg, I visited with the NeuroSurgeon a few days ago -- it's now been 2 1/2 months and the fatigue and tiredness overwhelm me at times, so much so that I can't keep my eyes open. He feels, in an ideal situation, this should have passed by now and the Endocrinologist report shows all blood-work normal.
...I am in the process of arranging with another hospital for a 2nd opinion. I feel that is necessary at that point.
I too had a My partner brain hemmhorrage, requiring a 2nd operation before leaving the hospital. It's been a nightmare. Now I face the possibility of having radiation therapy though the tumor was benign.
Gregg, I visited with the NeuroSurgeon a few days ago -- it's now been 2 1/2 months and the fatigue and tiredness overwhelm me at times, so much so that I can't keep my eyes open. He feels, in an ideal situation, this should have passed by now and the Endocrinologist report shows all blood-work normal.
...I am in the process of arranging with another hospital for a 2nd opinion. I feel that is necessary at that point.
Hiya,
Yes my partner suffered head pain before taking the Neurontin, which he still has. Hes not bothering at that as his energy level back to normal. His GP has told him he may feel them stopping being effective but in that case he will up the dosage. The hospital had put him on Lyreca?? but they were of no use what so ever.
Hope this helps
Pisces
Yes my partner suffered head pain before taking the Neurontin, which he still has. Hes not bothering at that as his energy level back to normal. His GP has told him he may feel them stopping being effective but in that case he will up the dosage. The hospital had put him on Lyreca?? but they were of no use what so ever.
Hope this helps
Pisces
Dear Pisces,
Wow. Neurontin is for nerve problems. Hmmmm. Just curious, for my own health theories, did your partner have any pain with his being tired?
Dear Mrs. Riccardo,
Same question to you, have you experienced pain since your operation?
Thanks. This has been an interesting thread. GG
Wow. Neurontin is for nerve problems. Hmmmm. Just curious, for my own health theories, did your partner have any pain with his being tired?
Dear Mrs. Riccardo,
Same question to you, have you experienced pain since your operation?
Thanks. This has been an interesting thread. GG
My partner after his brain hemmhorrage suffered extreme tiredness after very little exercise and being a man of 38 felt very reluctant to give into it and rest in bed, or take pills. He has suffered with this since June 07 and only last week resigned himself to going to the doctor as he doesnt have another appointment with his neurologist til May. His doctor prescribed him NEURONITIN CAPS 300mgs. The change in his energy levels is amazing. Even his temprement has changed. Hes more like his old self. Hope you feel more like yourself soon.
Dear Mrs. Riccardo,
I so appreciate you reminding me of the name of that book and the author. That was a fascinating tale, wasn't it?! So, don't you think you sound like that woman a little bit, on the energy issue? Or maybe for you it was the steroids, which can tire a person.
Well, in any case, even tho it could be worrisome, I just wanted to reassure you that it's probably just what the physician assistant said, to be expected. But I thought of something else, which you said you had a lot of bleeding, so perhaps you are weak from the loss of blood. Therefore, while you wait for your doctor appointment, you could power up on your proteins, eggs, steak, that sort of thing, see if it helps. Also I thought it might be an infection going on in general, since it was such an involved operation, which is a good reason to see the doc. Of course the MRI should reveal any further head problems, if any.
Anyhow, I got real depressed a couple summers ago, coupled with being really tired, and it was a medication I was on, not to mention the way depression works. Seems like that lady in the book got that way, too. I drag out all these things because if the doc says you're okay when you see him, these ideas might be worth looking more closely at.
GG
I so appreciate you reminding me of the name of that book and the author. That was a fascinating tale, wasn't it?! So, don't you think you sound like that woman a little bit, on the energy issue? Or maybe for you it was the steroids, which can tire a person.
Well, in any case, even tho it could be worrisome, I just wanted to reassure you that it's probably just what the physician assistant said, to be expected. But I thought of something else, which you said you had a lot of bleeding, so perhaps you are weak from the loss of blood. Therefore, while you wait for your doctor appointment, you could power up on your proteins, eggs, steak, that sort of thing, see if it helps. Also I thought it might be an infection going on in general, since it was such an involved operation, which is a good reason to see the doc. Of course the MRI should reveal any further head problems, if any.
Anyhow, I got real depressed a couple summers ago, coupled with being really tired, and it was a medication I was on, not to mention the way depression works. Seems like that lady in the book got that way, too. I drag out all these things because if the doc says you're okay when you see him, these ideas might be worth looking more closely at.
GG
Dear BG,
I have read a book about a woman who was a physician, who had brain surgery, and had a really tough time, never was quite normal afterwards, but managed to live a reasonably happy life. Forgive me, I just cannot recall the name or the author, but the book exists. It is also possible I read it in the book section of the Reader's Digest. A librarian can direct you on how to locate it. It's nonfiction, might be in the biography section, or in the medical section.
But the main point I wanted to bring to your attention, was her observation that no one told her brain surgery would change her. For some, it is minor, others major, but that anytime they operate on your brain, you can expect things might not return to the way they were.
What is sad about your son's situation is he didn't just level off somewhere and then have the opportunity to find a way to cope. This doctor lady has to keep notes all over the house just to make it out the door, she has to keep a tape recorder with her so she doesn't get lost going places, that sort of thing. But she was a professional when all this happened, so she was already accustomed to life's changes, so perhaps her situation did not frighten her as much as it may have scared your son.
Hearing voices and being delusional, as I'm sure you've studied up a lot on that kind of mental illness, for some patients drugs can help a lot, to where some can live in a halfway house and do simple work. But I can't understand why he got better and THEN got worse. It would be great if you could get a physician to do a special consult on your son, perhaps order a scan, do a full workup on his brain functioning situation. Perhaps something happened specifically to make him worse, and maybe he can uncover this, to help explain why he's this way, and even offer newer treatments to make him more comfortable. Maybe his condition is as a result of the surgery, maybe there was a complication, maybe something unrelated, which is why it would be good to have someone with fresh eyes look objectively at him.
I know, this is really not much help, you've probably done all the things I have suggested, but I at least wanted to let you know there is a book out there about this sort of thing by someone who went through something similar, altho had a relatively better outcome.
I have read a book about a woman who was a physician, who had brain surgery, and had a really tough time, never was quite normal afterwards, but managed to live a reasonably happy life. Forgive me, I just cannot recall the name or the author, but the book exists. It is also possible I read it in the book section of the Reader's Digest. A librarian can direct you on how to locate it. It's nonfiction, might be in the biography section, or in the medical section.
But the main point I wanted to bring to your attention, was her observation that no one told her brain surgery would change her. For some, it is minor, others major, but that anytime they operate on your brain, you can expect things might not return to the way they were.
What is sad about your son's situation is he didn't just level off somewhere and then have the opportunity to find a way to cope. This doctor lady has to keep notes all over the house just to make it out the door, she has to keep a tape recorder with her so she doesn't get lost going places, that sort of thing. But she was a professional when all this happened, so she was already accustomed to life's changes, so perhaps her situation did not frighten her as much as it may have scared your son.
Hearing voices and being delusional, as I'm sure you've studied up a lot on that kind of mental illness, for some patients drugs can help a lot, to where some can live in a halfway house and do simple work. But I can't understand why he got better and THEN got worse. It would be great if you could get a physician to do a special consult on your son, perhaps order a scan, do a full workup on his brain functioning situation. Perhaps something happened specifically to make him worse, and maybe he can uncover this, to help explain why he's this way, and even offer newer treatments to make him more comfortable. Maybe his condition is as a result of the surgery, maybe there was a complication, maybe something unrelated, which is why it would be good to have someone with fresh eyes look objectively at him.
I know, this is really not much help, you've probably done all the things I have suggested, but I at least wanted to let you know there is a book out there about this sort of thing by someone who went through something similar, altho had a relatively better outcome.
After my son had his tumor removed from his brain (about 10 years ago) He was unable to cencentrate as he used to, so he became disabled. Right after the chemo and radiation, he had some dillusional spells, then he bounced back to what appeared to be normal. But he never was actually normal agin. He was unable to work, he lost all his friends, and ended up being paranoid of everyone and every thing. As 10 years went by he got worse with each passing day. He ended being dillusional and hearing voices. Due to all this he ended up in a mental institution.
The tumor was removed at the Dartmouth Hospital. But since he got worse within the 10 years, that hospital and the doctor Marc Pipas & his team) want nothing more to do with him.
If anyone has any experience with this sort of behaviour please feel free to email me a ***@****
Or visit my journal on (some of the early entries are about myself). From late July 2007, it's all about my son.
http://placesdelphi689.spaces.live.com/
The tumor was removed at the Dartmouth Hospital. But since he got worse within the 10 years, that hospital and the doctor Marc Pipas & his team) want nothing more to do with him.
If anyone has any experience with this sort of behaviour please feel free to email me a ***@****
Or visit my journal on (some of the early entries are about myself). From late July 2007, it's all about my son.
http://placesdelphi689.spaces.live.com/
I know it's been awhile, this is from the opening poster. I have an appointment with the surgeon in 2 weeks and with an Endocrinologist in one week.
From what the doctor's assistant told me, tiredness and fatigue is to be expected. I emphasize that Dr. Godofrido is right
and he would have had to know more before offering an opinion.
When I see the surgeon and hear his opinion, I will get back to all of you and let you know.
From what the doctor's assistant told me, tiredness and fatigue is to be expected. I emphasize that Dr. Godofrido is right
and he would have had to know more before offering an opinion.
When I see the surgeon and hear his opinion, I will get back to all of you and let you know.
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