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Neurology (Expert Forum)
Severe Cognitive Problems
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.
Severe Cognitive Problems
by Nancy__0__0, May 13, 1998 12:00AM
I want to thank you for this forum. I do not have anyone I can turn
to for help as I'm not even sure if I'm asking the proper questions.
Antecedent Action:
My older brother who is now 48 years old originally had a cyst on the
pituitary gland in 1960. Steve came walking down the
stairs sideways and when my Mother asked why, he replied---because I
see two of you. My folks immediately took him to Chanute Air Force
Base where he was put on a plane to Walter Reed Army Hospital in D.C.
He was operated on the next day--successfully. This was at a time when
they lifted the scalp completely off the head and left terrible scars
starting at the right eye and continued back behind the right ear.
Then there were the two 2" scars down the back of his head. He has been
taking all kinds of medicine since then. I do know that Cortef is
one of them. A diagnosis of diabetes insipidus (sp?) was presented.
Present Time:
Unfortunately, About 3 years ago Steve did not tell anyone that
he started having the same type headaches he had when he was 10.
He evidently had them for over a year. So, of course, one day
his roommate found him on the floor of his bedroom.
He was then taken by ambulance to the Kaiser facility
in Redwood City where they do that type surgery. Unfortunately,
he did not come out of the surgery 100% this time. The surgeon told me he had
had a stroke. Oops! I don't know, I cannot prove it. I suspect it is true.
But Steve has no cognitive memory skills; no short term memory but certainly
can remember things that happened in 1950-1970 time period. They then
had to go back in a second time and they put a shunt in to take
care of a "small problem" .
He then had six weeks of radiation with four days being 15-20 minutes
and the fifth day 45 minutes. He can not have any type of radiation
ever again per the doctor's orders.
The doctors also told me if it comes back again, they will "make him
comfortable". He is on several medicines, still on cortef.
Now that you've read the novel above, my questions are:
1. Is this tumor the type to come back again, since there was
a 35 year gap in occurences? But, he had two in a short time.
2. I know he will never get any of his memory back, but will what
he has errode faster as he gets older (does that make sense?)?
3. Some of the medicine he is on are considered steriods. Now,
I have been led to believe that continued use of this stuff is
harmful and can lead to death. Is that the case with prescribed
medicine? Is this a lose-lose situation; he keeps taking it,
he dies or if he stops taking it he dies?
The other thing is that he suffers from sleep apnea. He had to have
a breathing machine for a while after they did the sleep test and
found that he had over 300 occurances per night. The doctor went
crazy and thought the test was wrong. They did it again; same results.
So, he had a breathing machine and mister for night time. Then,
his roommates found him on his floor once again (seems to be his
favorite place) and got him to the hospital just in time for an
emergency treacheotomy. Ended up with the treacheostomy tube for
the past year. They did surgery in September for a T&A and then
moved the hyoid (sp?) bone forward and zapped the uvula (again sp?).
Now, he just this past week had the treach tube taken out and
the hole is supposed to be closing and he will only have a small
scar.
I realize this ended up being very long and narrative but what
will the future hold for him (and me since I'm his primary care
giver). Besides, you don't even want to get into my
neurological medical problems!
Thank you again.
---------------------------------------------------------------------------------------------------------------------
Hello Nancy,
Common childhood tumors of the pituitary gland region include craniopharyngeomas and pitutary adenomas. Craniopaharyngiomas are notoriuous for being locally invasive and tough to completely excise and grow slowly enough that it can be many years between recurrences. Above and in front of the pituitary gland region are some areas of the brain that are critically important for memory formation and cognition, called the gyrus rectus, septal area, and basal forebrain. Damage to these areas can produce a permanent amnestic state (permanent inability to form new memories). Diabetes insipidus is a condition where the body dumps out water due to lack of antidiuretic hormone, which is produces in the hypothalamus (the part of the brain right next to the pituitary gland) and the back part of the pituitary gland, which extends directly from the hypothalamus. This can be a very serious and even fatal problem if not controlled. The replacement of antidiuretic hormone, cortisone, and thyroid hormone, and sex hormones like testosterone in men is a very important part of the treatment of the syndrome of panhypopituitarism, which is the complete absence or deficiency of all functions of the pituitary gland due to its being destroyed or severely damaged by a tumor, hemorrhage, or other means. Strokes are not usually a complication of pituitary tumors, although there are arteries nearby the gland. Usually people go blind and have lots of other major problems that lead to the tumors treatment before there is ever any chance of an artery getting compressed by the tumor and causing stroke. Unfortunately, if your brother has had memory problems for 20+ years, the likelihood of this improving is very small to none. Radiation itself may cause delayed damage to the parts of the brain that were radiated, even 15 or 20 years later. We wish you well in dealing with the challenges of caring for a loved one with such a disabling and chronic problem. Please remember that information we provide on this forum is intended for general informational purposes only and that the actual diagnosis and treatment of your brother's specific medical condition should be strictly in conjunction with his treating physician(s). If he would be interested in a formal evaluation at the Cleveland Clinic regarding his condition and long term prognosis, our number is 1-800-223-2273 extension 4559. I would suggest Dr. Bruce Cohen, one of our neurooncologists for such a complex case. We hope you find the information helpful.
to for help as I'm not even sure if I'm asking the proper questions.
Antecedent Action:
My older brother who is now 48 years old originally had a cyst on the
pituitary gland in 1960. Steve came walking down the
stairs sideways and when my Mother asked why, he replied---because I
see two of you. My folks immediately took him to Chanute Air Force
Base where he was put on a plane to Walter Reed Army Hospital in D.C.
He was operated on the next day--successfully. This was at a time when
they lifted the scalp completely off the head and left terrible scars
starting at the right eye and continued back behind the right ear.
Then there were the two 2" scars down the back of his head. He has been
taking all kinds of medicine since then. I do know that Cortef is
one of them. A diagnosis of diabetes insipidus (sp?) was presented.
Present Time:
Unfortunately, About 3 years ago Steve did not tell anyone that
he started having the same type headaches he had when he was 10.
He evidently had them for over a year. So, of course, one day
his roommate found him on the floor of his bedroom.
He was then taken by ambulance to the Kaiser facility
in Redwood City where they do that type surgery. Unfortunately,
he did not come out of the surgery 100% this time. The surgeon told me he had
had a stroke. Oops! I don't know, I cannot prove it. I suspect it is true.
But Steve has no cognitive memory skills; no short term memory but certainly
can remember things that happened in 1950-1970 time period. They then
had to go back in a second time and they put a shunt in to take
care of a "small problem" .
He then had six weeks of radiation with four days being 15-20 minutes
and the fifth day 45 minutes. He can not have any type of radiation
ever again per the doctor's orders.
The doctors also told me if it comes back again, they will "make him
comfortable". He is on several medicines, still on cortef.
Now that you've read the novel above, my questions are:
1. Is this tumor the type to come back again, since there was
a 35 year gap in occurences? But, he had two in a short time.
2. I know he will never get any of his memory back, but will what
he has errode faster as he gets older (does that make sense?)?
3. Some of the medicine he is on are considered steriods. Now,
I have been led to believe that continued use of this stuff is
harmful and can lead to death. Is that the case with prescribed
medicine? Is this a lose-lose situation; he keeps taking it,
he dies or if he stops taking it he dies?
The other thing is that he suffers from sleep apnea. He had to have
a breathing machine for a while after they did the sleep test and
found that he had over 300 occurances per night. The doctor went
crazy and thought the test was wrong. They did it again; same results.
So, he had a breathing machine and mister for night time. Then,
his roommates found him on his floor once again (seems to be his
favorite place) and got him to the hospital just in time for an
emergency treacheotomy. Ended up with the treacheostomy tube for
the past year. They did surgery in September for a T&A and then
moved the hyoid (sp?) bone forward and zapped the uvula (again sp?).
Now, he just this past week had the treach tube taken out and
the hole is supposed to be closing and he will only have a small
scar.
I realize this ended up being very long and narrative but what
will the future hold for him (and me since I'm his primary care
giver). Besides, you don't even want to get into my
neurological medical problems!
Thank you again.
---------------------------------------------------------------------------------------------------------------------
Hello Nancy,
Common childhood tumors of the pituitary gland region include craniopharyngeomas and pitutary adenomas. Craniopaharyngiomas are notoriuous for being locally invasive and tough to completely excise and grow slowly enough that it can be many years between recurrences. Above and in front of the pituitary gland region are some areas of the brain that are critically important for memory formation and cognition, called the gyrus rectus, septal area, and basal forebrain. Damage to these areas can produce a permanent amnestic state (permanent inability to form new memories). Diabetes insipidus is a condition where the body dumps out water due to lack of antidiuretic hormone, which is produces in the hypothalamus (the part of the brain right next to the pituitary gland) and the back part of the pituitary gland, which extends directly from the hypothalamus. This can be a very serious and even fatal problem if not controlled. The replacement of antidiuretic hormone, cortisone, and thyroid hormone, and sex hormones like testosterone in men is a very important part of the treatment of the syndrome of panhypopituitarism, which is the complete absence or deficiency of all functions of the pituitary gland due to its being destroyed or severely damaged by a tumor, hemorrhage, or other means. Strokes are not usually a complication of pituitary tumors, although there are arteries nearby the gland. Usually people go blind and have lots of other major problems that lead to the tumors treatment before there is ever any chance of an artery getting compressed by the tumor and causing stroke. Unfortunately, if your brother has had memory problems for 20+ years, the likelihood of this improving is very small to none. Radiation itself may cause delayed damage to the parts of the brain that were radiated, even 15 or 20 years later. We wish you well in dealing with the challenges of caring for a loved one with such a disabling and chronic problem. Please remember that information we provide on this forum is intended for general informational purposes only and that the actual diagnosis and treatment of your brother's specific medical condition should be strictly in conjunction with his treating physician(s). If he would be interested in a formal evaluation at the Cleveland Clinic regarding his condition and long term prognosis, our number is 1-800-223-2273 extension 4559. I would suggest Dr. Bruce Cohen, one of our neurooncologists for such a complex case. We hope you find the information helpful.
