2x ENT surgeon vs. a neurosurgeon?

[38mmNeuroma]

Hi -

I'm a 30 year old male living in Sydney (Australia) with a 38x38x33mm acoustic neuroma (is there any way I can attach my MRI imagery to this post?).

My only symptoms are a slight to moderate hearing loss and tinitus on the right hand side.

I'm currently with Dr. Nigel Biggs and Prof. Paul Fagan (both ENT surgeons) in Sydney, who intend to operate me on 9 November. Both are very experienced surgeons with approx. 250 and 1000 AN operations so far, respectively. Dr. Biggs would be leading the surgery and Prof. Fagan would assist; Prof. Fagan was one of the first surgeons to do the translabyrinthine approach, and is now close to retirement.

I've heard from some friends in medicine (none of which are neurosurgeons or ENTs) that say that because my tumor is very large, relatively deep in the brain and exerts significant pressure on the brain stem, it may be good to have an experienced neurosurgeon on the medical team. I also heard the same recommendation from both an ENT surgeon and a neurosurgeon overseas who I've spoken to via email and who have seen my MRI imagery. Dr. Biggs (ENT in Sydney) on the other hand says that he has more experience than any neurosurgeon at least in Australia, and that it is not necessary to have a neurosurgeon on the team.

This is how I've come to consider teams involving a neurosurgeon, such as Dr. Robert Briggs (ENT) and Prof. Kaye (neurosurgeon) in Melbourne (Australia) or  Prof. Tatagiba in Germany.

My current impression is that ENT surgeons tend to prefer the translabyrinthine, neurosurgeons the suboccipital-retrosigmoid approach. I'm aware that the translabyrinthine approach necessarily implies complete loss of hearing and balance on the corresponding side, which I'd tolerate, but also offers better access to the tumor and better chances of saving the facial nerve.

I have excellent private health insurance and am willing to travel anywhere worldwide to get this done.

Hence my questions:

 1. How important is it to have a neurosurgeon on the team, in particular in my case?
 2. Any idea about Dr. Nigel Biggs/Prof. Paul Fagan (both ENT, Sydney) vs. Dr. Robert Briggs/Prof. Andrew Kaye (ENT/neurosurgeon, Melbourne) vs. Prof. Tatagiba's team (neurosurgeon, Germany)?
 3. Any other recommendations or considerations?

My current plan is to go ahead with the surgery in Sydney, but I'm also frantically gathering more information to make the most informed decision.

I'd appreciate any help that I can get in making this decision.

Greetings from Sydney and thanks in advance!

Yours,

38mmNeuroma

[leapyrtwins]

38 -

an acoustic neuroma of your size is large, so your concerns are understandable.  They are also understandable if your AN was any size, quite frankly.

I don't know the answer to your question, but here in the states, I know of very few ENTs who do AN surgery.  Speaking from my own experience, I believe most AN surgeries are done with a neurotologist (highly specialized ENT) and a neurosurgeon. 

However, the surgical team you are proposing might be the norm in Australia - and in other places.

Experienced is key in AN surgery, and from your post it sounds like your doctors have experience.  But, you need to be comfortable with your decision and choice of doctors.

You say you are willing to travel anywhere for AN surgery.  You might want to send you MRI results to House Ear Institute (HEI) in Los Angeles, California.  The docs there are the pioneers of AN surgery.  You might feel more comfortable having your surgery there.

Good luck,

Jan

[CHD63]

38mmNeuroma .....

Welcome to this forum.  I, as well, know nothing about physicians in Australia.  We have several people who have posted on this forum from Australia so hopefully they will see your post and respond about the doctors you mentioned.

The fact that you posted this makes me wonder if you are insecure about having your surgery on November 9th.  Unless your symptoms are extreme (and with an AN pressing on the brainstem you should not wait very long), I would vote with Jan that you send your MRI to HEI in Los Angeles for their opinion.  They will tell you their opinion with no obligation to have them perform the surgery.

As Jan said, because of the rare nature of ANs, you want the surgeon with the most successful experience treating ANs, specifically ...... not just brain tumors in general.

Best thoughts and let us know how you are doing.

Clarice

[joebloggs]

Hi 38mm!

Thanks to the lovely Kay for directing me here - I am a fellow Australian and post surgery success story.  I don't know that much about Sydney to be honest - I believe that Larry had surgery in Sydney and was not well pleased but that'd be a story for him to tell.  Hopefully he'll pop on here to talk to you.  I'll send you a PM because I don't want to bore everyone again with the backstory, but I'd defo recommend Melbourne from my experience.

Cheers

JBloggs.

 

[Lizard]

Welcome to the forum, and yes any AN should be done by a surgeon with lots of experience. Not sure why two ENT's would be doing the surgery and not a team with an neurosurgeon? Perhaps there is some specialized training they can receive in Australia, also agree that since you can travel anywhere you might want to have a consult with HEI. They are the best of the best!
Good luck to you in this decision making process.
Liz

[Jim Scott]

Hi ~

I just wanted to welcome you to the ANA discussion forums.  Fortunately, the previous posters have stated pretty much all there is to say, and I trust that 'JB' will be able to offer you more detailed information on her experience.  I had a large (4.5 cm) AN that was pressing hard on my brain stem.  The neurosurgeon I employed decided (with my consent, of course) to 'de-bulk' the tumor, in effect, hollowing it out, then having it irradiated via FSR.  Both the surgery and radiation were successful and I came through the operation and the radiation sessions with no complications.  One note: there were two doctors involved in the surgery - both were neurosurgeons; the 'lead' neurosurgeon (30 years experience with AN removals) and his younger assistant.  The radiation was 'mapped' by the lead neurosurgeon and a radiation oncologist. 

As others have pointed out - and I'll reiterate - when choosing a doctor to perform AN surgery, experience is the key .  It's imperative that you feel comfortable and confident with your surgical team.  I did, and it made things much easier.  I trust you'll have a positive outcome and that we can be of some help and support.  Please keep us informed of your decisions.  Thanks.

Jim

[Cheryl R]

The Univ of Iowa only uses 2 neurotologists for the AN surgery.        Every place is different.     I will be 9 years on Nov 1st since my first AN surgery and my neurotologist had been there for several years and they do around 60 a year plus CI's and other types of tumors.       We have had several from here have surgery there.                           Cheryl R

[38mmNeuroma]

Hello everyone!

Big news! Just a few hours after my original post I decided to have the surgery done by Prof. Tatagiba in Tubingen (Germany). I then went on a short holiday, got back from the holiday late on Monday and then flew to Germany on Tuesday! I hadn't checked for responses on my original post since then (and I had mistakenly assumed that I'd get an email notification if anyone replied). Wow, thank you all for your help!

So here's what I've gathered in the meantime, after speaking to some more medical staff:

 - Everyone says that I should have a neurosurgeon on the team. However one person in Sydney told me that he would agree with that in principle, but that Prof. Fagan / Dr. Biggs are an exception and that they are really good.
 - Dr. Briggs in Melbourne recommended I have it done by him (ENT surgeon) and Prof. Andrew Kaye (neurosurgeon) in Melbourne
 - Prof. Tatagiba in Germany recommended I have it done by him.

I've also had the LA team recommended to me a couple of times, but the first time I heard about them was just after I made the surgery appointment in Germany, and I felt that I didn't want to change my mind again.

I heard good things about Prof. Tatagiba and know that he operates about 100 acoustic neuroma a year, so I decided to go there. My operation will be on 9 November (same date it would have been in Sydney).


@joebloggs - thanks so much for your long personal message! I'll respond to that one as well shortly.

[CHD63]

Glad you have made a decision.  Most of us can attest to the fact that not knowing what we were going to do about the diagnosis was one of the most stressful parts of this whole journey.

Hopefully you can relax and do some fun things between now and November 9th.  You might want to finish up some of those nagging tasks that might annoy you post-op if they are not done.  It also helps to have some assistance in place, in case you need it.  Will you have family/friends available to help for awhile?

Thoughts and prayers.

Clarice

[38mmNeuroma]

Hi all -

Yes I do have some friends in the area who will be able to look after me for a few weeks. Hopefully the recovery won't take too long and I'll be able to stay in hospital while I'm still dependent on others 24 hours a day.

Not sure what kind of tasks I need to do that will be harder after the surgery. The only thing that I thought of was to get some audiobooks on my MP3 player so I can listen to them after the surgery; presumably reading a book or on the computer may be somewhat harder and more strenuous for a few days after the surgery?

The surgery has been moved to 10 November (assuming I'm well by then - currently I'm sick in bed with fever), and I should be admitted to hospital on 8 November.

Hope you're all well - keep your fingers crossed for me on 10 November!

38mmNeuroma

[CHD63]

Hi and so sorry you are sick right now ..... you did not need that!  Hopefully it is a short-lived virus and you will be good to go by the 10th.

The audiobooks are a good idea because many of us had difficulty focusing for while post-op.

I do not know what your family or employment situation is, but sometimes it helps to have the laundry all caught up, bills all paid, or anything that cannot wait for a couple of weeks until you feel like doing it afterwards.

Best thoughts.  Clarice

[38mmNeuroma]

Hi all -

just a quick update. It's now been two months since the surgery. I still have complete facial paralysis on the AN side which hasn't improved at all yet, and of course I'm still deaf on that ear. Other than that, I feel pretty well, I have no headache and only slight balance problems.

I wear an air tight bandage over my eye at night and use eye drops constantly. As my facial nerve paralysis is my main remaining problem, I'm seeing a physiotherapist 5 times a week for PNF (proprioceptive neuro fascilitation, or however you spell that in English), and I also do 2-3x 10-15min facial training at home.

I'm getting a bit frustrated because I'm not seeing any facial movement yet and the eyelid closure hasn't improved, but it appears this can take years so I guess I just have to be patient...

Hope you are all well -

38mmNeuroma

[Jim Scott]

38mmNeuroma ~

Thanks for the 60-day update.  I'm sorry to learn you still have to deal with the facial/eye issues but as you stated, one just has to be patient.  Usually, when you put in the time and effort with facial exercises and such, it eventually pays off.  Unfortunately, there are never any guarantees.  I hope and will pray that you see some success (movement) soon.

Jim

[CHD63]

38mmNeuroma .....

Thanks for letting us know how you are doing.  So sorry you are still dealing with the facial paralysis but with a tumor the size yours was, it is not surprising that the facial nerve took quite a beating.  Did the doctors tell you anything about the specific trauma to the facial nerve during surgery?  It is good that you are wearing an air tight bandage over your eye at night.  It is so important to keep it well lubricated so you do not damage the cornea.

Many thoughts and prayers for facial movement soon.

Clarice