Author Topic: 3 Doctors say Retrosig, House says Translab. Confused :(  (Read 7403 times)

Phillies

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After spending enough time figuring out if radiation or surgery was best I concluded that surgery was nest for me after getting a number of opinions. Georgetown in DC and Selesnick and Sisti in NY all said surgery via the retrosig approach. My hearing is good and they all thought it was worth trying to save even though the odds are poor. I thought it was all figured out until I got a call from the House Clinic. They reviewed my MRI and thought the translab was the best way for me since hearing preservation is so low and there is less risk of facial issues and chronic headaches with translab. The NY doctors didn't think there was any increased risk doing retrosig. And Dr. Sisiti said he couldn't do a translab in good conscience knowing I have good hearing. Now I'm confused :( 

opp2

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Re: 3 Doctors say Retrosig, House says Translab. Confused :(
« Reply #1 on: May 23, 2011, 08:39:09 pm »
Sorry Kiddo, this decision is almost as hard as the radiation vs surgery decision.

Retro sigmoid surgery is entry behind or below the ear, and aims to preserve the hearing apparatus and the hearing nerve while removing the tumour. I had surgery in Canada with a surgeon who does retro sigmoid. He spent considerable time explaining to me that he uses this technique combined with nerve monitoring to preserve facial nerve function and NOT manipulate the brain at all. He lets gravity move the brain once the CSF fluid is drained from the skull. Most retrosigmoid techniques are similar, though I can't speak for or to any of the surgeons. My surgeon told me quite frankly, his patients don't suffer headaches after surgery, and sure enough, I don't.

Translabrynthine also preserves facial nerve and has less manipulation of the brain by removing the apparatus of the inner ear. I made a decision based on the research I had done, and because I wanted to preserve my hearing. BUT I didn't have nearly as many choices of surgeons as you have in the US.

I also consulted with House and was booked for surgery with Dr. Friedman when I discovered my surgeon (thank you Adrienne). Had it not been for finding my surgeon, I would have had surgery with Dr. Friedman.

The choice is tough and one only you can make based on the information you gather, and for what you find in your heart is best for you.

Good luck.

Nikki
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

leapyrtwins

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Re: 3 Doctors say Retrosig, House says Translab. Confused :(
« Reply #2 on: May 23, 2011, 09:45:56 pm »
Phillies -

it's a personal choice.  I had the choice of retrosigmoid or translab (or radiation).  I chose retrosigmoid because even though I knew the odds of saving my hearing weren't great, I at least wanted to say we (my surgeons and I) tried.  I had decent word recognition and didn't want to just throw that away automatically through the translab approach because I felt I'd always wonder "what if". 

Long story, short.  My hearing nerve was wrapped around my AN - something that can't be viewed in an MRI - and it had to be "sacrificed".  In other words, I ended up SSD. 

Am I sorry I gave retrosig a shot?  No, not ever.   I took a gamble and I lost, but I've always been glad I took that gamble.

As for headaches and/or facial paralysis being side-effects of retrosigmoid, it all depends.  I had very slight facial paralysis for 1-2 days post op; a single dose of steroids cleared it up; it never returned.  I've never had headaches associated with my AN or my AN surgery, and I'm almost 4 years post op.

Others have had other experiences; this is just mine.  We're all different.  You need to weigh the pros and cons of the opinions of all the doctors you consult with, and then decide what you are most comfortable with; that is, what are you willing to gamble.

No one can guarantee you will or won't have a specific side-effect or side-effects.  Some things you just don't have control over and while docs can give you their best guess as to what your end result will be, it may or may not be relevant in the end.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

ChristineH

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Re: 3 Doctors say Retrosig, House says Translab. Confused :(
« Reply #3 on: May 24, 2011, 08:43:14 pm »
Phillies...I know what and how you are feeling. I too had surgeons recommending Retro Sig but House (Dr. Brackmann) suggested Translab.. Yes..it is VERY confusing! I had perfect hearing in my AN ear and I too wanted to have hope that I may have some hearing post-op.  Even though I knew prior to surgery that I may not have hearing post-op I was still optimistic. But it wasn't to be. For a lot of people in the forum being SSD is not a big issue for them but for me it is huge.  It was a big letdown. As I'm sure you have read each persons outcome is different. Sometimes you do have to stay away from the forum and clear your thoughts. There is SO much information and experiences here that I became overwhelmed. Good luck in your decision making process as we all know it is a difficult time.
2.3cm x 1.9cm x 1.6cm, April 7, 2011 Retro Sig at Barrows in Phoenix, AZ. by Dr. Syms and Dr. Porter slight growth to 2.6cm -3.0cm day prior to surgery. SSD and balance isssues. 6 month MRI shows "enhanced area" : ( Will repeat again in 4 months.

jaylogs

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Re: 3 Doctors say Retrosig, House says Translab. Confused :(
« Reply #4 on: May 24, 2011, 08:50:47 pm »
Yes, what everyone says is, as you no doubt have figured out by now, that deciding on WHAT kind of surgery is almost as bad as deciding on a procedure.  I had a lot of options and it was Dr. Brackmann at House who suggested (and he was the ONLY one) to go middle fossa.  He thought that my hearing could be preserved. So I went in prepared for the worst, and yet I did come out with some hearing...enough that I can tell which direction something is in, but not good enough to understand much.   So to me that's still a bonus, and I'm getting a BAHA to help with the hearing so it's a win-win.  So whatever you decide on, and if it feels right, then THAT is the right decision!   I hope you find something that will be good for you, and then hopefully you find peace with it! Good luck and let us know what happens! 
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

mk

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Re: 3 Doctors say Retrosig, House says Translab. Confused :(
« Reply #5 on: May 25, 2011, 08:30:13 am »
My understanding is that surgeons will recommend whatever approach they feel more comfortable with, given the specific situation. I had the same surgeon as Nikki (opp2). I didn't have useful hearing worth saving to begin with - but this surgeon specializes in retrosigmoid. In his view translab exposes too much of the facial nerve at once, thus putting it in more risk when the tumor is large. I didn't dispute the choice of approach, since I had decided that this was the surgeon that I wanted to do my surgery, therefore I trusted whatever recommendation he had. My point being that another way to look at this decision is to choose the team you are most comfortable with and then go with the technique that they are more confident with.
That being said, I don't underestimate that going from full hearing to not hearing (which is guaranteed with translab) is probably much more difficult and needs a period of adjustment, compared to my situation where I was used to significantly reduced hearing. I would ask all the surgeons what are THEIR (not the textbook) statistics for hearing preservation/facial nerve weakness vs. paralysis etc,  when using the specific approach that they recommend.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

CHD63

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Re: 3 Doctors say Retrosig, House says Translab. Confused :(
« Reply #6 on: May 25, 2011, 01:36:12 pm »
Have to weigh in here .....

Yes, Marianna is correct, up to a point, that doctors will often recommend the approach with which they are most comfortable.  However, the specific location of one's AN is a huge factor in the recommended approach.  If the tumor is still completely within the IAC and closer to the cochlea, with or without pre-op hearing loss, the ability to save the hearing during surgery of any type is greatly reduced.  If, on the other hand, the tumor has extended towards the brain stem and farther away from the cochlea, mid-fossa or retrosigmoid approaches have a greater chance of hearing preservation.  The size of the tumor is, of course, also involved in all of the recommendations.

I know for a fact that the team of Friedman/Schwartz at HEI do all three approaches on a regular basis.  So, when they recommended translab for me I was confident in their recommendation ..... but I did ask why they recommended it.

Everyone should question any doctor's recommendation to be satisfied that the reasons given make sense.  As Jan said, sometimes it boils down to your own personal preference.  No doctor can guarantee hearing preservation pre-surgery, just give it their best shot.  MRIs are good, but only so much can be seen on them.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

JAndrews

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Re: 3 Doctors say Retrosig, House says Translab. Confused :(
« Reply #7 on: May 25, 2011, 05:55:17 pm »
I had multiple consults. Minn. Mayo Clinic wanted to do retrosigmoid. The docs told me there was a significant chance I would suffer from headaches the rest of my life. They told me there was a 50/50 chance of saving my hearing. I spoke with House (Brackmann) who said by viewing my MRI there was no chance my hearing could be saved by the way the tumor was wrapped around. I also had no functional hearing that had already been determined by the 3 hearing tests I had already had prior to surgery. So I  definitely understand how confusing this is for you. SSD does take getting used to, but otherwise I am fine. I can't tell you what decision to make but all of the literature that I have read states that retrosigmoid does have a greater possibility of life long side effects. Good luck to you:)
2.5cm x2.0cm cerebellapontine angle meningioma. 100% removal 2/2009. House Ear Institute. Dr Brackmann and Dr. Schwartz. SSD right ear. No balance problems except when really tired, no headaches. Transear hearing aide made no difference, tried it for 4 months.

Phillies

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Re: 3 Doctors say Retrosig, House says Translab. Confused :(
« Reply #8 on: May 25, 2011, 07:23:43 pm »
The House Clinic mentioned chronic headaches as a reason for the Translab but the other 3 doctors I saw who wanted the retrosig said nothing about the headaches...   ???

leapyrtwins

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Re: 3 Doctors say Retrosig, House says Translab. Confused :(
« Reply #9 on: May 25, 2011, 10:15:57 pm »
For a lot of people in the forum being SSD is not a big issue for them but for me it is huge.  It was a big letdown.

Christine -

becoming SSD was a big issue for me; as you say, a big letdown.  It actually caused me to be depressed for 9 months - until I had a BAHA implant.

If you continue to find yourself miserable being SSD, try a BAHA demo or look into a TransEar.

Although you'll never regain your hearing, there is help out there.

Best,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

AAANJ

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Re: Retrosigmoid vs. Translab & Dr. Sisti
« Reply #10 on: June 02, 2011, 04:56:32 pm »
I thought I would chime in on this subject.  My wife was found to have a 3.1 cm AN two months ago.  I consulted with both House Ear Clinic and with Dr. Sisti at Columbia.
I spoke with Dr. Friedman who was very helpful and went out of his way to review our options.  Dr. Friedman recommended without question a translab approach due to the
size of the mass and to obtain early identification of the facial nerve along with reduce possible issues such as headaches.  We spoke on the phone for more than 20 minutes and
reviewed my wife's case.  From our conversation, there is no doubt that at HEI they do the most AN surgeries spread over the different ENT surgeons and for them it is definitely
"routine" in their treatment algorithm.  Our concern was travelling from East to West coast and leaving the kids behind for the 2 weeks or so.   
We met with Dr. Sisti and he was excellent as well.  Very nice, patient and definitely an authority on acoustic neuromas.  My wife still had usable hearing in her affected ear and
Dr. Sisti recommended a retrosigmoid approach with the "miracle" possibility of maybe sparing her hearing.   Dr. Sisti as well sees and operates on numerous AN patients each year
and also offers gamma knife thearpy as well which he uses for many of his patients.   
We went with Dr. Sisti as my wife and I were very comfortable with his approach and his treatment philosophy which was to remove as much as possible of the neuroma but
stopping if there were any signs of other nerve damage or involvement intra-op.  In addition, Dr. Sisti has an excellent reputation as a neurosurgeon all around.
My wife had surgery yesterday and all went well.  Dr. Sisti removed all but a sliver of mass attached to the facial nerve.  My wife woke up with no facial paralysis or headache. 
Dr. Sisti said that he couldn't save the choclear nerve definitively for hearing due to neuroma involvement, but my wife thinks she still can hear (although less than pre-op) in her affected ear.
Again, you can't go wrong with any well trained and experienced surgeon who regularly treats patients with AN.  Obviously, with more numbers comes a more routine and familiarity with treatment for the surgeons.  The HEI may prefer translab more than retrosigmoid because that is their approach that they are most comfortable with that provides the best outcome with the lowest risk for their surgeons.  Dr. Sisti does all approaches as well, but I suspect that as a neurosugeon, he has the most experience with a retrosigmoid approach for this size of mass and location which was completely fine with me.  As a physician myself, I felt that both Dr. Friedman and Dr. Sisti were excellent surgeons and both had strong interests and vast experience in treating patients with acoustic neuromas. 
Hope this helps and best of luck.

Phillies

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Re: 3 Doctors say Retrosig, House says Translab. Confused :(
« Reply #11 on: June 02, 2011, 06:06:51 pm »
Thanks for your insight. I also have surgery via the retrosig approach scheduled with Dr. Sisti in mid July. I'll probably sent you a pm with some more questions when I get the chance. Glad everything went well. Did the Dr say how long it will take for her to recover? Dr. Sisiti was confident he can having me driving in 2 weeks and back to work in 3-4.

AAANJ

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Re: 3 Doctors say Retrosig, House says Translab. Confused :(
« Reply #12 on: June 02, 2011, 09:45:53 pm »
Dr Sisti mentioned about the same timeframe - 4 weeks before feeling completely normal again...
Or for my wife, 3 weeks and 6 days!!

Jim Scott

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Re: 3 Doctors say Retrosig, House says Translab. Confused :(
« Reply #13 on: June 03, 2011, 02:10:38 pm »
Phillies ~

After reading the response from 'AAANJ' I felt that I should offer my experience, for whatever that might be worth. 

In May, 2006, I was diagnosed with a 4.5 cm AN.  I had one tentative consult with a local neurosurgeon but he was clearly inexperienced with ANs and seemed intimidated by the size of mine, so I thanked him for his time and went elsewhere.  Without boring you with a lot of detail, the second consult I had was with a 60ish, respected neurosurgeon that had decades of experience performing AN surgeries.   He offered me a plan to use the retrosigmoid approach to 'debulk' my large AN ("to spare the facial nerves") and sever it's blood supply.  He planned to team with a radiation oncologist to 'map' the remaining tumor and employ FSR to destroy it's DNA.  We went ahead, just a week later.  Long story short: the surgery was a complete success and I suffered no headaches or facial paralysis.  Not even facial weakness.  I resumed driving - with my doctor's approval - in just under 2 weeks from the day of my surgery.  90 days later, I underwent 26 FSR sessions.  They were tedious but otherwise uneventful.  Again, no headaches or any other issues.   I was SSD when diagnosed so I had no illusions about regaining my hearing in the affected ear.  It's now 5 years later and I've had no recurring symptoms.  My last MRI (2008) showed tumor necrosis and the beginnings of shrinkage.  My neurosurgeon is delighted and said I'm in the top 5% of his AN patients in terms of complete, problem-free recovery.  Obviously, I'm just as satisfied as my doctor.  I do everything I did prior to my diagnosis. I consider myself blessed and I can only re-emphasize the often mentioned point that having a doctor with vast experience in AN procedures is critical to stacking the odds in your favor for a good outcome.  I think you have such a man in Doctor Sisti and I'm confident you'll enjoy an outcome similar to mine.

Jim 
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Phillies

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Re: Retrosigmoid vs. Translab & Dr. Sisti
« Reply #14 on: June 04, 2011, 08:36:15 pm »
I thought I would chime in on this subject.  My wife was found to have a 3.1 cm AN two months ago.  I consulted with both House Ear Clinic and with Dr. Sisti at Columbia.
I spoke with Dr. Friedman who was very helpful and went out of his way to review our options.  Dr. Friedman recommended without question a translab approach due to the
size of the mass and to obtain early identification of the facial nerve along with reduce possible issues such as headaches.  We spoke on the phone for more than 20 minutes and
reviewed my wife's case.  From our conversation, there is no doubt that at HEI they do the most AN surgeries spread over the different ENT surgeons and for them it is definitely
"routine" in their treatment algorithm.  Our concern was travelling from East to West coast and leaving the kids behind for the 2 weeks or so.   
We met with Dr. Sisti and he was excellent as well.  Very nice, patient and definitely an authority on acoustic neuromas.  My wife still had usable hearing in her affected ear and
Dr. Sisti recommended a retrosigmoid approach with the "miracle" possibility of maybe sparing her hearing.   Dr. Sisti as well sees and operates on numerous AN patients each year
and also offers gamma knife thearpy as well which he uses for many of his patients.   
We went with Dr. Sisti as my wife and I were very comfortable with his approach and his treatment philosophy which was to remove as much as possible of the neuroma but
stopping if there were any signs of other nerve damage or involvement intra-op.  In addition, Dr. Sisti has an excellent reputation as a neurosurgeon all around.
My wife had surgery yesterday and all went well.  Dr. Sisti removed all but a sliver of mass attached to the facial nerve.  My wife woke up with no facial paralysis or headache. 
Dr. Sisti said that he couldn't save the choclear nerve definitively for hearing due to neuroma involvement, but my wife thinks she still can hear (although less than pre-op) in her affected ear.
Again, you can't go wrong with any well trained and experienced surgeon who regularly treats patients with AN.  Obviously, with more numbers comes a more routine and familiarity with treatment for the surgeons.  The HEI may prefer translab more than retrosigmoid because that is their approach that they are most comfortable with that provides the best outcome with the lowest risk for their surgeons.  Dr. Sisti does all approaches as well, but I suspect that as a neurosugeon, he has the most experience with a retrosigmoid approach for this size of mass and location which was completely fine with me.  As a physician myself, I felt that both Dr. Friedman and Dr. Sisti were excellent surgeons and both had strong interests and vast experience in treating patients with acoustic neuromas. 
Hope this helps and best of luck.



So how is your wife doing? Any updates? Hopefully she is doing good..  :)

 


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