Author Topic: New to this ...  (Read 7729 times)

leigh26

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New to this ...
« on: May 19, 2016, 05:15:37 pm »
I was diagnosed in March and have been slow to consult with anyone. I have an appointment at Vanderbilt at the end of June, but I am super intrigued by the positive comments about the House Clinic in LA. My AN is 2 cm but as far as I know, my only symptom is this infernal ringing in my right ear. I have an appointment with a local ENT to check on my hearing next week. My AN was found accidentally, so when my doctor called and said "brain tumor," it brought on a bit of a panic. Now that I have calmed down, I just want advice about whom to trust with this.  Any insight you can give about where to go next would be appreciated. I am a super private person so the teaching hospital thing freaks me out a bit. Also, anyone with a 2cm just watching and waiting? My thought is to see what this tumor is doing before I make any decisions, especially since I do not have any symptoms yet. I am a newbie and a nervous one, so advice is most welcome. Most of you have been walking this road much longer and I am happy to hear your counsel!

mac84

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Re: New to this ...
« Reply #1 on: May 20, 2016, 06:30:20 am »
Leigh,

I've been traveling to Vandy since Oct 2014 to see about my 1.46cm AN and couldn't be more pleased. The teaching hospital part has never come into play at all....The people at the Bill Wilkerson center and great. I see Dr. Rivas and I think you'll like him as well. My only symptoms are the tinnitus and the loss of high frequency in that ear.  I'll go back in 1 yr unless something changes to make me see about it, but hoping to stay on the watch and wait.

Hang in there!
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 to this ...
« Reply #2 on: May 20, 2016, 08:46:34 am »
Hi Leigh,
I highly recommend sending your MRI for a free phone consult with House! They also do free phone consults at USC-Keck, so I would recommend getting their opinion as well! I had my surgery done at House with Dr. Schwartz and Dr. Friedman (back when he was still at House) 3 years ago with amazing results! I think once you start discussing your individual tumor (size, location, symptoms, age, risks etc) with neurosurgeons - you will feel less nervous. The more informed you are, the more you will feel in control and able to make an educated decision on your treatment plan. You may still want to watch and wait, but I think that only wise after you speak with multiple experienced surgeons. 2 cm is getting up towards the medium range for the tumor. Good luck! Remember, we have all been in your shoes!
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!!

v357139

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Re: New to this ...
« Reply #3 on: August 09, 2016, 08:11:55 pm »
Leigh,
I can personally attest to House being a great option.  They did a wonderful job on my 3.5cm.  Traveling was not a major issue at all.  I would definitely do it again.  If you are interested in the best, they are definitely one of the places to look at.
Rich
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

mandihester

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Re: New to this ...
« Reply #4 on: August 18, 2016, 08:13:46 am »
I was wondering about the process of finding a surgical team outside of the state you live in.  I am very new to this as well....just got my tumor diagnosis last week but see a neurosurgeon next Monday (Aug 22) in Macon, GA.  I'm also trying to get an appointment at Emory in Atlanta.  Financially, how expensive is it to travel to these other places? 
I am definitely wanting to see someone with experience in AN's because I want the best possible outcome.  At the same time, money is an issue outside of insurance which in itself is an issue as well! Any guidance is much appreciated!

AN right side found August 2016- grape size
Retrosigmoid microsurgery October 2016
Before surgery- minor hearing loss, major balance and dizziness issues.
After surgery- severe hearing loss (it fluctuates), no dizziness, minor balance issues

mac84

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Re: New to this ...
« Reply #5 on: August 18, 2016, 01:57:55 pm »
Mandihester,

I'm in Central AL but traveled to Vanderbilt when I was first diagnosed in 2014. I am on a 12 month Watch/Wait schedule and I have my MRI and hearing test there every April. It's about 4 hrs for me each way but well worth it because of the experience they have. I usually have my MRI in the afternoon and then stay at an Airbnb overnight w/ hearing test and Dr visit the next morning before heading back. My wife goes with me so that's a little getaway for us (as odd as that sounds!  :))

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

ANGuy

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Re: New to this ...
« Reply #6 on: August 18, 2016, 02:49:42 pm »
I was wondering about the process of finding a surgical team outside of the state you live in.  I am very new to this as well....just got my tumor diagnosis last week but see a neurosurgeon next Monday (Aug 22) in Macon, GA.  I'm also trying to get an appointment at Emory in Atlanta.  Financially, how expensive is it to travel to these other places? 
I am definitely wanting to see someone with experience in AN's because I want the best possible outcome.  At the same time, money is an issue outside of insurance which in itself is an issue as well! Any guidance is much appreciated!

Don't feel compelled to travel just for the sake of travel.  And don't get too caught up in the supposed numbers of AN surgeries some claim, or at least get thrown around on here from time to time.

You do want to deal with a facility, and personnel that specialize in skull base surgery or radiation, but just because Vanderbuilt or House require travel, doesn't mean that they are superior to Emory.  They may be, or not, but not because they are out of state.

I live 1.5 hours from Duke.  If Duke is local for me, does that somehow make it inferior?  If you traveled hours to Duke, would that make it superior? 

I have a buddy who is now retired, but was considered one of "THE GUYS" when it came to facial reconstruction and nerve repair etc.  He is world class.  He spent much of his career in Buffalo, NY!  He was laughing about it when I asked him about travel for treatment because nobody in Buffalo thought that a competent, let alone renowned expert, surgeon would be in Buffalo, yet he was one of the guys that oil sheiks etc would travel half way across the globe to be a patient of.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

UpstateNY

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Re: New to this ...
« Reply #7 on: August 18, 2016, 10:54:43 pm »
I would agree with many of the posts above.  Go to the highest volume Center of Excellence you can.  For microsurgery that would be the House Clinic and USC.  The same goes for UPMC and NYU for Gamma Knife and Stanford for Cyber Knife.  One may have good results elsewhere, but why risk it if you have such options available. 

All give phone consultations, so the only time you would need to travel would be for the treatment.  There are many modes of travel, so the cost can vary.  If I was in a financial bind, I would even consider signing up for a credit card that offered free airline travel if that is what I needed to do for the best treatment.

In the end, you need to decide what works best for yourself and you are comfortable with.
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

mandihester

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Re: New to this ...
« Reply #8 on: August 19, 2016, 06:31:38 am »
Thank you all for the feedback.  It's just overwhelming at this time and I tend to get ahead of myself.  I'll see what the neurosurgeon says in Macon next week and keep my fingers crossed that Emory will call.  I'd feel comfortable at Emory for sure. 
AN right side found August 2016- grape size
Retrosigmoid microsurgery October 2016
Before surgery- minor hearing loss, major balance and dizziness issues.
After surgery- severe hearing loss (it fluctuates), no dizziness, minor balance issues

mcrue

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Re: New to this ...
« Reply #9 on: August 19, 2016, 11:16:33 pm »
I would agree with many of the posts above.  Go to the highest volume Center of Excellence you can.  For microsurgery that would be the House Clinic and USC.  The same goes for UPMC and NYU for Gamma Knife and Stanford for Cyber Knife.  One may have good results elsewhere, but why risk it if you have such options available. 

All give phone consultations, so the only time you would need to travel would be for the treatment.  There are many modes of travel, so the cost can vary.  If I was in a financial bind, I would even consider signing up for a credit card that offered free airline travel if that is what I needed to do for the best treatment.

In the end, you need to decide what works best for yourself and you are comfortable with.


Exactly.

Dr. Lunsford - Gamma Knife at UPMC Pittsburgh, PA
Dr. Chang - Cyber Knife at Stanford, CA
Dr. Kondziolka - New Jersey, Manhattan, New York
Dr. Sheehan - Univ. Virginia - Gamma Knife - UVA
Dr. Schwartz - House Ear Clinic -  Los Angeles, CA
Dr. Friedman - Keck Univ- California
Stephen Tatter and Michael Chan - Wake Forest University North Carolina - Gamma Knife
Clinton A. Medbery, III, M.D. Southwest Radiation Oncology - Oklahoma

And perhaps your local Gamma Knife and Cyber Knife specialists
« Last Edit: August 19, 2016, 11:36:19 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

v357139

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Re: New to this ...
« Reply #10 on: September 02, 2016, 07:21:49 pm »
I did travel but I agree its not about travel.  It's about finding a team with extensive experience and a great track record.  Make sure you ask about their experience, like how many they have done, and how many they do per year.  If they have done a lot, you should be able to find out about some of the patients who they treated, and their results.  Experience and track record is the key.

If Emory does not call you back, then keep calling them.  It pays to be assertive on this one.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

mandihester

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Re: New to this ...
« Reply #11 on: September 06, 2016, 06:33:19 am »
I had my appointment at Emory this past Friday.  I met with their AN neurosurgeon and also was able to see the radiation oncologist so I could get info about the surgical and radiation option.  I'm a "good" candidate for both.  Now just to decide whether I want to be deaf in one ear (surgery- translab- will inquire about retrosigmoid) or dizzy forever (radiation). 
I must say I was taken aback by becoming deaf because while I do have hearing loss on my right side, I don't really notice it.  The surgeon also thinks radiation will leave me deaf, although more gradual.  They also said radiation will likely make my dizziness worse.  Do you all find that to be true??
AN right side found August 2016- grape size
Retrosigmoid microsurgery October 2016
Before surgery- minor hearing loss, major balance and dizziness issues.
After surgery- severe hearing loss (it fluctuates), no dizziness, minor balance issues

v357139

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Re: New to this ...
« Reply #12 on: September 09, 2016, 06:55:30 pm »
Like most of us, I am deaf on one side.  A very minor thing in my opinion.  I hardly miss it. 

Radiation will not make you dizzy forever, as far as I know.  Sometimes the tumor does swell after radiation, and this can cause various symptoms.  But from what I have seen on this site, those symptoms do usually resolve over time.  One big thing you might want to consider.  With radiation, you avoid traditional surgery which is a big thing no doubt.  But with radiation, it can take up to two or three years to know if it really worked.  I would imagine that would be a good thing to consider, if you are up for waiting those two/three years to know.  A lot of people do it and it is a very viable alternative.  You might want to research the two procedures a bit more, so you can make a good informed decision.  Let us know if you need help.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

mcrue

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Re: New to this ...
« Reply #13 on: September 10, 2016, 10:40:49 pm »
Like most of us, I am deaf on one side.  A very minor thing in my opinion.  I hardly miss it. 


I miss it a lot!!
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

Noni1968

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Re: New to this ...
« Reply #14 on: September 10, 2016, 11:51:34 pm »
Hi!! My name is Donaji and I live in the state of Washington. I was diagnosed with ANA about a month ago. Mine is 8mm but I am very symptomatic. I have fullness, ringing and pain in my R ear. My balance is awful, sometimes when I walk I start going sideways. About 6 months ago I started having unusual headaches that just don't go away. I do have an appointment to see a Neurotologist in 2 weeks. I am a nurse so I need to get better, I cannot continue to feel dizzy. I am just afraid because I heard that if the ANA is this small they don't do anything about them, they just watch. Need advice.

 


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