Author Topic: Been a while, but I'm back. Am I doing enough?  (Read 2744 times)

anothereveryman

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Been a while, but I'm back. Am I doing enough?
« on: May 07, 2014, 11:40:57 am »
I had my followup MRI a little over a year after the first one. The first one, to summarize, mentioned an intracochlear schwannoma as the cause of my deafness on my left side. I had no insurance at the time so I relief on a mail-in diagnosis from Dr. Slatterly at House Clinic to confirm things.

The followup MRI showed signs of a second "enhancement" this time in the vestibular region. That terrified me, from the moment the MRI technicians mentioned "taking a few extra pictures" to the doctor handling the case telling me to go to the hospital immediately if I had facial weakness or difficulty walking.

The ENT I saw locally said, rather rudely, to do nothing and to not worry about it, after all that concern before that from other people. I mailed a second copy of the MRI to the House Clinic, and was told far more politely to "wait and see". I was also told that because the first tumor "stabilized" and didn't seem to get larger that this is a good sign, even with the second growth in the vestibular region.

I'm frightened because in recent weeks I've had noticably more difficulty walking or maintaining balance. I CAN walk, but it's roughly as stable as that dizzy sensation one gets after a few drinks. Standing on one foot is very difficult, moreso than before, and even though I've had both the clinic and that ENT say to wait and see and wait another year for another MRI, I wonder if I should do more, ask more questions, somehow do something more about this.

I have medi-cal and medicare coverage through disability, for this and unrelated reasons as well. I have posted here before but it's been a while. I suppose I just needed to express my fears and ask people who have been here what I should do.

john1455

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Re: Been a while, but I'm back. Am I doing enough?
« Reply #1 on: May 16, 2014, 08:40:29 pm »
Yes, there is more you can do and it will probably not cost you a cent - get more professional opinions. The technical term for your balance issues is called "disequilibrium" and it is a common symptom of ANs. Dr Steven Chang at Stanford has been known to give free reviews of scans mailed to him as well as free telephone consults. Dr Chang does both open surgery and stereotactic radiosurgery (specifically CyberKnife) so it will be likely that you will receive unbiased information.

Dr Clinton Medberry III answers AN questions at http://www.cyberknife.com/Forum.aspx?g=topics&f=2572 and also provides free scan reviews. Here are some very helpful websites to check out if you haven't already:

http://stanfordhospital.org/clinicsmedServices/COE/cyberknife/
http://www.myacoustic.org/
http://www.youtube.com/watch?v=ZbS4K9ENMAg

It would be in your best interest to seek advice from professionals or facilities that do both surgery and radiation to avoid getting biased information.
Diagnosed with 19x16x19mm cystic AN right side on 7/2013
MRI on 3/2014 showed AN increased to 21x20mm
right side 70% hearing loss, tinnitus, balance issues
CK at Stanford completed 3/21/2014 (3 sessions)
Dr Steven Chang and Dr Iris Gibbs