Author Topic: Update for all you AN fans  (Read 7800 times)

ceeceek

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Update for all you AN fans
« on: February 21, 2007, 07:35:34 pm »
So, I have still not as much news as I would have liked but feel that an update is in order......
I have what is to be believed a vestuble (sp)neuroma or schwanomma....and if it is what they think I will be one of three people ever to be officially diagnosed with it.....fun fun.

I have an appt with a Dr in Orlando whom specializes in endoscopic brain surgery and trained with Dr. Jho in Pittsburgh, so I believe I am in good hands....I spoke with SBI but cannot say I was impressed and considering everyone has at least looked at my films, for free to determine if I am a candidate for thier type of treatment, I think it is ridiculous that SBI wanted 600bucks....but maybe they do a fantastic job..cant say overall though they made me feel too confidant, and due to the fact that Dr. Shinanhian is not neuro certified, he can tout any statistics he wishes...he does not have any bad marks against him that I could find, and I believe that he is good at what he does or he wouldnt be as busy as he is...but, not for me unless I get desperate....

So on to the chase.....the Dr. I found in FL..is Dr. Melvin Fields whom works alongside with a Dr. Brian Spector ENT...together they specialize in skull base tumors and other various tumors such as ANs using the endoscopic approach....
They have officially looked at my films and believe that yes, I am a candidate, Yes, a biopsy can most definately be performed, and if I am really lucky, a resection..I am hoping for total resection, but will only know what can be performed when they are actually in there..so to speak....

Apparently my schwanomma AKA whatever...is located around my carotid artery.....in 30% of people, apparently one artery will feed the entire brain, and if I am lucky it will be my other one.....that way they can be much more agressive...either way, the carotid is apparenlty pretty tough, and no one has died from this type of proceedure and I dont plan on being the first.....

I have appt March 1st with both doctors although I have spoken at lenght with Dr. Fields and his staff already on the phone....then surgery will be scheduled for possibly third week in April.....
If I worked doing something else, I would ordinarily be back at work in just a few days, but because of what I do, he doesnt want excess pressure put on the inside of my head for several weeks.....so I am trying to coincide the surgery recovery time, with time I had already planned for vacation since I will be off work anyway, might as well make the best of it....

If total resection cannot be perfomed, I will follow up with CK with Dr. Spunberg in W. Palm Beach...but I am really hopefull, I have watched several proceedures that are similar to what they will perform on me...and seeing that I have such a wierdo diagnosis, Dr. Feild is using my films to use as a teaching tool in his upcoming seminar at the end of Feb...he is teaching Dr's from around the world about the endo approach and figures that no one will ever get a chance to see one of these...........if he is good enough to teach said proceedure, I think he is good enough to try and resect mine.....keep your fingers crossed for me, as that would be my best news......I will keep everyone updated, and I appreciate alllllllllllllllllllllllllllllllllllllllllllllllllllllll the support...even though i am not official ANer, I am now part of the family,,,,,just call me the wierd uncle...hhaaaha

When I have more news, I will update and or if anyone wants more info re endo...the only way to go other than straight CK.....I have tons of resources now......

Kisses to all
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.

Sue

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Re: Update for all you AN fans
« Reply #1 on: February 21, 2007, 08:02:51 pm »
Hi Ceeceek

Vestibular Schwannoma is what the doctors like to call it. Most of the rest of us calls it Acoustic Neuroma, and some other things that aren't so nice under our breath!  So you are one of three people that your doctor ever has seen with this?  Is that what you mean?  Just curious.

This is from the University of Maryland website:
Vestibular Schwannomas -- commonly called by the misnomer, acoustic neuroma -- are benign growths arising from the balance nerve. Because they are benign, the do not metastasize, or spread to other parts of the body. They are uncommon, and occur in approximately 10 people per million per year in the United States. They tend to be found in patients older than 40 years.



Glad everything is moving along for you.

Sue in Vancouver, USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

ceeceek

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Re: Update for all you AN fans
« Reply #2 on: February 21, 2007, 08:16:25 pm »
Nope,,,,it is not an AN....or the more uncommonly called name of vestibular schwanomma....I have a schwanomma that is not on the more common 7th or 8th facial nerve but on I beleive he said the 9th....but how it has grown down into my sinus bones etc and that is what makes it really intersting...it is not like an AN in that it is not on the side of my head...leaning toward the brain stem...my happy little schwanomma is litterally in the middle..around my carotid, underneath my temporal lobe...if it were higher it could almost be a pituitary tumor..hard to explain where exactly it sits, which has been a large part of my overall fustration..for two months and many doctor visits later, it has been officially determined that I have what appears to be a benign growth, about the size a walnut, in a really wierd spot.....
I found this site as it was first thought to perhaps be an AN, and now you guys are stuck with me, even though technically I am not diagnosed with an AN..
Hope this helps....it is a 99.9% chance of being a benign schwanomma....facial schwanomma...very common...it is the type of nerve (optic) schwanomma..that makes it unusual...me, I would have liked a very typical very common and easy to reach everyday ordinary meningioma, AN, facial schwanomma....etc..but NOOooooo, I had to have the wierd one...only advantage is every doc, once they look at my films become very interested.....unfortunatly, I have only found one doc other than SBI, that thinks they can biopsy it, and keep your fingers crossed remove it, or at least make it smaller so I can CK it without regard to the typical swelling effects....

That answer your question...I am happy to fill you in just send me email
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.

Derek

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Re: Update for all you AN fans
« Reply #3 on: February 22, 2007, 04:53:03 am »
Hi there 'Ceeceek'...

You appear to have something rather unique and I wish you well with your ultimate treatment option.

Your great sense of humour and strength of character shines through in your posts and I look forward to hearing how you get on.

Very best of luck for a successful conclusion.

Regards

Derek
 
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

ceeceek

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Re: Update for all you AN fans--ooops
« Reply #4 on: February 22, 2007, 07:36:23 am »
Now I understand the confusion I created..I stated that I had been diagnosed with a vestibular schwanomma...sorry,,my mistake...what I meant was a schwanomma.....and that I am NOT diagnosed with a vetibular schwanomma aka Acoustic Neuroma....so sorry.....It does appear to be a schwanomma, and it is on, or appears to be on an optic nerve..apparently very very very unusual...whoopdi doo!!
Sorry for confusion.....what can I say, tumor moment!! :-\ ::)
Ceecee
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.

ixta

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Re: Update for all you AN fans
« Reply #5 on: February 23, 2007, 12:34:45 am »
Ceeceek Wicked man! You found another Endo Doc!, that is cool he trained with Dr. Jho!~, Keep us posted on how it goes, It is good to get the news out that there are other Endo peeps out their instead of just SBI/Jho!
gives us consumers more to shop around with and get informed decisions!

Do you have any facial numbness? or lip, tounge "Foil feel"?

Eve you hear about this guy in Florida?
« Last Edit: February 23, 2007, 12:36:32 am by ixta »
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

Sue

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Re: Update for all you AN fans
« Reply #6 on: February 23, 2007, 01:32:24 am »
Okay CeeCeek, now I understand!  And may I say, Wow! Had to go and be different.  I wish you all the best and I hope you find the right medical staff with the "right stuff" to treat you. 

Sue in Vancouver USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

jerseygirl

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Re: Update for all you AN fans
« Reply #7 on: February 23, 2007, 07:36:27 am »
Ixta,

I never heard of this guy before  but Ceeceek gave me the website and says that he indeed does endoscopic removal of ANs. I sent his ofice an e-mail yesterday and will follow up with a phone call. If he indeed does fully endoscopic AN removal, I will get a consult and post about him on the forum.

His website is very simple, there is no comparison to SBI, and it does not mention ANs. That is why my search did not pick him up because I was googling on "acoustic neuroma endoscopic". There are a number of doctors in the US who do endoscopic removal of other tumors, like pituitary, but when it comes to AN, they stick with the traditional methods. One of them, Dr. Sen in NY, I had a consult with.

I will post more as I learn more.

                                              Eve



           
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

ceeceek

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Re: Update for all you AN fans
« Reply #8 on: February 23, 2007, 01:44:44 pm »
Okay,,,,first off, I am a girl...42 yr old female whom works as firefighter EMT for last 20 yrs...seeing that not all of you read the bios...anyways.
I have found lots and I mean lots of endoscopic surgeons....you just have to look in the right place..if you type in your browser endoscopic brain surgery, you will find tons of research about the various proceedures and the advantages of it over traditional methods including microscopic...similar proceedure but endo is much more finely tuned and they do not..let me stress this again..do not touch, retract, bump, move etc your brain....big advantage!!!

Part of the problem is that in the medical field, once moneys and equipment have been procured by and establishment, they tend to stick with what they have..it is expensive to change, plus the liablity insurance is more money..(That I cant figure out, due to the success rates but whatever), and there is also the need for further extensive training...the endo tools require a hands on type of training..you have to get the feel for the instruments...a good site to go to is medline plus videos and look up brain surgery then look up the endo surgery,,everything is explaines as they actually do the surgery...

Endo, is somewhat regarded as difficult in several areas, loss of visualization, possible bleeding etc by the more traditional surgeons..but if you read, you will find that..............the whole point of endo is that you do not bleed...due to much less invasion of tissues.......and feild of vision is better than with traditional microscopic proceedure due to the wider angle of the viewing lens now being used....
recovery is hugely faster than either other approach, and now that they have CSF leakage problems solved, healing etc is much much faster, with little to no risk of SCAR TISSUE>>>>a major factor for most of you ANers...no scar tissue on or around your ear, or facial nerves henceforth preventing, those nasty little problems that most of you have incurred since your surgeries.

Now, I am firm belever in CK treatment if AN is small, and there is room for it to swell as most of them swell after treatment around 6months by 10 to 15%....usually a temporary problem as the tumor dies off....in my case my tumor is about the size of a walnut and if it swells upward, and basically no reason for it not to, it would swell unfortunately into my temporal lobe...very very not good.

I was curious as to why so many endo docs did not advertise more in the way of ANs, but it appears that they treat alllllll types of skull base tumors and even outer meningiomas, so they tend to advertise as endoscopic brain surgeons,,,so if you were looking AN specific, you would not neccesarily find all that do it...now mind you, it is a newer technique, and there are not thousands of Drs whom do it...but definately a growing field....

FYI, good luck to everyone and I will keep you all updated.
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.

cookiesecond

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Re: Update for all you AN fans
« Reply #9 on: February 23, 2007, 09:23:38 pm »
Ceecee,
You do have an interesting story there! I guess you make our ANs seem simple. I had a 3+ cm AN removed 8-2-05 by the translab approach. I had a great team of Drs from DUKE.
You will be  in my thoughts and prayers as you make your decisions. Finding Drs you feel comfortable with is the first step and you seem well on the way. Please keep us posted.
Take care,
Lynn

Battyp

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Re: Update for all you AN fans
« Reply #10 on: February 24, 2007, 12:29:07 am »
ok cee cee you said just consider you the weird uncle...geesh I didn't know I had an uncle who did cross dressing on the side  LOL   :-*  Hope all goes well with your consult!


ceeceek

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Re: Update for all you AN fans
« Reply #11 on: February 26, 2007, 04:40:38 pm »
I meant wierd unlce strictly in a metaphorical sense..after all..who has a wierd aunt...lol
Ceecee
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.