Potential future cure for damage caused by AN!

[Tumbleweed]

Hi, everybody:

This exciting news broke on October 31st: http://www.eurekalert.org/pub_releases/2012-10/ohs-ord103112.php

Although the research focused on multiple sclerosis, it doesn't stop there. If I'm understanding this correctly (and I'm pretty sure I am), it could mean the potential for reversing the demyelination of cranial nerves caused by an AN. With remyelination would come improved hearing, balance and facial-motor functions (in cases where the hearing, balance and facial nerves have respectively been damaged).

Any potential therapy is at least 10 years away from being developed and approved. But this is extremely exciting news for us forumites who have lost function.

Best wishes to all,
TW

[Tumbleweed]

I ran this by Dr. Chang via email, and in typical fashion, he replied immediately (he's amazing!).

He indicated I'm understanding this research correctly but there is a catch: the first few millimeters of cranial nerve, where it exits the brainstem, is typically not myelinated. So remyelination along the rest of the length would not necessarily help if the tumor were large enough to reach and damage that section close to the brainstem (or if it originated in the cerebellopontine angle close to the brainstem, as a small fraction of ANs do). In that case, the electrical continuity would still be degraded. Put in plain English, metaphorically: if a wire is broken on one end, it doesn't matter if it's repaired at the other end -- it would still not pass signal.

The takeaway is that this groundbreaking research does hold some promise for helping people with ANs recover some function in the somewhat distant future, contingent on where the nerves were damaged.

Exciting!

Best wishes to all,
TW

[MDemisay]

TW,

Certainly exciting 10 years into the future for those that need it then! But will it necessitate another operation for those of us who already have had surgery or even 9 years into the future?

Mike

[arizonajack]

Now all we need are cryogenic pods so we can wake up in a couple of decades and take advantage of the developments when they are perfected.

 

[PaulW]

This is also new and holds some promise
http://www.ncbi.nlm.nih.gov/pubmed/22931905


Not so new... Feb 2012
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3306254/

http://www.ncbi.nlm.nih.gov/pubmed/22222570

[PaulW]

Found another Article from October 2012

"The authors conclude that imatinib may be a potential treatment for VS, especially for NF2-associated lesions that cannot be cured with resection or radiosurgery."

http://www.ncbi.nlm.nih.gov/pubmed/22900848

[jaylogs]

Still waiting for the cure for tinnitus! And of course, cancer, parkinsons, etc....we've definitely have come a long way, but have so long to go!
Jay

[PaulW]

Lead therapy (administered via a smith and wesson)
Potassium Cyanide
Arsenic.

Have all proven to cure tinnitus, the side effects however are pretty extreme

[Tumbleweed]

But will it necessitate another operation for those of us who already have had surgery or even 9 years into the future?

Mike

The inference of the research is that it could lead to the development of a drug that allows the nerve sheaths to regenerate by blocking inhibiting factors. So, if it comes to pass, it would not require another surgery. Basically, you'd take some pills to help regenerate your damaged cranial nerves.

There are always monetary costs and side effects to consider, but the potential benefits are exciting to ponder.

Best wishes,
TW

[Tisha]

Very exciting news, Tumbleweed!  And as I've gotten older (turned 53 last week), 10 years just flies by!  Also, just read about your new audiogram.  I also had one a couple weeks ago and am also down about 10 db, but in the 4000-6000 range...bummer.  Audiologists said i would benefit from an HA, so considering that.  Still have 96% word recognition though. 

Wouldn't it be great to have some relief in 10 years...

[It is what it is]

Keep the research articles coming.  Thanks!

Karen

[grace]

wow, now I am wondering if I should have seen the MS Doctor? How many of us w/ AN have been told the MRI also showed MS? I was told to see an MS DOCTOR before an AN MD. However both of the AN MD's said they highly doubt I have MS.... so having 5 appts this week including to move ahead w/ CK soon b/c of my loss of hearing and some imbalance I cancelled the MS MD.  now reading this - is there a percentage of people w/AN and MS? Please let me know,,,, your words and support go a long way.. Sincerely appreciated, Grace

[Tumbleweed]

Grace, nothing in this news article infers that there is a causative link between MS and acoustic neuroma. The only common ground is that they both destroy the myelin sheath of cranial nerves, but they are two totally different diseases and having one in no way suggests you have the other. To make an analogy: Just because the common cold and lung cancer both can cause trouble breathing does not mean that someone with a common cold also probably has lung cancer.

I think you should trust your doctors. If they saw an AN in your MRIs, then go with their diagnosis.

Best wishes,
TW