Author Topic: looking for information in st Louis  (Read 2168 times)

autumnrose

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looking for information in st Louis
« on: September 14, 2016, 12:20:16 pm »
I Was recently diagnosed with acoustic neuroma and my neurologist recommended dr. rivkin for me to see about my next steps. has anyone ever used this doctor or heard of him? Witch doctors in st. Louis did you use or see? I have only know for about four days and I'm trying to do my research and find the best healthcare providers to work through this with me.

UpstateNY

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Re: looking for information in st Louis
« Reply #1 on: September 14, 2016, 01:55:21 pm »
autumnrose,
I don't have any info on Dr. Rivkin, but the highest volume surgical sites in the country are the House Clinic (Drs. Slattery and Schwartz are recommended) and USC (Drs. Friedman and Giannotta are recommended) in Los Angeles, if you are willing to travel. 

For Gamma Knife, NYU (Dr. Kondziolka) and UPMC (Dr. Lunsford) are the highest volume sites.

For CyberKnife, Stanford (Dr. Chang) is the highest volume site.

All will give phone consultations to help with your decision process.
Apr 2015: Diagnosed with 8mm AN at age 49
Oct 2015: MRI showed growth to 12mm
Feb 2016: Completely removed via Transcochlear approach at House Clinic; no facial/eye issues, balance improved
Aug 2016: MRI shows no regrowth/residual tumor

My story:  http://www.anausa.org/smf/index.php?topic=22581.0

Cityview

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Re: looking for information in st Louis
« Reply #2 on: September 14, 2016, 02:36:09 pm »
Does anyone know if there is a way to gather actual numbers of surgeries and statistics by Institution? For example, how many acoustic neuroma surgeries are performed and outcomes. That would be most helpful. The surgeon in my city quoted 80 per year and Dr. Friedman quoted 200 since the opening of the USC Acoustic Neuroma Center in 2013. So that's about 66 per year if divided by three years (roughly).
Vanderbilt has quoted 58 per year right on their website.
In any event that's still a lot for all.
It would be nice to have that information readily available to the public.
This would be most helpful regardless of what state we are talking about.
Good luck on your search for doctors in the St. Louis area.
On another note, Keck has on their Facebook page new accommodations where people can stay on site after surgery. I must say, it looks quite nice.

We're still working on getting all the medical expenses covered from the last vacation to CA. :)


« Last Edit: September 14, 2016, 03:20:13 pm by Citiview »

UpstateNY

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Re: looking for information in st Louis
« Reply #3 on: September 14, 2016, 07:47:13 pm »
Citiview,
I don't believe any registries or national databases with such info exist.  Other than studies that collected various data, one would need to request such info from the facilities they were interested.  My understanding is that each facility is required by law to provide such info upon request.
Apr 2015: Diagnosed with 8mm AN at age 49
Oct 2015: MRI showed growth to 12mm
Feb 2016: Completely removed via Transcochlear approach at House Clinic; no facial/eye issues, balance improved
Aug 2016: MRI shows no regrowth/residual tumor

My story:  http://www.anausa.org/smf/index.php?topic=22581.0

Cheryl R

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Re: looking for information in st Louis
« Reply #4 on: September 17, 2016, 06:04:38 pm »
I have read over time of some people who have had drs in St Louis.          Do a search on here for some which may help.   I live in Iowa and can say that Univ of Iowa in Iowa City does do AN surgery on a frequent basis.  Dr Bruce Gantz who is my dr was saying 80 plus a year some time back.  Maybe 3 yrs ago as I haven't had to go back since then.   The biggest thing is to find a very experienced surgeon if that is the type of treatment you want.     Gantz does mid fossa and translab.                          Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

 


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