Father Diagnosed

[JennieD]

Hi all. I am very new to this board (registered as of 5 minutes ago, but have already spent about an hour or so reading previous posts). My Dad was diagnosed with an AN tumor yesterday. I don't really know the specifics except that the tumor is small, and surgery is his best option. He has pretty significant hearing loss in his left ear, and has said that he has experienced some balance issues. My Dad has been totally blind since age 5, so the possible loss of hearing is a major factor. He is without a doubt my best friend, so I am (obviously) really worried and upset. I was hoping to hear some feedback about what to expect with surgery, after surgery, and any information you all are willing to share. Thanks in advance!

[Brewers7]

Hi Jennie,
Wecome to our forum!  Where does your dad live?  Many with small tumors opt for other treatments.  Has he considered other options? 
Susan

[JennieD]

Thank you for replying! He lives in North Carolina. He is still in the process of considering all his options. I believe he has spoken at length with his doctor who has said that the best chance at saving his hearing is to opt for surgery. I have also read about further difficulties with balance following the surgery. This is something that would definitely affect his orientation and mobility as a person who is blind. Are these possible balance issues long-term, or will they lessen over time?

[Brewers7]

From what I have read on this forum, most people seem to regain their balance in a few weeks.  I do not know what impact the blindness has on the balance issues.  It sounds like they feel good about saving his hearing.  How old is your father?  Do you live near him?

[mk]

Overall balance is controlled by the vestibular system, aided by visual input and touch (specifically feeling from the feet touching the ground). A person can function normally if two out of these three factors are present. Therefore most AN patients can function pretty normally, even if their vestibular nerve is cut (during surgery) or otherwise damaged. However missing one additional input, could be problematic. I would definitely look very carefully into this. With surgery the nerve is usually severed. Radiation may or may not damage the nerve. It may be advisable for your father to take a vestibular test, to figure out what is the current state of the nerve.

Marianna

[JennieD]

Thanks everyone. My dad is just over 55 years old. I do live near him and plan to be there throughout the surgery and recovery (should that be the route he chooses). I'm currently in school to be an orientation and mobility specialist (hence why I am so worried about the possible balance issues with regards to his blindness). I will definitely bring these possible difficulties with the vestibular nerve to his attention. His Doctors have expressed that they feel positive about saving his hearing through surgery. I am sure they are aware of the implications on his balance, but it is definitely something I feel should be weighed very carefully. I am already very grateful for this discussion forum and the support it is providing! I deal with grief through research and this board/website has already allowed me to gain so much information already.

[Soundy]

Sorry to hear this . My advise would be research research research. Balance for me is still an issue 4 1/2 years out. Walking in the dark or with eyes closed makes this worse. Being blind I would think would make this a real problem. Does he have good hearing in ear not effected by AN? If I get a cold or ear infection in good ear it messes with my balance.

[Jim Scott]

Hi, Jennie - and welcome ~

I'm sorry to learn about your dad's AN.  The fact that he is sightless could make the loss of balance issue problematic for him.  I  can only echo previous posters advice to research this issue carefully and for your dad to be cautious before jumping into surgery. 

Jim

[Tumbleweed]

Hi, Jennie:

Your father should also ask for an ABR (auditory brainstem response) test to find out how weak his hearing nerve is. If it is very weak, it may not survive the trauma of surgery. Esteemed neurosurgeon Derald E. Brackmann (of the House Ear Institute in L.A.) usually orders an ABR test for those patients, like your dad, for whom retaining hearing is absolutely critical. The outcome of the ABR test usually determines his prognosis for whether hearing can be preserved with surgery. The ABR test is non-invasive, painless and quick (takes about 15-20 minutes).

Do not -- repeat, do not -- trust the opinion of only one doctor. Because ANs can be treated in more than one way, each doctor will be biased and tend to recommend that the form of treatment that they specialize in is the best course of treatment. The only way to get a good idea of the best course of treatment for your dad is to consult two or three (or more) doctors who specialize in different forms of treatment (surgical resection, CyerKnife, GammaKnife or standard fractionated stereotactical radiation). In some cases, they will all or most of them agree one particular form of treatment is best for your dad's particular case. But they might all disagree. What you need to ask each of them is what are the percentage changes of hearing loss (and permanent facial paralysis, another possible side effect and important consideration) for the type of treatment they recommend. My advice is to go with the treatment that offers the lowest percentage risk of hearing loss. That could very well be some form of radiation treatment. In fact, people with small tumors are usually excellent candidates for radiation treatments.

Of all the types of radiation treatments available for ANs, CyberKnife offers the best statistics on hearing preservation. A few world-renowed doctors offer free consultations to people with ANs. Contact Dr. Steven Chang (possibly the world's most experienced CyberKnife practitioner, with roughly one thousand operations performed) for a free review of your dad's MRI, ABR, etc. and consultation by phone/email. His email address is sdchang@stanford.edu. Dr. Chang is also a neurosurgeon (he resects tumors he thinks are not best suited to radiation treatments.)

Also ask Derald E. Brackmann for a free review of your dad's MRIs, ABR, etc. and a free consultation by phone/email. Be sure to mention your dad is blind, as that is a big factor.

Keep in mind that the term "hearing preservation" is bandied about quite often by doctors but doesn't necessarily mean what it sounds like. You can lose all but the slightest vestige of useful hearing and still be considered to have "preserved" hearing. You should ask each doctor what the chance of additional hearing loss -- no matter how slight -- is with each type of treatment.

For more info, check out my posts at these links (half-way down each page):
http://anausa.org/smf/index.php?topic=6670.0
(compares the pros and cons of different types of treatments for ANs)

http://anausa.org/smf/index.php?topic=6657.0

Best wishes,
TW

[Tumbleweed]

The only way to get a good idea of the best course of treatment for your dad is to consult two or three (or more) doctors who specialize in different forms of treatment (surgical resection, CyerKnife, GammaKnife or standard fractionated stereotactical radiation).

Sorry, I misspelled CyberKnife!

TW

[JennieD]

Wow, thank you all so much. The information you have provided has been immense. I appreciate all of the feedback and agree that he should speak with multiple doctors to discuss treatment options. He does have fairly good hearing in his non-affected ear. I am concerned with the balance issues as well, as this could cause many problems with independent travel. Thank you all so much again, your answers are definitely appreciated!