mid-atlantic specialty centers

[bethtretrault]

Has anyone had experience with Johns Hopkins or Jefferson in Philly for treatment?  It would be great if there was a registry somewhere (maybe ANA could do this) where they keep track of numbers treated, types of treatment and outcomes for places that do specialize.  Another question-I live in Richmond VA area and have tried to connect but it seems there is no support group closer than Roanoke.  Anyone else in the Richmond, Va area? Just trying to gather as much info as possible before my repeat MRI on 5/20. 

[macdonalddobies]

Hello,

I currently live in Northern Virginia. I have a 3mm AN. I have been to Dr. Prasad who is based in this area, and also Dr. Francis at Johns Hopkins. The care at Hopkins is wonderful, but the wait to get in is very long and so is the drive. I go for more maintenance appointments locally, every 6 months- year MRI. It hasn't even been a year yet since it was discovered, but my dr. wants me to do the 6 month approach.

I think it is worth the initial trip to become a patient at Hopkins, so if you decide to get surgery in the future, you know you are at one of the best hospitals in the nation.

Just my opinion.


Hope you are hanging in there and well.

[bethtretrault]

Thanks.  I like the idea of being a car ride away from home versus a plane ride .  Just in case I need to do something (hoping I won't)... 

[luvzmutt]

I live in Baltimore, so Hopkins is right in my backyard.  I initially saw Dr. NiParko there, but he moved to the west coast.  I just saw Dr. Carey in April.  I really like Hopkins, they take the time to explain all questions.  I have some tinnitus and dizzy issues, and Hopkins has a vestibular disorders clinic as well.  In July I will be 4 years W&W.

[bethtretrault]

Thanks for the replies.  Would you all have surgery there if needed?

[Tod]

Beth,

I'm sorry that I am just seeing this. I am in Richmond and had my surgery and radiation at VCU. I cannot say enough good things about my surgeons and radiologist, and the neuroscience ICU staff.

Please let me know if you would like more information.

-Tod

[bethtretrault]

Thanks Tod. Do you know how many the neurosurgeon does in a year?  And how was you outcome besides the SSD?

[Tod]

Beth,

I don't know how many cases he does. I am sure he or the neurotologist can answer your questions via email, they have always been responsive to me.
 You can learn about them and get contact info:
http://www.neurosurgery.vcu.edu/people/staff/broaddus.html
http://www.vcu.edu/ent/staff/coelho.html
http://www.vcuhealth.org/Physicians/Details.aspx?sid=1&physician=862

My outcomes have been excellent. I have had some difficulties, but those were basically the result of a 32-hour surgery (14-18 hours were planned, but too much would have been left behind) because of a hard-to-reach tumor right on an artery. When my tumor was discovered, it was about the size of a golf ball and severely compressing the brain stem. I was given three to six months to address or face a coma and death.

My docs have spent as much time with me as needed to address my concerns and discuss my case. When an MRI is scheduled, the follow-up with the neurosurgeon is scheduled for an hour later, so I have no waiting around worrying about the results.

-Tod

[bethtretrault]

Thanks Tod.  I am so glad everything worked out well in the end for you. 

[bethtretrault]

Tod-Can you tell me who your surgeon was at MCV?

[Tod]

Neurosurgeon William (Bill) Broaddus
Neurotologist Dan Coelho

[WayneNB]

I submitted a reply but did not see the record so I will send again.

I'm a 2 year member at ANA.  When I was diagnosed 2 years ago I read everything and of course joined ANA.  The forum is great for references and of course I am comitted to help folks in my region with references for AN surgery. 

I had my tumor removed (micro surgery) 7-24-14 by a 1st class team at Sentara Norfolk by Eastern Virginia Medical School, Dr. Stephanie Moody Otolaryngologist/ and neurosurgeon specialist Dr. V. J. Singh. It was a fairly large team with an energetic nursing staff, therapists, and troubleshooters. The team approach is best when it comes to these unique surgeories.  My recovery was challenging but quick and I went back to work on 8-18-14.

Like you I searched many resources for specialists, opinions, optomistic reports, faced many side affects (hearing, balance, facial stiffness), questioned resources to cover the expenses, etc....  The decision was difficult for me as it is major surgery and I am the only provider for my family with young children.  As you would expect I did get three opinions: Eastern Virginia Medical School, House Ear Institute, and Johns Hopkins.  Hopkins is a first class hospital as well and I can say from experience after having out-patient heart surgery there last February that you will feel confident there too. 

You have to also consider the numerous follow ups you make.  Lucky for me I had the Sentara System and found a experienced therapist there, someone who has dealt with AN patients.  The eye and head movement excersizes did work and my recovery time after dizziness activities is short now.  By no means am I finished.

Eastern Virginia Medical School is equipped with the right team for me at the right time when I needed it. The strategy of Watch and Wait does have benefits as your brain begins the process of learning to the to live with only one good vestibular which some say reduces therapy necessary.  Things worked out brilliantly for me and I will NEVER for get what they did for me.

[bethtretrault]

Thanks Wayne.  I feel better with 2 VA options to look at.