Appt at MEEI-Please help if you can?

[inmaine724]

Hi all.

I wanted to give an update and ask for some help with what they told me. 

Dr. Nadol came in and gave me the different options we would explore, considering the AN.  I had the hearing tests done again, and was told I have moderate hearing loss, then went back to him.  I told him that I have that jumping right at the corner of my lip from time to time, so he sent me away again to have a facial nerve test done. (which was horrible)  When I came back to him again (keep in mind we had been there 5 hours at this point!!) he told me that it looks like I have only 46% of facial nerve response in that side of my face, which would indicate a facial schwannoma rather than an acoustic neuroma.  But that he would spend time with his neuroradiologists and figure out what was going on and where it is actually located.

What does this mean???  Is this worse? Better?  He told me that they can't radiate a facial nerve, OR surgically remove that kind of tumor, so what happens now??  I'm only 40 years old (tomorrow, by the way! :-) and I like to smile!  This is now concerning me even more than the AN diagnosis.  It could still be an AN, but I won't know until he calls.  OH, and he said that there's a chance it could be a different type of tumor, but the chance of malignancy was very low.  MALIGNANCY!??  What??

Please help if you have any thoughts/suggestions?  I would appreciate any opinions you guys can offer about the visit!

Thank you!
...Danielle

[cin605]

Have you had an MRI w/ contrast???

[Jim Scott]

Danielle ~

I'm sorry to learn about the medical labyrinth you had to negotiate at the Massachusetts Eye and Ear Infirmary.  I'm not a doctor and wouldn't want to risk offering incorrect medical information and possibly making you even more anxious than you already are, so I won't comment on Dr. Nadol's observations regarding exactly what kind of tumor you have, except to note that a facial schwannoma is a tumor very similar to an acoustic neuroma but located on the 7th cranial nerve instead of the 8th cranial nerve.  They have approximately the same infinitesimal risk of malignancy as an acoustic neuroma (well under 1%).  As Cindy ('cin605') noted in her post, a gadolinium enhanced MRI is the very best way to verify an acoustic/facial neuroma.  I'm surprised your doctor hasn't ordered one by now to determine the specifics of your tumor. You may need to request that he do so to obtain an accurate diagnosis.  Based on your account of your day spent at MEEI and your consultations with Dr. Nadol, I'm not surprised that you're less confident than you would like to be.  I would definitely seek a second opinion.       

Jim

[Cheryl R]

Danielle,  There have been a few here who did have a facial neuroma with treatment!     You can not tell if it is a facial neuroma until get in to it during surgery.    The MRI with contrast does not tell for sure.      One can have a great deal of damage to the facial nerve with it just being the regular AN but the location and how it is pressing on the facial nerve plays a part.   
I had a facial neuroma surgery in 2006 as have NF2 and had 2 ANs and the facial neuroma.      Many surgeons have no expertise or knowledge what to do when do the surgery and find it is a facial neuroma.   My neurotologist at Univ of Iowa had a thought that it was ahead of time but could not say for sure till in.             He is one who will try to remove the tumor and if the nerve is severed, then take some nerve from by the ear and graft in at the same time.     One will have paralysis for several months but it can improve over time but usually not with full movement.   This was my experience and of course wish it was perfect again but glad I do have what I have and I do look ok just to look at me.    I have eye closure also with some slight dry issues.               Some surgeons remove part of the tumor and then use radiation to finish treatment.    There has been poeple here that the surgeon went ahead and has caused them to have problems and need further surgery or with pain issues.                  One will end up with paralysis if the nerve is severed and there are some other types of surgery which do try to help the face improvement and work for some.                     I read back some of your posts which say your tumor is small so hard to tell from that also.   
I would keep at seeing someone until you  it is the right one for you and your situitation.                All this is not what one wants to hear from a surgeon!                                    Cheryl R

[lholl36233]

Danielle,

I have a facial nerve hemangioma.  I'm not sure if there is much difference between that and a facial nerve schwannoma.  I also go to MEEI.  Dr. McKenna (who I assume is in the same office as Dr. Nadol), did not want to surgically remove my hemangioma due to "guaranteed damage to the facial nerve".  He referred me to Dr. Loeffler at MGH to have proton beam radiation.  I went to Boston every day for 6 weeks for treatment.  I'm in Central MA so it was an 80 mile round trip for me.  My hearing has greatly improved.   I have a 1 year follow up MRI in December.

Ask about proton radiation at MGH?  Please let me know if I can do anything to help you.

Laura

[inmaine724]

Jim, I have had a couple of MRI's with contrast, in fact, had the IAC about a month ago, with contrast.  That's how they verified the tumor.  It also showed on an MRI from a year and a half ago, but since it wasn't the reason I had the MRI back then, it was not discovered.
But yes, have had plenty of Gad in my system!  :-)

Yes, Laura, Dr Nadol is in with Dr McKenna.  I asked specifically for Dr McKenna, actually and was told "Dr Nadol is the Chairman of the Dept.  This is who you want".  He was very nice, and I have no doubt I got the best possible care available, but...  That said, I will still seek out a second opinion once he gets back to me with an actual diagnosis.

So, I'm just freaking out a little more than before.  I don't want to have any issue with the muscles in my face.  The AN, although just as serious, seems to be more treatable according to what he told me.  Ughh...just frustrated...

Thank you all! 

[lholl36233]

You should be able to see Dr. McKenna if you want to.  He is not afraid to disagree with anyone.  What he told me was a complete 180 from my first doctor in Worcester. 

[lholl36233]

Happy Birthday tomorrow!  I'll be on the lookout for your updates.

[cin605]

Glad to hear you have had an MRI.....as for second opinions...depends on how far your willing to travel.
Happy 40th!iether way its a very scarey diagnostic...please know that we are all here for you to support and offer our experiences.fell free to vent also...its good to get it all out w/ people that actually understand where your coming from.
Cindy

[Jim Scott]

Danielle  ~

Nurse Cheryl R. neatly clarified the problem differentiating a facial from an acoustic neuroma .  (Thanks, Cheryl).  I apologize for missing the fact that you've had multiple MRI scans but I stand by my suggestion that it would be in your best interest to pursue a second medical opinion.  Oh, and Happy Birthday! (I remember being 40.  Ronald Reagan was president,then.  Sigh)

Jim

[linnilue]

You should be able to see Dr. McKenna if you want to.  He is not afraid to disagree with anyone.  What he told me was a complete 180 from my first doctor in Worcester. 

  I had Dr. Mckenna for a second opinion after suffering from radiation damage.  He disagreed wholeheartedly with my doctors in Vermont and he got me on the path to healing.  I would go with him for sure.

[linnilue]

I am very interested in this conversation.  I have recently developed horrific pain in the left side of my face where my AN is.  I have a scheduled MRI in a couple of weeks and before this post I had NEVER heard of a facial schwannoma.  How ironic that when I entered this site tonight this was the first topic I come upon.  I haven't been to the site in a very very long time.  Hello all...I'm baaack.

[cin605]

Hello Nikynu and Welcome Back!

[jerseygirl]

Hi,

When talking to doctors about my AN, I learned that they distinguish between AN and facial shwannoma by which symptoms present first. If facial symptoms present first, it is a facial shwannoma, especially in a small tumor. The thinking goes that the facial nerve gets damaged and produces symptoms as the tumor grows and the nerve gets stretched. Facial symptoms, if they occur with AN, usually occur post- not pre- treatment (isn't it depressing?). Facial nerve can withstand quite a bit of damage before it manifests itself. If hearing symptoms present first, it is usually acoustic neuroma.

Another test that can pinpoint to the tumor origin is Brainstem Auditory Evoked Response. It tests acoustic nerve and how signals reach brainstem through it. Abnormal BAER (or ABR as it used to be called) is highly indicative of AN. Presumably, in a small facial neuroma it is going to be normal, but I am not a doctor. Some very small ANs also can produce normal results. No test is foolproof.

Back in 1988, when MRI just came into existence and gadolinium contrast was not invented yet, this test was used in addition to the MRI. I had one; it was , of course, abnormal, thus confirming that it was AN. This is despite perfect hearing and speech discrimination.
Hope it helps.


                               Eve

[lholl36233]

That is interesting.  Hearing symptoms presented first for me but I don't have an AN.  My hemangioma is on the facial nerve.  The doctors are stunned I've never had an facial issues.  Let's hope it continues...