Author Topic: New patient looking at House, USC and Vanderbilt.  (Read 8252 times)

davidhansen

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New patient looking at House, USC and Vanderbilt.
« on: April 14, 2016, 01:56:09 pm »
I live in Birmingham, Alabama and 53 years old. Recently told that I have tumor. Sounds small compared to others that I have read about 7mm x 3mm.

Thanks for everyone's input on this forum. Very helpful. Vanderbilt appears to have best reputation near me. House and USC have lots of experience and my local neurosurgeon said to go somewhere with experience vs treating every once in a while and where have options vs what specialize in.

I have sent medical records to Vanderbilt and waiting and waiting on reply and now sending MRIs to House and USC. It was nice that USC actually had someone answer the phone and answer questions.
USC said Dr. Friedman would call back for phone consultation.

Any input would be appreciated. Thanks

CHD63

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Re: New patient looking at House, USC and Vanderbilt.
« Reply #1 on: April 15, 2016, 05:36:20 am »
Hi davidhansen and welcome to this forum .....

It sounds like you are doing all the right things to research your options before making a decision.

Your AN is very small so you should have plenty of time to look at several possibilities for treatment, including watching and waiting (unless your symptoms are affecting your life in a significant way).  Have you considered radiation treatment?

If you have not already done so, I would urge you to send for the free informational materials from the ANA.  See:  https://www.anausa.org/component/rsform/form/20-ana-contact-us-copy  These materials contain a wealth of accurate, reassuring information.

Thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

mac84

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Re: New patient looking at House, USC and Vanderbilt.
« Reply #2 on: April 15, 2016, 07:54:47 am »
David, I'm in Prattville and have been going to Vandy since 10/14 when I was diagnosed. In fact, I have my 1 year MRI on Monday. Last April mine was at around 11mm. We'll see what has happened in a year.

I've been seeing Dr. Alejandro Rivas there at Vanderbilt at the Skull Base center and I've been very pleased with him. I'd also request to see Dr. Reid Thompson (I've seen him as well). Both men are very good and seem to have a command of the issues. 

I'm 50 yrs old and my tumor (so far) is small enough that Gamma Knife is an option for me. I'm 90% in that camp so if I need to have it done will likely go to UPMC and have that done by Dr. Lunsford.

I'm happy to talk w/ you about my experience at Vandy and my symptoms so please PM me if you'd like. Good luck! You're in the right place for info and support.
Cary
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth! MRI 2 yrs
4/20: No growth! Symptoms stable- MRI 2 yrs

michellef08

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Re: New patient looking at House, USC and Vanderbilt.
« Reply #3 on: April 15, 2016, 08:32:08 am »
Hi David,
I had both Dr. Schwartz and Dr. Friedman (back when he was still at House) with great results! They preserved my hearing, and I didn't have a single facial or balance issue. Glad you have sent your MRIs to both places for consults!
Diagnosed Dec 2012: AN right side 1.4 cm with mild hearing loss and tinnitus. Surgery: Middle Fossa at House with Schwartz/Friedman on April 10, 2013. Entire tumor removed, no facial issues, no balance issues, and they preserved my hearing!!

davidhansen

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Re: New patient looking at House, USC and Vanderbilt.
« Reply #4 on: April 15, 2016, 09:04:13 am »
Thanks for the feedback.  My main concern even though small tumor is how much my hearing has gone down the last couple of months and the ringing. Feedback noise really painful as well.  Do not want to get worse than already is which has me thinking not to wait.  Really makes me feel for those of you with larger tumors. 

Thanks

GaryWNT

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Re: New patient looking at House, USC and Vanderbilt.
« Reply #5 on: April 15, 2016, 07:26:54 pm »
David,
Good luck with your research and decision! You are consulting with a very strong group of medical centers. I might suggest that you also contact Dr. Chang at Stanford. He won't do a phone consultation, but if you send him the MRI, he'll review it and contact you via email. That's the route I chose.

It's interesting that the size of the tumor doesn't always correlate with an increase in symptoms. My tumor is/was moderate in size, larger than yours, but I have very minor symptoms compared to others. I think it has more to do with where the tumor is located with regard to symptoms.

In any case, good luck as you make important decisions about treatment!
Gary
Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016

alabamajane

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Re: New patient looking at House, USC and Vanderbilt.
« Reply #6 on: April 16, 2016, 09:37:43 am »
David,
Sorry to hear of your diagnosis,, all of us on here have been where you are currently.

I just wanted to mention UAB has a very good team also if you are at all interested in staying local. I had my surgery preformed there in 2011 and personally know of three others who recently have had successful surgeries preformed there. I don't know about radiation though as I did not prefer that option and did not research it.

Just wanted to mention it as you did not say who your neuro is up that way. Another option.

Good luck,, you have many options with a small tumor.

Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

NEbluebells

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Re: New patient looking at House, USC and Vanderbilt.
« Reply #7 on: April 16, 2016, 10:09:25 am »
David, I'm sorry you are going through this.  I am scheduled at the House clinic for 12 May.  I consulted with scores of doctors/interns/fellows and although I had already scheduled the surgery at House before speaking to Dr. Schwartz, I will tell you that, hands down, he was the nicest, calmest and easiest to talk to doctor that I had spoke to since I was diagnosed. I felt the best when talking to him and I have near calm in my soul about this whole thing for the first time since diagnosis.

Also, I wanted to add that you mention that USC has a person you can talk to right away, but you didn't mention that is an option at House, too. So I wasn't sure if you knew they too have that at House - here is the page: https://www.houseclinic.com/consultation/acousticneuroma 

The number is (213) 483-9930 and a wonderful and kind person will talk to you - I think it's rotated by the various surgical team's admin staff, so depending on what day you call, you will get a different POC from a different team. I also found this incredibly nice/kind to talk to an understanding person.  I wasn't interested in USC, (I have a closer option at a university hospital in IA, that I had a consultation with) so I didn't call USC, so I can't compare my experience to USC's support staff.

Good luck in your decision, I will say that I feel a lot better emotionally than when I was first diagnosed, so I hope time will also make you feel better about the diagnosis - it sure is a shock when you first get it.
2.2 x 1.9 x 0.9 AN diagnosed Mar 16
No sense in being pessimistic, it won't work anyway ;)
Translab at House May 16 - Couldn't have asked for better results!

davidhansen

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Re: New patient looking at House, USC and Vanderbilt.
« Reply #8 on: April 16, 2016, 06:21:19 pm »
Thanks to everyone for their comments.

UpstateNY

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Re: New patient looking at House, USC and Vanderbilt.
« Reply #9 on: April 23, 2016, 01:29:28 pm »
The best advice I received was to go to a facility with much AN experience and considered a Center of Excellence, just as you are doing.  The surgical issues that can be run into may differ with each case and you really want a surgeon who has seen most of them and knows how to handle unexpected situations.

I live in Upstate NY, and after much research and interviews flew across the country to the House Clinic in Los Angeles.  Please be aware that there are typically two surgeons involved, a neurotologist and neurosurgeon.  The former performs the opening/closing as Dr. Friedman does, and the latter performs the tumor dissection and removal.  I made sure to speak with each neurosurgeon and understand their results.  For example, Dr. Schwartz, my neurosurgeon at the House, performs over 100 AN removals/year and removed over 1000 in the past 8.  He is also still in his prime (~50 years old).  The neurosurgeons in my local area didn't even come close to this number.

Good luck with your decision process.
« Last Edit: April 23, 2016, 01:46:59 pm by UpstateNY »
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

Mei Mei

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Re: New patient looking at House, USC and Vanderbilt.
« Reply #10 on: April 29, 2016, 06:59:31 pm »
Thanks for the feedback.  My main concern even though small tumor is how much my hearing has gone down the last couple of months and the ringing. Feedback noise really painful as well.  Do not want to get worse than already is which has me thinking not to wait.  Really makes me feel for those of you with larger tumors. 

Thanks

I remember when I was attending the Symposium in Cincinnati in 2011, Dr. Kondziolka said:   For those of you on the Watch and Wait List:   What are you waiting for?   He was then at U of Pittsburgh and now at NYU and I always regret not going to him but by that time, I had already had the large surgery that was so damaging to me.   I'm not saying that radiation is problem free but with the small tumor you have more choices.    You also do lose hearing with radiation and need to be prepared for that in any scenario.   Given all the other things that went wrong with me, losing my hearing was the least of my problems.
Gentle Hugs,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

mcrue

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Re: New patient looking at House, USC and Vanderbilt.
« Reply #11 on: April 29, 2016, 09:10:04 pm »
Thanks for the feedback.  My main concern even though small tumor is how much my hearing has gone down the last couple of months and the ringing. Feedback noise really painful as well.  Do not want to get worse than already is which has me thinking not to wait.  Really makes me feel for those of you with larger tumors. 

Thanks

I remember when I was attending the Symposium in Cincinnati in 2011, Dr. Kondziolka said:   For those of you on the Watch and Wait List:   What are you waiting for?   He was then at U of Pittsburgh and now at NYU and I always regret not going to him but by that time, I had already had the large surgery that was so damaging to me.   I'm not saying that radiation is problem free but with the small tumor you have more choices.    You also do lose hearing with radiation and need to be prepared for that in any scenario.   Given all the other things that went wrong with me, losing my hearing was the least of my problems.
Gentle Hugs,
Mei Mei


Eloquently stated Mei Mei.

My heart goes out to you. Dr. Schwartz from the House Clinic even told me I would likely lose all my hearing within 10-years if I continued Watch & Wait (for my individual case).  Having open brain surgery isn't a simple colonoscopy procedure. There are lots of risks involved. While everyone is optimistic at the forefront, it's not always the case at the end of the day. The risk should never be sugar-coated or minimized.

Warm regards.
« Last Edit: April 29, 2016, 09:12:26 pm by mcrue »
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

Blw

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Re: New patient looking at House, USC and Vanderbilt.
« Reply #12 on: July 02, 2016, 10:11:31 pm »
McCrue, how are you making out? I will be getting my 6 month MRI this month sometime. Half an hour rolled up in a carpet. Not looking forward to that.

mcrue

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Re: New patient looking at House, USC and Vanderbilt.
« Reply #13 on: July 03, 2016, 07:42:19 pm »
McCrue, how are you making out? I will be getting my 6 month MRI this month sometime. Half an hour rolled up in a carpet. Not looking forward to that.

Thanks for your concern BLW. I have my first follow-up MRI scheduled for July 15th. Then I need to mail the CD to Dr. Sheehan.

I will likely have the results around August 1st.

BLW, I wish you well with your upcoming MRI and eagerly anticipate successful results. It's good we both got our AN's treated when they were still relatively on the smaller side. 

Happy Independence Day! I found Dr .Sheehan because of you and this forum :)
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

Blw

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Re: New patient looking at House, USC and Vanderbilt.
« Reply #14 on: July 04, 2016, 10:11:36 pm »
Good luck I'll let you know how mine goes.

 


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