55yr old female - 2.4cm AN - freaking out

[nteeman]

Annac,

I would also recommend you seeing Dr. Bederson and Dr. Smouha also at Mt.Sinai. I had my surgery there and was home in 3 days with very few after-surgery issues. Dr. Bederson is the head of the Neurosurgery department there and Dr.Smouha is an ENT. Both were excellent and the hospital was fantastic.

Neal

[annac]

Do you know how many procedures they have performed? I also have a special case since I have a failed radiated AN.

Thanks for you info

Anna

[Nani]

It is scary.  You'll pull through.  We're here.  I don't have any magic words to say to make it better.  I wish I did.  {{hugs}}

[mellowrama]

Correction to my previous post, I was "released" to travel home in 1 week after stiches were removed and followup appointment, released from the hosptial early 3 days..wed was surgery, left sunday afternoon. 

I wanted to make this clear so if you're traveling from out of state with companions it was understood.  I could've gone home then, but my airfare was already purchased and hotels, etc arranged.    I was prepared to stay longer just in case...

Ask the docs how many failed radiations they've worked with, when I had these discussions with doctors it also gave me personal insight to as how the felt about radiation, or even re-radiation that helped me with my decision.

I was concerned primarily with the facial nerve, as it was my main symptoms and I had 100% of my hearing.  Dr. Schwarz said from a learning lesson point of view, that they used to focus on removing as much of the tumor as possible, even to the point of cutting the facical nerve, but not these days...now he felt is was better to leave a small piece and save the nerve, which is what they did. and I'm glad.

melinda

[sgerrard]

Dr. Schwarz said from a learning lesson point of view, that they used to focus on removing as much of the tumor as possible, even to the point of cutting the facial nerve, but not these days...now he felt is was better to leave a small piece and save the nerve, which is what they did. and I'm glad.

This point came up at the Symposium in Chicago in August. I am glad to see it becoming a trend, and hope it continues. The little scraps left behind usually die from lack of blood supply, and if they ever do start anything, they are easily zapped.

Steve

[Tumbleweed]

I agree, Steve. The whole point of surgical resection (or any other type of treatment, for that matter) is to keep the tumor from destroying nerve function. It makes no sense to cut or remove a cranial nerve just to get the last bit of tumor cut out; that's counter-productive to one of the primary goals (the other being to stop the growth).

I also feel the same as Donnalynn. I had CK, but if I had chosen surgical resection I, too, would've chosen HEI (although I'd now consider SBI). If I'm not mistaken, HEI have done the most AN surgeries in the U.S. Dr. Derald Brackmann "wrote the book" on many of the techniques used in brain surgery today. That experience and insight is invaluable for what many doctors call the most technically demanding surgery one can do on the human body.

Best wishes to all,
TW

[annac]

I just had a consultation with Dr. Post at Mt. Sinai and he too agreed that his ultimate aim is to preserve the facial nerve even if he has to leave a bit of the tumor. He recommended the retrosigmoid approach for my case and I must tell you that a weight has been lifted from my shoulders. I expressed my reservations with the retro approach because I read that the major side effects are headaches. He assured me that those side effects are a thing of the past. Nothing is ever certain when it comes to side effects but he said that headaches were caused due to bone dust left inside and caused irritation leading to headaches. He was so confident and comforting.

Dr. Brackmann advised the translab approach and as much as he was so comforting and assuring I really didn't want to completely give up my hearing (even though its not that great).

My husband and I are realizing now that the important person to talk to is really the neurosurgeon on the team. He is the one in charge of all the vascular surgery and the one "peeling" away the tumor from the facial nerve.

Jury is still out on where we'll go for surgery. Still waiting for a consultation with Dr. Friedman/Dr. Schwartz and Dr. Roland/Dr. Golfinos.

Thanks again for everyone's support on this board. If I can pass along some advice at this early stage in my journey. Knowledge is the key. Do the research. Reach out to family and friends. It's unbelievable how much love and support you receive and it does help!

I'm not big on drugs (I rarely take even an advil) but when you get so anxiety ridden go for help! I now take on a "as needed" basis klonopin (5mg & I cut it in half) for anxiety and ambien (5mg) for when I can't sleep.

I also have posted notes all over the house with saying's such as "positive thoughts", "best results". It may be silly but they work for  me.

I'm feeling much better !

[mellowrama]

Hi Anna, it really sounds as if you are doing the right things with all your research!
I think you're right about the neurosurgeon, I was told after surgery by my intern doc how Dr. Schwartz tediously removed the sticky from radiation tumor from my facial nerve, worse because of the failed radiation.  He left a 1% piece of the tumor on the nerve rather than cutting it, I was way ok with this.

There were so many docs involved throughout the surgery and recovery!  After surgery, the docs had fellows to make the rounds, and some of them did also.  But it was clear who was running the show.  I guess this is really common, for docs and their "fellows".  I had one that was SO great, young Dr. Goddard.  Very patient, often and listened a lot....to the point he was telling me who some of the other docs were that came by and I didn't recognise or was kinda out of it on morphine. 

I'm not big on drugs at all, they force many down you the first few days after surgery. And then I got off pain pills very soon, I think day 4.  Only rarely do I take Tylenol or Advil type products.  I did start taking ambien after taking steroids for 3 days after surgery, the steroids were the hardest for me.
best wishes, Melinda

[sgerrard]

Hi Anna,

Not to muddy the waters, but a patient from our local ANA group just had a retrosigmoid with Dr. Brackmann at House. He is doing great, big smile and no headaches. Not sure where he is on hearing. Maybe you can twist Dr. Brackmann's arm and get a retro from him.

You sure sound like you are feeling better about the whole thing. Best wishes as you close in on the final decision.

Steve

[annac]

I'm planning on having the surgery in January (after the holidays) but I was thinking of going out to California in October and making an appointment with Dr. Brackmann. I really want to avoid the translab approach (cutting balance nerve/SSD) but both Brackmann and Friedman have recommended it. Ugh....one more consultation and it's decision time

[Adrienne]

Hi Annac,

I wish you luck with your decision making process.  Just wanted to add my .02 cents in here.  I had the same concerns as you regarding the Retro surgery, and my (very competent) neurosurgeon answered EXACTLY the same as yours.  In the wrong hands, headaches can occur, and usually b/c of bone dust.  They've made advances in that, and he said his patients don't have headaches.  Like you said, it can still happen.  Feels better knowing it isn't the 'norm' though!

Good luck.

Adrienne

[annac]

Hi Adrienne,

Thanks for your comment and it's making my decision lean more toward the retro sig approach. Dr. Post did say in the past 10 years major advances have been made with the retrosig approach and headaches are not seen as a common side effect. Dr. Post exudes confidence and when I mentioned I was going to see Dr. Roland this week he softly said "yes of course but he is an ENT". The way he said he let me know.... but I am the neurosurgeon.
 Dr. Friedman was very adamant about not doing the retrosig and actually called it "more dangerous" because it was intracranial. Both Doctors did say that more recently neurosurgeons are of the opinion to leave a thin layer or "rind" of the tumor attached to the facial nerve in order to preserve it. Eventually the remainder of the tumor could die off or it could grow again. Either way I'll take my chances and save my facial nerve.

That being said if I go for the translab approach, tumor is removed, my balance nerve is cut and my hearing is lost and they have to harvest some fat from my abdomen to fill in some kind of void.
If I go with the Retrosig approach my poor hearing is still saved and I have to have extreme confidence in my neurosurgeon that will leave with a better quality of life which what I'm trying to preserve.

What my husband and I seem to have come upon is the great divide and the Titans are locking horns as to which approach to use. I may be wrong but it seems the majority of posts here that have gone to HEI have had the translab approach or the Middle Fossa.

[CHD63]

Anna .....

Most of us on this Forum have felt the decision-making process of this whole journey is one of the worst parts of the whole thing.  You are doing the right thing to explore your options.  At some point in time you will have that "gut feeling" that this is the right decision.  No one can or should try to push you towards any one type of treatment, even medical professionals.

That being said, there are many of us on this Forum who have had retrosigmoid approach surgeries with good results and no regrets ..... I being one.  I do not think you should dismiss this as an option because many of the current posters have gone to House for translab or middle fossa.  Actually several have had retrosigmoid at House recently, as well.

You need to do what is right for you, based on your history of radiation, the size of your tumor, the location of your tumor, and your current symptoms.  Do not be in a big rush ...... maybe stepping back and doing other things for a while will clarify it for you.  Then listen to your inner self and it will become clear.

Thoughts and prayers.

Clarice

[lori67]

The whole point of surgical resection (or any other type of treatment, for that matter) is to keep the tumor from destroying nerve function.

TW,

I thought the whole point was to keep you alive for the long term?   

Anna, I have no words of wisdom to offer - you've already gotten a bunch - but just wanted to welcome you (a little late... ).  Hopefully you'll be like many of us were and get that gut feeling to help you decide what treatment to go with.  Good luck!

Lori

[mellowrama]

Hi Anna,

I know exactly what your feeling, just went thru it and would have gone retro but too scared for the facial nerve.   I just wanted to express that and clarify my understanding  (other please chime in if incorrect!) of the different approaches.

The translab approach gives the surgeon the best view/angles for preserving the facial nerve.

I think the balance nerve has the same risk either approach - I was told my tumor was on it so it was completely cut but didn't effect me too much as I had already started compensating for it on the other side. 

Yes, its true they cut some fat from my abdomen to fill in the skull void, and use titanium sheet over it.  I suspect they have to do something similar for the void in Retro.

The Retrosig approach is the only option for saving hearing (mid fossa for small tumors) however, often times the chances are slim.

The primary goal is to remove the tumor as much as possible, and in your case, as in mine, you probably don't want to be radiated again.
Melinda