Minimally invasive endoscopic surgery?

[MDW]

My first post... 

Has anyone undergone minimally invasive endoscopic surgery for removal of an AN?

I've seen a few threads but they were from 4-5 years ago, and nothing from those who have had it done and how they fared since their surgery. I'm investigating alternatives to translab and RS. I've pretty much ruled out Gamma/Cyber Knife for myself because I feel it would take too long to see results, and would rather it just be removed. But I'm quite freaked out about the more traditional approaches.

Many thanks in advance!!

[Ruthie Mac]

I did a lot of research with a lot of top Doctors about my AN, but must admit, have not heard of a 'minimally invasive endoscopic surgery for removal of an AN'...what are your sources of information on this?
am so curious what others have to say about it....
Ruth

[MDW]

Hi Ruth,

I first read about it on WebMD (http://www.webmd.com/brain/acoustic-neuroma-causes-symptoms-treatments?page=2):  "A newer, less invasive technique called total endoscopic resection enables surgeons to remove acoustic neuromas using a small camera inserted through a hole in the skull. This technique is offered only at major medical centers with specially trained surgeons. Initial studies show success rates similar to those with conventional surgery."

Of course it sounds intriguing, so have just been doing searches on "minimally invasive surgery" plus acoustic neuroma. UPMC's site talks about "endoscopic endonasal approach," or "minimally invasive key-hole approaches," the University of Chicago site "Minimally Invasive Neurosurgery," and of course the Skull Base Institute in CA and Dr. Jho in PA come up as well.

I was hoping to find some people who have done this procedure on the ANA site.

[leapyrtwins]

Endoscopic surgery for ANs is still not widely done.

One of the primary reasons, as I understand it, is that it's too hard to see the brain - so if a brain bleed should occur during surgery it would be a VERY big deal.

MDW -

wanted to assure you that the "traditional approaches" aren't as freaky as you imagine them to be.  I had my surgery (retrosigmoid) in May 2007 and today it's just a distant memory.  There are a lot worse things in life 

Best,

Jan

[Heresrose]

I had translab and it was and I think still is a big deal. My biggest regret is having that surgery. It has irreversibly altered my life. If you're lucky enough to walk away from surgery without facial paralysis then, yes, some balance issues and being SSD is manageable and not so life altering. But losing your ability to smile, blink, chew, blow bubbles with your kids, kiss- it's unbearable sometimes.

Just FYI, surgeons don't' know if they can get the whole tumor until they're in your head. And if they have to leave a strip of tumor to preserve your facial nerve, the tumor can grow back. Doctors will then recommend CK/GK. Also, even if they do get the entire tumor out there is a chance it might start growing again.

Just sharing this because I did not know this before I was advised that translab was my best option.

There is a doctor in CA, Shahenian, I believe, who was in the news recently and there is a thread here that discusses him. Very controversial and has been sued a number of times. I actually cancelled a consult with him after hearing and reading some negative info on him. That's not say that he's as bad as he's portrayed to be. A number of people here have had good outcomes from him. He was brought over from NY by Cedar Sinai but May have rubbed the neurosurgeons the wrong way and it was down hill from there for him-at least with Cedars.

Personally I would not rule out Ck/GK. Had CK a couple of weeks ago and boy do I wish that I had done that nearly three years ago instead of translab. At Stanford, depending on your symptoms, they actually radiate tumors up to 3.5 cms. Wish I'd known this or gone forward with a consult with them prior to moving quickly with the surgery. Btw, can't say enough good things about them. Their staff was amazing and their follow-up is stellar. They actually called me to see how I'm doing and another call to set up my six month MRI which will not even be at their facility. Impressive.

I wish you luck in your research and your treatment plan.

Rose

[Echo]

I agree with Jan, Endoscopic Surgery for AN's is not widely done. 

I live in Toronto, Canada, we have some very impressive neurosurgeons here.  My own neurosurgeon is qualified to perform Gamma Knife, Microsurgery and Endoscopic surgery.   I read an article in our local paper about how he used Endoscopic surgery to insert the camera through a patients nose and successfully remove a benign tumor (the size of a walnut) from his pituitary gland through his nose.  While Endoscopic surgery is groundbreaking surgery, it is not used at all in Canada to remove AN's.

Cathie.

[LakeErie]

I had minimally invasive AN removal surgery for my almost 5 cm tumor in Oct 2011 at the Cleveland Clinic. It was performed entirely with an operating microscope, no endoscopes. The surgeon had performed more than 600 AN removals and over 1000 meningiomas, many in the C-P Angle, so he has extensive experience with his minimally invasive technique. My craniotomy was the size of a quarter, the normal size for a more normal sized tumor is a dime.
95 - 97% of the tumor was removed according to the operative report and the operation was over in less than three hours. I had no ICU time, was in a regular hospital room by afternooon of the surgery day, had an MRI and walked the next day, was discharged before noon the day after that - less than 48 hours from surgery.
Since then I have had 2 follow up MRI's, at 12 and 30 months, and the residual tumor has shown stable size - no regrowth so far.
I have no regrets about choosing this method and do not find it controversial in the least. I know of another doctor who is on the West Coast, John Frazee of UCLA, who also has performed over 600 minimally invasive procedures on AN's.  Endoscopes do not necessarily have to be used, but if they are, they are just a tool to improve the visual field and avoid circumstances like extensive cerebellum retraction in cases of large tumors. Good luck.

[anneliesevanston]

Had Gamma Knife in 2010 and tumor continued to grow. I sent my CD's of MRI to Pittsburgh for consult  and was told I was not a candiidate for endoscopic surgery. After much prayer and waiting decided to have retrosigmoid surgery and still recovering. Not sure what would make me a candidate but endoscopic seemed a good alternative for some.

[aliwoman]

Hi - we're considering endoscopic surgery at SBI.  While I've heard doctors say they don't recommend it and there are some articles about "controversy", we haven't seen any specific information that people have had problems with the surgery.  Looking at the data, it seems like the results are similar to the middle fossa and retrosignoid approaches, but with faster recovery.  Has anyone heard about issues outside of what's in the media?

[leapyrtwins]

Make sure you search the internet for information about Dr. Shananian @ SBI.

He's a fairly controversial doctor and at one time there were posts about him that were "concerning".

The ANA recommends treatment by someone who is both qualified and has lots of experience.  AN surgery (aka brain surgery) isn't something you want to "mess" with; you want the most qualified, experienced doctor you can find.

Best,

Jan

[v357139]

Endoscopic removal is not widely accepted by the medical community.  There is a concern about what would happen if there was a bleed, how would the doctor fix the bleed when the hole is so small.  That would be a question to ask and listen to answer very carefully.  I have heard both good and bad on SBI.  If you are very interested, there is also a Dr Jho connected with Allegheny General in Pittsburgh who does endoscope.  You can send your MRI and get a free consult, which I did.  A good way to get more info if you want it.  They also use it some at UPenn, a young Dr Lee, who answers email.

I also agree that traditional surgery is not a terrible choice at all.  I had 3.5cm removed and a great result.  There are more good surgical results than bad.  I would do it again for sure.  If you pick an experienced team with a great track record, you have a great chance.  Best of luck in your journey, and keep us posted.

[Susang8]

I agree with the comments from v357139.

Traditional surgery is a good option with experienced surgeons.  I had 9 hour TransLab surgery on October 27 (1 month ago) for a 2.8x2.6cm left sided AN that was pressing on my brain stem and cerebellum.  I too had a great result.  I was up and walking the next morning and driving again after a week. I have had no balance or dizziness issues post-op, no eye or facial paralysis at all.  After only a month post-op, I am completely back to all my pre-op activities.  I would not hesitate to make the same decision again.  Best of luck to you.,

[v357139]

I'd also like to agree with HeresRose, that GK and CK are also very excellent choices if you prefer to go that way.  You do eliminate the chances of certain surgical risks such as CSF leaks, and I believe the incidence of permanent facial issues is negligible with GK/CK.  You do have to wait alot longer to see if it worked.  And the long term track record of tumor control is not as well documented.  This is not all inclusive, but those are some of the tradeoffs to investigate/consider.

[darkorchid12]

Well I am really glad I read this post! I have been wondering about the minimally invasive approach, who wouldn't want a tiny surgery instead of a giant one?  But I was also wondering what was the whole story.  All you read about on SBI is how wonderful it is.  When I checked it out there was only one surgeon instead of a "team".  So this all makes more sense.  Always good to do loads of research if you can.

Thank you all!

[v357139]

Always good to educate yourself.  Let us know if you have more questions.