HELP! “Translab (T/L) or Retro-sigmoid (R/S- i.e. sub-occipital) for a 4cm?�

[4cm in Pacific Northwest]

I have a 4cm atypical AN (60% chance it is an AN- 40% something else e.g. meningioma etc).

I have received 8 opinions in the USA: 4 votes for the T/L and 4 for votes the R/S. One reputable Canadian surgeon broke the tie with a R/S vote.

(I will not even start on the out-of pocket costs I have incurred with flights, research, www.healthgrades.com reports, courier fees for to send out MRI Cd’s etc. Nada Nada naa…However I am determined to choose THE best and most qualified surgeon team, for my case, given the large post-complications risk if I choose and inexperienced and less capable one.)

My pendulum keeps swinging: “R/S or T/L?�. I would really like to hear some testimonies from other 4cm (or close size) ANer's that have had this done “personally�. (Unlike the surgeons- who have not had this done to themselves). So far I have yet to hear of a 4cm R/S that did not have post op complications (facial palsy, eye, etc).

If I have a T/L and this is NOT an AN - I may regret not giving hearing preservation a chance. (I.e. I will be kicking myself for sacrificing my hearing through a T/L when there was a remote chance of preservation.) However the T/L proponents are saying that with removing a 4cm meningioma I probably will have little hearing preservation with the R/S approach anyway. If it is an AN the R/S will not give me any hearing preservation (all 9 actually  agree on that point)

The R/S voters disagree. They also advocate that the R/S is not riskier if you have a skilled surgeon.

I am the patient in the middle- who although not from the field of medicine - do have a University research background.

My value priorities are
1) Life preservation
2) Facial nerve preservation
3) Hearing preservation the least priority of the 3

It is amazing that so many top notch world renowned surgeons have such varying opinions- from each other. I think, at this point, I would like to hear from some experienced PATIENTS (who actually have gone through this- themselves with a “giant� like mine).



Does anyone out there in our big AN world (which I realized is small) have some testimonies they can share- or experienced ‘insight and wisdom’ to impart with me?

4cm in the PNW

P.S. I have already met with the most world renown expert, Dr. Derald Brackmann (wonderful man- now age 70) of House, and read his research papers. He is not the only world renowned “surgeon� I spoke with. I am realizing there is a “newer school� and an “older school� approach to AN Microsurgery. However I want to hear from “Patients� and their perspective… The ones who live, daily, with their microsurgery choice... Help! (Please)

[neal r. lyons]

Hi from Neal!  Your Old vs New school comment really got my attention.
I've been wondering myself to what degree training plays in the type of surgery being recommended.  Have those making the recommendations been trained in both approaches or has their training only been in one or the other?  This question needs further exploration if it has not already.  I was of the mind that when one approach was favored over the other that the decision was based, in part , because the surgeons were only trained in that approach.

You can rest assured that life preservation should not be an issue for you as there are many highly skilled surgeons as you know.  So focus on facial nerve function and hearing.

My tumor was only 2.8cm although impacting my brainstem.  I had it removed via Translab june 22, 2007.  I think they got it all.  I am in what i'm calling wait and see on return of facial nerve function.  I know it can take months  and they really can't make guarantees although statistics are in my favor.  There is some information on p.36 of the MediFocus Guide on Acoustic Neuroma which may be of interest to you.  It has comparative stats regarding translab  and sub-occip approaches in conjunction with facial nerve and hearing functions.  Best wishes to you in your search.  Neal

[amymeri]

Hi PNW

I just responded to your PM but now reading your post I wanted to add more.

1.  I think your hearing is lost whichever way.  A tumor that big takes so much blood supply away from the nerve that when it is removed there is no blood to the nerve and so even if the nerve itself is miraculously saved, your hearing won't survive.  All my doctors said it can't be saved, and certainly meaningful hearing can't be saved.

2.  I am not sure of the safety profiles of the two approaches, but since the risks of surgery are mainly in the anesthesia and general surgical risk, I am betting it doesn't make a difference.  My surgeon said the risk is about 1%.

3.  I wonder why the TL approach would better preserve facial function?  I ask because the reason my face was affected was because the tumor was wrapped about my facial nerve.  The facial nerve runs alongside the vestibular nerve inside the IAC.  It seems to me that a TL approach would be just as risky.  Its my understanding that TL approaches are usually for slightly smaller ANs.  So the stats about RS approaches and facial palsy may have more to do with the large size of the typical RS tumor rather that the approach.

These are just my thoughts....preserving the nerve is well worth the effort.  A skilled surgeon is a must.  But I had a wonderful pair of surgeons with tons of experience and skills, my tumor slid off the nerve, the nerve worked for several days after and then crashed...18 mos later and my function has not fully returned.  Its a crapshoot.  In hindsight, I should have asked them to not touch the nerve.  I think I would rather have a little residual to zap rather that the paralysis.

Amy

[4cm in Pacific Northwest]

Amy,

Thanks for your above post reply and e-mail.

You wrote

“1.  I think your hearing is lost whichever way.  A tumor that big takes so much blood supply away from the nerve that when it is removed there is no blood to the nerve and so even if the nerve itself is miraculously saved, your hearing won't survive.  All my doctors said it can't be saved, and certainly meaningful hearing can't be saved.â€?

I guess what makes my case unique is that there is a 40 % chance the tumor is NOT actually an acoustic neuroma (the most difficult to remove). All 9 surgeons (in Canada and the USA) consulted - were NOT absolutely sure it was an acoustic neuroma (AN). There appears, on the MRI, to be very little swelling of the hearing nerve – as the dimensions are identical to the normal hearing side ear nerve. If this is a meningioma (or some other benign tumor) then there is a fairly good chance of hearing preservation as these are easier to remove (i.e. not as adhesive as an AN.) However if this IS an AN – I know there is NOT a chance the hearing will be saved - due to the giant size.

If I do a translab there will be no hearing preservation regardless of the tumor type. Some surgeons feel that the translab provides better access to the tumor (if they are positive it is an AN this is preferred for the 4 CM + size) … and there is better access to the nerves and their visibility. Other surgeons (in the newer school) do not agree as newer techniques have been developed and improved since Dr. House developed the translab. Dr. Brackmann, of House Ear Clinic (HEI) preference for large tumors IS the translab. (Both Dr. House and Dr. Brackmann are THE pioneers in AN treatment and have treated many patients and trained many fellows to do this surgery … I salute these two in their devoted lives of dedicated work to treat AN!) However their graduates, the newer school, have taken what they learned from them and built further from there. Those House graduated fellows are now training fellow surgeons in both retro-sigmoid and translab for large AN’s. Some now even too- preferably do Retrosigmoid surgery on large tumor patients. I have received some replies of 4+cm PT’s, having a Retrosigmoid, in this forum, who had very minimal post-op complications and some who have had a very rough recovery road. (Similar to those who had the translab on a 4+cm)

Much will depend on the individual patient’s health, the make up of their tumor, and how skilled a surgeon is -chosen to remove the tumor.

My case is in the “gray area� where ultimately it will be ‘my’ choice (that I will have to live with- daily.)

In my parents’ day there were reel-to-reel tape recorders, LP’s, home movie projectors, only B & w TV’s and dial phones plugged into the wall. Now our kids are asking for the “I-phone�. My parents, back in the 1960’s could not even conceive of something so advantaged in technology -as an I-phone. As the MRI improves with technology (or is replaced with something more advanced)� future� patients may know “what� their tumor actually is, for sure, BEFORE the craniotomy. Also education will enlighten people in the next generations (i.e. people will more commonly have heard the strange words “acoustic neuroma�) and large AN’s (like yours and mine) will be unheard of- as MRI (or the higher tech replacement) will hopefully be more obtainable to ALL patients (to catch these at an early stage.)

Meanwhile I live in an era caught between the “old school� and the “new school� -in the treatment of AN’s. I also live in a time when the surgeons are not absolutely sure this is actually an AN (or some other tumor)… and won’t until once they have opened the skull to see it.

The questions that were asked of the pioneers were primarily about mortality rate. This is not so much a worry now - as it was back the 1960’s. Now we primarily ask questions about morbidity and cranial nerve functions.

You wrote
“I think I would rather have a little residual to zap rather that the paralysis.�

Thank you for this invaluable information. I am going to ask the surgeons to leave residual (close to the nerve) and agree to GK later “if� there is re-growth.

You folks on this forum have been super! I cannot tell you how much I appreciate all the responses (e-mail or public posted here) I am getting. This is very helpful.

Thanks again,

4cm in the PNW

[amymeri]

Hmm, interesting about the issues with meningioma vs AN.  Have you been to the meningioma mommas board?  (for men and women).  A super, super board full of helpful people, BTW.  www.meningiomamommas.org

There was some initial confusion with my tumor as well...same as yours.  There was very little involvement on the vestibular nerve, my symptoms only stemmed from compression of my trigeminal nerve...I had NO vestibular or hearing deficits and my tumor didn't have the typical appearance of an AN.  There was some question that there might be a dural tail (common in the meningioma) and so we just weren't sure.  I was also told to pray for the meningioma because of the possibility of saving my hearing. 

I will say that your order of priorities is just what I would say.  The hearing loss is an annoyance, for sure, but a minor one.  However, for some people the loss of vestibular function is significant.  I started riding my horse again 3 months post-op and was soon back to normal for the most part--for balance.

I think I would simply pick the best surgeon at the best hospital I could find and go from there.  Pick someone who has the skills and outcomes you feel comfortable with, and someone you trust instinctively, someone who has a good staff that is receptive to your questions, easy to access, with good follow-up.  Then follow the advice of the person you picked. 

I don't know if my surgeon going for every last bit was the cause of my paralysis.  Right before I went into surgery he sat down and held my hand and said

"My priorities are this:  First, do no harm.  I am going to keep you alive.  Second, save your facial nerve and third, get all the tumor."

I know my doctors debated during the surgery but felt it was sliding off so smoothly they could get it all.  And my nerve was saved.  It was the swelling afterward that caused the paralysis and they I developed the synkinesis.  But if I could choose now, I would say do anything to save my face.  Maybe I would be second guessing that if they had left a little tumor and I had to have more treatments.  I just don't know.

Amy

[Gennysmom]

Hi PNW!

Who else have you consulted with?  As you can see, I had my surgery done here in the PNW.  3.1 at time of MRI, 4 months later it had "grown considerably", whatever that means.  I have some residual paresis from my translab.  My hearing was almost nil anyway, so that wasn't a loss.  The consideration I had was that I get tension headaches, and R/S potentially increases the likelihood of post-surgical headaches, and I didn't want anything to do with that.  I have no headaches that I attribute to surgery disturbance, and I'll take a little facial dysfunction as a decent tradeoff for that.  I think my surgeon did a great job, and am happy with my decision. 

The other main surgeon in our area did Kathy Goertzen's meningioma (so I'm told), you might contact her at KOMO 4 news and see what she has to say.  I know she's responded to others questions. 

Do what your heart/head is telling you....I think that's the best way.

Good luck!

Kathleen

[Larry]

Hi PNW,

Interesting that they can't tell if its an AN or not. I would try and search out more ENT's and ask if any have faced that dilemna at the start and see if they have learned anything. or you could expand your google search on the subject and see if anything has been written up on these issues.

As for the type of op. I used a "new" school doc and regret it since. Chronic headaches for 4 years and its grown back. Oh, this was the middle fossa approach which was meant to leave me with about 25% hearing left. It's similar to R/S in that way. Well, i have news for you. Not only has my an grown back but I am virtually deaf in that ear. Surgeon skill certainly is a factor to that end, I have no doubt. Knowing what and how to scrape it out is an experience thing. Can't beat practice.

There is no guarantee that you will escape any side effects from either surgical option.

More research in your case is needed to at least isolate whether it is an AN or not before you decise on surgery.

Laz

[amymeri]

Everyone makes great points.

I think you are going to find that every approach has unique risks and benefits and some shared risks.  I think the skill of the surgeons is probably the most important thing.  I am not sure if you are seeing ENTs or Neurosurgeons.  I had a team, the NS was the lead and the ENT was the secondary.  They work together frequently and had excellent credentials and great bedside...a good combination.

If you haven't seen a neurosurgeon, I would certainly recommend it.

I don't know if you will ever know for sure if you made the right decision unless you come out unscathed.  I hope you have very few post-op problems.

But again, pick the surgeon and then go with what s/he does best.  Because it clearly isn't a slam dunk when it comes to deciding which approach is better.  Chances are neither is better.

BTW:  If they don't know from the MRI that its a AN, then there is no way to find out without a biopsy. You won't know until you wake up.

Good luck!!!

[4cm in Pacific Northwest]

Beyond the ENT Stage
Interesting points, I am actually well beyond the consulting with ENT’s stage (as Larry has advised) - already. Of the 9 opinions I sought- this consisted of only neurosurgeons and neurotologists (of whom some are chairs, or assistant chairs, of the department at their universities.)

Stumped
All are stumped as to whether this is an acoustic neuroma or a meningioma (or some other type of tumor). I just have an atypical tumor that is very large, odd in shape and location. They are also curious as to why I still have such remarkable balance and hearing. It is pressing into the brain stem creating the “s shape�.

Symptoms
The symptoms I am having are: facial flushing, numbing in the toes and burning sensation between the shoulder blades- fatigue sets in around 3 pm. All agree these are not typical AN symptoms. (Are there any other AN’ers with those symptoms?)

Textbook?
I think all the nine consulted are incredibly curious as to what this “Ted-the-tumor� is when it finally comes out. I just want Ted out of my head - with minimal post op complications. I am just not fitting any textbook case… however my MRI images and outcome probably will end up in some textbook.

Patient in the middle of collegial debate
I am beginning to feel like Daisy-Head Mayzie in the Dr. Seuss book

4cm in the PNW

[NF-2er]

Hi;

   I've often wondered if realism is supportive.
   Guess I will venture that, to say facial nerve, nor hearing outcomes are good re, your situation.
   Greatest concern would be the most premier surgical team you can find.
   I've an idea surgical complications are your largest concern, not wishing to be negative.
   My feeling is Translab will produce the fewest post operative negative effects.
   Best wishes here. Some do well with large tumor resection, others have great challenges but please, always be confident most of those can be overcome in time.
   If you go HEI, because HEI always gets rave reviews, know a group member just had a very poor outcome with a large AN . The person is recovering however, after some months. The person's comment to me: "I think Dr... is past his prime".

   NF-2er

[Captain Deb]

4cm, Do you have an image of your AN that you could post? Or email to me and I'll post it for you. It needs a URL address to get posted , most of us upload our pic to a myspace or frappr site and use the URL from that to get it over here. We would all be very interested to see such an anomalous AN or whatever it is.

At the symposium, the treatment plan of de-bulking large tumors and then managing the residual with radiation was discussed as a way of preserving hearing and facial function.  I'm sure the skilled surgeons you've seen have discussed that one with you.

Best of luck to you and keep us posted.

Capt Deb

[NF-2er]

Hi;

   It would seem if one of the 9 experts can't tell by MRI whether the tumor arises from the brain's "meninges" ( Meningioma ) or "8th cranial nerve" ( AN ), then a 10th opinion seems reasonable. 4 cm. is large, but not so large as to fill the cranium, so the point of origin should be visible if even a thin tumor trail from the main bulk of the tumor back into the IAC, Inner Auditory Canal.
   I've read post op outcomes from meningiomas of huge size ( some, even 7 cm. ) have a better extraction rate and post surgical outcome than large ANs.
   Sounds by your burning/numb symptoms, you've got peripheral neuropathy. When it's in the torso or back ( could be referred pain ), I'm concerned! Not to be an alarmist, but realist. Flushed? Anxiety, and your body has a problem.
   Maybe send film to Dr. Samii in Hanover, Germany.
   If they don't know for sure, how can they start talking AN surgical entry points?

   NF-2er

[Windsong]

HI Aner,

Flushed? you asked as a question....
I'd say the anxiety ought to be dropped as an explanation but the "body has a problem"  phrase is more the answer.....and without anxiety coming into the picture......
W.

[amymeri]

I would also be interested in seeing the MRI.

I think a largish tumor that is mainly in the CPA could easily have no vestibular sypmtoms.  Mine didn't. 

I suspect your tumor is like mine...without the typical ice cream cone shape but also without a clear dural tail.  If I was going to send a picture I would send one to Drs Day and Black at Mass General and to the House Clinic.  These are the best in Meningiomas and ANs. 

With significant brain stem involvement you could have herniation and compression of the cord causing some of your symptoms.  Also, I think anything that affects the brain can have odd global symptoms.  Meningiomas in women seem to have hormonal connections, and mnay meningioma patients feel menopausal or other odd sensations with their tumors.  Fatigue is a very common brain tumor symptom.  Facial flushing could be irritation of the vagal nerve, or if its sensory but not visible (like blushing) then could be irritation of the trigeminal.

Can't say it enough....pick the very best surgical team and follow their advice.

Keep us posted.  I wish you lots of luck!   

Keeping my fingers crossed!

[Jim Scott]

4cm in Pacific Northwest:

Can we just call you '4' for short?   

You requested comments from actual AN ptients who had either 'retro' or translab' surgery, and I qualify, so here goes:

As my signature shows, I was diagnosed with a 4.5 cm AN tumor - pressing on my brainstem - in June of last year.

The highly experienced neurosurgeon I consulted (30 years - thousands of AN surgeries) after rejecting the first doctor I was referred to (due to his too-casual attitude and lack of experience) suggested the retrosigmoid approach surgery followed by FSR treatments.  He explained - using the MRI scan - that this approach would allow him the best possible access to the tumor.  It made perfect sense.  I was impressed that he didn't have to be asked why he wanted to use this procedure before explaining.  I was adamant about avoiding facial paralysis or similar complications so this renowned neurosurgeon also explained that he would employ nerve monitoring to help insure the critical facial nerves would not be unnecessarily disturbed or damaged during the surgery.   He went on to explain that he would only attempt to remove part of the tumor and after 3 months, he would have me undergo another MRI scan and, with a radiation oncologist he worked with, 'map' out the precise FSR treatment, avoiding nerves but hitting the tumor where it would do the most damage.  I immediately hired him and we set a date for the surgery. 

Long story short:  the surgery went very well (9 hours).  No facial paralysis or other complications.  Rapid recovery.  Three months later I underwent 26 separate FSR treatments with no ill effects.  In June, one year post-op, my MRI scan showed definite tumor shrinkage as well as necrosis (cell death).  I'm basically symptom-free and have regained about 90% of my (once-normal) equilibrium.

While my experience may not prove identical for others, the retrosigmoid approach apparently worked well for my surgeon and so, I can recommend it on that basis.  However, my hearing was already lost in the AN-side ear so hearing preservation was not a reason for choosing this procedure.  As I mentioned, my surgeon used this surgical approach on the basis of practicality, for the most part. 

Although not as timely as I might have preferred, I hope this account of my experience with retrosigmoid approach AN surgery helps.

Jim