Author Topic: I need advices  (Read 5387 times)

drissa

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I need advices
« on: March 27, 2007, 05:32:21 am »
 hello,
I have some information to ask you. I have 21 years and that done 3 years that my face is paralysed gradually. I am currently between rank 3 and 4 (according to House-Brackmann). My paralysis is due to facial a nerve neuroma.
Know people having treated itself with the USA for this precise case?
Which is the best treatment in general?
 Which are the best muscular results of recovery obtained with the micro surgey?

Thank you very much, see ya

Sorry for my bad english

nancyann

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Re: I need advices
« Reply #1 on: March 27, 2007, 09:10:41 am »
Hi Drissa: A few people on this forum had facial neuroma,  I think ceeceek is one of them,  maybe you can look on her threads...
             I had an Acoustic Neuroma, so can't help there, but I think treatment is similar, radiation or surgery.  Since you are
             having facial paralysis, something needs to be done.....   Maybe you can e-mail her.....     
Best wishes to you,  Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

drissa

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Re: I need advices
« Reply #2 on: March 29, 2007, 09:48:51 am »
 thanks ;)

ixta

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Re: I need advices
« Reply #3 on: April 05, 2007, 09:26:50 pm »
ya ceecee has something in her nose or something, they are doing a through the nose approach of some sort.
I liked having a tumor on the hearing nerve.
They didnt have to "pick my nose" ;D











goodluck CEEECEEE!
5cm left AN from IAC to cerebellum/brainstem.
Zapped out by Shahinian @ SBI over the course of 6.5 hrs on Monday 11/27 2006.
thestatus.com   h   biologyfly06

nancyann

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Re: I need advices
« Reply #4 on: April 07, 2007, 12:21:22 pm »
okay Ixta,  once again,  your gross pictures are giving me nightmares !!!!!!  You should be in the Horror Film business !!!!   Geez louise !!!!  lol
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

ppearl214

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Re: I need advices
« Reply #5 on: April 08, 2007, 11:01:46 am »
oy....

*shakes head*
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

ceeceek

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Re: I need advices
« Reply #6 on: April 10, 2007, 07:34:14 pm »
First off...IXTA..too funny!!! you are soooo wierd, I love it!

SO to Drissa....I think I follow you....I have what is called a schwanomma...now first off, an Acoustic Neuroma is actually a schwanomma....but they are classified by where they grow and what nerve they are growing on...
A facial neuroma, is more or less the same thing provided that they are indeed a benign growth, and not something else...which the Dr.s are usually pretty good at determining, whether or not something is benign or not ....so that being said...
Depending on where exactly and what type of neuroma you have, and most likely if it is pressing on a facial nerve it is a schwanomma.....there are several ways to treat it.
Big thing depends on how big it is..but currently it is big enough to cause you problems, so it needs to be treated...
You can as I understand it, temporarily use steroids to get some relief from you current problem, as the steroids will cause inflammation that is caused by the tumor to be reduced, making some (if you are lucky) difference in your facial numbness..
However, it still needs to be dealt with and a lot has to do with exactly where and on what it sits.
If you have a typical schwanomma, it is more than likely on the 7th nerve...so more or less behind your eyeball....
These are hard to treat with regular surgery as they sit in a hard location to reach without damaging other things in the process....
If your tumor is under the 3cm mark, you are a likely candidate for a variety of radiation therapies, such as Gamma knife.
Gamma knife is a pin point radiation treatment that uses a head frame to deliver a very intense dose of radiation just to the site of your tumor.
It does have some drawbacks....as your tumor is sitting on a nerve and a sensative one at that, you might want to consider a form of fractionated stereotactic radiation treatments such as cyberknife, novalis and a few others.
These use the same principle, but offer the radiation in smaller doses in an attempt to preserve the nerve endings that the growth is sitting on. Depending upon where you are located, I would highly recommend cyberknife, however, these machines are more popular in the US than elsewhere, and there are plenty of other types you can use...
Gamma is what is considered the industry standard for treating growths within your head..but as I stated before, it does take a chance on damaging the nerve, as seeing that you are already having problems, I would really suggest fractionated treatment and try and preserve what you have.....

With allllllllllllllllllllllllllllllll of that being said, there are some considerations about radiation treatments...for one; you have to wait and see if the tumor did indeed die....second, it still may agrevate the nerve for a long time, as it takes some time for the tumor to die and it will still be sitting on the nerve, and last but not least,,,,,a biopsy is generally needed....Radiation treatment is rarely given without positive identification of what the tumor is...now if yours is typical and looks typical and is in a typical location...they can usually tell by just looking at the films.

If a biopsy is needed to identify what it is...you may need the services of a surgeon whom is skilled in endoscopic approach. As IXTA, was so nice to point out, I am indeed having something done to my nose.....
I am schedule to have what is called nasal or transphenoidal endoscopic brain surgery...this is where, my tumor cannot be reached in the ordinary surgical manner without retracting my brain....since I am NON SYMPTOMATIC, at this time, it did not seem like a good idea to touch my brain....so with this proceedure, there are going to go through my nose to reach the tumor....they do not need to get anywhere near my brain...I will have a 1day stay overnight in the hospital and roughly a week recovery till I feel 100% and then 4-6 weeks before the hole in my head is actually healed enough for all things, such as bending over, lifting heavy things etc.
This approach is much much less invasive than traditional approach and if you want to learn more, you can look at the skull base institute web site, go to patient resources, the library and look up nasal endoscopic surgery...also medlineplus videos of Surgical proceedures has and endoscopic brain surgery for a pituitary tumor which is very similar to what mine will involve....

I hope this helps, as your message was a little confusing...I suggest that if you would like to learn more about fractionated stereotactic surgery you visit the cyberknifesupport.org web site. Dr. Medberry and associates are great, non biased and more than helpfull with all types of questions.
Feel free to email me with any questions and welcome to the group..we cant all be ANers.....and this group is just sort of stuck with me now...
sort of like a bugger on thier finger....
Ceeceek
Such is life...Finally identified...vidian nerve schwanomma, 2.8x2.8x3cm.....in the middle but under my brain.....post transphenoidal endoscopic surgery April 19th, 2007 Pre CK treatment in Sept 07.....re-arranged cavity in hopes of reducing side effects and now officially diagnosed as hard headed.

Battyp

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Re: I need advices
« Reply #7 on: April 12, 2007, 06:27:17 pm »
Cee is definitely the resident expert on facial neuromas  :-*