Do I have a choice?

[salutrenli]

Hello, everyone! It’s really great to join the forum so that I can share my thoughts and experience with you all. I was just diagnosed with AN last month, during which reading the posts in the forum, consulting doctors, searching information from papers, thesis have actually become my daily routine. Now, it’s decision time. Through all the research and consultations I’ve done, it seems that I have no choice but go with a microsurgery.

However, the dilemma is even though the tumour in my head is about 33mm, I have nearly perfect hearing and speech discrimination and the only symptom for me is feeling a little facial numbness on the right half of my face. I just feel like a normal healthy person with a tumour in my brain, which makes me really reluctant to schedule a surgery.

All the doctors told me that the tumour was big, which has already bended my brain stem and influenced the trigeminal nerve (control sensation of the face), and since I was young (29 years old), I had to take the surgery as soon as possible to get rid of the tumour. The approach they suggested is translab, because it’s easier for them to have a complete resection and preserve facial nerve. When I asked them about the other approach, retro sigmoid, they said that it’s kind of impossible to save my hearing with such a large size of the tumour, so I had to sacrifice it anyway.

That’s all what I learned. So, do I have a choice?  All ideas appreciated!

R.L

[RandomWalk]

R.L.

  This is a hard decision... and it's one I'm facing as well.  In my case, the tumor is small and not affecting my brain.  I think if I were in your shoes, I'd probably feel the need to be a bit more aggressive with the approach.

   It's really hard to sacrifice something as important like your hearing... especially when you no problems to begin with.  It's terrible luck.  But you have one brain.  The last thing I would want is this nuisance to impair my life in other ways.  If there is even moderate risk of other issues, I'd get the thing out and worry about hearing loss later.
   
    I'm learning that reasonable minds can differ.  Nothing can replace the sound advice of your doctors though...

   Best of luck.

   RandomWalk

[leapyrtwins]

I'm no doctor, but your AN is a little big for radiation - most docs have a 3 cm threshold.

Make sure you consult with more than one doctor before you schedule surgery though.

Retrosigmoid will give you a chance of saving what hearing you have in your AN ear, but the odds aren't very good.

Jan

[Cindyswart]

Your journey sounds like mine and in my case, my facial nerve was most important. My hearing was good before, but i had a time of very fast growth so my hearing became compromised. I had retro and I am not SSD, but that is not as bad as i thought. My tumor is completely gone and my life is mine again!!

[Peter325]

Is your tumour 33mm or 3.3cm? At 33mm you would have plenty of choices, at 3.3cm you may have less choice. My tumour is 2.5cm and largely pressing my brain stem. Like you I have pretty good hearing, not perfect but 100% word discrimination. I have some high frequency loss. I will be undergoing retrosigmoid surgery shortly and I've been given a 10-20% chance of preserving some hearing but the main reason I'm doing retrosigmoid is because that is the approach my neurosurgeon is most familiar with. I would do translab and accept being SSD if that was the approach that would give me the best chance of saving my facial nerve, which is most important to me.

At 2.5cm and pressing my brain stem one doctor gave me surgery as the only option and the other gave me all options (w&w, radiation and surgery) but recommended surgery. I think these doctors tend to recommend the approach they are familiar with, generally it's a good idea to consult with a doctor that specializes in each technique, including radiation.

I read an earlier post in the forum where someone was agonizing over the decision to go retrosigmoid or translab and someone replied "go with your gut" and I think that's good advice, research all you can, get educated, consult with the experts and then go with your gut.

Good luck!

[ppearl214]

Is your tumour 33mm or 3.3cm? At 33mm you would have plenty of choices, at 3.3cm you may have less choice.

FYI... 33mm is 3.3cm.  10mm = 1 cm, thus, 33mm = 3.3cm.  Spouse is Brit and trained me on metrics. 

Phyl

[nftwoed]

Hi salutrenli;

  Would say translab provides the best overall view of the facial nerve and requires no cerebral retraction.
  On the other hand, being deaf now after having one side hearing for so long, my feeling is to preserve any semblance of hearing you can; Thus, if it were me choosing, I'd opt for Sub-Occipital.
  Re: That "semblance" of remnant hearing; If they can avoid severing the auditory, or 8th nerve, may well indeed prove better than an ABI down the road. You are young, and have a long way to go with single sided deafness.
  Maybe ask the Neuro if he absolutely has to cut those nerves?

[Peter325]

Gad, sorry I totally read 33mm as 3.3mm, <blush>

[salutrenli]

Thanks for all your quick replies. How I wish the tumour was 3mm instead of 3cm. What if they forgot to put a decimal point between 33mm. The white giant spot glaring on my MRI films helped me pass the denial stage long ago.

Theoretically, enlarged translab approach provides excellent exposure of facial nerve. However, statistically, from published papers the percentages of facial nerve preservation between translab and retrosigmoid are almost the same. What concerned me most are various complications after surgery, which bring down quality of life.

In order to clear my mind and get inspired, I went mountain trekking with my friends this week. Lying under the stars, with the sound of rustling in the tree leaves, I suddenly realized that I shouldn’t just sacrifice my vestibulocochlear nerve without even trying. Retrosigmoid is the way to go. The only question now is which neurosurgeon I should choose.

Doc A：Neurosurgeon, 57-yr-old, has more than 20 years experience dealing with AN through Retrosigmoid. Total cases: about 700, 95% total resection, 96% anatomic preservation of the facial nerve, 86-90% functional preservation of the facial nerve.

Doc B：Neurosurgeon, 48-yr-old, has about 12 years experience of micro neurosurgical operation for tumours of the skull base. Not as experienced as the first neurosurgeon for AN operation. However, many fellow members confirmed that he was a top notch neurosurgeon with exceptional operation skills.

Doc C：ENT, 59-yr-old, who is familiar with both translab and retrosigmoid, has more than 20 years experience for AN surgery. Total cases: about 500, 95% total resection, 98% anatomic preservation of the facial nerve, 80-90% functional preservation of the facial nerve.

A, B, C which one will you choose?

[ppearl214]

A, B, C which one will you choose?

based on your homework, the one your gut tells you to choose   No one can pick Door #1, 2 or 3 for you as you and you alone know your gut... your unique AN journey, your comfort level with each doctor you met, the rapport you established with each one (as well as their staff), their expertise and those that have used these teams in the past (ie: patients referrals from those they have treated in the past).

My choice..... go with your gut.
Just my 2 cents.
Phyl

[CHD63]

Hi R.L. .....

Phyl is absolutely correct that the decision must be yours alone.  The doctor you choose must be the one you know in your heart and soul is the one you want working inside of your skull.  No one else can tell you what your own gut does.

I chose neurosurgeons who were extremely experienced in successful AN removals.  That is plural because I have had two AN removals ..... first one was retrosigmoid approach and second one was translab.  First surgeon was going for hearing preservation and did save 20% of very useful hearing (boosted by a hearing aid).  Unfortunately a tiny fragment must have been left and regrew (very unusual) so 3 years later I had a translab approach at HEI.  Yes, I am SSD, but I knew this would be the case ahead of time so Dr. Friedman implanted the Oticon Medical Ponto Pro (bone anchored hearing device) abutment at the same time.  I am very happy that the tumor is totally gone, my facial nerve is intact, I have no headaches, and I "hear" very adequately with my Ponto Pro.

Best thoughts and let us know what you decide.

Clarice

[Cindyswart]

My surgeon has over 1500 skull based surgeries!! And at first my percentages were 99% for facial nerve preservation, 75% hearing. But, and there is always a but, by the time he actually got in there, I had growth of three times the rate since diagnosis! What I am most grateful for was his experience and expertise in dealing with the come what mays of the actual surgery. My promise for hearing preservation did not happen, my facial nerve is preserved and I have my life back. Being SSD for me is an annoyance, my life is mine again. Overall, it was the peacefulness of his confidence that made me feel that quiet feeling that whatever the outcome, I would be okay, and I am!

[Cheryl R]

You will still be able to hear the trees rustling even with SSD.   The biggest problem is locating sound and where it is coming from.     Also paying more attention to people talking to you.   First locating the person so you can be in their direction and paying more attention to what they are saying as you know they are talking but just may not be able to understand exactly what they are saying.    Some people are easy to understand and others have a lower tone of voice and don't speak as clear as others.                      Also hearing where cars or trucks are coming from if are in a noisy city setting or even in a not so noisy one.
Drs can not tell what damage the tumor has already done to the nerves which is why they do not know ahead what your post op issues might be.    The hearing is permanent but the balance and facial are usually but not always temporary.
Good luck in your choice of dr and type of surgery.    It is a hard decision.                               Cheryl R

[lrobie]

It is a very, very hard decision.  I really wish I was told you have an AN and you need to do this to get rid of it.   

Lisa

[salutrenli]

Thank you for sharing all of your thoughts with me. I just phoned the ENT to cancel the translab surgery. It was not until I was diagnosed with AN that I found decision making could be so hard.

R.L.