newly diagnosed an

[JTomes]

Sam,
I was diagnosed with Bilaterial AN's Oct. 21st 2007. The doctor that I first saw has been NO help at all. He would not even give me the report. I went to the hospital and got a copy of the MRI report myself. I am scheduled to see a Neurotologist tomorrow. I'm unsure about that and would prefer seeing a Neuro surgeon. I'm going to give him a try and see what he has to say. My symptons are twice as bad...LOL. I have had a headache for 16 days now and would do anything to get rid of it. I'll admit, I pretty scared. My husband doesn't want to face the issue, so I am pretty much on my own at this point. I'm keeping my fingers crossed, but I know that something has to be done...and soon!

JT

[berniejfnp]

Hi All,

Had the ov with MGH Dr. Barker today.  All seemed to go well.  THere have been more balance issues at this ov than at previous ov's.  Dr. Barker reviewed the options with me again detail.  At present February is the time for surgery.  I also have had increasing discomfort in the ear, not a pain just an ache, persistent.  Still hard to believe that this is all happening.  Definitely strange.  The support from the group has been good for me and I appreciate all the words of wisdom.  The sharing has been instrumental in feeling more comfortable with this condition.
Bernie

[ppearl214]

Hi Bernie,

Great that things went well today. I have to ask one question... as I know the MGH team is fab.  Did Dr. Barker note anything about any "radiosurgery" options (Proton, Gammaknife, Cyberknife, FSR) to you?  Just curious.

thanks.
Phyl

[ppearl214]

Hi JT and welcome. I do hope your appt goes well tomorrow.

Phyl

[JTomes]

THANK YOU VERY MUCH!

JT

[berniejfnp]

Hi Phyl,

Dr. Barker did speak briefly on the options with radiosurgery.  He did repeat what Dr Poe said that if radiation did not achieve the desired outcome, surgery could prove to be complicated at a later date.  He also said that the true effects of the radiation may not fully show it's benefits until weeks or months later.  Most of what was said seemed familiar to what I had read and heard on the web formum.  It will be interesting to see if a 2nd MRI is recommended to compare the tumor before february.  

Bernie

[leapyrtwins]

JT -

in my experience, you see a neurotologist first.  If needed, you will be referred to a neurosurgeon.  In the case of AN surgery, most neurotologists work with a neurosurgeon. 

Jan

[berniejfnp]

Jan

THat has been my experience as well.  Neurotogist first with audiometry, and brainstem impulse testing, then neurosurgeon.

Bernie

[ppearl214]

Thanks Bernie.  As for anyone going through radiation... that is the toughest part (the waiting game, to see if it worked or not) and I do believe that to be the case for AN's, forms of cancer, etc.... it's a definate waiting game.  So, I understand his comments regarding that.  As one going through the waiting game, I certainly do....

Complications can arise later... true..... but glad you got a comfort feeling and that is all that matters.  Regardless of recommendations here and there, you know what is best for you and your situation... so, regardless of what you decide, if it brings peace to your soul in knowing you are doing what is best for you... then.... that is all that matters... and regardless... we are here to cheer you on.

Hang in there.... you know you got us all to help if need be.

Phyl

[berniejfnp]

Phyl,

Is it customary to repeat the MRI before surgery, preop or only on suspicion that things may have changed?

Bernie

[JTomes]

This all started with my PCP. He thought that I had a sinus infection. Long stroy short, I eneded up having a hearint test with a ENT, he ordered a MRI and now he is sending me to a Neurotologist.
JT

[JTomes]

I hate to be a pest... but what can I expect tomorrow with this new doctor?

JT

[ppearl214]

Phyl,

Is it customary to repeat the MRI before surgery, preop or only on suspicion that things may have changed?

Bernie

Hey Bernie,

You are not being a pest... you want a pest, trust me... I know a few

My understanding that unless it's an emergent situation (ie: life threatening, etc), usually the "baseline' MRI is done, then based on the initial size, another MRI may be done down the road to get a feel how fast (if that) it is growing.  Some watch and wait for years due to no growth... some grow quick.... each iindividual is different.

Once a treatment decision is made, certain docs will redo MRI's.... in the case of my Cyberknife, another MRI was done immediately prior to treatment as the CK is robotics and uses the most up to date MRI to help with the robotics guidance. My hope is that other folks will answer as to timeframe MRI's were done just prior to their treatments.


Hope this helps.
Phyl

[JTomes]

I had the MRI done and the ENT called the Neurotologist right away. He is concerned because they are Bilaterial.

JT

[Cheryl R]

Hello JT.       I am sorry to hear of your hearing of having bilateral tumors.  There are a few of us on the forum who also have this going on.          Tumors on both sides means one has a condition called NF2 and is very rare.          That is good you are seeing a neurotologist.          Each large hospital who treats AN's has their own set up on how they treat pts.    I am in Iowa and go to the Univ of Iowa and see a neurotologist there.  He does his surgeries with the current "fellow" in neurotology doing the surgery  to the tumor and then the regular neurotologist does the tumor removal.           Some hospitals use neurosurgeons as part of the surgery team.         I had my frist AN removed in 2001 with no idea that I would get one on the other side.   It was  found 2 yrs later.     I have went on to have a surgery for a tumor on my facial nerve in 2006 with the nerve severed and a piece of nerve from by my ear grafted in and I have had some return of my facial nerve function.                  I am now watching the tumor on my other side which is causing me to have more and more hearing loss.                Bilateral tumors are a more tricky situitation in order to keep at least one side hearing for as long as possible.               Some are able to go quite a long time this way.                        I have done well after all my surgeries.                   Some of what will factor in treatment is tumor size. Location is very important.    My first AN was farily small but had already made me be deaf on that side.   Others can have large ones with perfect hearing.   Right now is a very scary time for you with a new diagnosis and not knowing what will be happening.
Hopefully your dr will explain things to you so you have a good understanding of your own situitation.       Every case is a bit different.                  Feel free to ask questions here and that we are here to help.             Good luck to you.               Cheryl R