BetsyB
Active member
- Joined
- Apr 6, 2016
- Messages
- 96
- Reason
- PALS
- Diagnosis
- 04/2016
- Country
- IL
- State
- AA
- City
- hadarom, israel
Hello all and thanks for being there. I was diagnosed two days ago.
My particular mystery is that i had the beginnings of ALS symptoms concurrently with an ependymoma tumor in my lumbar spinal cord and also crooked neck bones and a herniated disk in my neck. I am 59.
Neurologists had a hard time sorting out the signs and symptoms of these things.
I lost my balance and that can be symptomatic of both ALS and spinal cord tumor. I had fasciculations which might be benign, ALS, or possibly from neck problems.
Anyway, an orthopedic surgeon who was evaluating my neck problems saw the MRI that revealed the lumbar spinal tumor and he sent me directly to the ER in a bigger regional hospital in order to get into neurosurgery to remove it ASAP, as the longer the spinal cord is compressed by such a tumor, the less likely the spinal cord will snap back into place after the tumor is removed.
These neurosurgeons in the regional hospital heard that i had fasciculations, and my neurologist, who heads the neurology dept at a smaller local hospital, said that the cause of the fasciculations must be diagnosed before the spinal cord surgery. On his advice, I asked the neurosurgeons in the bigger hospital where I was already admitted to please send me a neurologist to evaluate the cause of the fascics and they refused and said "we think they are from your neck." Then I had the surgery and it removed the whole tumor. I was slightly better for a month or two, but then began getting progressive arm and hand weakness, and my balance got even worse. So when i finally got an appointment with a neuro-oncologist at an even bigger hospital, she immediately had me admitted for a diagnosis of the fascics / weakness / balance problem, and the neurologists here (where I am still admitted and waiting for transfer to rehab) concluded I have ALS.
(this is not in the US so i am dealing with a socialized medicine system that provides completely free treatment, thankfully)
My question is whether any of you here have heard anything about spinal cord surgery leading to ALS, and whether you think these neurosurgeons were negligent in not finding the cause of the fascics before the surgery. I have read that ALS patients require different types of anesthesia to keep the motor neurons safe.
Another question is whether any of you have arranged to donate your brain tissue for research. I want to do this (eventually!) and my ALS doctor wants my brain when the time comes. I like the idea of helping with the research this way. Anyway, i'd like to hear from others who have investigated this option for helping find causes and cures for ALS.
Later, as I face the practical problems of this disease, i am very much encouraged to know that i can participate in forums like this, were so many people combine to form a wonderful resource of support and good information.
Betsy Benjaminson
My particular mystery is that i had the beginnings of ALS symptoms concurrently with an ependymoma tumor in my lumbar spinal cord and also crooked neck bones and a herniated disk in my neck. I am 59.
Neurologists had a hard time sorting out the signs and symptoms of these things.
I lost my balance and that can be symptomatic of both ALS and spinal cord tumor. I had fasciculations which might be benign, ALS, or possibly from neck problems.
Anyway, an orthopedic surgeon who was evaluating my neck problems saw the MRI that revealed the lumbar spinal tumor and he sent me directly to the ER in a bigger regional hospital in order to get into neurosurgery to remove it ASAP, as the longer the spinal cord is compressed by such a tumor, the less likely the spinal cord will snap back into place after the tumor is removed.
These neurosurgeons in the regional hospital heard that i had fasciculations, and my neurologist, who heads the neurology dept at a smaller local hospital, said that the cause of the fasciculations must be diagnosed before the spinal cord surgery. On his advice, I asked the neurosurgeons in the bigger hospital where I was already admitted to please send me a neurologist to evaluate the cause of the fascics and they refused and said "we think they are from your neck." Then I had the surgery and it removed the whole tumor. I was slightly better for a month or two, but then began getting progressive arm and hand weakness, and my balance got even worse. So when i finally got an appointment with a neuro-oncologist at an even bigger hospital, she immediately had me admitted for a diagnosis of the fascics / weakness / balance problem, and the neurologists here (where I am still admitted and waiting for transfer to rehab) concluded I have ALS.
(this is not in the US so i am dealing with a socialized medicine system that provides completely free treatment, thankfully)
My question is whether any of you here have heard anything about spinal cord surgery leading to ALS, and whether you think these neurosurgeons were negligent in not finding the cause of the fascics before the surgery. I have read that ALS patients require different types of anesthesia to keep the motor neurons safe.
Another question is whether any of you have arranged to donate your brain tissue for research. I want to do this (eventually!) and my ALS doctor wants my brain when the time comes. I like the idea of helping with the research this way. Anyway, i'd like to hear from others who have investigated this option for helping find causes and cures for ALS.
Later, as I face the practical problems of this disease, i am very much encouraged to know that i can participate in forums like this, were so many people combine to form a wonderful resource of support and good information.
Betsy Benjaminson