UPDATE

[Clifton]

Well yesterday i met with the neuro-otologist and he examined my MRI's and said that the due to the nature and position and size of my tumor *2 cm long X 1 cm wide* and the fact that its already pressing against my brainstem we will need to do a trans-lab approach to avoid "blindly poking at the nerve".

He said that because of the fact thats its already pressing against my brainstem that theres absolutly NO chance of hearing preservation in that ear but he said my face will be fine. He said he's never had any problems with the facial nerve doing this approach and knows i'll be the same.

I am content with this, bc as many of you may know i am only 21 years old and the idea of facial paralyses horrifies me.

Dr. Perry is the neuro-otologist and Dr. Bogaev is the neurologist. I've heard good things about them. So hopefully i can get this taken care of in the next few weeks. I will meet again with Dr. Bogaev on Tuesday to discuss it.

[Captain Deb]

Clifton,
Have you asked these docs how many AN surgeries they perform a year?  Can you ask for a list of other patients? Be sure they have a good track record. You can always go to a center of excellence for a second opinion. Travelling for this surgery is something that many of us do. I flew all the way across the country for mine.

Capt Deb

[Clifton]

I asked them all of these questions as well, they do approx. 50-75 per year and he is one of the highest sought after neurologists in the area.

[Captain Deb]

One a week is not bad--you first posted that one doc you saw treated one a month--not nearly enough. Best of luck--we're all behind you --you may want to see if anyone elso on this board was treated by your docs. Start an "anyone treated by..." thread in the inquiry section and you may get some hits. also do a search of his name using the search engine. We all want everyone to feel they are getting the best care thay can get for their situation/tumor size/insurance/treatment choice etc. There are a few other youngies on this board--Taylor, Chelsea, Chris, and they are all just getting on with their lives.

Be well and sail on,

Capt Deb

[Clifton]

thank you!

ive actually talked to someone who has the same doctors and they say great things also! i'll keep you updated!

[Boppie]

Good for you Clifton!  You are in good hands. 

[Sue]

Good Luck Clifton with your treatment and recovery.  By the way...no matter WHAT the age...nobody is too thrilled with the prospect of facial paralysis. 

The thing with these AN's is just like real estate - location, location, location.  If your baby AN were anywhere else you'd have a much different treatment offered to you.  Brain stem involvement certainly shoves microsurgery way to the front of the list!

Thinking of you,

Sue in Vancouver WA USA

[Jim Scott]

Hi, Clifton:

Thanks for the update. 

I'm pleased to see you've selected AN-experienced surgeons and decided on what procedure you'll have.  Unfortunately, 'translab' surgery does involve losing the hearing in that ear.  I hate to see that consequence inflicted on a young person.  SSD (Single Sided Deafness) isn't much fun, even at my age, but we all adapt and adjust, as I'm sure you will.  I fully understand your fear of facial paralysis - a fear that I shared, pre-op - but at least that complication seems to be a remote possibility.  I certainly hope so. 

You seem to be settled and comfortable with your decision so I'll simply add my good wishes to the others and ask that you keep us informed as to your surgery date.  Thanks. 

Jim

[Clifton]

all of you are such amazing helpful people. i appreciate all of this so much.

[Desilu]

Hi Clifton,

You have done so much in so little time. I'm proud of you! Glad that you are happy with your doctors and are moving forward. Please keep us posted and I will keep you in my thoughts and prayers!  Ann

[robynabc]

Hi Clifton,

I am sorry about your diagnosis at a young age.  Eric, my son,  is 18 and just had surgery on a 4.5+ tumor at the end of June.  His facial nerve was spared and we were very thankful.  I think doing 50-75 a year is good but one thing you may want to make sure is have they been doing this for many years.  This surgery is very specialized and it is important to have very experienced doctors from many years back having experience.  My ex husband has a guy at work who had a tumor half the size of my son's and he has facial paralysis and eye issues and I think it is because he did not research his doctors.  Your doctors sound like they know what they are doing but it is important to check them out with other people  (ENTS is a good start) and not just take their word for it.    I just want you to know you are not alone being so young and having a tumor.  My son is doing very well and I just wanted you to know that you will be fine too.   Good luck. 

[neal r. lyons]

Hi Clifton!  Be sure and bring up your concerns when you meet with the doctor on Tuesday.  Do not be timid about asking anything that you want.  In particular, discuss your concerns about facial nerve function as I'm sure you will.  Best wishes to you-Neal