translab vs retro?

[starryjoseph]

I was diagnosed with AN just recently and am finding a seemingly "cultural" difference of opinion between east coast doctors and west coast doctors. My tumor is 3.5cm and I am 43yo. It seems east coast wants to do retro and west coast prefers translab and while I am getting good information from all and like them all it seems like they are all just trying to sell me on their approach. I'm in Massachusetts and dislike the idea of going to CA for this and not sure if translab is really the way to go. However, retro sounds like it is a more difficult surgery and more challenges may occur during recovery. Any thoughts would be greatly appreciated.

[CHD63]

Hi starryjoseph and welcome to this forum!

Making a treatment decision is often the most difficult part of having an AN.  Unfortunately, only you can make the best decision after you have all of your facts/information collected.

You do not say how many doctors you have consulted on both the east and west coasts.  In my years on this forum and elsewhere, I have not noticed that one coast or the other prefers a certain surgical approach.  What I have noticed is some surgeons feel more comfortable in their expertise with certain approaches.  However, the most experienced AN surgeons are looking at several things before recommending a specific approach:  1) the size and shape of the AN 2) exactly where a person's AN is located along the internal auditory canal (already to the brainstem, already near the cochlea, etc.) 3) the amount of hearing loss already known 4) whether there are other extenuating issues (previous surgeries or radiation, etc.)

Tell us more about your situation, such as any hearing loss or balance issues so far.

Thoughts and prayers for wisdom to make the best decision.

Clarice

[redshieldrob]

I've met several folks at our support group and the folks that opted for Retro speak of more headaches and general neck pain.  I opted for House and did not experience any headaches or neck pain....in fact no pain at all.  I'm more than happy to share my story if you would like talk on the phone.

God Bless

[rbc892]

I am also wondering the same thing about surgical approaches. One doctor in LA suggested retrosigmoid for me, but I am so worried about the post op headaches. He said he preferred retro to middle fossa because there is less brain retraction. I am very confused about all the problematic effects of these treatments. I do realize we are all individuals with very different reactions and outcomes, but it does concern me.

[jeninla]

Starryjoseph,
I can't speak about translab but I just posted about my experience with retro sig at House if it helps.  I think I really wanted to preserve my hearing and retro sig was the only option that allowed for that.  You can read about my experience.

http://www.anausa.org/smf/index.php?topic=20259.0

I am too soon after to know how my headaches will pan out in the long run since I'm still taking alot of meds.

Good luck!
Jenny

[CHD63]

To those patients looking at the possibilities of either retrosigmoid or translab approach:

So much depends on 1) exactly where one's AN is located 2)whether it is already touching the brain stem or the cochlea 3) the shape of the AN 4)whether one's hearing, especially speech discrimination, is already compromised 5) etc. etc.  It really cannot be totally the patient's decision to choose one or the other.  You need to work in tandem with the most experienced doctor (in AN removals) you can find and in whom you have put your trust.

Actually the mid fossa approach often has the best chance for hearing preservation, but it is usually not indicated for patients whose AN is large and/or already around the brainstem or if one's hearing is already gone.

In my case, when I was diagnosed I still had 80% of my hearing, with 100% speech discrimination.  The neurosurgeon I went to was extremely experienced in both translab and retrosigmoid approaches, but not mid fossa.  My AN was already close to the brain stem.  To this day, I do not know if I would have been a candidate for mid fossa surgery had I gone elsewhere.  I put my trust in the surgeon when he said he wanted to do retrosigmoid to try to save my hearing.  20% of it was saved, with still 100% speech discrimination so I had great success using a traditional hearing aid to boost the volume of my hearing.  I had a manageable headache for the first couple of weeks, but that was to be expected following any brain surgery.  No headaches attributable to the surgical approach after that time.

Unfortunately my tumor grew back so my second surgical approach for removal of the AN was via translab.  I knew beforehand that my hearing would be totally gone (my speech discrimination was already going down on the pre-surgery audiogram) so Dr. Friedman implanted the abutment for my bone-anchored Oticon Medical Ponto Pro hearing device at the same time.  Nine days after surgery I was eating lunch with friends in downtown Los Angeles and walking around Union Station ..... they were amazed.  In all fairness, my balance adjustments were all done following the first surgery so it was a much easier recovery the second time.

All that being said, remember I am not a doctor but the above is what I have learned through my experiences.  It is first and foremost, most important to choose a highly experienced physician in AN removals whom you trust and then ask all of your questions about exactly what is the difference between approaches, why one is better than another for you, and what their patient outcomes have been with their recommended approach.

Best to all,  Clarice

[v357139]

Doctors will propose the method they are most comfortable with.  The important thing is to pick doctors with alot of experience and a great track record, regardless of the approach.  That said, I also wanted translab and that is one reason I flew to House from NY.  Got a great result.  It was a personal decision, as yours must be.  If you don't want to go that far the docs Roland/Golfinos at  NYU were the only ones in NY who proposed translab for me.  They were not for me, but this forum has many who are proponents of them.

[Tod]

Keep in mind the two approaches are just that - approaches. Each offers a different view of the tumor, so it is not just a matter of preference in technique.

I think retro has gotten a bit of a bad name over the years that may or may not be deserved. Headaches seem to be an equal-opportunity curse, with a bit more frequency towards retro patients. But is that a result of the surgery or the specifics of the tumor that led to the choice of approach?

I don't know, and I don't know that anyone else does either.

My surgery was a bit of a combination of the two. Even among the team there were differences in preference of approach, but they resolved those differences through study of multiple MRIs and review of past cases and made the decision. I didn't know enough to tell them how to do their job.

-Tod

[Ugne3030]

I had surgeryon Monday, my ent was in favour of translab, my neurosurgeon was okay with reto sigsmond. After the mri morning just before surgery they together made a decision without my input, I trusted them implicitedly. They made the choice based on an arterial nerve that may have possibly caused a stroke. The outcome has been great, yes, I have some neck pain, and the odd headaches and so far no hearing in my right ear. i am estatic at the outcome, no facial droop paralysis, etc so far. Just glad that that everything went well.

The morning of surgery I met a retired police officer, as I am retired from policing and without telling him what i was having, he told me how his wife has been dead now for 10 years due to a brain tumour. I lost two friends to brain tumours and have heard of 5  been told in the past month about 5 others who passed away. My morale is that prior to surgery, the feeling i had in my surgeons, and the positive outcomes on this forum I read in the nights before surgery gave me confidence that no matter the outcome, i was happpy to be alive. As dr. Aggarwal stated to me it is like being hit by lightning, this is the least type of lightning to be hit by and as i see my daughters, wife, my family and are able to read i am grateful for going though this. It has given me new perspective, a new love of those around me and especially grateful for my medical teams and this support group. No matter what the method read lots, ask questions and have confidence in your team. That is what got me through this mess. In some ways, i thought life was over. Thank god for this site, the canadaian verison is too lean. Remember be thankful for the little things in life. They make the big things extordinary and really unimportant. It still hurts to cough.....Being able to tell my wife and kids i love them is what counts. The approach depends on what you value. I valued not having facial paralysis and in the end my doctors made a decision about quality of life for me and that is how much  I love those guys. No, i am not on morphine or other pain meds now lol! Dr hebb and dr. AGGARWAL AT UNIVERSITY OF LONDON ARE AMAZING DOCTORS. pPRior to surgery i looked serious at gamma knife and walked away feeling the doctors I consulted  did not have my best interests at heart nor where they competentent. Ask questions, read lots on this forum, there are lots of good resources. Go,with your gut. After surgery post op check up, follow ups it is a relationship you want to have being positive. I am rambling but so thankful for my outcome. Thanks everyone. Thank someone today for their help.

[Mimispree]

I love it!  Another success story! 

Congratulations to you and your family!

Be well,
Michelle

[ANGuy]

For such a small group of people, relatively speaking, there seems to be a lot of us with public safety experience.  Just a casual observation on my part.

[keithmac]

It's good to hear such positivity.      

I hope I don't find myself in the position of facing treatment but if I do I hope I can be equally positive.  I agree about how valuable this ANA website is.  My care  takes place in the UK but the UK's acoustic neuroma association's website was upgraded (allegedly) last year and all our members' invaluable experiences were lost. 

Although care and/or treatment in North America is very different from that in the UK, I now use this website as my primary source of actual experiences.