Author Topic: Doctors at Johns Hokins or in DC/Baltimore area  (Read 5871 times)

Sonja

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Doctors at Johns Hokins or in DC/Baltimore area
« on: February 21, 2007, 11:59:53 am »
Hi All:

My name is Sonja and I was informed yesterday by my ENT that my MRI showed I have AN. I have to say I am afraid but faithful that I will be fine.  Just to share my story briefly. I had sudden hearing loss over a year ago. I thought is probably wax and waited before seeking medical attention.  In October 2006 I decided to have my hearing check (not sure why, I knew I had a hearing problem). Anyway  I was informed that I did not have wax in my ear and that I had severe hearing loss. My right ear is the ear that is affected. I was referred to an ENT doctor.  My ENT wanted to rule out anything serious and ordered a MRI w/contrast. Well I finally went back to my ENT with the MRI and was diagnosed with AN and here I am.

This site has really provided me with alot of information about AN. I really appreciate the forum members and guest, thank-you. I am now in the process of locating a specialist to go over my options and have some type of procedure preformed. My ENT basically said I needed surgeory. My ENT gave me three referrals (I live in the DC metro area). The referrals are Dr. Niparko at Johns Hopkins, Dr. Kim at Georgetown and Dr. Eisenman at Univ of MD. I was hoping someone may be able to share information regarding any of these doctors and/or other doctors in the Washington DC metro area. I have made an apointment today with Dr. Niparko at John Hopkins scheduled the 6th of May.

After all the great things I have read about the House clinc and the Doctors and staff there I am considering flying out to LA. We are talking about my brain/health.

I am very concerned about life after surgeory. I am a very active/busy person and I read were someone said life after surgeory is not the same. Feedback please.

Oh, the size of my AN is unknown to me. It was not on the MRI report. I have contacted my doctors office today and requested that they inform me of the size of the AN.

Appreciate your feedback,
Sonja

Symptoms 2005
AN diagnosed January 2007
Watch & Wait until now
Surgery (Translab) scheduled February 18, 2009 HEI (Dr. House, Dr. Schwartz, Dr. Stefan)
No servicable hearing in affected ear

Dealy

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Re: Doctors at Johns Hokins or in DC/Baltimore area
« Reply #1 on: February 21, 2007, 12:18:10 pm »
Sonja- I have never heard of the doctor you are referring to at Hopkins-but I did go their last summer for FSR Radiation treatment for a 2.4CM AN on my right ear. I am now about 7.5 months out from radiation. I am also an NF2. My radiotion oncologist was Laurence Klienberg and Neuro was Dr. Daniel Rigamonti. I am from the State of Kansas and chose Hopkins because they offer FSR Radiation. Surgery would have left me totally deaf-because I had surgery on my left ear 18 years ago in Kansas City that left me deaf in that ear. Basically now the only way I can hear is if someone talks to me too the face-everything sounds like I have my head underwater. Difficult but still can hear. You never mentioned size of your tumor. Radiation is available for those under 3.0 CM. Hopkins offers a 25 session protocol but the minimum is 5 days or one week depending on size and hearing etc. I never talked too anyone that did Surgery at Hopkins because that option was out. We stayed with my wife's cousin in Odenton, Maryland for almost 7 weeks while I was being treated. We have another one on this site-uses handle of Windsong that also had radiation at Hopkins. This is a good site for info. so keep in touch with this group and weigh all your options. Hopes for the Best-Ron

HeadCase2

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Re: Doctors at Johns Hokins or in DC/Baltimore area
« Reply #2 on: February 21, 2007, 12:46:52 pm »
Sonja,
  Welcome to the site, but obviously we're sorry about your diagnosis of AN.  Look around the forum posting, you'll find lots of information.  You can also do keyword searches for topics of interest.
  I can't comment from direct experience on the Doctors at John Hopkins, but you're headed in the right direction.  It's important to be treated and or monitored by a Doctor with a lot of experience treating Accoustic Neuroma. There seems to be a relationship between how experienced the treatment team is and obtaining the best outcome for your situation.  This usually means that you should go to a regional tertiary teaching hospital.  The top specialists are to be found at these institutions, along with other speciaists that need to be called in along the way.  John Hopkins certainly qualifies as a top hospital.  John Hopkins is one of the hospitals set up after WWI, when federal officials realized that (at that time) european doctors and treatments were better in Europe.  By the time WWII came along, the US was recognized as having medical resources equal to or better than Europe.
  You  have probably already found out the three options; radiation, surgery, or watch and wait.  If your're considering radiation, or wish to also consult with a radition specialist in treating AN, UVA (Dr. Steiner) is withing reach from the DC area.  Dr. Steiner was involved with the development of the Gamma Knife, and is considered an expert amoung his peers.
  I'm sure you get some other names from others.  Please feel free to ask anything you want.  Most if not all the posters on this forum are AN patients, and know what it's like.
Regards,
 Rob
« Last Edit: February 21, 2007, 12:48:47 pm by HeadCase2 »
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

krbonner

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Re: Doctors at Johns Hokins or in DC/Baltimore area
« Reply #3 on: February 21, 2007, 01:15:26 pm »
After all the great things I have read about the House clinc and the Doctors and staff there I am considering flying out to LA. We are talking about my brain/health.

I am very concerned about life after surgeory. I am a very active/busy person and I read were someone said life after surgeory is not the same. Feedback please.

First, if you're interested in a consult from House, get copies of your MRI and the report.  You can send them to the doctors at House and they'll do a free phone consult with you so you can get their opinion, too.  While I realize you don't yet know the size of your AN (though if your only symptom is hearing loss it's probably not large), please take the time to research all your treatment options (radiation, surgery, watch-and-wait).  If you do the research and settle on a path that's right for you, then you'll feel a lot better about everything.

Personally, I'm now 5 months out from surgery.  The first 4-6 weeks were tiring, but I'm fine now.  Yes, I'm deaf on one side but I essentially was pre-op anyway.  It hasn't been all that difficult for me to adjust to.  And my life is not sedate - I stay home with my two little boys (my youngest turns 2 tomorrow!  Sniff!) and we're always running around doing stuff.  No one who sees me has any clue I had surgery.   I realize not everyone is as lucky as I am with the outcome, and no one can guarantee a particular outcome *for you*.  But surgery is not a mandatory life-altering sentence.  If you do decide to go the surgical path, just find surgeons who have done hundreds of AN surgeries - it's rare enough that you don't want to trust your skull to someone who doesn't have a lot of experience.

Good luck!
Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

Sonja

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Re: Doctors at Johns Hokins or in DC/Baltimore area
« Reply #4 on: February 23, 2007, 01:19:38 am »
Thanks for the feedback Rob, Ron and Katie. I will keep you posted. I am happy to hear things went well for you Katie. It sounds like things went well for you too Ron and Rob.
Symptoms 2005
AN diagnosed January 2007
Watch & Wait until now
Surgery (Translab) scheduled February 18, 2009 HEI (Dr. House, Dr. Schwartz, Dr. Stefan)
No servicable hearing in affected ear

staypoz

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Re: Doctors at Johns Hokins or in DC/Baltimore area
« Reply #5 on: March 10, 2007, 10:28:26 am »
Hello, Sonja.  I live in the DC area and had my surgery at Hopkins.  My surgeons were Tamargo and Francis.  My ENT referred me to House, Hopkins and UVA, but I chose Hopkins b/c I wanted to be close to home.

I believe Dr. Niparko spoke to the DC ANA group meeting a couple of years ago and I know several of the members have at least had consults with him. You should consider coming to one of the upcoming meetings.  The last meeting was in February, and the group meets quarterly.  I find it very helpful.

staypoz

River Rat

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Re: Doctors at Johns Hokins or in DC/Baltimore area
« Reply #6 on: March 12, 2007, 04:50:35 am »
Hi stayppoz,

I live in the DC area.  How does one get connected with the dc area an group?  I would find going to a meeting very helpful--it would have been especially helpful to have gone in February, soon after my diagnosis.   Could you send a contact name or number?

Thanks,

River Rat :)

vjw1218

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Re: Doctors at Johns Hokins or in DC/Baltimore area
« Reply #7 on: March 16, 2007, 01:43:43 pm »
The referrals are Dr. Niparko at Johns Hopkins, Dr. Kim at Georgetown and Dr. Eisenman at Univ of MD.

I can tell you that I had my first visit with Dr. Eisenman this week and he's absolutely wonderful. He spent over an hour explaining my particular case of AN and the treatments availalble. He did not pressure me to use one over the other and my family and I felt very confident with him.

In fact, when my ENT referred me to him originally, he told me that he would send his wife and children to Dr. Eisenman because he's that good. We considered that high praise.

Dr. Eisenman was instrumental in inventing the cochlear implant as well.

I urge you to look up all the bios you can find on each physician you're interested in.

http://www.umm.edu/otolaryngology/about_doctors.html#eisenman


littlejep

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Re: Doctors at Johns Hokins or in DC/Baltimore area
« Reply #8 on: April 12, 2007, 05:40:53 am »
Hi Sonja,

   I too went through pretty much the same path to finding out that I had an Acoustic Neuroma or Schwannoma in my right ear. I had noticed some hearing loss about four years ago from a hearing test at an ENT's office. Then two years ago, having a hard time hearing people talking on the phone, I went back to my ENT, had another hearing test, and the comparison of the two tests made him suspicious. I had an MRI done and his hunch was right! He referrred me to two wonderful surgeons at John Hopkins Medical Center,( I'm from around the Harrisburg, PA. area), Drs. Lloyd Minor(otolarynologist) and Rafael Tamargo (head neurosurgeon who specializes in this type of procedure), both are excellent doctors! Down there I underwent another hearing test and a test where the technician shoots water into your ears to measure density or something. My tumor was benign and about the size of a thumbnail. i was told about microsurgery and the Gamma knife procedures from which to choose. Best advice is to browse through the John Hopkins website and read everything about Acoustic Neuromas (quite helpful!), then look up the background and credentials of the doctors you will be dealing with. After much research and asking lots of questions, I decided to have the microsurgery because for me I felt the risk factors were more manageable and the success rate more to my liking. The Radiation (Gamma Knife) surgery, I was told, is newer than Microsurgery, but if the entire tumor is not gone, it could return as malignant. With micro, the tumor is totally removed, but you may or may not lose your hearing permanently. There are known cases where the balance/hearing nerve has regenerated itself and hearing restored. Your balance will be affected, but the other ear and your brain will compensate for the loss and restore balance again over time.   Will say more later.     Frank

Monica

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Re: Doctors at Johns Hokins or in DC/Baltimore area
« Reply #9 on: April 12, 2007, 03:45:45 pm »
Sonja,
Maybe you have decided what to do by now but I thought I'd write just in case. I had a 2.5cm AN removed three years ago at Hopkins. Dr. Holliday was my ENT surgeon and Dr. Alessandro Olivi was the neuro surgeon.  I had great sucess. Yes, I lost the hearing in my right ear but I've learned to compensate. Balance issues were there at the beginning but I did the exercises they gave me at check-out and did a few weeks of PT after the first 4 weeks and I have been fine. Your brain retrains your body to compensate. My only advise is to turn corners slowly at first! Post op MRIs show all is well.  I was in Hopkins for 3 nights and then home for 6 weeks before returning full time to work.  If I can be of further help, let me know.  Take care - Monica

 


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