4 cm AN Retrosigmoid/Sub-occipital Approach surgery OHSU?

[4cm in Pacific Northwest]

I have recently been diagnosed with an atypical  4cm acoustic Neuroma (who “some’ neurotologist and neurosurgeons are speculating it ‘could’ be a meningnoma or some other type of benign tumor) There also seems to be conflicting opinions as to whether this should be done via Translabyrinthine or Retrosigmoid/Sub-occipital Approach due to the large size. (With this late tumor discovery radiation is no longer an option.) So far I have received 6 opinions.

Has anyone ever had Retrosigmoid/Sub-occipital Approach surgery done at Oregon Health and Science University (OHSU)?

So far in reading the forum I have only seen one contributor who has even had a Retrosigmoid/Sub-occipital Approach surgery on a tumor this large (ok ok “giant�) Are there others?- (Particularly with success stories)

[NF-2er]

Hi In the NW!

   Yes, there are other success stories. I've read them through the years but apparently as of today, no one has come forth.
   Meningioma should be easier to remove.
   Sub Occiptital sometimes produces stiff neck or post operative head aches which can last for a long time. Much depends on the surgeon and whether he replaces a specific flap on the Mastoid Bone. Because of this, I would choose a younger otologist and neurosurgeon versed in "new school' approaches.
   There is a Dr. at HEI who I wouldn't recommend for your situation and others with 3.5 cm. ANs and above.
   You/They want a younger Dr.
   Best eishes to you in this!!

   NF-2er

[Cynaburst]

I had a 3+ cm. AN removed via the retrosigmoid approach in 2002 by Dr. Keith Black at Cedars-Sinai in Los Angeles.  I have a very small amount of facial weakness (not so you could really tell), no residual hearing , but no other residual symptoms.  I also had hydrocephalus from the tumor, and had a VP shunt implanted.

It's been 5.5 years, and I haven't had any problems resulting from the surgery.  By the way, before the surgery they thought my tumor might be a meningioma as well, but the pathology showed an AN.

[NF-2er]

Hi;

   Re, "Oregon Health and Science University (OHSU), I would consider UCSF first. Just a personal opinion.   -NF-2er

I have recently been diagnosed with an atypical  4cm acoustic Neuroma (who “some’ neurotologist and neurosurgeons are speculating it ‘could’ be a meningnoma or some other type of benign tumor) There also seems to be conflicting opinions as to whether this should be done via Translabyrinthine or Retrosigmoid/Sub-occipital Approach due to the large size. (With this late tumor discovery radiation is no longer an option.) So far I have received 6 opinions.

Has anyone ever had Retrosigmoid/Sub-occipital Approach surgery done at Oregon Health and Science University (OHSU)?

So far in reading the forum I have only seen one contributor who has even had a Retrosigmoid/Sub-occipital Approach surgery on a tumor this large (ok ok “giant�) Are there others?- (Particularly with success stories)

[HeadCase2]

  Just wanted to comment on the statement above that a meningioma might be easier to remove.  I remember reading (it may have been in House's Accoustic Neuroma textbook) that one of the reasons they do a pathology study on tumor material while the operation is in progress, is because if the tumor is menigioma rather than a schwannoma (most ANs), meningioma can be more aggressive in affecting surounding structures, like bone, so the surgeons may be more liberal in removing bone and tissues around the tumor if it is a meningioma. 
Regards,
  Rob

[ceeceek]

Hi there,,
 A little info on the size of your tumor in regards to radiation....you may be a candidate for CK (Cyberknife) radiation treatment,,,one of its advantages over gamma,,,,,it can treat tumors of larger size, and I would highly recommend a biopsy before proceeding with any type of treatment...I would hate to think you went through surgery to find the growth is benign...I went through similar experience,,,everyone aggreed, I had what looked like a benign growth, but in really wierd spot....I found endo approach with possibility of resection to be my best option,,that way no disturbing my brain in the process of trying to find out what it was...(vidian nerve schwanomma), and they had the chance to try and remove it...no luck unfortunately,,however with official diagnosis I am a candidate for CK, and my tumor is at 3cm right around my carotid artery up under my brain..( a skull base tumor..) I know they treat larger than mine so you may wish to visit the cyberknifesupport.org site....the Drs are great, answer quickly, are well informed and do not hesitate to recommend other options other than CK....
Good luck
Ceeceek

[4cm in Pacific Northwest]

CeeCeek

Thanks for your post. I have consulted with 9 surgeons and 5 are considered to be world class (i.e. wrote the textbooks, are the international conference speakers and one has the patent on the nerve probe etc). The tumor is placing considerable pressure on the brainstem. (Gamma Knife is absolutely not an option for me now -barked up that tree first i.e. “been there done that�). It is that “location, location, location’ comment again. Tumors treated with GK will initially swell before they shrink (or shrivel). We cannot afford to have this tumor get any bigger- being that one ventricle is partly closed due to the pressure it is applying. Although there were many issues the surgeons did not agree on- the ONE thing ALL agreed on is GK is no longer an option. A biopsy will require skull drilling to take a sample due to the location (most of the tumor is toward the brain stem) … might as well have the craniotomy if that has to happen - to get “Ted the tumor� out of my head.(ALL agreed it MUST come out)

“Ted� must leave my head…

They will de-bulk the tumor with surgery. I am asking that residual be left close to any nerves. Later on - THEN we can do GK (if there is re-growth). If this, in fact, is an AN we are looking at up to a 10+ hour procedure. If it is a meningioma (or some other type tumor) the surgery could be as short as 4 hours. AN’s are the most adhesive and difficult to dissect and remove. If this is an AN there is a 30% higher chance (mostly due to the size) of post –op complications (facial palsy etc)

I have read (and paid for) various publications by top surgeons. AN patients must realize that “if� GK is not effective in “zapping’ a tumor (the case with some patients) than it can be much more difficult to surgically remove after GK. The nature of the tumor changes ‘after’ radiation and often can make it more adhesive to nerves - making it much more difficult and trickier… to dissect and take out later. For other patients however it is very successful treatment.

AN’s are typically not fast growing. However there is a 40% chance this is not an AN. There is one rare tumor that can be fed by hormones (more common in females) that actually will grow at a faster rate.

This week ‘Ted’ will leave my head. Post surgery (once I can focus on my laptop screen again) - I will be sure to post the outcome of the cytology report (that will identify ‘what’ sort of tumor it actually is) - here on the AN forum. Mentally I am “preparing for the worst and hoping for the best�. I chose surgeon #8 (and his team) out of the nine I consulted. (I also did background checks on the ones I seriously considered for the procedure). In MY case (every case is different) I think I chose the best team (TBA in my ‘post-op’ post)… 2 top American surgeons and a Canadian ‘fellow’ assisting (he is getting his certification in the procedure here). “If and/or when� I ever choose to return to Canada- I will have someone knowledgeable (i.e. the ‘fellow’ assistant) who witnessed my procedure -to consult with. I also want Americans and Canadians to know that healthcare systems on both sides of the border have their pros and cons … and I am most appreciative that I had some choices here. I am most concerned that USA AN patients have to make treatment based on their finances and insurance policies (many do not have) but I also acknowledge the doctors and hospital bed shortages, in Canada… not to mention their ridiculous waiting lists. Neither healthcare world is perfect… will there ever be a fair balance?

I cannot thank the folks on this forum enough. Many were SO helpful and one I even had the opportunity to speak on the phone with. From this forum I was sent links to research, patients with similar cases to correspond to … THIS AN FORUM IS INVALUABLE! I especially want to thank Jeff who posted “Chateau Deaf�… he is a patient we should ALL take our hats off to and salute. He was able to write and contribute to a petrified patient… after all he has been through. I am SO pleased he is seeing some improvements -now in his post op recovery.

4

[yardtick]

4,
This Canadian Dr, is he from the Toronto area?  Being Canadian I agree with your comments about bed shortages and ridiculous waits.  My husband works at hospital in women's ob/gyn.  Yesterday the director of the unit talked to the staff about bed closures.  He claims it is all about politics.  In Oct Ont is electing a new Premier, and it seems every time there's an election Federal or Provincial just prior beds and wards are closed so the politians have something to promise the constituants.

I also agree with you about this forum.  My sons say I'm obessed with this forum.  I can't argue with them.  If it wasn't for this forum I think I'd go insane.  It is has helped me cope to know others, unfortunately understands what I'm going thru.  I suggested to my family dr to check out this forum in his spare time. 

I wish you all the best with your surgery. 

Anne Marie

[ceeceek]

Hey 4cm

Understand about the whole unable to swell issue...and was wondering if you have looked into endoscopic approach...I too was not a great candidate for surgery due to location and doing a biopsy meant drilling through my brain as well..hhmmm..did not seem like a great idea..I wound up having transphenoidal endoscopic approach surgery..ie...through my nose under my brain...did not touch my brain..was able to remove a small amount of tumor and identify it,,,and rearranged my sinus cavity so that when I have CK, I have a little room for swelling...Now mind you my tumor is not up against the brain stem...it is however wrapped around my carotid artery which in itself poses some interesting challenges...so was wondering if you were a candidate for an endo approach...some are through the nose,,in your case, I would think it would be behind your ear, but may be a better option that traditional....it is a suggestion you look into it, and nothing more, but may allow you to be treated with GK or CK without such a serious operation...
and by the way...treating with radiation does not necessarily impede surgery later.....there is much debate if radiation changes the consistancy of a tumor, but since the tumor was not necessarily seen prior to this treatment, no one knows what kind of consistancy it had before radiation...and still most surgeons with experience can still remove them the same as ones whom have not been radiated if you look further in that particular research.....so do not rule out the possibility.
Good luck and keep us informed

[ixta]

Whoa ceecee Through the nose! I had thought sbi did it behind the ear, sorry didnt catch that, Someday I'm sure shahinian will be able to go through the elbow or little toe one day HA! That wouldnt qualify as less invasive though.
4 cm, I mailed you and will be glad to talk to you about my experience with SBI. There are a handful here that went that route, chopper, ceecee jerseygirl and another guy, There is also one that went endoscopic in Florida recently but I forgot their name.

[NF-2er]

Hi;

   Seems pretty soon we should be getting some peer reviewed statistics from Shahinian at SBI. I don't believe the procedure is catching on except for one other facility near LA.
   Anyone know of any other Drs using a totally endoscopic removal?

   Russ

[ixta]

yes, a florida doc that someone has posted about recently, I forgot the posters name.
There are three so far, shahinian, that Korean doc on the east coast, and now this guy in Florida.
Less invasive endo is the future I believe, no chest spreaders for open heart, etc