Advice on post op options

[Jenn07]

I am a 27 year old female. I was diagnosed with an acoustic neuroma after a third pregnancy that i temporarily lost hearing and facial use. I was disregarded because i was pregnant and once i delivered things did return to normal with the exception of my balance. 6 months later i was finally diagnosed with an acoustic neuroma. I found little information online and relied mostly on what my surgeons presented me with options. I elected for the surgery. Upon waking up from the surgery i was informed in was a tumor involving my facial nerve and vestibular of the right side. I lost my hearing and facial functions on the right side. The drs estimated the tumor to be about 1.5mm and they did not remove much of the tumor. July 16th was one year since the surgery. I am still deaf in the right ear and i have gained so far about half of the use of my face back. Right after the surgery i started getting pains throughout my head starting from the muscles in my neck. I have resorted to botox in the muscles which is not nearly enough relief. Within the past month i started getting a horrible ringing in my ear and swooshing sounds. Also i am a mom of three and still without my right balance nerve and the rehab places are just too far for me to commute. I already commute close to three hours for my drs in boston. I started working with a pt on balance but some research i found suggests maybe we are not doing proper things to teach my brain to compensate. I will have another mri in mid august at which point my dr plans to have an answer as to whether the remains of the tumor are dead or not. I was just wondering if anyone else had experienced these head issues, the sudden ringing after deafness or dealt with the balance issues. I feel kind of stuck and need to resolve some or all of my issues. This has been rather life altering for me and my 3 small children and i feel like im stuck in this rut. The drs locally are unwilling to assist or help due to the rarity of a facial tumor and the drs out in boston are too far and it seems there is a different dr for every issue that arises. Any advice would be greatly appreciated.

[sarahinPA]

HELLO JENN, I AM ALSO 27 YEARS OLD, AND AT SUCH A YOUNG AGE, I UNDERSTAND YOUR FRUSTRATIONS. I WAS DIAGNOSED WITH MY AN AT THE AGE OF 24, I HAD GAMMA KNIFE, WHICH PRESERVED MY HEARING, AND ALLOWED FOR THE TUMOR TO BE STUNTED AND STOP GROWING. IN 2011, I WAS TOLD THAT MY TUMOR WAS GROWING BACK, A RARE THING, ESPECIALLY AT MY AGE. WE DECIDED AT THAT TIME THAT I NEEDED SURGERY. AFTER MY SURGERY, I WAS LEFT DEAF IN MY RIGHT EAR. I ALSO HAVE RINGING IN MY EAR, CALLED TINITUS. IT DOES NOT GO AWAY, IT GETS WORSE AS THE NOISE GETS LOUDER. IT HAS FOR ME BECOME A PART OF MY LIFE. BEING DEAF HAS ALSO BECOME A PART OF MY LIFE AND I HAVE TRIED TO MAKE THE BEST OF IT WHEN I CAN.

FIRST, I WOULD FIND SOME DOCTORS WHO CAN GIVE YOU MORE ANSWERS, HAVE THEY DIAGNOSED YOU WITH ACOUSTIC NEUROMA? IF SO, THE TUMOR GROWS ONTHE ACOUSTIC NERVE IN THE BRAIN, WHICH IS WHY IT AFFECTS YOUR HEARING. ALSO, THE FACIAL NERVE AND BALANCE NERVE ARE CLOSE TO THE ACOUSTIC NERVE, WHICH IS WHY WE HAVE PROBLEMS WITH THEM ALSO. TALK WITH YOUR DOCTORS ABOUT OPTIONS AND WHAT IS GOING ON WITH YOU. IT SOUNDS LIKE YOU HAD A SURGERY, BUT THEY DID NOT REMOVE THE ENTIRE TUMOR, BUT YET YOU ARE HAVING ALL THE PROBLEMS THAT WOULDBE HAD WITH A REMOVAL OR THE TUMOR (CUTTING THE NERVES TO GET TO THE TUMOR)  UNFORTUNATLY, BEING SINGLE SIDED DEAF IS A PERMANANT THING. I HAVE SEEN MANY PEOPLE ON THIS FORUM WHO HAVE HAD MUCH SUCCESS WITH GAINING THEIR FACIAL MOVEMENTS BACK, AND LEARNING TO COMPENSATE FOR THE BALANCE. FOR ME, I GOT USED TO THE BALANCE QUICKLY, WITHIN A FEW DAYS OF SURGERY, AND MY FACIAL NERVE WAS SAVED DURING SURGERY.

WE WILL BE THINKING ABOUT YOU, AND REMEBER IF YOU DONT LIKE THE WAY THE DOCTORS ARE TREATING YOU, GO TO ANOTHER ONE, AND THEN ANOTHER ONE IF YOU HAVE TOO. YOU DESERVE TO GET ANSWERS AND  KNOW WHAT YOUR OPTIONS ARE, AND WHAT ARE NOT OPTIONS.

GOOD LUCK!

[cpollard]

Hi guys re the tinitus - have you tried homeopathy or osteopathy??? After my surgery I was left with the absolute worse ringing/swooshing - you guys no the drill - but after seeing an amazing homeopath I have been completly free from the noise - i have regrowth and still no ringing etc - its worth a try if you are in to that sort of thing my balance is still abit of a worry - i also have young kids so know that feeling - good luck - i know the jury will be out on whether homeopathy works but it worked for me and may be an option for you guys

[leapyrtwins]

There is no none cure for tinnitus.

You can do things to try to alleviate it - changes to the diet (like avoiding caffeine) sometimes help.

Most people just learn to tune it out.

Jan