Author Topic: Interesting paper and quote  (Read 95 times)

ANSydney

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Interesting paper and quote
« on: August 14, 2019, 06:22:16 pm »
I stumbled across an interesting paper and quote that I got and read from a fellow forum member early this year. Others may want to read the paper https://repository.ubn.ru.nl/bitstream/handle/2066/91391/91391.pdf?sequence=1

The interesting quote is "The rationale for all therapies was based on the concept of tumor progression with life threatening outcomes, as in other intracranial (malignant) tumors. Therefore, from the very beginning, therapy has always entailed surgical removal of the tumor. Some patients were not eligible for surgery because of their poor general condition, so they were followed without having had therapy. Strangely enough, many of these untreated patients lived long afterwards without any signs of tumor progression.14,15 Thus, early on there was already some doubt about the life threatening nature of the disorder and the need for invasive therapy"

lryan42

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Re: Interesting paper and quote
« Reply #1 on: August 15, 2019, 11:45:45 am »
Thanks for sharing this.  I was previously pretty gung-ho about getting this tumor "dealt with" but given mine's particularities that's not an option for me.  And now I am learning more and more than far fewer of these actually grow than was previously thought, and the hearing preservation odds seem significantly higher in the long run without any intervention.

As an aside (and I know it's a totally different issue, but...) this all reminds me of my back injury: I had a pretty big disc herniation and found that the stats for those who do surgery vs those who just wait are basically the same.  With those kinda odds, it seems far preferable to do nothing dramatic but instead want and watch and support one's body while it deals with the challenges.

Again, thanks.
2017 - Mild vestibular symptoms; lots of testing, misdiagnosis, and vestibular rehab
2018 - MRI w/o contrast: 4mm x 3mm x 2mm AN
2019 - MRI /w contrast: 5mm x 4mm x 3mm AN

My AN's location is inside the vestibule (rare) and not treatable w/o definitely going SSD; waiting and watching for now.

ANSydney

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Re: Interesting paper and quote
« Reply #2 on: August 15, 2019, 05:27:24 pm »
I had an ENT surgeon recommend surgery for my son that used to get recurring ear infections. The surgeon wanted to remove the tonsils and adenoids and put in ear grommets. Sounded drastic for something that would clear in a week. I researched the situation and decided to not proceed. After his recommendation, my son didn't get an ear infection again! I'm glad I researched the situation and didn't proceed with surgery.

Yes disc herniation surgery is statistically no better than no surgery. Someone at work who has disc herniation told me as much. I've heard of other surgery that fits into this category.

I think surgeons spend their time honing their surgical skills and not necessarily continually researching when to perform surgery. At least we all agree that if a tumor is no longer growing (or grows by no more than 3 mm from initial imaging) there is no need for surgery.

Measurement error is still a big concern. It's nice to do your own measurement and get a feel for where the measurement errors are.

With regards to tumor growth, see https://www.anausa.org/smf/index.php?topic=23404.msg979773728#msg979773728 . My conclusion based on the cited studies was "In summary, it appears that the evidence is that about 13% of tumors grow more than 2 mm".

 


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