Hi, I'm new

[LisaMK]

I had a series of MRI's done a few weeks ago and they found a tumor on my left VII/VIII cranial nerve complexes. I just had another MRI done on Tuesday to take a better looksee at it and I am awaiting the report. I originally went in to the ER because I had extreme pain on the left side of my face, my usual tinnitus/blown speaker hearing in that ear, my eyelid started to droop and head pain beyond my normal headache (that I have had for 17 months).

I also have two pituitary tumors and Cushing's disease, so all in all I'm not a healthy girl. 

I asked my pituitary specialist which surgery I need to have done first and he said the VII/VIII one.

I'm not scared of the pituitary surgery, but frankly this VII/VIII tumor has me terrified and reading post-op posts hasn't done much to reassure me!!! 

I live north of Los Angeles so I plan to see House Ear Clinic for this situation.

Am I going to lose my hearing? How long will it take for me to recover enough to take care of my two young children? I need to schedule shoulder surgery, maybe I shoulkd do that before???  and pituitary surgery after I recover from this.... 

Any ideas? Thank you for your help!

Lisa 

[Peanut]

Lisa,
Derald Brackmann at House is reputed to be a fine doctor who communicates with his patients.  House is mentioned over and over by AN patients as a center of excellence, so go there as soon as possible.  Good luck.
Peanut

[wanderer]

well It would have taken about 2 days for me to be back to normal had I not developed a few strange complications.   Nothing works right on me though.


good luck,  hopefully you get a great outcome and a speedy recovery.

[JHager]

Hi Lisa,

Wow, you have a full plate!

As far as your AN is concerned, hearing loss and/or preservation is primarily related to how large your tumor has grown and how much hearing loss you now have.  I've read a few cases where people who have undergone radiosurgery have actually regained a little hearing, but the goal is generally to preserve the hearing at its current level.  So, how big is this tumor?

For the sake of comparison, I have a 3cm right AN that is being removed surgically on November 7.  I have already lost about 95% of the hearing in that ear, as well as the majority of the balance nerve.  (To put that in perspective: If I have my iPod on full blast, it's much too loud for my left ear, and barely discernible in my right ear.  I can sometimes tell it's music coming through the headphone, but I could never tell you the name of the song.)  Surgery is the right choice for me, for a number of reasons, but the translab procedure guarentees I will lose 100% of the hearing and balance function in my right ear.  While this sounds drastic, it really isn't any different from my current levels.  So, no big deal.  My main concern is preserving facial nerve function.

You'll be in the best of hands at House; my father and brother are both surgeons, and both told me that House is #1.  However, they are surgery-oriented, so make sure to do your research about radiation options.

Good luck, and keep us posted!

Josh

[LisaMK]

I'm not sure what the size is yet. I had a 2nd MRI done to focus on the tumor last week but I haven't managed to get a hold of the report yet. If my ENT's office is open tomorrow I'll snag a copy of it. I can plainly see it on the films but it doesn't appear as large as other tumors I have seen on films on here. I've had symptoms since 1993, however, so it probably is more than a few mm. I have excellant hearing, according to a test I had done in a booth last year - but I have trouble processing what people say and have had two episodes with the facial pain, headache, eyelid droop and neck pain. Last week I had a seizure also, not a grand mal I do not believe but scary nonetheless.

I'm considering driving down to House Ear Clinic and dropping off the MRI films tomorrow for an evaluation, instead of mailing them. I am lucky enough to live close enough to do that without too much trouble. I'm hoping it will help alleviate some of this bottom-of-my-gut anxiety about the whole thing. 

Thank you for your answers. I'll try to keep updated here.

[wind6]

Lisa, Just letting you know I read your posts and my thoughts are with you. I am so happy to see that you are close to House. I have done lots of research and I just know they are the best. I am very impressed with my own surgical team and am grateful I had them but, if I had been able, I would have prefered House.
I wish you strength, courage, and peace as you go through this health crisis.   Sherry

[LisaMK]

I just drove down and dropped off my films. Wow, that's a huge building and very nice! I picked up the report from my ENT's office before I left and it says there is nothing, not even the initial lesion they found on the first MRI. Now, I am not a radiologist nor do I pretend I can read MRI films but I really think I saw something. Not to mention I have very real symptoms. I would love nothing better than to get a clean report, trust me, but I'll feel at ease only when I hear from HEC. Thanks for all of the kind words everyone.

[jw]

Hi, Lisa.

That is strange that it would be there on the 1st MRI and not on the 2nd.  Did they use the gadolinium contrast for the MRIs?  Apparently the tumors really show up well using this.  It could explain why the 2nd time it wasn't there, if they didn't use the contrast medium?

Sounds like you have a full plate.  Take it one step at a time and have faith.  There are so many success stories for AN.  Many of them go untold; it's easy to hear the ones that were more troublesome.  I'm waiting for an MRI to see if I have an AN, so I'm in the learning mode as well.

[JHager]

Hey Lisa,

My son also had multiple MRI's to attempt to diagnose his seizure condition.  The first showed a 'probable' damaged area of his brain.  We were talking surgery options when the doc ordered a second, more precise MRI.  This time, nada.  So, these things do happen.

I think the gadolinium question is a good one - no contrast will probably lead to a 'no tumor' result.  Fortunately, the docs at House are phenomonal - they'll help you get it figured out.

Good luck!

Josh