Acoustic Neuroma Foundation website... emphasis on GK

[ppearl214]

I found this website:

http://www.acousticneuromafoundation.org/acousticneuromastudy.php

HUGE emphasis on GK but I didn't even see a notation of CK.... anyone familiar with these folks or why the emphasis on GK moreso than other radiaition options?

thoughts? would love your inputs.

Phyl

[shoegirl]

Hi Phyl,

Funny you should mention it - I thought the same thing when I read their site too.  Maybe their website is out of date?

[Raydean]

It states that it was recently updated, but it's difficult finding out who the author of the site is.  A Doctor Hennenfent is mentioned on the Message board site, even gives a link for him to contact you.  I'm only guessing but my guess is that this site developer or if Doctor sponsered clinic primarily uses GK as it preferred source of treatment, maybe because that's the machine they have. 

Best to all
Raydean

[ppearl214]

not sure.. when you go to the "home" page, down the left margin, a lot noted about GK... which is fine, of course, but nearly a mention of FSR and didn't see anything on CK.... yet, their forum boards show activity as recent as this week, so not sure if outdated or not.

I personally found the article interesting.... since I had not heard of them until now, I'm curious about who and what they are and what drives the articles they publish on the site.

Ok, I'm just dang curious!

Phyl

[ppearl214]

raydean, I think you pressed "post" at the same time as me!

[ppearl214]

did a google on Dr. Hennenfent

Dr. Bradley Hennenfent
Interesting google response. He has a personal website and interesting, NO mention of the Acoustic Neuroma foundation on his site, only his backround in prostate cancer.  Something doesn't feel right and I'm now concerned about true AN patients that do a google looking for help

thoughts anyone? Anyone know anything about them/him?

[ppearl214]

ok, convinced I'm not liking what I'm reading on this website....

http://www.acousticneuromafoundation.org/blurbs.php

[Raydean]

Adds whole new meaning to 'interesting"  Unique theory on causes of prostrate and breast cancer
Not quite ready to toss away my bras. Not sure how the guys feel about their belts.  It'd be "interesting all right!!!

Best to all
Raydean

[ppearl214]

oh, raydean, me not likey!!!!!  Keeping my bras as well.

quote from website "blurb" (huh?)

Acoustic Neuroma Foundation Blurbs
The Acoustic Neuroma Foundation is a support and educational organization about acoustic neuromas. An acoustic neuroma is a benign tumor located in a very bad position deep inside the brain, just inside the all the ear structures. Acoustic neuromas are also called vestibular schwannomas, and technically, they are not brain tumors, as they arise from a cranial nerve.

[Sue]

oh, raydean, me not likey!!!!!  Keeping my bras as well.

quote from website "blurb" (huh?)

Acoustic Neuroma Foundation Blurbs
The Acoustic Neuroma Foundation is a support and educational organization about acoustic neuromas. An acoustic neuroma is a benign tumor located in a very bad position deep inside the brain, just inside the all the ear structures. Acoustic neuromas are also called vestibular schwannomas, and technically, they are not brain tumors, as they arise from a cranial nerve.

You know, I wondered about that.  NA's are in the head, but not really in the brain, per se. Right?  Should it more correctly be called a head tumor?  Or does any tumor inside the skull qualify as a brain turmor?

[ppearl214]

Sue, I have to track down a post here about it (Mark may have participated and provided an answer on it)... seems to be a big debate as to whether or not it is... I had it described to me (somewhat) as follows:

Since the nerves are an offshoot of the brain and the tumor exists on the nerve ("offshoots"), as well as being inside the skull, they are deemed as brain tumors. An analogy given to me was:  If you take an exit ramp off a highway, is that offramp an offshoot of the highway or the road you are leading down to?

Gawd, I hope that made sense.
Phyl

You know, I wondered about that.  NA's are in the head, but not really in the brain, per se. Right?  Should it more correctly be called a head tumor?  Or does any tumor inside the skull qualify as a brain turmor?

[Raydean]

On page 4 under General Discussion is a thread on this topic of is or isn't it a brain tumor

I've copied a small portion, but the whole thread is interesting
Raydean


    AN a brain tumor? Inquiring minds answer
« on: March 25, 2006, 11:58:15 AM »   

--------------------------------------------------------------------------------
based on the friendly little debate on whether an AN is a brain tumor, I posed the question on the CPSG board to see if any of the doctors would respond.

Here is the answer from Dr. Spunberg

From my medical school training, we were always taught that the cranial nerves were in fact an extension of the brain, so that an acoustic neuroma would be a brain tumor, whether inside the skull or not. For example, when we look inside the eye during a fundoscopic exam to visualize the optic nerve head, to check for papilledema, we allways viewed that nerve as the one portion of the brain that you could actually see directly, without the need for a craniotomy.

Therefore, I would call an AN a brain tumor...a rose by any other name, would still be a rose.

Jerome J. Spunberg, M.D., FACR, FACRO
Cyberknife Center Of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828


Kudos to Kathleen Mc who suggested that the cranial nerves are an extension of the brain which is apparently right on target. Based on my error here I am concerned that the cruise will demote me from Purser to latrine duty 

However, I still maintain that an AN is a wart on the hearing nerve, dang it. Yeah that's my story and I'm sticking to it 

Mark
 
 Report to moderator    Logged 

--------------------------------------------------------------------------------
CK with Dr. Chang at Stanford
November 2001
 

[russ]

Hi
  Re Yahoo Group AN Foundation, I have been on it and it consists of little. The good Dr H. has left his group an orphan it seems?
  I see nothing added to links, folders, etc. and his posts were rare but were always focused on radiation.
  Seems a dead group.
  Best wishes!
  Russ

[ppearl214]

thanks Russ... seems we are in agreement on that one.

Hi
  Re Yahoo Group AN Foundation, I have been on it and it consists of little. The good Dr H. has left his group an orphan it seems?
  I see nothing added to links, folders, etc. and his posts were rare but were always focused on radiation.
  Seems a dead group.
  Best wishes!
  Russ

[Windsong]

Thanks Phyl for bringing this site to my attention. I've been browsing through quite a bit of it after reading the other replies here.

I found the letter from H to house quite interesting along with the reply...
plus there are a number of mri pics there with decent explanations.

Also, after reading some of the abstracts provided and so on it helped to round out  a bit of my understanding of world research and thinking on An's....

I didn't go into the message board but i did note elsewhere on that site that whoever H is, it is posted that he only checks in 12 times a yr etc. Seems to me this is a site with info provided as it can and a place for an folks to go to. Actually, many sites on Ans dont say a heck of a lot about Ck, even though more and more of these machines are coming into being around the world . But there's the CK support site which is great.

As for the opening paragraph on the home page...well, it's a pity that editing for errors and perhaps language concerns might have interfered here but seems to be plenty else on this site that seems to be right on.

I would hope that anyone researching for treatment would be sure to weigh the info on every single site they visit  before they make a  treatment decision... along with, of course, in person consultations with the  medical people providing the treatment.

It's great that we have the net and all the various sites for info.

Best wishes....
Windsong