bells palsy and acoustic neuroma

[leelee]

Three weeks ago I was diagnosed with bells palsy on the left side of my face and two weeks ago I was also diagnosed with an acoustice neuroma.  I am really nervous and would like to know if there is anyone else out there that has gone through this or is going through something similar. I am having some trouble adjusting to my situation. Thanks LeeLee

[Lilan]

Bell's palsy is basically a fallback for facial weakness that cannot otherwise be explained. Given that you were soon after diagnosed with a tumor that can affect facial function, I would think that the diagnosis of a tumor would put the Bell's palsy diagnosis into question? What did the doctor say about whether your facial issues relate?

[leelee]

Two of my doctors have said that they doubt that the bells palsy is related because of all the pain I am feeling on the left side of my head. They said the tumor would not cause that kind of pain.  Lee Lee

[sgerrard]

Hi Lee Lee,

What side is the acoustic neuroma on? Do you know how big it is? It seems very likely to me that it is the culprit behind both facial paralysis and facial pain; they are capable of causing both. The 5th and 7th nerves are right in the same area, it is like a big highway interchange in there, and is not too hard for things to get pretty tangled up.

Welcome to the forum, I hope you find it helpful and also comforting. You are among friends here.

Steve

[Lilan]

Hmmm.

I would a.) check out the Facial Issues area and start reading around there -- I'm sure some more posters can weigh in there and b.) continue to seek medical info or share some more of what you already have here (like how big is your AN?) so we can offer informed amateur opinions, LOL.

I am a little surprised that they'd not investigate a connection, as there are nerves that can cause facial pain or weakness that *could* be affected by a tumor in the area.
I had mild facial symptoms and that made them immediately aggressive about figuring out what I had.

Are your doctors experts who are very familiar with ANs? What course of action have they recommended for you? Are you taking something like steroids, or do they just want to wait and let it clear up on its own?

[4cm in Pacific Northwest]

Lee Lee,

I am sorry this is happening to you so quickly and all at once. HUGS!

If the Bell's Palsy side and the acoustic neuroma side is the same, of the head, - these are most likely related. My acoustic neuroma involved the facial nerve as well and had incased it- however I did not have bells palsy before surgery. This came after when the facial nerve was nicked by the surgeon as he attempted to dissect the tumor from it. Cranial nerve #7 is the facial nerve and #8 is the acoustic nerve (also vestibular)-  these run side by side each other very closely.

Hear is an illustration to show you this
http://en.wikipedia.org/wiki/File:Gray789.png

This explains the cranial nerves and what they control
http://en.wikipedia.org/wiki/Cranial_nerves

Chances are your acoustic tumor involves both cranial nerves and is now applying pressure to the facial nerve. How big is the tumor?

You need to see a “neuroTOlgist (not to be confused with a "neurologist")
 ASAP- not just an ENT.  Have you done this yet?

How is your balance and hearing? Can you describe any other symptoms?

DHM

[leelee]

Thank you all so much,  you all have made me feel so much better already.  My tumor is just inside my skull at the base on the top of the eighth nerve and the MRI said it was small about 2x2x3 mm.  The doctors I have now are my family doctor and a pain specialist that has been treating me for my existing Fibromyalgia that I was diagnosed with in 2003.  I am going to a specialist at PENN in PA on August 26 for the tumor.  I have to get a hearing test yet to see how much damage I have.  They think my bells palsy was caused from a virus but are unsure because it started when I was at the dentist and he injected the needle for the second time and while I was laying there my left eye slowly opened and I couldn't shut it.  Later that night it shut, but then the next night my eye wouldn't close again and my face was all twisted. At first I thought I was having a stroke.  The surgeon I am going to specializes in the Gamma Knife and acoustic neuroma's so hopefully he can give me some answers.  Thanks again for caring, it means alot.  Lee Lee

[4cm in Pacific Northwest]

Lee Lee,

Are your acoustic neuroma tumor and the bells palsy on the same side of your head?

If you see a neurtololgist (experienced in acoustic neuroma or gamma knife) be sure that they have MUCH experience.

Here are some links for you to look over

http://www.anausa.org/selecting_medical_professional.shtml

http://www.anausa.org/physicians_directory.shtml


DHM  

[mk]

I think it would be a very strange coincidence to be diagnosed with an AN and Bell's Palsy at the same time. Although generally such a small AN wouldn't be causing so much havoc with your facial nerve, I can't keep but wondering. Could it by any chance be a facial neuroma (schwannoma), instead of an AN? These two get very easily mixed up on the MRI (since they run parallel inside the IAC), and sometimes there is no way to tell them apart, unless they are removed surgically. A facial neuroma would be capable of wrecking all this havoc with your facial nerve, even if it is very small. There are quite a few here who have/had facial neuromas (Anne-Marie comes to mind) and they can attest to this.

Marianna

[4cm in Pacific Northwest]

Marianna,

I was thinking the very same thing. An "experienced"  neuro"to"logist and a neurosurgeon needs to be consulted with.

If it is a facial neuroma than there is a higher chance of hearing preservation and this case you would want to avoid the translab surgery approach as it will take out your hearing for sure.

Lee Lee- is the Bells Palsy on the same side as your tumor? This information would be very helpful information to us.

DHM

[Cheryl R]

The sudden onset of such symptoms would be doubtful for such a small AN.      As I said in the previous post  mine were gradual the month before of the 2 cm facial neuroma and the dr said he could not say for sure it was one till got in.   If was and the nerve severed then would do the nerve graft from the ear which he did.     Plus I just had some droop pre op.   No eye issues.             I am still saying I bet it is bells palsy.                                    Cheryl R

[Lilan]

I will be very curious as to what you find.

I had a very small area of enhancement and they thought it was possibly a viral inflammation. (There have been cases of ANs wrongly diagnosed, when in fact they are viral inflammatory lesions.) So if they think it's a virus, I'm surprised they would definitively diagnose you with an AN and not consider the possibility that it's inflammation lighting up on the MRI, if it's corresponding with Bell's palsy.

As others have mentioned, there are other kinds of tumors that can cause facial symptoms at very small sizes, including mine. Some doctors misdiagnosed mine as an AN at first.

This is a very interesting situation and I hope you'll keep us posted -- more importantly, I hope your facial issues resolve quickly.

I know we are barraging you with questions, but we have all become armchair neurosurgeons!  Bear with us and accept our best wishes in the meantime!

[leelee]

Sorry  I didn't get back to you all sooner, my internet service stinks.  I forgot to tell you the neuroma is on the same side, the left.  My family doctor sent me right over to the eye doctor and I am glad he did because at the hospital they put the wet gauze right on my eye which scratched my cornia.  My eye is fine now Thank God.  I went for my hearing test they said it was fine.  I have noticed loud noises bother me alot.  I read up on my neurosurgeon from Penn.  He did his internship and residency at the University of Pittsburgh.  He did his fellowship at Cleveland Clinic.  His name is John Y. K. Lee, MD.  Thanks again, you guys have been great.  I will keep you posted.  LeeLee

[4cm in Pacific Northwest]

Lee Lee,

I just looked up the doctor you mentioned.
http://pennhealth.com/Wagform/MainPage.aspx?config=provider&P=PP&ID=9800

I suggest that you contact Dr. Moses Ariaga. You may want to contact him to see if he knows this neurosurgeon you mentioned in your post. Dr. Ariaga is a highly reputable surgeon and was way up there on my list for selecting “world-renowned” surgeons. I did not go to him as geographically this was just not going to work for me. Here is a webpage on him
http://www.pittsburghear.com/index.cfm/fuseaction/site.physicians/action/dtl/phys/99794613.cfm

I was most certain that he actually had moved to Louisiana- but now looking at his website I may not to be up-to-date on that.

He has his own website.
http://www.moisesarriagamd.com/home

He is also listed here on the ANA website
http://www.anausa.org/physicians_directory.shtml
&
http://www.anausa.org/mc_allegheny.shtml

I called around before I went with my “surgical team" (Neurotologist and neurosurgeon work together) and did background checks on both of them through www.healthgrades.com (my surgeons had immaculate records but some others I looked at and I was actually seriously considering, geographically close to home, did not …so I went to California)

Dr. Arriaga, Dr Jackler and Dr Brackmann (well respected neurotologists by MANY of us) are all colleagues and have been in this acoustic neuroma business for a long time (all world renown). My ENT could not say enough positive things about Dr Ariaga.  (You have a right to have a copy of your MRI CD  in your possession.) I am thinking you might want to run  a copy of your MRI films CD passed Dr Ariaga for an opinion.  You could at least ask him what he knows about the neurosurgeon and his experience level.

(However this neurosurgeon is “director” of the Gamma knife center so no doubt he is experienced.  He too would have to have good people skills-, which is sooh important when you are going through this and need compassion and understanding. You also want a surgeon who is going to make sure you get good “follow up care” after treatment. My experience is that “directors and department heads” are very busy and not always available for their patients when referrals are needed. You have to keep tracking them down as you will be just one of their MANY responsibilities. Often they delegate subordinates to you-, which for me has often been VERY frustrating.)

I think it might be worthwhile to get a few opinions to see if FOR SURE it is actually an acoustic neuroma and not a facial neuroma. Also know that you can send a copy your MRI CD into House Ear Clinic for their opinion- at no cost. (At least last I heard) I shared my CD with 9 surgeons… the one who was absolutely bang in about what the tumor was- was Dr. Derald Brackmann.
http://www.houseearclinic.com/brackmannDE.htm
(Great guy- I actually flew there for a consult and did not just mail it to him as I wanted to meet him face to face.)
Dr. Brackmann is totally upfront and honest about what the complications could be. (I should have listened to his warnings about the retrosygmoid being riskier for me, in my case, and done the translab- as he advised me.) However know that if this is a facial neuroma that doing the translab will take out your hearing and I am thinking you have many other good options with your smaller size tumor (I only had 2 options with a 4CM. In hindsight I am not sure I made the best choice- but it was my choice and I have to live with that and just keep moving forward.)

Hang in there- we are here to support you… and hopefully not inundate you with too much information.

 I have noticed loud noises bother me alot.  

This is called “hyperacusis”

Here is a link
http://en.wikipedia.org/wiki/Hyperacusis

It is caused by nerve damage to the Stapedius muscle. The facial nerve is not firing the muscle to move (to close the ear) -when there are loud sounds.

This link explains the function of the stapedius.
http://en.wikipedia.org/wiki/Stapedius


Sadly I have this too- however mine came after surgery. It is actually not the acoustic nerve that controls this sound level -but the facial nerve. This is one more reason why I think you need to clarify if this is a facial neuroma or an acoustic neuroma. The neurTOlogists and neurosurgeons will hopefully know more after closer examinations of your films.

Your learning curve of physiology will go way up after this journey.

Please remember I am just an experienced AN tumor patient and NOT a medical practioner. But if you know what these terms are before hand and understand how the cranial nerves work- you may be able to ask more educated questions of the doctors- in that limited time you have with them for a consultation.


Keep moving forward. You sound like you are on a good track for seeking expert help already.

HUGS

DHM

[Adrienne]

Hmmmm, no doctor here, but it sounds like way too much of a coincidence.   I had an odd "coincidence" with my AN too.  I had sharp shooting shock like pains up the same side of the face as the AN.  My GP told me it was "unrelated" and was likely a separate 'disorder' called Trigeminal Neuralgia.  My dentist wanted to put braces on me, as he told me the shooting pain had to do with my jaw being out of alignment.  The only one that recognized (immediately) the connection was the neurosurgeon.  In fact, my specific AN was growing very intertwined with my Trigeminal nerve-which totally explains the pain (gone since surgery).

So while you may have both, I'm going with the AN as the root cause here.  It's amazing how many different areas of your face it can mess around with........(touch, feel, pain, numbness, paralysis, fluids, etc)

Adrienne