New and Confused

[Tag]

 Hi,

First of all, I'm so happy to find this site as it's always easier when you talk to people in the same situation as you. Please excuse my english as it is not my mother tongue.

I'm a 36 Female diagnosed with AN in March 06. It measures 1X0.9X1.7 cms. The problem is it was not determined if its AN or Facial nerve neuroma. I went to see several doctors in my country who advised me to go to germany have a surgery with this famous neorosurgeon. Some doctors advised me to have the gamma knife but when I read about it more I discovered its not really safe and can cause complications.

I booked to have the surgery in April but at the last minute I got scared and decided to postpone. Now I have to do a second MRI at the end of this month. However, I'm not really sure I can watch and wait as symptomps are getting worse. My left eye keeps twitching and I have slight numbness in my left side and on a couple of occasions recently my mouth was sagging for a couple of seconds!! Also I have tinnitus which is getting louder recently and by the way when I started to see doctors before discovering the AN, it was because of the eye twitching. I'm so scared and feel it might be a facial nerve neuroma. Recently I read about the FSR which is not available in my country and from what I read it seems that it's a good option.

I really need your advise from your experience. By the way, AN is not common in my country therefore doctors reccommends that I do surgery abroad as they are not experienced with it.

Thanks a million 

Tag

[Cheryl R]

Hello Tag.        I had surgery for a regular AN in 2001 and had all your symptoms except for the facial numbness.     The AN putting pressure on the nerve can cause this symptoms also.     This spring I did have surgery for a whole new tumor on the same side and it was a facial neuroma.  I was having facial droop prior to the surgery but no twitching,numbness etc.       So it could be hard to tell about yours till they get in there.                   They had to sever my facial nerve but put a piece of nerve from my neck in and we are hoping it will heal and I will regain some facial function.   I do have facial paralysis.              Otherwise my recovery from surgery was just like a regular AN surgery.                      Hope this is of some help to you.          Facial neuromas aren't very common.
                             Cheryl R.

[ppearl214]

HI tag and welcome. Your use of English is fine and very understandable.

What country are you located so we can help?  Europe has many options for different treatments.  when they did your diagnosis and measurements of the growth, were you able to obtain copies of the films and radiology report to see if it notes exact location of the growth, as the report usually does tell this info.  Many here (pre-treatment) share some of the same symptoms with you, so we certainly do understand.

Maybe if you can share this info, we can help point you in the right direction for guidance.

Phyl

[Sue]

Hi Tag;

Welcome to this forum. I hope you will find information on here that will be useful for you, even in Europe.  This will be a bigger challenge for you if you don't have easy access to qualified doctors and facilities that treat acoustic neruoma.  Unfortunatly, I don't have any answers for you, just encouraging words!  I do know that surgical patients preach the importance of having a medical team that is highly experienced.  Your outcome will be all the better for it.  And, in my opinion, Gamma Knife may not be as bad as you think. It has been safely used for over 30 years. Of course, that was my treatment, and I am prejudiced!   So, welcome and I hope you can find some answers to your questions.  Good luck to you.

Sue in Vancouver

[pattibobatti]

Hi Tag,

Welcome to the web-site! 

My doctor told me when they were doing my surgery, they did not know if my tumor was a facial neuroma or an acoustic neuroma. He said he cannot prove or disprove which one I had.  He said facial neuromas are more rare.

Hope you read lots here.  People on this web-site are very informed.
Let us know what you have come up with.

pattibobtti

[Tag]

Thanks for your encouraging words. I'm located in Jordan!! I heard about the House Ear Clinic so I guess I will be sending them the MRI to see what they think. I have a sister living in LA so I guess she can help with this.

I really appreciate any information you can give at this stage to help me make a good decision

Thanks

[Desilu]

Hi Tag,

If you choose to come to the states, House Ear Clinic is about the best that you can get. They do these surgeries almost everyday. You will have to stay in the states for about two weeks if you choose the surgery route. That is great that your sister lives in L.A. because then she would be able to help you with your recovery. Please keep us posted on your progress, we are here to help in any way we can.  Ann

[Battyp]

Hi Tag and welcome,
House would be a good option for you.....hopefully all will work out the way it's suppose to.  Keep us updated on your progress, we're all one big cyber family here ) 

[Obita]

Hello Tag and welcome:

How fortunate that you have a sister living in LA should you decide to receive treatment in the USA.

My eye was twitching like crazy before I had surgery, along with my cheek.  My tumor was not a facial neuroma.  I do have tinnitus and I am deaf in the left but just fine otherwise.

Best of luck to you,  Kathy