newly diagnosed

[BevM]

I have just been diagnosed with a 9.5mm tumor which my ENT doc says is confined to the auditory canal.  I can't get in to see the specialist (Kaiser ) until 7/24 but have sent off a DVD of my MRI to House Clinic in LA (thanks to reading about them on the forum).  In researching information on the AN I see that pain is generally not a symtom especially for a small AN; however, I have significant pain in my neck, head and ear all on the same side as the AN. Can any of you relate?  Is there any medication that has helped? (Advil doesn't cut it!).  Have any of you been Dx. with  Neurofibromatosis? and experience any other tumors of the spine and or cervical spine?  Is there a test for NF that you have been given?

I am in the "Waiting Room" and figure I should use the time to get more information.  I am thankful to have found this site.

Thank you all!

[Joef]

for a long time before I knew about my AN .. I had pain in the neck  ... I blamed it on bad sleeping positions .. I even got one of those special pillows made out of foam .. it helped a little ...I too took advil .. and it help a little, but as you say, it did not cut it totally ...... even when I knew about my AN .. a did not correct the two... but in my 11 months since the op ... no neck pain!!!

[KenJen]

My husband has an 8 mm AN and we are scheduled for surgery on July 17 at House.  Husband has neck pain and pressure headaches and Dr Brackmann says that this is all a part of the AN. We were interested in the Proton treatment at Loma Linda but decided to get the thing out hopefully for good.  Best wishes to you, I know that it is difficult but I am finding the difficult things in life help to make us better. Write any time. Love to talk to you. KenJen

[Sefra22]

I too am newly diagnosed, and have had pain right at the base of my skull on the AN side for about 2 years. It's not a sharp pain like a migraine, it feels more like muscle strain. I find that Advil does help me, though. 

[BevM]

WOW!  quick replies.  I appreciate hearing from you all.  I will continue to look for more responses .

If any of you have any medication information and advice I am "all ears"!  trying to keep my sense of humor!

Any of you have information on the NF II question? ie, cervical spine tumors?

Also wondering about accuracy of the AN dx. I understand there are other conditions possible such as Meningiomas.  The more information I find, the more questions come up. Such as.............
Have any of you had experience with Kaiser docs?  I live in northern Calif. and I am a Kaiser patient.

Thanks, you are all inspirational!!

Bev

[Gennysmom]

I have a stiff neck a lot of the time, kinda feels like I slept funny, but not too painful.  Once a month or so I get searing ear pain for  10 seconds or so.  If you were NF2, you would probably know it because others in your family would be NF2.  If there's no one in your family with it, you most likely aren't NF2.  If you've seen your MRI, and your tumor is conical in shape, then it should be an AN.  I know on my radiology report they said "characteristic of a acoustic neuroma or meningioma", but mine is such a classic conical shape, we all know that's what it is...because of it starting out in the IAC and growing out towards the CP angle, it looks like an ice cream cone from the horizontal MRI section.  AN's are more common than meningiomas, and meningiomas can occur elsewhere in the head, so when there's a growth in the CP angle, I think you can safely say it will be an AN. 

[BevM]

Thanks for the replies:  The reason I am not suspious of NF II is that as a child I remember my Mom saying she had "mastoid surgery" as a young woman but she didn't elaborate and she has since died as have the rest of her family.  I understand that the NF II is hereitary so now I am suspious.

Anyone have any suggestions on medication for pain other than Advil?

Thanks.

[Cheryl R]

I think mastoid surgery was considered a cure all for ear problems way back when in the olden days so she may or may not have needed such surgery.           She would probably have more problems show up she if was NF2.         She would have to had to have AN's in both ears.          I am NF2 with older onset and my parents both died when I was 20 ansd 21 so over 30 years ago and I have no clue if they had any problems.     
                                                    Cheryl R.

[BevM]

Thanks, Cheryl, sounds like you have really been though a lot!  How are you doing now ?  What is your post op experience.  What is your prognosis? Was radiation ever a consideration?  It doesn't sound like radiation is the best choice for most people.  Are you aware of other websites where AN is discussed?

Thanks, Bev

[Road Trip Dale]

I also had neck pain (which is now gone) and had ear aches for years, accompanied by headaches and pressure in the ear canal.  Most of which is now gone.  I still get minor headaches but the doctor thinks it could be from tension.  Anyway there are easily taken care of with a couple of aspirin.  Sounds like all is normal for your husband.  His tumor is relatively small so should be easily handled by the magnificent people that are specializing in the field today.  Good luck!!