ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: agnes on October 17, 2012, 06:31:04 pm
-
Hi Everyone,
I was wondering if anyone has had the minimally invasive acoustic neuroma surgery and if so how were the results?
I was just doing some checking since I live in the state of Florida. I need to go get my MRI done. I have started
having tingling on my scalp that just does not seem to want to go away, so I am just checking my options.
Would appreciate any replies.
-
There are a few people on the Forum who have had this type of surgery @ SBI (Skull-Based Institute) which I believe is in California. They seem very happy with their choice and with their results.
Minimally invasive AN surgery isn't the norm, but who knows one day it may become the norm. My doc is one who feels it's not a good idea because you can't see the whole brain, which means he wouldn't see a brain bleed if it occurred during surgery. Odds of this aren't great, but he likes to err on the side of caution and I can't say I blame him.
To view posts about SBI put "SBI" or "Dr. Shaninian" in the search box at the top right hand corner of your screen.
Good luck,
Jan
-
I had a minimally invasive procedure for a large AN last Oct at the Cleveland Clinic. The surgery was performed with an operating microscope, no endoscopes, and completed in about three hours.
The retrosigmoid incision measured 5 cm's and the craniectomy was 2 cm in diameter, about the size of a quarter. I had no ICU time and was in a regular neuro floor room the afternoon of the surgery. I was up walking in less than 24 hours and discharged in 48.
I did have complications, but I don't believe they were from the type of surgery I chose. I had complications because the tumor was so large it occupied the entire C-P Angle and involved the lower cranial nerves, #'s 9, 10, and 11. The tumor was adhesive to the nerves and the tumor capsule was " friable " meaning it crumbled on dissection making the surgery difficult in that the nerves were manipulated more than usual.
That said, one year later I feel 100% normal excepting the SSD.
Minimally invasive procedures are done in many major neurosurgery centers, when suitable to the situation, like the University of Pittsburgh Medical Center, Johns Hopkins, Mayo. My hospital, the Clinic, has a skull base tumor program that treats 200 new meningioma and schwannoma patients
a year so they are very experienced in both conventional microsurgery and radiosurgery.
Given the choice, I would take the minimally invasive route again. I wanted the least time under anesthesia, the least time with my head clamped, no need for an ICU, the shortest time in the hospital, and from an experienced surgeon who had good outcomes. If you research the well known major neurosurgery centers, try the top 10 listed in US News and World Report for example,
you can explore whether they offer minimally invasive brain surgery. Good luck
-
Doesn't minimally invasive mean through the nose?
Lisa
-
Lisa, minimally invasive brain surgery is done through the nose for some tumors, it is done under the eyebrow for others. For tumors in the C-P angle, whether meningiomas or schwannomas ( AN's) it can be done as mine was, retrosigmoid.
The Skull Base Institute in LA performs retrosigmoid endoscopic removals and has videos ( animations ) of the procedure along with videos of traditional surgical methods. Dr Jho from Pittsburgh used to be with UPMC, but now has his own minimally invasive program at Allegheny General Hospital I believe.
Dr Jho has a website as well illustrating the different approaches to different tumors. The Cleveland Clinic also uses all approaches as well, at the Brain Institute anyway.
Regardless of the approach, through the nose or behind the ear, the incision and the opening in the skull are smaller than traditional methods. The surgical time is shorter and usually the hospital stay is shorter as well, with lower morbidity.
I am not an expert on minimally invasive procedures which is why I suggested researching the leading neurosurgery centers with medical school affiliations - NYU, Columbia, Cornell, Duke, UPMC come to mind on the east coast for example - to determine where it is available among the best academic medical centers.
-
I hadn't heard about this option before my surgery and am interested in what outcomes they are getting.
Karen
-
thank you for all of your responses. Below is what I copied and pasted regarding the endoscopic approach to the accoustic neuroma. Let me know what you think or if anyone has had this done yet.
At the Skull Base Institute, our surgeons have developed a fully endoscopic approach. Instead of drilling through the mastoid bone or cutting a large opening in the skull, our surgeons make a burr hole the size of a dime behind the mastoid. From this point, thin, flexible and precise endoscopic instruments are inserted - slipping them between the brain and skull to the site of the tumor.
The entire procedure is performed using minimally invasive techniques and allows, in most cases, patients to be discharged within 48 hours. This is mainly attributed to the fact that the brain is not manipulated, retracted or pushed resulting in lower complication rates and faster recovery times. Over the past five years, hundreds of patients have successfully undergone a minimally invasive fully endoscopic resection of their acoustic neuroma.
Tumors as small as 6mm and as large as 6cm have been resected by this innovative technique. Although we routinely used to perform the translabyrinthine and suboccipital approaches in the past, we have not reverted to those "open" procedures and anticipate further evolutions in the endoscopic approach to acoustic neuromas. Continuous neurophysiologic monitoring of the facial nerve, the hearing and the brainstem is routinely performed during these procedures in order to avoid any cranial nerve or neurologic deficits.
More specifically, the rates of facial nerve paralysis, CSF leakage, hearing loss, neurologic injury such as strokes and cerebellar contusions have all plummeted. Finally, there are no exclusion criteria for the endoscopic technique such as tumor size or patient age. Any patient who is a candidate for an open approach such as either the translabyrinthine approach or the suboccipital approach can be a candidate for this minimally invasive endoscopic approach and can benefit from this cutting edge technology, lower complication rates and shorter hospitalization stay.
-
Someone Recently posted about having a Minimally invasive surgery for AN removal here in Michigam at MEI (Michigam Ear Institute). With awesome results. Problem is, I can't find the posts on it here. I'm thinking it was on one of the Facebook AN groups.
I'm sorry I can't find more, but maybe you could contact MEI and ask more about it?.?. I know they haven't done it that way long there, but they have a much better reputation than that SBI Dr on California.
-
As someone who recently went through the research process on all of this, the current state of knowledge on minimally invasive (which really could be translated as "endoscopic" or at least "more reliant on endoscopy") procedures is incomplete. Our tumors are rare enough as it is, so getting enough data on outcomes for a new, less-used surgical procedure will take some time. The results so far, unsurprisingly, are encouraging, but not enough in number for anyone to claim that the issue of "which surgery is best for any given situation" is settled.
To my mind there are two variables that are complicating things the most: surgeon experience and overall patient health, which is closely correlated with age. Surgeon experience is the most reliable predictor we've found of good surgical outcomes for schwannoma removals. Naturally, as new techniques come online it takes time for a broad base of surgical experience in those new techniques to be built up. Endoscopy is now the norm for all sorts of surgical procedures, but it took time for that to become the case... and so it will be with schwannomas.
Health and age are an interesting variable here, though, and since recovery times can vary so widely depending on those things it makes sense for people on the older or less healthy end of the scale to consider minimally invasive procedures. I'm young and healthy, so for my surgery I chose to go the route of well established procedures and I have absolutely no complaints. But for someone older or less healthy, who is looking at months and months, maybe years to full recovery from now-traditional surgical procedures, I would think that an endoscopic approach would merit long and careful consideration.
Regardless of what you choose, Agnes, I (and I'm sure others here) would love to hear what you choose. I know that I'll also be following the results on endoscopic procedures for our tumors as they trickle out into the medical literature. Just as those of us who have had surgery recently are fortunate to have current medical techniques on our side compared to those of 30 years ago, I have no doubt that people getting surgery 30 years from now will be much better off in their available options than I was.
One area of life where the idea of "progress" fully holds is medical care -- and that's a wonderful thing. :)
-
I'm sorry I can't find more, but maybe you could contact MEI and ask more about it?.?. I know they haven't done it that way long there, but they have a much better reputation than that SBI Dr on California.
I have to agree whole-heartedly with your last statement.
From what I've read about Dr. S @ SBI it appears he's very controversial.
Jan
-
Erie and Gee, thanks for your post on endoscopic. I was looking into that procedure but there is no one in this area that does endoscopic or minimally invasive . This surgeons here that perform AN surgery were concerned with the possibility of a nicked blood vessel for which there would be no help due to the small are in which they would be operating. Here again is the key...a surgeon with lots of experience and expertise. This type of surgery will probably gain in popularity as more and more surgeons and facilities perform this type of operation.
Skip
-
I am having a minimally invasive (endoscopic) AN removal on November 2, 2012. From the literature that I have read, the endoscopic removal does not have anything to do with the outcome regarding hearing loss, facial paralysis, or balance issues. It does however have everything to do with the patient's healing process. Since the hole cut into the skull is the size of a quarter vs. the size of (I don't know...) the size of a small palm of the hand, there is less chance for infection and CSF leaks. There is a much faster healing time, and additionally, it requires less instruments and less hands inside of your skull.
If a blood vessel is nicked and the hole isn't large enough to get to it, I suppose that's just another risk of surgery. There are risks with all of the different types of surgeries for AN. My personal opinion is that I'd rather have less of a chance for meningitis or CSF leaks, and a shorter more tolerable time in the hospital.
See, this is why these decisions are so difficult. Outcomes of complications are are so subjective. I'd rather this, she'd rather that, he'd rather this, etc...etc. We all have to decide what we can or can't live with for the rest of our lives if things go wrong. Scary but true.
-
I will be interested in every detail you are willing to share about your experience. My thoughts and prayers are with you.
Karen
-
Good luck.
I had retrosigmoid - the conventional way - and didn't have a CSF leak or an infection, but I guess there may be some that do.
Hope your surgery goes well.
Jan
-
I thank everone for their input, it so nice to have a group of us out here to converse with regarding the same conditions. I am going to first
get my next MRI, and I have an appt with my physician on Oct 30th. I have different insurance now, so I have to get the whole preauth done just to have my MRI. Once the MRI results come back, I can see if this has grown any. I will go forward from there. Cyberknife is also an option. The reason I am looking into the endoscopic procedure is because I have a husband home that is disabled which would put a real
hardship if I was to have the normal skull based surgery, which is why I was looking into the endoscopic surgery, less down time. Unfortunately since I am the only one working, I cannot afford to go to California or travel out of state. If so, I would probably chose House Clinic. I will certainly do my research on the endoscopic procedure before I decide. I know that they do that procedure in Orlando Florida which is about 2 hours away from me. Cyberknife is done right here locally. I have already done my research on Cyberknife because I was diagnosed with this in 2007 so I was researching all of my options just in case I had to come off of the watch and wait list. I will keep in
touch and let you know once I get my MRI results back. The tingling all across the top of my head may not even be from the Neuroma, but I want to check it out to be sure. I appreciate all of you....
-
Pajamas - You are right that risks pertain to any procedure. My analysis of minimally invasive AN removal indicates shorter operative time, shorter recovery time, few ICU stays, lower overall morbidity, and quicker discharge. That said, I did have a CSF leak that healed on its own in a short time and did not delay my discharge at all. While there are no guarantees from any procedure, I'd still opt for the less invasive surgery I did have. Not everyone would make the same choice. I'm glad your choice is made and good luck.
-
Choices and more choices for us to make. I thank God I am not alone in my decision making process. He is here to guide me as I walk this path. What is right for one of us is not for the other. Sometimes I had wished for a guide book and set of instructions to help each of us along with our decision making. Such is life. Choices we have to make our entire life guide us towards our future destiny. I hope and pray we all leave this earth better than when we found.
Skip
-
Karen,
I will definitely keep you all updated on every aspect of my surgery. It's actually been moved to 11/7 to accomodate another surgeon's schedule. Anyway, I'll be on here letting everyone knows how it goes.
Jamie
-
For those watch and wait for years. How did you deal with the symptons. What are we waiting for? I often wonder if I should just wait . I've been told I could watch and wait, get surgery, or cyber knife? I just want it out..but soo afraid of the complications.
-
All the best Pajamas! I personally would be checking this procedure out more if it ever became necessary for me to interact. As for now I`m doing fine with W+W and hope that this will stay my fate. Prayers and Best wishes, Mickey
-
to dtorres135
In answer to your question regarding how do we wait? It depends on the symptoms that we have. I only have some hearing loss in the left ear, which I can live with. Any treatment that I chose will not regain the hearing loss that is now gone. I hardly have any symptoms and was advised by my physician in 2007 to wait if I wanted to. I am just the type of person that is satisfied with waiting because supposedly these are slow growing and I guess I have the hope that mine will never grow enough that I have to have anything done. If so, I have options as to which is the best thing for me. Some people want to have surgery or radiation immediately, its just personal choice. Hope this helps.
-
Pajamas,
I wish you the best of luck and I am interested to see how you make out with this, since its
something I am considering if I need treatment. You are in our thoughts and prayers.
-
I'm interested to hear the results you receive from the MRI. It's fortunate you have done so much of your homework already.
Karen
-
I went to my physician on Tuesday because I have a different insurance company now. She submitted the information to the insurance company for pre approval for the MRI but I still haven't heard anything yet. I will keep in touch and let you all know how the MRI turns out.
It won't take me long to get the MRI appt, its just waiting for the approval. I am very claustraphobic, so I have to go to the open MRI.
-
I often wonder if I should just wait . I've been told I could watch and wait, get surgery, or cyber knife? I just want it out..but soo afraid of the complications.
Watching and waiting - if you're given that choice by a doctor - is a personal choice. Surgery and radiation are personal choices too.
Bottomline, you need to do what you think is best for you and what you are comfortable with; after consulting with a doctor or doctors.
I was told I could watch and wait for a while, but I declined; mainly because I'm the type of person who would have lost my mind watching and waiting ::) It works great for some, but I would have been a basketcase. I'm a worrier, can you tell?
I'm a very black & white type person. I like to be proactive and I don't like to sit and wait; I'm very impatient. One of my biggest things was just wanting to get the tumor out of my head. I wanted to deal with whatever side-effects I encountered and get on with my life. I chose surgery, but to each his own.
Follow your heart, your head, and your gut.
Best,
Jan
-
Jan, I read your profile more carefully just now and WOW are you fortunate you didn't wait for treatment since your AN grew so rapidly!!!!!!
karen
-
I'm also fortunate that I didn't opt for GK.
By the time they would have clamped the frame onto my head, put me in the MRI tube, and decided to zero in on the tumor, they would have had to stop the procedure. My neurotologist told me after surgery that, in his opinion, it was too large to radiate.
Alls well that ends well ;D
Jan
-
Whew! That was a close one!!!!!! I'm sure glad it worked out like it did for you. :)
karen
-
I have my MRI scheduled for November 30th, so I am interested to hear what the results are. I will keep in touch and let you
know as soon as I know something.
Has anyone heard from Pajamas yet as to how she made out with her surgery?
Hope all on the forum have a good thanksgiving holiday.
-
I have my MRI scheduled for November 30th, so I am interested to hear what the results are. I will keep in touch and let you
know as soon as I know something.
Has anyone heard from Pajamas yet as to how she made out with her surgery?
Hope all on the forum have a good thanksgiving holiday.
Agnes ~
Jamie's surgery was successful. She's home and recuperating. http://www.anausa.org/smf/index.php?topic=17985.msg979749171#msg979749171 (http://www.anausa.org/smf/index.php?topic=17985.msg979749171#msg979749171) (see her post #16 and following).
Jim
-
Thank you Jim for letting me know. I went over to that section and posted a small note for Pajamas. I will
let you all know how my MRI turns out.
-
Thanks for letting us know about your MRI Agnes.
karen
-
Hi everyone, I had my brain MRI on November 30th. Good news, no growth. My primary physician would like me to go make an appt
for a consult with J. Douglas Green who is a neurologist and also did a fellowship at House. He is pretty new to the area here in Jacksonville but I will get a consult when I can. Hope everyone has a wonderful Christmas.
-
Hi, Agnes ~
Great news! What a nice early Christmas present. Have a great holiday! :)
Jim
-
Hi everyone! I haven't been on in a long time and I used to be davjack but that login didn't work anymore, so new me.
Wow, I am so stoked about this whole minimum thing! Agnes...here is Dr. Jho's website: http://drjho.com/lumbar_stenosis_surgery.htm
He could fix my AN and my cervical stenosis (my newest ailment). One stop shopping! I'm in love ;)
I'm in FL too but south. I think U. of Miami is doing minimally invasive surgery too, but their website is hard to understand. If there is someone good up in Jacksonville (I'm a transplanted north Floridian ;) I would definitely consider going there. Right now I'm liking the idea of Dr. Jho
Still in watch and wait...still 1.5 cm... my next MRI is in March