frustrated!!!!!!!!!!!

[amaguarda]

i am new to this site and i need all the help learning from others, i am an american living in germany due to the US army. i have always told doctors i was losing my hearing and they never seemed concerned. i moved to germany in june 06. i was pregnant and i started having balance problems. i had an mri after i had my baby and found out i had a tumor the size of a baseball. they removed it on september 11, 2006. the doctors told me the facial paralysis was temporary and would recovery after about 3 months. well, 10 months later i have not improved at all and my doctors are not telling me anything. i am forced to see german doctors, who are good doctors just not good explaining things to me in english. i am not sure what kind of doctors i need to see.before this surgery i had problems, but i seem to feel worse about this each day. can somebody tell me what doctors i need to see, and if there is any medication that helps? thanks for listening......

[Jill Marie]

You've come to the right place for help, there are a lot of people on this board that can give you support and info. and they will probably need more info. from you to better understand your situation.  As for the facial paralysis most will tell you not to expect any improvement for at least 6 months not 3 like the doctor said.  My tumor was actually on the facial nerve so my situration is different, those with AN's like yours will be posting posting soon to help.  I first noticed my hearing was going as well, no one seemed concerned, that was when I was in first grade, no one seemed to care tell I was in my 30's, now I'm 50. 

As for your being in Germany my youngest is stationed there, in fact we just talked to him an hour ago.  With the time change you are most likely asleep now so hopefully you get some info. from the others on this board by the time you wake up.  Goodluck!  Jill Marie

[TP]

Hi Amaguarda: You had a very large tumor! Bless you! From my personal experience and from what I've read thru the threads on this website, your facial paralysis will more than likely last for sometime. My Dr's thought my face would be back to normal after 6 months and I am at 13 months from my AN surgery and I've only slighly improved since my surgery. When I raise my eye brows only one side moves, when I smile I get a slight grin on my AN side, my face has some pain thru out the day and plus some wierd sensations.

We are here to help and support you! You will learn a great deal from folks on this website. Congratulations on your new little one in your life! I am very proud of what you have gone thru! Stay strong and keep positive! You are in our prayers.

[Jeanlea]

Hi amaguarda,

Sorry to hear about your an and the problems associated with it.  I'm guessing that your facial nerve was not cut since the doctors told you that it would improve.  Facial nerve recovery can take a LONG time.  I had my surgery about a year before you.  I had no movement at all following surgery.  My doctors never told me I would recover.  In fact after 6 months and only a tiny bit of movement my doctor told me my face wouldn't come back.  After about a year my mouth was barely beginning to turn up.  Now at 22 months I can make a small closed mouth and open mouth smile.  I still feel a lot of impulses in my face that make me feel like I should still show improvement.  I'm not sure if I'll ever get back to "normal", but I do look a lot better than I did at 10 months.  
I did go for facial retraining this past June.  My exercises include things like smiling a small smile, only going as big as I can to keep it symmetrical.  Facial symmetry is what I'm trying to regain when I smile and talk.  Check out the bells palsy website.  It gives more information about facial paralysis.  http://www.bellspalsy.ws/

Jean

Glad you find this site.  I'm sure others will have more to add.  Sometimes it helps just to be able to "talk" with others in the same situation.

[amaguarda]

i had an mri a few months ago and was told there is no sign of a facial nerve on the mri. my neurosurgeon didnt even blink at that, he says no problem. i'm pretty sure they cut my nerve, i am just not being fully informed of this and that is what is frustrating. 

[Obita]

Hi amaguarda and welcome:

I think you need to find a different doctor for your follow up.  Way too many people feel that they have been dismissed by their doctors after surgery is over.  A good doctor will see you through it all and provide referrals when necessary. 

A friend of my cousin's had surgery in Frankfurt done by Dr. Mann and he was very happy with him.  Also, a forum member with the username Dan is contemplating surgery with Dr. Mann in the fall.

Good luck amaguarda.  You deserve to know what shape your facial nerve is in FOR SURE so you can be treated.  Send me a message if you would like more info on my cousin's friend.

Kathy

[Dan]

Hello, and welcome to germany, also congratulations on the newborn. I dont know anything about facial nerve therapie, but I might be able to help with german.  I'm retired Army and living in germany near Worms.  I have an AN and have been looking for a good doctor for possible surgery.  From what I have found is Prof. Dr. Samii in INI Hannover is probably the best in germany and could answer alot of questions through e-mail in english.  The problem with INI Hannover is its a private Hospital and my german insurance won't pay for a visit, but it doesn't cost anything to get a second opinion per e-mail.  The next best that I have found is much closer to where I live and is also a very experienced AN Dr.. Prof. Dr.Dr.h.c.Mann HNO Uniklinik Mainz(I hope he is as good as his title).  I think Kathy said he is in Frankfurt, but he's not Dr. Mann is in Mainz.  HNO is ENT in english. Hals=troat, Nase=Nose, Ohr=ear.  You really need to talk to a good HNO Dr. in your area.  Here in germany, after surgery they send you to  a Rehabilitation Cener for 4-6 weeks.  If you need any more help with anything, translation etc... send me a personal message.
                                                                               Dan
                                                               

[Obita]

Thanks for the correction Dan.  I should have read that email from my cousin again before posting the info.  It does indeed say Dr. Mann is in Mainz.

Sorry amaguarda and good luck.

[Baba]

Hi,

I'm Barbara from germany. I had an AN-op in 4/06 at the medical university in Hannover. My husband is surgeon and had asked a lot of trauma surgeons in germany about an real good doctor. I can recommend the  Prof. Dr. Lennarz at the University in Hannover, who is a real good spezialist. In Hannover is the largest AN_operation team in Germany situated. The do a lot of operations and are the "leading" hospital for this AN-OP. Just look on the homepage of the university( MHH Hannover). There are also good spezialist in university in Marburg ( Dr. Bertafinanfy)) or at the university in  Erlangen. 
 I had a five week recovery treatment( absolutely great!!!and perfect) in the "rehabiltion center " Roter Hügel"in Bayreuth/ bavaria. There all problems with concerns the post treatment problems are excellent treatet( balance, face.... help.....).  So if you need any help with German doctors feel free to ask me. If there is any possiplity i will help!

Baba

[Battyp]

You know this is what I like about this site. Someone from Germany posts for help and there are actually people in germany there to help. How cool is that?!