My husband had brain surgery. most likely in Wisconsin, in the early 1950s, We do not know why they removed part of his cerebellum. Many many doctors have reviewed the results. Brain is missing, It didn't get out and walk off by itself.

He has celiac disease , it may have been for that
https://www.kqed.org/futureofyou/442626/lobotomies-were-once-used-to-treat-this-gut-disease-part-of-a-shameful-medical-history

it may also have contributed to brain mapping studies,

His parents refuse to tell him what happened. he was abandoned by his mother at 3 and a half.

We were wondering if anyone had any information on any connections between the Mormon Church and pioneering or suspect brain surgeries of the 1950s. Any other Mormon brain surgery survivors?

What did they think they were doing? Did these surgeries lead to any breakthrough developments? Why was he abandoned with no follow up?

Just for the record-brain surgery does not help celiac disease.

I have no knowledge of lobotomies to share, but I very much empathize with your husband, and with you, re: his brain surgery.

Totally different part of the body, but I have personal experience being part of (then new) medical intervention too.

Not anything near what your husband had inflicted on him, but I do have some understanding of the feelings.

I'd really like to know who volunteered these kids for this, why, what they hoped to accomplish and who was involved. He was transported from SLC to the East Coast for the procedure, then sent back to Utah.
Also why there was no long term follow up.
its seems wasteful to go to all the trouble of doing invasive dangerous brain surgery on an infant and then just dump him out into the wild.
Were any of these procedures related to the development medical devices?
How do these procedures relate to the studies going on in Montreal around the same time? Where is the data and why can't the research participants have access to it? How much money was made from the information gleaned these kids procedures?



Edited 4 time(s). Last edit at 08/14/2019 09:37PM by experimentsubject.

When your husband has tried to find his medical records, what happened?

So far the archivists have been very helpful with general information but if he was in a study his information was anonymized.

Regarding the excision of part of the cerebellum... That called for a doctor to make a diagnosis and to then explain the expected prognosis to result from the surgery. At some point that had to exist as words on paper.

After the surgery, there would have been a written record essentially explaining the physical outcome of the surgery. And then hopefully some notes about future possibilities.

The only 'archivists' who will be useful are those with control of the surgery records. If the surgery occurred in Wisconsin, why is there an expectation that Utah residents would have access to those records?

The records you seek may not currently be extant, even if you knew where to look for them.

And just maybe the brain surgery was completely independent of your husband's other, at that time, perceived maladies.


Regarding the use of the word "Lobotomy" in your thread title, why did you pick that word? Based on my degree in Lobotomies, issued to me by U. of Google two minutes ago, after seconds of study, no one would have performed a Lobotomy on an infant. So what's up with that?

Because that is the term one of his neurologists used to describe what he was looking at on the MRI.

Maybe it was done for any number of reasons, but without records we can never know for what or why.

Its incredible that a tiny child could have such advanced brain surgery in the 1950s and not find out about it until he was in his late 30s during scans that anything had been done, all because his family completely failed to inform him.

He is Joseph Smith's 5x grandson, did Joe have a congenital brain condition that gave him epilepsy?

Have you explored a possible history of epilepsy and/or srizures?

AnonInCali asks:
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> Have you explored a possible history of epilepsy
> and/or srizures?

It's the prospect of these "srizures" that disincline me from having a medical quack hammer an ice-pick in me frontal lobes.


I'd rather have a bottle in front of me than a frontal lobotomy.

>Have you explored a possible history of epilepsy and/or srizures?

Good suggestion. He has photosensitive epilepsy.

Does anyone know anything about the history of epilepsy treatment in Salt Lake City early 1950s?

Life-threatening intractable seizure or tumor (which can cause seizure) in a child might be an indication for "hemispherectomy" where a portion of the brain, left or right of midline, is excised - usually children do okay after this with the remainder of the brain taking over the tasks of the missing portion (adults in contrast fare poorly).

It is also possible that a portion of the brain simply did not develop; surprising how often a neuroimaging study will show a portion of the brain simply "not there at all" when, for example, the blood supply to that area never developed. Usually these folks have no symptoms, are in the scanner for something else, and the finding is incidental. This is often the case with the cerebellum.

Lobotomy involves severing bundles of neural fibers in the forward porting of the brain, nothing is removed.

Hope this is helpful in the quest

This is why someone we spoke to who does epilepsy support told us we need to get a neurosurgeon to look at the scans instead of a neurologist.
Lack of proper expert causes confusion.

Dr. No Wrote:
-------------------------------------------------------

>
> It is also possible that a portion of the brain
> simply did not develop; surprising how often a
> neuroimaging study will show a portion of the
> brain simply "not there at all" when, for example,
> the blood supply to that area never developed.
> Usually these folks have no symptoms, are in the
> scanner for something else, and the finding is
> incidental. This is often the case with the
> cerebellum.
>

Very helpful. We suspect that may be the case given apparent problems with other family members, and that would mean the scarring we are seeing is actually from some form of an early attempt a neuroimaging. Neuroimaging seems to have been very crude at that time and came with its own problems.

Thank you.

Epilepsy Surgery: Historical Highlights 1909–2009
https://onlinelibrary.wiley.com/doi/full/10.1111/j.1528-1167.2009.02043.x#ss16-title

On another interesting train of thought on this procedure just came into the inbox.

What, if any, involvement did the Mormon Church have with the development of Deep Brain Stimulation?

I understand that different groups had different theories on how to proceed with this therapy that has since progressed into being a valid treatment for Parkinsonism and depression.

I highly doubt it. The Mormons were mostly farming types back then. Think less science fiction and more hay pitching.

experimentsubject Wrote:
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> What, if any, involvement did the Mormon Church
> have with the development of Deep Brain
> Stimulation?
================================
No-kidding deep brain stimulation was not common-ish thing until the 1980's. This is because the procedure involves very precise 3-D placement of a deep electrode in a small target; that kind of precise triangulation and targeting was not accessible until computerized tomography; and CT wasn't possible until computers of sufficient power were developed. The targets were more forward in the brain, typically basal ganglia, with a case of hypothalamic stimulation to treat self-mutilation. In the procedure the electrode is placed but nothing removed.

If no-kidding cerebellum missing that may be more https://medizzy.com/feed/2218420 (or hypogenesis, incomplete development with less symptoms)

Mormons are more into sprinkling blessed olive oil and seem anti-science -- consider the lame response to DNA genetic and archaeological (non)evidence re: "Lamanite" origins and restricting member access to information - far stretch to think of these as being cutting-edge anything