Johns Hopkins - experiences there for AN treatment - your experience?

[CLB]

Seeking opinions/experiences at Johns Hopkins, Baltimore for surgically removing ANs - got one measuring 22mm by 11mm pressing on brainstem - Proton Beam Radiation Therapy has been ruled out.  Not sure where to go/what to do....researching Johns Hopkins...any input is SO much appreciated.

[kmr1969]

Hi CLB,

I live in Maryland and work in Baltimore, so I am very familiar with JHU.  In fact, after I got my initial AN diagnosis from my ENT, he scheduled an appt for me at JHU with Dr. Howard Francis and Dr. Jon Weingart.  I liked them both very much.

I also met with Dr. Howard Eisenberg, a neurosurgeon, and Dr. Young Kwok, a radiation oncologist at the University of Maryland System, also in Baltimore.  Dr. Kwok was my last appointment to consider GK, and when he discouraged me from going that way even though it was his specialty, I knew traditional surgery was in my future. 

Ultimately, I choose to go to House Clinic in LA just because of the experience.  Not that any of the MD doctors weren't experienced, it was just that the number of surgeries being performed by the doctors at House were much greater than anywhere else.

I'd recommend that you 'interview' several surgeons before making a decision on where to go.  I know of one gentleman who had a very successful outcome at JHU several years ago.  He 'interviewed' every single one of the surgeons before choosing which one would do his operation.  You can also send your MRI to House Clinic for a free consultation. 

Best wishes to you.  You will get through this, but take the time to find the team that you feel will give you the best opportunity for a great outcome.  If I can help just send me a private message.

Ken

[CLB]

Hi Ken,

Thanks SO much for responding....I've been "looking at" House clinic as well...agree - they appear Top Notch!  May I ask who you're consulting with there? I have been communicating with Dr. Slattery...

Referring to the gentleman that interviewed "every surgeon at JHU", and had a successful outcome - do you know which doctor(s) he selected?

I have "support" closer to JHU than anywhere else so am hoping to feel confident with going there.

Thanks and best of luck for you in all this....crazy - huh?

CLB

[kmr1969]

I dealt with Dr. Brackmann when dealing with House.  I must admit I was surprised and relieved that he called me back.  I sent my MRI to his attention, never really expecting to hear from him, but he was the doctor who called me.  He worked with Dr. Schwartz for my surgery.  They are top notch out there and I am glad I made the decision to go there, although it did involve some extra expenses and extra stress from leaving two young teen sons at home.

The gentleman who interviewed all of the doctors at Hopkins ended up picking Tamarjko (not sure I spelled that correctly).  My ENT strongly recommended Dr. Francis who is a neurotologist and he, Dr. Francis, wanted to work with Dr. Weingart.  In his words he set up my appt with Dr. Weingart because "he wants his patients to have the best possible outcome."

It is a mess when you are dealing with all of this craziness.  It is a real gut check.  If you have made your decision to do surgery, then you are half way there.  Now, all you need to do is pick where to go and who will be your doctors.

Hang in there CLB...here to help if I can.

Ken

[CLB]

Thanks Ken - you've been most helpful!!!! Good luck to you 

[Mei Mei]

I had a very bad outcome at JHU and encourage you to go to House.
Gentle Hugs,
Mei Mei