Johns Hopkins experiences???

[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.

[staypoz]

CLB, I had my AN surgery at Hopkins nearly 9 years ago.  My surgeons were Rafael Tamargo and Howard Francis, who are very, very experienced in treating ANs, something you want to look for in your treatment team.   Dr. Tamargo and other Hopkins surgeons favor the retrosigmoid approach, which seems to produce a higher incidence of post op headaches.  But your own individual circumstance will shape any surgeon's recommendations to you, and everyone's AN experience is different.    The nursing staff are absolutely top notch.  They made my recovery SO much easier.

staypoz

 

[karascott]

The doc I saw there in September; he only did 20 a year.

[jamcats]

My husband is having his removed there this week. Dr. Tamargo said he does about 60/year and has been doing it for many years. I'll let you know how it goes!

[CLB]

Thanks for the responses 

Staypoz (LOVE the name) - so glad things went so well for you....so did you have retrosigmoid? Do you have headaches?

Jamcats - thinking of & praying for your hubby - YES - please keep us informed...sounds like Johns Hopkins is state of the art - just know he'll be doing good!!!

Karascott - not sure about your feelings...appears you're no sure Johns Hopkins (or at least the particular doc you saw) is the place for you?  Care to elaborate?  Wishing you the BEST in your search for treatment

[staypoz]

CLB, yes I did have retrosigmoid.  I had a very small tumor that wasn't sticky or wrapped around anything.  I developed a CSF leak from my ear while still in the hospital, and Dr. Francis did a quick surgery to fix that.

I did develop post-op headaches, and they were pretty debilitating, but through persistence and trial and error, I found a way to deal with them.

Every person's experience is unique -- pre- and post-treatment.  After you have done all your research, whatever decisions you make regarding where you are treated and by whom, feel comfortable that they are the best decisions you can make based on the information you have and your individual circumstances. 

Good luck to you!! 

staypoz     (And being positive DOES help!)

[jamcats]

Here's a little update on my husband, as promised, 9 days post-op at Hopkins:

They got the whole tumor! It was benign! They had to cut the facial nerve because it was too involved going directly through the middle of the tumor... They were able to reattach it, and the docs give him a 50/50 chance of the nerve regenerating within the next year without intervention. The facial paralysis specialist there, Dr. Boahene, put a platinum weight in his eyelid to help it close completely, which is definitely doing it's job currently. He said we have options if the nerve does not regenerate itself.

Our experience there was good overall. Dr. Tamargo personally came to visit my husband every day he was in the hospital (except Sunday, and he assured us on Saturday that, if there were any issues, he would come in Sunday), and Dr. Chien (neurotologist) also came several times. They repeatedly reassured us that everything was going as expected, given his situation. We had the feeling that they knew their stuff and cared specifically about my husband's situation. The nurses and physical therapists were OUTSTANDING, very carefully taking care of my husband, but also thinking about the family and making sure we had what we needed to help him.

I'm happy to answer any specific questions if you want to send me a private message!