Question????

[Sobes]

Hi Everyone,

Well Thursday was pre-op testing and things went quite well. After all was said and done we met with both doctors and were told that they believe the tumor may be on the lower vestibular nerve or cochlear nerve and lowered my hearing preservation chances...but if, in a rare event,  it is on the facial nerve they will just "alleviate the pressure and close me back up"?!?!?! Has anyone else been told this regarding the facial nerve? I wish we would have asked about it but we were so exhausted by that point and I don't think it all "sank" in until we were driving home Does anyone have any insight? Hmmmm...

Bren~

[Cheryl R]

I think most drs when faced with the facial nerve leave some tumor and then have radiation for the rest of it.       I had a facial nerve tumor in 2006 as part of having had 3 tumors now due to NF2.              My surgeon at Univ of Iowa did end up having to sever the nerve and he then took some nerve from by the ear and grafted in.     I have had partial return of movement to where I look ok at rest but not the best smile.  One can have a closed mouth smile        He told he would do this ahead of my surgery.         With my own situitation, the hearing is the most important thing to me and I can live with how I am.       Not that I like it but can live with it.       I am deaf on that side and was almost deaf on the other and my last surgery improved the hearing which is rare.     So I can deal with not a perfect face.             
Hopefully yours will not be on the facial nerve.               Good luck with your surgery!               Cheryl R

[leapyrtwins]

Debulking with large ANs have become quite common lately - they remove what they can surgically and then radiation the remainder so they don't get too close to the facial nerve and damage it.

But since you have a small AN, debulking is probably not in the cards.  I'd imagine the docs would just close you up and decide to radiate.  You say that this would be a rare event, so I wouldn't spend too much time worrying about it.

I've found in my life, that most of the things I worry about never come to fruition.  So, my best advice is be aware of what might happen, but don't stress about it unnecessarily. 

Good luck with your surgery. 

Jan 

[tenai98]

Bren
this is what happened to me.  when they couldnt remove the tumor without damaging the facial nerve( it was important to me that they didnt)they removed what they could and closed me up....Now I'm facing radiation.....
JO

[mandy721]

Bren
In my husband's case, the tumor was all tangled up with the facial nerve, so the surgeon left that part of the tumor saving the facial nerve. From what you wrote, it sounds like that is what your doctor is thinking.  Preserving the facial nerve is at the top of the list of the goals in this surgery.  Ken's nerve is intact, but he  woke up to right side paralysis.  It has been four months since surgery and there hasn't been any improvement in his facial function.  We are hoping and praying that it will improve over time.

Going into the surgery, we knew what the possible outcomes were, but never in a million years did he think he would experience the complications he did.  So we didn't stress much before hand, but now he has significant post-surgery stress as a result of the complications.   

Can you get in touch with your doctors with follow-up questions?  There is so much information to process when you meet with the surgeons that it is hard to process it all.

Wishing you a successful surgery.

Mandy

[Jim Scott]

Bren ~

You're right to be a bit concerned about what you were told regarding the plan to possibly leave some tumor on the facial nerve and then have you undergo radiation to destroy it's DNA. 

That's what I did (debulking surgery then FSR) but it was planned prior to the surgery because I insisted on the approach that would give me the best possible chance at avoiding facial paralysis.  Fortunately, although results can never be guaranteed, prayers were answered and I emerged from the 9-hour debulking surgery with my full facial functions and practically no other complications.  The radiation (3 months later) was uneventful but apparently, successful.  My last MRI (in '08) showed tumor necrosis and shrinkage. Of course, I wish the same results for you and every AN patient.  However, I would definitely call your surgeon to ask that important follow-up question.  He should be respectful enough about your concerns to get back to you, even if it's through an office assistant.  Still, Jan has a valid point - that the issue of the AN being directly involved with the facial nerve is likely remote - but I consider your concern equally valid.  If you get a response from your doctor, I'd be interested to know what it is.  Thanks.

Jim

[cherrypiper]

well in my case the An was shaped like an almond down the 2 nerves. they scrapedas much as they could. BUT because of the smallness of mine

some facial nerve damage was done. i cant blink involutarily on my AN (right) side. my lips dont seal over there, and my rt eye is a source of daily irritation. but i'm 58 so a little facial stuff isnt all that big a deal.

BUT if i was a young lady under 50, then it would be.

i am just happy they got the dang thing. i passed 2 years with no recurrence of any growth on 12 / 03.

my surgeon did tell me about Gamma Knife as well as surgery. what swung me to surgery was this.

If GK didn't work in 6 months, they, the ENT and the Surgeon, both recommended surgery then. so it was why wait ? being an Engineer i kinda took the least path of resistance.

hope this helps. 

[Sobes]

Thanks to all of you for your replies! They are, as always, very helpful and there will never be enough words to express my gratitude for everyone here! I feel very confident in my surgical team and overall the pre-op appt's went really well. It had been such a long day and luckily my mom and hubby were there to help remember all that was said. By the time we met with the surgeons it had already been a 10+ hour day and it was somewhat difficult to remember and decipher all that was being said. I only remembered the part about the hearing preservation being lowered to 40-50% or even 0%, but I couldn't remember why until my hubby reminded me. The surgeon did say that if it is on the lower balance nerve it will also be harder to get to. They also said that because they are using the middle fossa approach and cutting the temporal or "chewing" muscle, it is going to be difficult to chew and therefore I must try to chew often to get the muscle working again (or something like that)! They said it is rare for the tumor to be on the facial nerve (as all of you already know), but I have had intermittent facial numbness (not very often though) and some twitching on that side too and that makes me worry a little that it might be on the facial nerve I just cannot imagine going through all of this to find out that the stupid thing is STILL there Thank you for sharing your experiences with me as it helps to know what to possibly expect and to know that no matter what happens there is a TON of great support and encouragement here
Both doctors said to call anytime with questions and they were both amazing! I will probably call tomorrow and have a few questions ready for them when they call. I also have a question about the original MRI. I obtained a copy of the CD (from my ER visit) and my family and I were looking at it and noticed something on the right side (AN's on the left). We are wondering if perhaps the L and R sides got "turned around" or something. The "object" on the right side looks even larger than the AN on the left. I am sure it is absolutely nothing but it stands out like a sore thumb on the MRI and we all noticed it right away and said "what is that"?!?! It shows up in several of the slides just like the AN. It just looks strange and definitely looks like it doesn't belong there Am I crazy to ask about this? They did another MRI on Thursday but said they hadn't had a chance to look at it yet when we met with them. I will be curious to see if this "thing" shows up with this new MRI too. I suppose one can tend to get a bit "paranoid" after learning one already has a tumor...but it sure looks odd (to the untrained eye anyway). I wouldn't even give it another thought if it was just me who noticed it, but everyone noticed it immediately.

Ok, thanks for "listening"!! I better get some food on now...we are getting more company again today Have a wonderful day today!! I hold you all dear to my heart for all you do for everyone here!!

[Cheryl R]

I have now had mid fossa on both sides.    With the first my jaw was sore for maybe 3 weeks and had some difficulty eating as also has facial paralysis for 3 1/2 mos.         On the other side had not much soreness and also had no facial paraylsis so whether made a difference,I don't know.        My dr never mentioned making sure to chew often.       Drs all have their own way with this though.
Also their own protocols for post op care.                            Cheryl R

[CHD63]

Bren .....

I also have a question about the original MRI. I obtained a copy of the CD (from my ER visit) and my family and I were looking at it and noticed something on the right side (AN's on the left). We are wondering if perhaps the L and R sides got "turned around" or something. The "object" on the right side looks even larger than the AN on the left. I am sure it is absolutely nothing but it stands out like a sore thumb on the MRI and we all noticed it right away and said "what is that"?!?! It shows up in several of the slides just like the AN. It just looks strange and definitely looks like it doesn't belong there Am I crazy to ask about this? They did another MRI on Thursday but said they hadn't had a chance to look at it yet when we met with them. I will be curious to see if this "thing" shows up with this new MRI too. I suppose one can tend to get a bit "paranoid" after learning one already has a tumor...but it sure looks odd (to the untrained eye anyway). I wouldn't even give it another thought if it was just me who noticed it, but everyone noticed it immediately.

When I first saw my diagnosing MRI, I said the same thing to my ENT, "Why is it showing up on the right when you said I had a left side AN?"  You are looking at the cuts from the front so it is reversed ..... at least I am going to assume that is what you are seeing on yours, as well.  Scary to see a big white blob wherever it is!

Clarice

[Sobes]

When I first saw my diagnosing MRI, I said the same thing to my ENT, "Why is it showing up on the right when you said I had a left side AN?"  You are looking at the cuts from the front so it is reversed ..... at least I am going to assume that is what you are seeing on yours, as well.  Scary to see a big white blob wherever it is!

Hi Clarice,

You can actually see both the AN and the other "object" on some of the same slides. The "thing" on the right side seems to be more behind the right eye. It isn't in the same location as the AN and is on the opposite side. I am still sure it is probably nothing but we were all somewhat concerned when we saw it. Do you think the radiologist could have possibly missed something (this CD is from my original MRI done in the ER on Oct. 22)?! I feel a bit silly to call the neurosurgeon and asked for fear that he may think I am a hypochondriac or something, but this other "thing" sure doesn't look like it belongs and I suppose it would be nice to just know for certain. I feel torn and uncertain as to how to handle this. It probably is nothing or maybe some defect from birth or something, but...

Bren~

[CHD63]

Bren .....

It would not be at all silly to call the neurosurgeon for clarification.  Trust me, you are not a hypochondriac and that's what the neurosurgeon is making the big bucks for .....     No reason you should spend time being concerned about this, when a quick call might put your mind at ease.

Best thoughts.

Clarice

[Sobes]

Thanks Clarice

[CHD63]

Hi Bren .....

You are correct that we are not trained radiologists.  However, if you notice, there are all kinds of assymetrical bumps, squiggles, and spots that my untrained eye cannot identify.  Did you get a copy of the radiologist's report, as well.  If so, was there any mention made of any other abnormality or "findings?"  Hopefully, it is something very normal and explainable ..... and as I said before, you should ask your neurosurgeon or his/her office staff for clarification ..... that is their job, to reassure the patient.

Let us know what you find out.

Clarice

[lholl36233]

My 2 cents.

My tumor is on the facial nerve.  This is why the ENT said surgery to remove it would guarantee damage to the facial nerve so basically, surgery wasn't an option for me.

I'm almost done with my proton radiation at MGH.  So far so good...

Laura