Author Topic: My first round of due diligence.  (Read 1797 times)

daoisthere

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My first round of due diligence.
« on: September 10, 2017, 05:37:57 pm »
I believe that I have completed my first round of due diligence. Here are some of my findings.

1. An Acoustic Neuroma is really an overgrowth of Schwann Cells. 
    a. This overgrowth can be associated with many co-mobidities.  Especially Diabetes. And in some cases previous irradiation of the same location. Cancer treatment perhaps.
2. When the diagnosis says "fills the complete inner canal", either ear. It seems that the inner canal is empty. This might implied by the word canal A better choice of word could be tunnel or cavity. The tunnel passage is towards the Medulla Oblongata. Is the definitive tunnel for the Vestibular Schwannoma nerves 8th thru 5th.
3. The Schwann cell overgrowth encapsulates the nerves.
4. The consistency of the schwann cells might be sticky. This is an unknown until the actual time of the procedure.

As you can see. This can be very problematic. Since the nerves are literally surrounded by the schwann cells, it would be quite impossible to isolate them. They would be potential collateral.

The goals of team are as follows.

a. Stop the growth - (Clue: out of control diabetes - not good:  any kind of fibrosis including radiation kind fibrosis:  not good)
b. Preserve the facial - 7th nerve.
c. preserve balance.
d. Preserve Hearing - 8th nerve

If you elect surgery.  If the schwann cell are gummy... The material will have to be scraped off.  With possible collateral.
If you elect radio surgery.  Less dosing is better.  The nerves are right center of the canal/region/tunnel/... They will be collateral no matter what.  Cyberknife: my best guess.
If you elect waiting.  Your VS (preferred to AN) should be small.  Any growth of the material that presents symptoms should be considered.

Finally,  find out what experience your chosen team has with respect to pre and post (your choice of treatment).

Please clarify if I am wrong.  Peace,
Daoisthere

 



08/21/2017 MRI reveals AN
10.8 x 3.6 x 4.2 mm Completely fills Right Canal
10/09/2017 Watch and Wait
01/19/2018 2nd MRI  Tesla 3 12 x 5 x 4 mm
New Diagnosis - Partial Empty Sella

ANSydney

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Re: My first round of due diligence.
« Reply #1 on: September 11, 2017, 07:02:25 am »
Daoisthere, great to see you doing your due diligence. Acoustic neuromas are one area where research is vital for the best outcome.
 
Interesting you should mention diabetes and acoustic neuromas. It would appear that diabetes is protective for acoustic neuroma growth! “Tobacco use and diabetes demonstrate a protective effect, although the mechanism of this is poorly understood.” http://d-scholarship.pitt.edu/10555/1/Oren_B._ETD.pdf . I have more references, but I don’t have them handy at the moment.
 
The inner ear canal is where the vestibulocochlear nerve (cranial nerve VIII) and the facial nerve (cranial nerve VII) pass. The internal auditory canal also has the labyrinthine artery. I’m not sure what else is in the canal. The canal is within a bony surround.
 
Schwann cells do not cover the entire nerve. Instead the schwann cells cover each individual nerve fibre. There are thousands of nerve fibres per nerve, each carrying a separate piece of information. For example the cochlear branch of the vestibulocochlear nerve has 25,000 individual fibres, each carrying it’s own piece of information. In a vestibular schwannoma, the schwann cells overgrow. To get to the nerve fibre in question, other nerve fibres have to be damaged.
 
If you go for radiotherapy, radiation dose of to the tumor, cochlear and cochlear nucleas (located in the brainstem) are important. You need to keep the last two low.
 
With regards to experience, it is essential that the surgeon has personally done more than 100 vestibular schwannoma surgeries. How a surgeon goes from zero to 100 surgeries is an interesting topic.
 
I’ve been recently re-reading “Active Treatment is Not Indicated in the Majority of Patients Diagnosed with Vestibular Schwannoma: A review on the Natural History of Hearing and Tumor Growth” https://www.bhtinformatie.nl/pdf/ingrijpen.pdf It provides a treatment strategy which is reproduced below.

Considering  that  only  around  one-third  of  small  to  medium-sized VS grows within 5 years after diagnosis and that very few tumors grow beyond this timeframe, the main argument in favor of primary active treatment (surgery  or  radiotherapy)  is  to  preserve  hearing  function. However,  reviews  on  published  results  of  hearing  preservation  by  both  surgery  and  radiotherapy  show  that  on average,  around  50 %  of  patients  preserve  good  or  serviceable hearing short-term by both modalities. By observation, 60 % preserve good hearing after 5 years and if the discrimination is normal at diagnosis, as many as 75 % preserve good hearing after 10 years. In other  words,  all  patients  with  a  small  or  medium-sized tumor should be offered watch and wait management primarily,  by  repeated  MRI  scans.  If  growth  occurs,  active treatment is indicated.

However,  some  specialized  centers  may  have  documented  considerably  better  than  average  results  of  active treatment, thus justifying primary active treatment. The use of  novel  and  improved  intra-operative  neuro-monitoring equipment (see below) may also improve functional results considerably, thus leading to primary surgery as a reasonable  option  for  optimal  hearing  preservation.  In  addition, other  reasons  for  microsurgery  may  exist,  e.g.,  otherwise intractable  dizziness  or  physiological  reasons,  although these are generally rare.

On a global scale, more and more centers are adopting the strategy of primary observation of small and medium-sized tumors. As growth after diagnosis occurs within the very  first  few  years  in  almost  all  cases,  the  following observation strategy by repeated MRI to assess tumor size is suggested (after diagnosis): 6 months, 1, 2, 3, 4, 5 years, and  then  every  other  year  until  10 years.  After  10 years, termination may be considered, as growth after this duration is very rare, but we suggest scan every 5 years, until 25 years, in order to collect long-term data. Again, if significant growth occurs during observation, active treatment is recommended. Continued observation may be continued if the tumor is still small, or in patients with significant co- morbidity.  However,  the  patient  should  be  informed,  that continuing  wait  and  scan  management  in  the  face  of  a growing  tumor  may  increase  the  risk  of  morbidity  from active treatment at a later date.


Keep up the research. It’s very confusing at first, but after a few months it will all come together. Then you can make an informed decision.
« Last Edit: September 11, 2017, 07:15:49 am by ANSydney »

ANSydney

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Re: My first round of due diligence.
« Reply #2 on: September 11, 2017, 07:07:46 am »
Interesting paper if you want to know more about the internal auditory canal and the nerves that pass through it: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1571325/pdf/joa0205-0065.pdf

daoisthere

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Re: My first round of due diligence.
« Reply #3 on: September 11, 2017, 09:38:41 am »
ANSydney,

The 2011 Dissertation states, "...diabetes demonstrate a protective effect,  although  the mechanism of this is poorly understood." I am diabetic because of a radiated pancreas after full body radiation of cobalt-60 in 1990.  I can only suggest that 'advanced glycated end product' AGEs, in other words the early glycation of cells, could not possibly aid or maintain growth of schwann cells.  The glycation process entangles all of the cells. 

The Dissertation does not clarify if the diabetes is well controlled or not controlled.  If it is well controlled, it is possible that the diabetes treatment has a side effect of controlling the AN as well.  This needs to be clarified.  I read a study that 60% of Seniors with diabetes also report having an AN.

That being said.  Thank you for giving me a wider scope of understanding of the inner canal.   

Peace,
Daoisthere

   
08/21/2017 MRI reveals AN
10.8 x 3.6 x 4.2 mm Completely fills Right Canal
10/09/2017 Watch and Wait
01/19/2018 2nd MRI  Tesla 3 12 x 5 x 4 mm
New Diagnosis - Partial Empty Sella

ANSydney

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Re: My first round of due diligence.
« Reply #4 on: September 11, 2017, 05:13:22 pm »
I read a study that 60% of Seniors with diabetes also report having an AN.

If you come across the study again, I'd be very interested in reading it.

daoisthere

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Re: My first round of due diligence.
« Reply #5 on: September 12, 2017, 08:33:16 am »
Clarification - The info I found was from the FDA database and was not a study. Sorry about that.
08/21/2017 MRI reveals AN
10.8 x 3.6 x 4.2 mm Completely fills Right Canal
10/09/2017 Watch and Wait
01/19/2018 2nd MRI  Tesla 3 12 x 5 x 4 mm
New Diagnosis - Partial Empty Sella

ANSydney

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Re: My first round of due diligence.
« Reply #6 on: September 12, 2017, 05:03:10 pm »
Do you have a link to the FDA website entry?

daoisthere

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08/21/2017 MRI reveals AN
10.8 x 3.6 x 4.2 mm Completely fills Right Canal
10/09/2017 Watch and Wait
01/19/2018 2nd MRI  Tesla 3 12 x 5 x 4 mm
New Diagnosis - Partial Empty Sella

ANSydney

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Re: My first round of due diligence.
« Reply #8 on: September 12, 2017, 09:36:59 pm »
Hi daoisthere. I went through that website and could not derive "that 60% of Seniors with diabetes also report having an AN". Any chance of you walking me through the derivation of the figure?

daoisthere

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Re: My first round of due diligence.
« Reply #9 on: September 13, 2017, 09:08:50 am »
Here is an excerpt from page:  Age: 60+ 56.25% (60%) My perfect recall isn't working that well. I have a brain tumor. Sorry.

Age of people who have Diabetes and experience Acoustic Neuroma *:

    0-1: 0.0 %
    2-9: 0.0 %
    10-19: 0.0 %
    20-29: 0.0 %
    30-39: 0.0 %
    40-49: 25.0 %
    50-59: 18.75 %
    60+: 56.25 %
08/21/2017 MRI reveals AN
10.8 x 3.6 x 4.2 mm Completely fills Right Canal
10/09/2017 Watch and Wait
01/19/2018 2nd MRI  Tesla 3 12 x 5 x 4 mm
New Diagnosis - Partial Empty Sella

ANSydney

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Re: My first round of due diligence.
« Reply #10 on: September 13, 2017, 05:33:21 pm »
You may notice that those percentage add up to 100%. That is, if you have diabetes and are diagnosed with an acoustic neuroma, how old are you likely to be. Not sure if that is the age at diagnosis or "snapshot" age. If it's age at diagnosis, it later than the usual age, which adds credence to the protective-nature-of-diabetes theory.

By the original logic, 68.75% of all females have an acoustic neuroma :-)

 


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