Does Retrosigmoid get all of the tumor out?

[nycnewbie]

Hey Everyone,
OK, I am freaking out. I have been over researching, over analyzing , met with docs, and now have too many opinions and 2 different approaches. I need some serious advice here.
So, Selesnick/Stieg in nyc say Retrosigmoid for my 1.2 cm tumor mostly in IAC. House says middle fossa because retrosigmoid would have harder time getting all of tumor out. Now why would Selesnick who is a top notch doctor tell me Retro if he didn't believe he could get all of the tumor, even if it's deep in the IAC, out??!!
I am feeling confused an overwhelmed.
Any advice would be greatly appreciated.
Best,
Serena

[Pooter]

Serena,

I had a retrosigmoid surgery last year.  I'll let you judge for yourself if they got it all.

Before: 

After: 

It's definitely possible to get all of the tumor with that approach.  The pictures (and my surgeon) don't lie. 

I would relax about it.

Regards,
Brian

[CHD63]

Hi Serena .....

..... and welcome to the world of those of us with ANs.

I do not know anything about any of the doctors you mentioned, but I'm sure others will chime in here who do know them.  All I can say is I had a 2+cm AN that was both IAC and EAC and it was removed completely via retrosigmoid approach.  My neurosurgeon chose that approach in order to preserve my hearing, which he did somewhat (I had 80% before surgery, now have a very useful 20%, boosted with a digital hearing aid).  I have balance issues because of having had retrosigmoid surgeries at the CPA on both sides but otherwise doing well .... no facial involvement, no dizziness, no headaches.  Many AN patients have balance problems, at least short-term, regardless of treatment, while the brain adjusts and compensates for the loss of the vestibular nerve.

Let us know how you are doing and what you decide.

Clarice

[nycnewbie]

Thanks, Brian! But was your tumor deep in the IAC?!

[Pooter]

Thanks, Brian! But was your tumor deep in the IAC?!

Serena,

To be honest, I don't know if it was partally in the IAC or not.  All I knew was that I had a "big" one that needed to come out pretty quickly because of compression to the brain stem (as you can see on the pictures).

I would expect that getting all of the tumor (whether in or out of the IAC) depends on the skill of the surgeon involved in the case.  Which may also be why one said that he could get it all and the other said that Middle Fossa has a better chance.  My bet is that the House doctor said what he did because he's more familiar with (and better at) Middle Fossa.  I also bet that the other doctor would say that Middle Fossa is more problematic for one reason or another.  They're both right based on their own skill level with each procedure.

Make sense?

Regards,
Brian

[nycnewbie]

Ha, you must be psychic...or just know it's all been said before:) I would have to agree that Middle Fossa is pushed big time at House. But has anyone else on this board had the experience of a tumor deep in IAC and getting all of tumor out with Retro? Is this something I should be super concerned about?

[Pooter]

Ha, you must be psychic...or just know it's all been said before:) I would have to agree that Middle Fossa is pushed big time at House. But has anyone else on this board had the experience of a tumor deep in IAC and getting all of tumor out with Retro? Is this something I should be super concerned about?

Haha.. I'm not psychic, but I've been around this block a few times.    I'm sure others will chime in if they have something to add, but I can honestly tell you that the predominant types that typically have regrowths from some being left behind are those that knew some was left behind on the facial nerve because it was just too durn risky to the nerve to take the tumor off of that nerve.  So, rather than risk causing permanent facial nerve damage, the doctor left some behind.  I've heard of 1 case where the doctor thought all was gone but 1 or 2 cells of the tumor was left behind and a regrowth occured.

Most who have some left behind, they're doctor suggests getting it radiated to stop it from growing.

Which begs the question, at 1.2cm you're well within the size range to consider radiation (CK, GK, etc), so why are you talking to surgeons about surgical procedures??  Are you talking to someone about radiation options?

Regards,
Brian

[Larry]

irrespective of where the tumor is, unfortunately, not surgeon will "guarantee" that the tumor will never return.

From analysing posts, the translab procedure, gives surgeons the best look at most tumors, retrisig and middle fossa are supposedly less invavsive. All surgical procedures have their after effects.

i had MF and it grew back and have had chronic headaches since. But thats just me. I recently had radiation treatment on the re-growth


Laz

[nycnewbie]

[/quote]
Most who have some left behind, they're doctor suggests getting it radiated to stop it from growing.

Which begs the question, at 1.2cm you're well within the size range to consider radiation (CK, GK, etc), so why are you talking to surgeons about surgical procedures??  Are you talking to someone about radiation options?

Regards,
Brian
[/quote]
hey brian, they say i am too young to have radiation(29) and honestly i do not want to be radiated.

[cin605]

I had 2cm removed 6/26/08 theysaid they got it all...i will find out 6/15.Fingers crossed..eyes too sometimes..

[Kate B]

I had 2cm removed 6/26/08 theysaid they got it all...i will find out 6/15.Fingers crossed..eyes too sometimes..

Also keeping fingers crossed. 

[sgerrard]

OK, I am freaking out.

No need for that. Choosing between two good alternatives may be difficult, but either way is okay. Oh, whether to get a BMW or a Mercedes...

"More difficult" does not mean not possible. Selsnick believes that he can get it all with retrosigmoid, however the difficulty might compare with middle fossa. I know a welder who can lay down a perfect bead deep inside a steel pipe, using a hand mirror. It is "more difficult," but he does beautiful work.

House, being very experienced with middle fossa, will tend to lean that way on a tumor like this. It gives a more open view of the IAC, and offers a chance at preserving hearing.

Just to cover all the bases, you are not too young to have radiation either. That was the wisdom back in 1991, but things have changed for the better since then.

Steve

[elderbirds]

I was in the same situation you were 18 months ago.  Similar size tumor partially in the IAC partially outside.  House Docs said definately MF and   Hopkins docs said definately retrosigmoid! I was freaking out!!  I learned that it really depends on the surgeon and which procedure they are more familiar with doing.  I also spoke with a retired neurosugeon from Chicago who took my MRI to a conference with him and the consensus was either way would work and get the whole tumor out and have a chance of preserving hearing.  you said it right, it depends on where the docs trained.  Those at House do more MF when possible and here on the East coast the docs I spoke with have more experience with retrosigmoid.  I was told to go with the surgeon I felt most confident with and the procedure they have done the most.  I chose docs at Johns Hopkins (they came highly recommened from my ENT) and they performed the retrosigmoid. 2 MRI's have confirmed they got all of the tumor out!  Feel free to pm me if you have more questions. 
Hope

[LOIS]

  Hey Serena,

  My dr. did retrosig and got the whole tumor out.  He said mine didn't start in the usual place so it was already pressing against the brain stem and in the IAC also.  It was the same size as yours and he felt that was the best approach to get it all out and save my hearing.

Lois

[leapyrtwins]

Doctors are different - thus, different opinions on treatment options (as well as surgical approaches, if they do surgery).

Most doctors will recommend what they do best, which is why it's good to talk to a doctor who does radiation as well as surgery, or at least talk to one who does surgery and one who does radiation.  You definitely want a well-rounded perspective of everything.

I don't know how deep into the IAC my AN was but it was on the 7th and 8th cranial nerves, if that helps.   I had the retrosigmoid approach and my AN was removed "entirely".  Entirely being a somewhat subjective word.  Although docs do their best and remove what they can see of the tumor, even one cell left behind is enough for regrowth to begin.  That said, the chances of regrowth after surgery where the tumor is entirely removed are only 1 - 2 %.

As Laz said, no doctor can guarantee you anything; like you and me, they are only human.  IMO, if you find a doctor who guarantees you anything 100%, you should look elsewhere because he/she isn't being completely honest with you.

I'm not sure if mid-fossa vs retrosigmoid would give you a better chance of tumor removal or not, that's probably a matter of opinion based on the doctor you're talking to at the time, but mid-fossa is the best approach if you have good hearing and want to save it.

I'm not a doctor, but I don't think you're too young to radiate.  So if you just don't want that treatment option, I'd base your decision more on your personal preference than on your age.

Best,

Jan