Looking for a Doctor

[Sef64]

Hi!  I just received a diagnosis of left AN last week.  I live in Morgantown, PA which is about an hour northwest of Philly.  I see that Jefferson in Philly handles AN and a place in NJ, and Johns Hopkins.  Anyone have any recommendations of these three or another place?  The MRI results said it was 6.5cm but the neurology Physician Assistant I saw said it was 6.5mm and really down played it because of it being so small.  Definitely need a second opinion and to talk options.  Any feedback is appreciated!

[Greece Lover]

Welcome to "the club!"  Sorry you had to join us.  Goodness, 6.5 CM is very different from 6.5 MM!  Glad they revised that!
One option when looking for care centers is to search in this forum. You might find some good advice.  Another thing that many people do is send their materials to the House Clinic in California.  They do free consultations and are widely known as the best center for AN treatment in the country.  Many surgeons around the country have trained there and they probably handle more cases than any one else.  They will give you their opinion free of charge!
Generally, however, you want a place that doesn't just "handle" AN but who does a lot of them.  the more the better.  And ask about percentages in terms of their results. 
Another thing to keep in mind is that for a small tumor, a middle fossa surgical approach has the best chance of saving hearing, but there are not as many places that specialize in that since there are fewer reasons to "go in" that way.

Anyway, good luck, and let us know how you're progressing!

[MBG]

I was diagnosed in October, 2019 with a right-sided 1.2 AN and placed on "Watch & Wait". My symptoms included tinnitus, off and on feeling of fullness in my ear. No balance problems or any other issues. Audiology exam showed minimal high tone hearing loss.

My MRI 6 mos. later revealed growth and my ENT referred me to Johns Hopkins for a consult.  The Johns Hopkins team advised surgery or continue W & W but tried to discourage me from waiting as my tumor was small and could be probably removed at 100%.  I did not take the thought of a craniotomy lightly and definitely wanted to look into other options.  I think I read everything possible about different centers, coast to coast, treatments and outcomes. It is an exhausting undertaking for sure. 

I was referred to Dr. David Eisenman (neurotologist) and Dr. Graeme Woodworth (neurosurgeon who performs both open surgery as well as radiosurgery) at the University of Maryland Medical Systems by my PCP. This was the best decision I could have ever made.  I was followed with MRI's for another 24 mos. and although slow growing, my now cystic AN was 2.1. I truly was not comfortable with the idea of surgery , I knew if I wanted to go the radiation route, I needed to decide before the tumor grew to a size this would no longer be an option.  I also learned that if total resection of the tumor may damage the facial nerve, they may leave a small residual tumor behind.  In turn this will be watched and then radiated if necessary anyway. 

Dr. Woodworth recommended Gamma Knife treatment as it is the "gold standard" (as far as radiosurgery) for treating brain lesions like mine.  This procedure is not invasive and certainly removes the possbile side effects of surgery. In addition, I consulted with Dr. Dade Lunsford at UPMC for his opinion regarding GKRS for my particular tumor. After reviewing all of my MRI's, Dr. Lunsford also told me that cystic AN respond best to GKRS and he would recommend this treatment for me as well. I then consulted with Dr. Mark Mishra, the radiation oncologist at UMMS who felt very confident with this treatment for me. 

I underwent GKRS on 2/14/23 with Dr. Woodworth and Dr. Mishra.  The procedure was seamless. I am so grateful I am under their care.  Both of these doctors are extremely knowledgeable in their fields along with being very compassionate. They were thorough, took time to listen, and were always available to answer my concerns.  I also must add, they have an incredible staff.  I understand this is a very individualized decision, and it's not an easy one. I feel I did my research and I know this journey will continue with follow-ups for a long time. I could not be more pleased with these doctors handling my care. I highly recommend them!

[Sef64]

Thank you both for you responses!  I came down with covid and am finally feeling back to normal so can start investigating in more detail.

[drumfest]

MBG,  Thank you for your thorough and detailed reply about your AN journey and treatment decision.  It helps a great deal!  I've been conducting the exhaustive research now for an entire year and will probably get treatment in the coming month or two.  Your consult with Dr Lunsford and his recommendation is helpful.

Wishing you all the best post GK!  d

[v357139]

Thank you both for you responses!  I came down with covid and am finally feeling back to normal so can start investigating in more detail.

Hi there.  At 6.5MM you most likely have some time and don't need to rush.  You may be a candidate for all 3 options - 1) Wait and watch, 2) Surgery, 3) Radiosurgery.  I recommend becoming conversant with all 3 alternatives.  Then you can ask good questions at your second opinion.  As someone said, stick to doctors with LOTS of experience and a good track record.  Best of luck and let us know any questions.  PS: Feel free to PM or email me.