55yr old female - 2.4cm AN - freaking out

[Jim Scott]

Anna ~

To elaborate on Melindas's comments: I underwent a partial tumor resection using the retrosigmoid approach.  This surgical approach has an (approximately) 60% chance of preserving hearing.  My hearing nerve was fatally compromised prior to the discovery of my AN so the surgeon used 'retro' simply as the best way to reach the tumor as hearing retention was not an issue.  The Retrosigmoid Approach involves a slight retraction of the cerebellum, which is a bit risky - but necessary.  My neurosurgeon did move my cerebellum (in his words: "just a little") but I suffered no headaches or other ramifications from the procedure.  Pre-op, when I brought up the question of developing post-op headaches, my neurosurgeon (with 30+ years experience surgically removing ANs) literally scoffed at the idea.  He flatly stated - in his words - "my AN surgical patients don't get headaches".  He was right - I didn't.  After this 'de-bulking' procedure, which was highly successful (no complications) I underwent 26-sessions of FSR treatments to irradiate and destroy the remaining tumor's DNA.  That was also successful and somewhat uneventful.  I do have a titanium plate in my skull - but no 'belly fat'.  Frankly, I didn't have any belly fat to contribute (I had lost over 30 pounds - due to the AN-induced loss of taste - prior to the surgery and was borderline underweight) and apparently, my neurosurgeon didn't consider it necessary because he didn't take fat from anywhere else and never mentioned it during my follow-up visits.  I'm fine now.  My balance is quite serviceable and I've fully adjusted to being SSD.  I believe the retrosigmoid surgical approach is commonly used for good reason but every AN patient is different and every doctor views things slightly differently, so what was great for me may not be a good procedure for another AN patient.   I'm sure the doctors that perform your AN removal surgery will choose the very best surgical approach for your situation.     

Jim

[Adrienne]

Melinda,

My surgeon told me that he prefers to do the Retro b/c of the view he gets, and it isn't more likely to result in facial paralysis (no more risk than the others).  Also, there is no fat harvested, I was told that a 1 1/4-1 1/2" square piece of skull was completely removed, but then put back on with bone cement after the procedure to protect the opening.

Jim,

My surgeon told me that there was only a 25% chance of retaining hearing with the retrosigmoid.  I'm guessing size and placement have a lot to do with it.  In any case, he set me up for the fact that I would probably come out of it without hearing-that it wasn't their primary goal.  Primary goal was to protect the facial nerve, and second-to remove all of the tumor.

I went into my neurosurgeon's office prepared to ask for the Translab procedure because of everything I had read on the net (and some here).  He talked me out of it based on some misconceptions I had.  I guess the surgery has come a long way (that, and it was his comfort to do retrosigmoid and I truly believe whenever possible that you should go with the one they are most confident with and do the most often).  I'm so glad he did the retro on me, given the way it turned out.  I'm very thankful for the hearing I retained (even though I would have given it up in a heartbeat if it meant lower probability of facial paralysis).

Adrienne ~

Because hearing preservation was not an issue for me at that point, my neurosurgeon was focused on avoiding facial paralysis .  Thankfully, he was completely successful.   Jim

Annac-It's nice that you have others that have gone before you with the same type of procedure.  I hope you get some clarity on your own decision soon.

Adrienne

[JerseyGirl2]

I don't know whether I'm the only one who has noticed that the "fat harvest" seems to be appearing on this thread as one of the factors to consider when deciding, if you have an option, which surgical procedure to select. I can only speak for myself, but the "fat harvest" is very, very insignificant in the overall scheme of things. You'll end up with a fairly small incision on your abdomen ... and that's about it. Please don't let that aspect of the surgery be a factor in your decision-making process!!

Catherine (JerseyGirl 2)

[Tumbleweed]

My surgeon told me that there was only a 25% chance of retaining hearing with the retrosigmoid.  I'm guessing size and placement have a lot to do with it. 

Size and location do play a role. Another factor is the condition of the hearing nerve going in to surgery. When I was diagnosed, I strongly considered surgery instead of radiation (although I ultimately chose the latter, in the form of CK). Dr. Derald Brackmann ordered an ABR (auditory brainstem response) test for me. Although my hearing was relatively good at the time, my ABR test results were bad. Four of the five "nodes" showed very low-amplitude signals; in plain English: my hearing nerve function was hanging on by a thread. From this, Dr. Brackmann concluded that my hearing nerve would not functionally survive the trauma of a retrosigmoid approach and that I would emerge from surgery deaf on my AN side.

As an aside: The size and location of my tumor ruled out middle-fossa approach. So, as translab always results in SSD, I was facing SSD with any surgical approach. This led me to consider radiation (which I had formerly ruled out due to uninformed bias, meaning I hadn't researched that option at all at the time and just didn't like the idea of irradiating my brain). Because hearing preservation was so important to me, Dr. Brackmann recommended I have radiosurgery. His recommendation was GK, but I chose CK after researching the differences between the two (very similar) types of radiation therapies.

Best wishes,
TW

[leapyrtwins]

I don't know whether I'm the only one who has noticed that the "fat harvest" seems to be appearing on this thread as one of the factors to consider when deciding, if you have an option, which surgical procedure to select. I can only speak for myself, but the "fat harvest" is very, very insignificant in the overall scheme of things. You'll end up with a fairly small incision on your abdomen ... and that's about it. Please don't let that aspect of the surgery be a factor in your decision-making process!!

Excellent point, Catherine!  I didn't have a choice when it came to the fat graft - but it definitely was no big deal.

Jan

[Mickey]

Hi Anna! I`m in the NYC area also. Presently W+W with my Dr`s Roland + Golfinos. At first I saw Roland which then recomended Golfinos for his opinion. I was real comfortable with them  laying out all my options. They are a team! Best Wishes, Mickey

[annac]

This "fat harvest" is not in the slightest a decision maker. In fact, getting rid of any fat from my abdomen would be a plus! 

I don't know whether I'm the only one who has noticed that the "fat harvest" seems to be appearing on this thread as one of the factors to consider when deciding, if you have an option, which surgical procedure to select. I can only speak for myself, but the "fat harvest" is very, very insignificant in the overall scheme of things. You'll end up with a fairly small incision on your abdomen ... and that's about it. Please don't let that aspect of the surgery be a factor in your decision-making process!!

Catherine (JerseyGirl 2)

[ladida]

....Hello:

I had the same size and opted for surgery as I was told after 5 opinions that getting rid of the thing was best for my own mental health.  I was also 55 then.

In my case I went to Dr. Brackman, was out of the hospital on the 5th day, and stayed at the New Otani Hotel to recover alone!!!  I took a spa day at Ole Henrikson of Denmark, a day trip to see all of Hollywood and was back home on day 8 and back to work on day 14.  I am a medical professional and cannot speak more highly of anyone than Dr. Brackman.

I had Anthem/BC and out there it is called something else but my insurance covered it and he took whatever they paid.

Because these are so rare, I agree that you do need someone who has experience and he told me he does 3 per day.  He also teaches and the neuro was Dr. Schwartz,

send him your actual film from radiology, not the disk, he will review and call you...be prepared that it is usually in the evening due to time delay...depending where you live.

My personal opinion is to get on with your life and be rid of it...

You should do what he advises.  I also went to Yale, NYU and spoke with another Dr. King in LA...Dr.Brackman just relaxed me and had the most experience...of those I encountered. 

I am not 58, have had no problems, no paralysis,and he did not shave my head....huge relief per my request, but most important to me was knowing it was finally out...not one Dr. recommended radiation for my age.

Really, other than getting used to the loss on one side which I only notice when driving Thur a bank drive up or trying to write with my right hand and talk on the phone with my left ear (which I can't) I am OK....

O really look better people say and I think just knowing it is gone relaxed me.

I know the never say never, but we could get hit crossing the street too.

I don't think about it anymore and the freaking out stopped once it was gone. 

I  gained an appreciation of life, re evaluated and am working in the US, and Paris, travel as much as possible and just want to downsize and enjoy what life I have.

I asked a 95 yr old patient of mine what she would change or advise me on life.

She said worrry is a waste of time and changes nothing and men come and go as do friends....to live life  and enjoy it.

Best of Luck to You.

[ladida]

PS

APOLOGIES FOR MY TYPOS...

[NancyMc]

La-Di-Da,
Love your attitude.  I have adopted the same after the top five stressors in one year three years ago.  Also, 58, but only for two more months.  Headed off on a trip in a week.  Life is grand.  Enjoy what's left.
Nancy

[lori67]

Ladida -

Welcome to the forum!  I'll excuse your typos if you excuse mine!   

Not questioning your doctor's stats, but is it really possible to do 3 AN surgeries in one day?  My surgery took 9 hours - I realize some are shorter, many are longer, so one would have to assume that this doctor never eats or sleeps!  Wow - and I thought I had no life!   

Lori

[Kaybo]

I was wondering that too...even on an average - that is an almost impossible number...my surgery was 14 hours...

K   

[CHD63]

If he does 3 a day, not sure I would want to be #3.     Even at 5 hours, which mine was and is relatively short for AN surgeries, that would translate to 15 hours of tedious operating.  Unless, of course, someone else is doing the opening and closing.  Then I suppose it would be feasible.

Clarice

[NancyMc]

My guess is he is in and out of ORs with the neurotology team doing their part while he's off in another skull and then another and back and forth etc etc.  Get my drift? 

[lori67]

Yeah, definitely get your drift, but, I don't know.  I think I'd prefer to have his undivided attention when his mitts are inside my skull!  Sometimes I don't like to share!   

Lori