SKull Base Possibility

[nancyann]

Hi Ixta,

What a wiz you are with the computer !!!   Thanks for the BBC post,  ain't technology grand?
I've been going for vestibular therapy twice a week, only I'm a bad pt., need to do the excercises more at home.   Definitely is working.

Have a good one buddy,  Nancy

[chopper]

that 45 degree thing is a sadistic joke.

No lie there.  Trying to figure at an angle and stay there all night is damn near impossible.

The balance thing will get better...as well as the back.

[ixta]

too cool.

I just got off the phone with Shahinian.
I am now about 12 days post op.

This last Tues a drip started at the base of the last staple.

I thought it was csf, wasnt sure. Called SBI, talked to Matt, said he would get back to me with a ossible prescription.
Waited.
Waited.

He called back, left a msg to see if still dripping, left a number to call.
I called direct to Shahinians right hand person (roxy) because they wanted to call meds in directly to my locl po-dunk town walgreens.
I call Walgreens today at 3-still no meds.

So I call the SBI on call service and pushed the number that corresponds with an "Emergency".
A lady takes my name and number and number to the pharmacy.
I hang up.

Ring Ring

Shahinian on the phone.
asks if have temperture, how long dripping and how drips.
Tells me I am going to get a refill of the cipro and another med to attend to the drip.

He explained the tumor was so big that the space is still being filled and the wound needs to drain.
He then said He was going to call it in and call me back.

Hangs up.

I kinda chuckled knowing he was going to call walgreens and get the press 1 for spanish, and all the submenus needed to get into the right menu to do a presc order in.

10 mins later he calls on his cell telling me its done, and to call him back on Mon-tues and send high rez fotos of the wound.
He said that the staples shouldnt come out on Monday as previously planned.

I then mentioned I see my local ENT to get the staples out This coming Friday-he was stern and direct and said I am not do to anything till he sees the images and talks to me on Tues.

I was very impressed with him not forgetting about me and keeping me under watch from afar-especially taking the time to call me at 8pm on Sat NIGHT! Cool

Very impressed.

i'm starting to think that my tumor might not have started due to "kuato"-but more due to this damn World of Warcraft fix.
any "wowers" out here?

[GOIN2LA]

Ixta, I’ve been reading over your experience on the discussion board wow what a trip.  It's been three weeks and one day since my surgery our in LA with Dr. Shahinian and I'm pretty much back to a normal life.  I had a great experience and am so glad I chose to have my tumor removed endoscopically.  Funny story when I went to see my ENT to have my staples removed he actually had the nerve to tell me he still wished I hadn't gone out to LA.  I couldn't believe he still was against it.  I would like to know how many patients he has seen walk into his office with a smile on their face two weeks after having the traditional surgery.  Oh well so much for doctors having the patients best interest in mind.  I'm glad you are doing well.  I haven't seen how things are going since the CSF leak.  I hope that has healed its self.  I have been praying for you daily and will continue to do so.  Take Care and God Bless.  Sara

[chopper]

I had a great experience and am so glad I chose to have my tumor removed endoscopically. 

x2

[ixta]

im tired more than ever now, he said wait on the staples. I was supposed to have them out already. its 17 days post op. I my have them out this Friday with my ENT
My balance and gait are still diizzy and no way am i going o drie a car yet. two nights ago he started me on the anti drip that lowers inracranial hypertension, ,that stopped but when it stopped I think my head was "filling up" or finding internal equilibrium or hommeostasis with the outside. then I found ou that I was at high risk for meningitis while I had that drip for a week! The only way I was able to get to the doc was bycalling his on call emegency line. Office staff did call me back but 3 days later! Just to see "if the drip was sill going on"-when previously they said they were going to call back in 15 minutes with  prescription.
So Sunday night I dial the on call emegency # and wham-doc +prescription.

It's been three weeks and one day since my surgery our in LA with Dr. Shahinian and I'm pretty much back to a normal life.  I had a great experience and am so glad I chose to have my tumor removed endoscopically.

Hey Sara Thanks soo much for calling me the dy b4 my surgery.
My wind is stil knocked out of me due to the size of the tumor taken out and the space is still being filled up, at least thats what Shah told me about the leak.
I am planning to take the whole month off and perhaps into January. I am not sure yet. since im kinda flying alone here I think I am going to see a neurosurgeon up here for after care.

My face is about 35g% weaker on my left side still, I can barely close one eye at a time without them both closing, and my smile is a grimace now straight out of lemony snicket ha!  Ive been wtching lots of dvd moives *)

[nancyann]

Hi Ixta, hope your healing goes a little better from now on.

I wish I had taken 4 months off from work, the way I felt.  I went back to work 2 months post op.    Try to take as much time as you can off - the fatigue is UNBELIEVABLE !!!!, so's the balance, etc.

Wishing you a peaceful heart, nancy

[ixta]

Ya nancy whats with this fatigue! I slept 13 hrs last night.



woot

just got off the phone with Shahinian again,
states that the wound looks good(I sent him high rez pix)
and the drip has stopped. I am to continue taking the AcetaZolamide until the bottle is out to decrease intracranial hypertension and CSF flow.

He said to see ENT this Fri to get EVERY OTHER staple out starting from the bottom. Then over the weekend, if no leak-Get the rest of the staples out Monday-Then Staple Frankenstein free@!  So instead of the original 14 day post op staples out-mine is going to be 21 due to CSF.

Still havent gotten out Xrays back yet our pre and post MRIs

[ixta]

ok got the XRAYS today ha! SBI had to fedex them overnight, I guess Shahinian was using them for some data i gave him permission to use in a book he is writing,

So, if anyone reads my blog, this is basically a copy paste of what i wrote there.
______________________________________________

Visitied my ENT expecting to get my staples out every other one starting from the bottom, and the opportunity to educate explain about this groundbreaking endo work of tumor removal...

He curtly stated he was just there to say that he was not going to take my staples out, he was not familiar with this procedure, and was not comfortable treating me due to the CSF leakage I mentioned that had stopped 5 days ago..he further stated that he thought I was going to see Mangham top traditional approach at Seattle ear-with whom he has plenty of rapport.

So in Essence, I was told that he didnt know that the guy who did the resection was a neurosurgeon-and that if so-I should see a neurosurgeon for follow up..

so....he referred me back to my PCP

I get to my PCP-he gladly takes out every other stitch then has a sit down w me explaining that the ENT nor the Neurosurgeon in town wants to see me due to them bo knowing about the procedure-not having any paperwork-and that Its just me, him, and skull base institute from afar-+ he mentioned that the neurosurgeon probably will not get paid for anything since Shahinian is doing the work from afar med management etc and that he does not want to get involved with another surgeons TURF, especially if he is not familiar with the approach.

So I call MATT up and he says, thats normal dont worry, I told him that I didnt know I was at extreme risk for meningitis at the time, but he (AND my PCP ) mentioned the CIPRO would be fighting that anyway...

So basically it comes down to me choosing my own path of treatment, ( less invasive, less barbaric etc)--and not having a whole lot of after care-but I am recovering ok and SBI has been on the ball from afar at least.

I think I will probably have to follow up with them in 3 mos and fly back down AGAIN.

Matt said the weak left eye shut, facial muscles will eventually come back--how many ANERs here visiting-how long did it take for tearing to come back? and was your motor skills weak from the start? I get the impression, the bigger the tumor, the more swelling post op the nerve goes through..GOing2 LA, states she is almost back to normal--smaller tumor perhaps?

I shouldnt feel too bad, last night a windstorm came through and knocked a neighbors tree over, it landed on their car n smashed their roof in.

I lasted 2 hrs at costco and was able to see a client for 1.2 hrs by then I was exhausted and am home now.

For those of you that are interested in why ENDO may be the future but for now, it goes against the establishment please copy and paste

http://nymag.com/bestdoctors/articles/02/kindestcut/index.htm

thanks to a forum support person for above link



Anyone here remember when their tearing came back in the affected eye if any?

[GOIN2LA]

Tumor was 4cm.  Shahinian said it was a monster.  I went to my follow up with Dr Bojrab at the Michigan Ear Institute on Thursday.  He is one of top ten surgeons for the traditional method and has even visited Dr. Shahinian at SBI.  While he does not endorse endo method, he thinks the traditional way is still the best, he did agree to do my follow up over the next five years.  I got the feeling he wanted to see me to prove that Dr Shahinian did something wrong.  So far so good though no problems to complain about.  I am having a little vertigo Dr. Bojrab showed me some PT exercises and wants me to have one appointment with a PT specialist to show me some more exercises.  One of the exercises is bouncing a ball back and forth, another is focusing on an object on the wall like a light switch and moving your head up and down and then side to side ten times.  We'll see if this works. 

As far as the facial nerve we were told that due to the tumor it stretches like a sweater but eventually will tighten back up.  It can take several months. We were told this by both Bojrab and Shahinian.  I was blessed not to have any facial nerve problems or tearing issues. 

I am watching your post and will keep you updated with my progress as well.  Thanks for the article it was very interesting.  To bad they didn't know about Shahinian.  Take Care and God Bless!!!

 I get the impression, the bigger the tumor, the more swelling post op the nerve goes through..GOing2 LA, states she is almost back to normal--smaller tumor perhaps?

[ixta]

Hey Goin

You say your tumor was 4cm in the post above. your sig says 5. Was it 5 measured from within the IAC where it started? Thats what SHahhinian told me 5 from IAC, plus it was Soo Compacted "like a fist" he stated against the trigeminal and facial nerve so maybe that why my face is weaker. I am sure you cannot hear on the AN side?

I wanted to mention the importance of the article above that explains the political process and infighting between long standing surgeons in the profession and the new Tech surgeons either working already with endo in all sorts of surgeries, kidney removal, heart surgery etc, gyno, not just ANs
The Consumers will drive Endo into the mainstream I guarantee it.
It is not endorsed due to politics among surgeons, money, and fear of change, Mid level professional surgeons, and those that want to retire in 10 yrs have LOTS of experience in traditional methods, etc, Endo, according to the article is the future, and modern "open" surgery will be non existent in the future..it just depends on how medical schools train, and current Docs in the profession support the technology.
I am a consumer and I wanted the best of the best, and ran up against a wall, or even worse, websites dedicated to "AN SUPPORT" that offer only "3 PATHS" 1. WAIT, 2. Gamma knife. 3. Traditional (and all the approaches to boot) NONE mention Endo or at least "Some Aners have experienced positive results from Advanced Technology that has been around FOR OVER 10 YEARS called endoscopy"

According to the article, hospitals that want endo surgeons and get them, market through the web for tech advanced patients (Like all of us on this forum), and bring income to hospitals.
IMHO, Those who seek out or have already done Endo have thouroughly researched their options, and have to, even worse, swim against a tide that is against them from the medical professionals that are supposed to advocate for "patient self determination"-instead of jumping ship, hightailing it because they are not familiar nor want to be educated by "a patient" about endo.-My ENT didn't even want to take out my stitces and came across as a little upset that I didnt see a traditional top of the top @ Swedish Hosp in Seattle.

My PCP is open at least, he was able to sit down and watch a vid on the retrosigmoid endo approach.
I talked to the top Endo surgeon at UCLA, and he says he does some Endo surgeries, but not ANs yet, I mention SBI, he is familiar with them, does not mention alot, short lipped, maybe brings up the typical, "What if you get a bleeder", etc-
then the next day I find a vid of him advocating Endo for the future of brain surgery and recieving media attention for his work on someones knee-via endoscope.

When I was researching endo, I call this site, talk to the CEO, she states, no comment, then states she will gladly discuss gama knife with me and the various traditional aproaches.
Why not Endo? Politics I say, "No comment, No Comment". Healthcare culture/system in the states probably has something to do with some % of the roadblocks of getting endo to mainstream,
This work is being done all over the world. But here? not.

Except--I was able to find te name of a AN ENDO-er DOC in NY! So add him to the list of Shahinian and Jho for those interested in endo.




Christopher Linstrom
Acoustic-nerve tumors; encephalocele
212-979-4200
New York Eye & Ear

http://tinyurl.com/y4t5xt He looks like a Doctor at least, would be nice to know how many ANs he has removed via endo. It also looks like he is associated with a university, that may be more fluent about the dreaded word "insurance"-Dr. Jhos agency is like that too-


Hey good news @ 19 days post op! My eye on the left has more liquid now-like maybe 15% of tearing has come back, my motor nerve of blinking is a little faster than before, especially yesterday I had to crunch my good right eye down to get left to blink. I think things are slowly coming back-also I think my trigeminal is SLOoooowly coming back-I can start to feel some normality on the left side of my tounge. DAMN! woot! I just yawned again and some tears welled up ion my AN EX AN eyeball! :

again, the important article

http://nymag.com/bestdoctors/articles/02/kindestcut/index.htm


It is 7 pages long, at the bottom are hyperlinks to the next page etc.



Take Care and thanks for the support.

[jerseygirl]

It looks like endoscopic AN removal really is another option besides traditional surgery and radiation. I found a link to the 5th International Conference on Acoustic Neuroma that will take place in 2007. The program specifically has minimally invasive/endoscopic techniques as a separate item.

http://www.acousticneuroma2007.com/home.php

I found it very interesting.

           Eve

[ixta]

Marco...

It looks as if the egos of your local ENT and neurosurgeon were somewhat bruised. With attitudes like theirs, I wouldn't want them touching a single staple. The ENT's excuses to not remove your staples are so lame and transparent. I wouldn't be surprised if he told his buddy in Seattle all about you and felt somewhat embarrassed when you went elsewhere. I bet he wouldn't have had any problem removing your staples had his bud done the surgery. Oh well, his problem! Sounds like you have a good PCP though.

Bruce

Ya Bruce, it seemed though the main concern he had was when I mentioned CSF leak. He admitted that that was out of his realm of expertise and decided to refer me out which is very understandable.  He is an ENT and has strong knowledge of traditional approached done through Dr. Mangham at Seattle Ear Clinic-Whom I did see per my ENTs Advice, but decided on Endo in the end.
the CSF has stopped. My PCP took out the rest of the staples this last Monday (21 days post op) and I started driving yesterday albeit SLowly and carefully.

[ixta]

It looks like endoscopic AN removal really is another option besides traditional surgery and radiation. I found a link to the 5th International Conference on Acoustic Neuroma that will take place in 2007. The program specifically has minimally invasive/endoscopic techniques as a separate item.

http://www.acousticneuroma2007.com/home.php

I found it very interesting.

           Eve

Yes, Eve, how Funny, I wrote Shahinians office about the conference above, and look I got an email from Shahinians HEad Nurse.


"Hola!!!

 

          Well I spoke with Dr. Shahinian and he wanted me to inform you that he is actually speaking at this conference that you are talking about and Dr. Shahinian wanted me to remind you to take pics for him to see your incision area and the healing process.

 

Espero que todo esté bien… Dile a tu esposa que la mando saludos!

 

Matt"


I am sure Shahinian is presenting his work, and perhaps my tumor on a table in a jar for Barcelonians to enjoy looking at HAHAHA~!~Thats why he is wanting pix I believe,

I will try and upload the resection vid for those that are interested. I think the only place I found to host the file was a gaming site so we will see how long it lasts there. will post soon.

[ixta]

IN fact here is the Video Resection. Please do not leave comments on the server site hosting it. I just needed space to host it. Thank you.

WARNING*** This video is an endoscopic resection of an acoustic Neuroma*** Only those that are not queezy of Blood should view, and those interested in the technique.

IT is not the whole 6 hr surgery of course. Shahinian filmed the approach-to the resection-to the cleanup of the IAC where the Tumor started.

I do not believe he filmed inside the IAC (INternal Auditory Canal)-where the Vestibular starts behind the cochlea-and where he severed off the nerve since the tumor took it over. Facial and Trigeminal nerve were compressed and rather compacted. But feeling and motor are coming back.

The Tumor was 5 cm measured from where it started within the IAC to the other side where it was compressing the brain stem.

File here http://tinyurl.com/y6shks  The file is about 95 MEG and is a MPG file. It is hosted on a site that usually hosts gaming files so I snuck it in there with some secret language.

GET IT WHILE YOU CAN, I DONT KNOW HOW LONG IT WILL LAST. LAST ONE TO GET IS A ROTTEN TUMOR!

http://tinyurl.com/y6shks

Here is 23 day post op of the scar. Staples taken out 2 days ago.