newly diagnosed, a few months after spinal cord surgery

[BetsyB]

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

 

[lgelb]

Betsy, my husband donated his brain and others here have as well. It's a good thing.

We will be here, as you say, as your questions become more practical.

I do not think there is anything actionable in what happened with you. There is no anesthesia that could have delayed progression of the disease, at root, and you had fascics before the surgery. Some people think a particular anesthesia drug helped them temporarily but that is unproven and so not getting it, even if it was a possibility for that procedure, cannot be a legal harm.

Welcome.

Best,
Laurie

 

[Atsugi]

Betsy, let me talk about donation. My wife wanted to donate her brain and brain stem to research, so we signed up early and they gave us a phone number to call when the time came. Then, when she died at home, I made two phone calls, one to the donation place and the other to the funeral home. The funeral home came and took the body, then transferred it to the donation people. A few days later, the body was returned and we had an open casket funeral. A few months later, I received a letter from a researcher telling me what they had learned about my wife's brain. All in all, donation was a positive experience.

 

[BetsyB]

Betsy, my husband donated his brain and others here have as well. It's a good thing.

We will be here, as you say, as your questions become more practical.

I do not think there is anything actionable in what happened with you. There is no anesthesia that could have delayed progression of the disease, at root, and you had fascics before the surgery. Some people think a particular anesthesia drug helped them temporarily but that is unproven and so not getting it, even if it was a possibility for that procedure, cannot be a legal harm.

Welcome.

Best,
Laurie

Well, that's not exactly what i am talking about in terms of legal harm. The fascics present before the surgery were either from als or from another cause. The neurologist said they must be diagnosed before the surgery. That must be standard practice for neurologists whose patients undergo neurosurgery. The harm was that the neurosurgeons did not take appropriate care before the surgery as the neurologist said that they should. that may be malpractice.
This is because maybe the very long microscopic neurosurgery triggered the ALS, as i have read elsewhere the motor neurons may die as a reaction to some kinds of anesthesia, and spinal surgery of that sort will obviously need very strong anesthesia. If they had diagnosed ALS before the surgery, couldn't they have considered less harmful types of anesthesia?
A family I know had someone who nearly died and then became permanently disabled from surgical malpractice at the same hospital where i had my neurosurgery, so i am extra suspicious of their procedural shortcomings.

 

[affected]

This is because maybe the very long microscopic neurosurgery triggered the ALS, as i have read elsewhere the motor neurons may die as a reaction to some kinds of anesthesia, and spinal surgery of that sort will obviously need very strong anesthesia. If they had diagnosed ALS before the surgery, couldn't they have considered less harmful types of anesthesia?

Hi Betsy and welcome to the family. I wish we were not welcoming you of course, but here you are.

Can you provide us with links to the source of what you have read on this, as I'm not aware of it, so can't even begin to answer your concern.

You will find great support here.

 

[lgelb]

You can certainly pursue it, and I don't claim to know Israeli malpractice case law, but I don't see how the origin of the fascics could have been known definitively pre-surgery, so I'd spend my limited time moving forward, just my two cents. There is no case law or medical literature of which I am aware supporting the notion that surgery triggered ALS. As to the anesthesia selected, there will be no "standard of care" toward motor neuron protection of which I am aware, either.

Best,
Laurie

 

[BetsyB]

Hi Betsy and welcome to the family. I wish we were not welcoming you of course, but here you are.

Can you provide us with links to the source of what you have read on this, as I'm not aware of it, so can't even begin to answer your concern.

You will find great support here.

I read one post here on the forums. I don't remember where it was, but let me quote from it here.
My husband was diagnosed in 2008 and had rotator cuff surgery a few years prior (same arm that was affected by ALS first). At the diagnosis appointment, we were told that he was not to have any other surgeries unless they spoke with the anesthesiologist to tell him/her what medications my husband could have. We were told there was a suspicion that a medication that is used to paralyze the motor neurons during surgery, which is the usual protocol, could unfortunately in some people cause bad results afterward. In my opinion, the medication possibly reacts differently to people who are predisposed to motor neuron diseases.
....
Also, I had a long conversation with a social worker from Israel's main NGO that supports ALS patients, and she told me that they were seeing a lot of ALS cases after surgery.

On the other hand, a professor of neurology at TAU medical school, who examined me yesterday, said "surgery does not cause ALS." I do not necessarily believe her because she can only state causes of ALS if there is research to back her up, and so far there is no research on this, I presume. However, I found by googling that when ALS patients undergo surgery, special care must be taken with the type of anesthesia.
Here is a report Spinal anesthetic management for discectomy in a patient with amyotrophic lateral sclerosis -A case report-
One sentence from the abstract:
But neuroaxial anesthesia may exacerbate pre-existing neurologic disease [2].
This report focuses on epidural spinal anesthesia, it seems, (and that is not what I had) but I wonder what would come up if an expert dug deeper in the literature about the effects of anesthesia on the progression of ALS.


I actually had two major surgeries last year, the first was in July (sleeve gastrectomy) and the ALS started after that but before the spinal cord surgery in December. the neurosurgeons were warned to check the causes of my fascics and pyramidal signs before they operated, but they did not.

Thanks for your interest in this topic.

Betsy

 

[affected]

Thanks Betsy.
It seemed that the link they provided to back that up was for a case of someone with MS. ( follow footnote number 2)

It also seemed that the article was talking about the breathing issues PALS have and the extra risk this puts them at for a GA.
So the report was really talking about using epidurals.
I didn't see anything there that was saying a GA could cause ALS, but was talking about breathing risks of a GA.

You don't seem to be reporting that you had any kind of breathing episode during the surgery?

I think we all desperately want them to find a cause, leading to a cure.

My husband had never had surgery in his life. In fact he had never been in a hospital for himself, he had never even had blood drawn and didn't even know his blood type. He had been incredibly healthy and fit all his life, and then was struck with ALS.

There are lots of theories on causes, and I'm sure that there are multiple causes that may be linked to the different onset types.

A problem that can happen with forums too is that someone can type a post saying they suspect or believe something, and then for years after, people quote it as gospel.

As Laurie said, there are also people who swear that certain anaesthetics completely reverse some of their symptoms, albeit temporarily. There is no real medical backup for this, but it seems to happen as it is reported.

I'm truly sorry for the long and multi-surgery road you have been on. I can only wonder what I would be thinking in your situation too. The medical profession know a lot, but they don't know even half what we wish they did know I'm afraid.

 

[Grace89]

Betsy.
I just saw your comment about having the gastric sleeve surgery last year. This really interests me because I had gastric bypass surgery in March. My symptoms started a few months after the surgery. It has caused hesitation from my Drs because they want to think it is something related to the surgery but nothing can be found.

 

[BetsyB]

Hello Grace
Thanks for your comments. Oh, how interesting but terrible!
My sleeve gastrectomy was done in Israel where i live, and here the government pays for many thousands of such surgeries. In my case I seem to have gained a lot of weight suddenly in my fifties, probably due to some autoimmune disease that remained undiagnosed.
the hospitals that perform the surgeries are like production lines, every day another one or two surgeries, etc.
I am focused on the anesthesia because the anesthesiologist for my surgery, who i met when on the gurney headed into the OR, scared the living daylights out of me just by his awkward manner and rough touch, and then there were problems as i was coming to, when i did not start to breathe properly, so he shoved the apparatus/tube down my throat repeatedly while i was half awake, while others also slapped my back and so forth to get me to breathe. it was a horrible memory and i have made a surgical malpractice claim against him, which is yet to resolve. (however i must note that the rest of the surgical and hospital staff were truly top-notch and my surgery was very successful, and I have lost 70 lbs so far since last July). of course the anesthesia for stomach surgery must be strong enough to immobilize all motor neurons for voluntary and the stomach's involuntary movements.
i could walk fine after the surgery but my symptoms started a few months later and then i had MRIs which revealed a tumor in my spinal cord that caused me to lose balance, apparently, due to spinal cord compression. but at the same time maybe there were symptoms of als starting, certainly i had light fascics around the time of those MRIs and i had pyramidal signs. so something was already going on with upper motor neurons and lower motor neurons afaik.
then i underwent this very tricky spinal cord surgery which means i was really paralyzed for many hours with anesthesia.
two days ago i did the US govt CDC surveys of ALS patients and it was obvious from the survey questions that some govt scientists suspect herbicides and pesticides, plus many other chemicals, as environmental toxins that can possibly cause ALS. I happen to have been exposed to agrichemicals during my fifties (agrichemicals that are since in the process of being banned), and also had many head injuries, so the cause(s) of my ALS might be complex, and of course may also include other factors unknown to me. but I think about how pesticides and herbicides are designed to interfere with the basic biological processes of bugs and plants, including the nervous systems of bugs, and how there is some distant parallel to the function of anesthesia that interferes temporarily with our nervous system functions. so i wonder if anesthesia is poison to motor neurons that may already be in distress. of course this speculation carries no weight of evidence at all, except anecdotal, so we are on our own with our thoughts. i wish i could spark some research and if anesthesia is found to be a cause, we would have someone to sue for pain suffering and eventually wrongful death.

 

[affected]

It's awful how many things you have been through Betsy.

My husband Chris never had any kind of surgery or anaesthetic in his life, he had never been a patient in a hospital, and had never even been sick enough to ever have a needle to draw blood for anything.

I think they are a long way from finding a single cause for ALS, and I suspect there are multiple cause and risk factors, along with possibly genetic factors.

Many PALS have been extremely healthy and active all their lives and had little or no surgery before ALS. I guess it makes it very hard for researchers, and is why the surveys they do are so extensive as they try to find something in common.

 

[Kimmad]

Sounds like, rather than a cause, in some people surgery (or the anesthesia, or whatever it is) may just speed up the progression of ALS in someone already predisposed to the disease. That's my take, anyway. It seems that a lot more research needs to be done on the topic before we can say anything about cause and effect.

Kim

 

[Nuts]

Betsy, we have been cautioned by our well-known and respected neurologist (ALS specialist) that surgery (or any insult to the body, to include falls and other injuries) can speed up the course of ALS. My husband was advised not to have back surgery because of that, but his pain was so unbearable that he opted to risk a faster progression rather than be paralyzed with his existing pain. He walked in for the surgery and never walked independently again.

You would need to determine for yourself whether you would have gone through with the surgery had you known the risk.

Unfortunately, the choices that remain to PALS are not always good ones...

Becky