Author Topic: Newbie here - trying to decide on treatment - worried about surgical recovery  (Read 5860 times)

CGL

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Hi -  I'm 45 and was diagnosed with AN a couple of weeks ago, about 9.7mm in its longest dimension.  My symptoms are disequilibrium (started out as vertigo a couple of months ago), muffled hearing, fullness of ear and tinnitus.  I am trying to decide between middle fossa surgery and GK.  I would like to preserve my hearing, if possible, but I am very worried about the surgical recovery time.  I am a lawyer with two school aged kids and the idea of months of exhaustion seems impossible to manage.

On the other hand, I am concerned that even if my hearing is preserved with GK, it will go away eventually (is this what I should expect?).

I'm trying to make a decision not based on the BEST outcome I can expect, but on the "medium" outcome. 

Any advice from seasoned folks out there?

Thanks,
Cindy

kmr1969

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Cindy,

The size of your tumor should make you a good candidate for either radiosurgery or microsurgery. 

That is a good thing, although it does put you in the quandary that many on this site have faced - which approach is best for me?

Both options are good, but as I am sure you are already aware, both offer different potential risks and rewards.

The only advice I can give is to take your time, get the "Willing to Talk" list from the ANA and contact some people in your area of the country who are willing to talk about their experiences, and then speak to some of the doctors that these people recommend.

I'm sure you are eager to make a decision and move forward, but don't rush your decision making process.  In lawyer terms, this is a one-time, irrevocable decision and you want to make sure you are 100% confident (or at least as close to 100% confident as you can get) before your treatment.

Best wishes and keep posting...you will get lots of advice I am sure.

Ken
2.7 cm AN diagnosed June 2012
Translab completed November 2012 at House Clinic
SSD; numbness on face and in mouth, plus poor taste buds, but happy with how I am doing so far

CHD63

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Hi Cindy .....

It is good that you have posted your question here, as you should receive good feedback from others who have gone before you.  In the meantime, if you have not already done so, send for the free informational information from the ANA.  See:  http://anausa.org/index.php/contact-us/free-ana-information-packet

As Ken said this is one time you want the best medical personnel you can find as it is such an unusual type of tumor in one's head.

As I'm sure you know, no one can guarantee the results post-treatment as each situation is unique and there are several factors going into treatment that will affect the outcome.  The decision for treatment has to be yours, and yours alone, after gathering the best information possible and seeking the opinions of highly skilled, experienced (in AN treatment) physicians.

Some of us (me among them) simply wanted the thing out of our heads so we chose surgery.  I have had two AN surgeries and recovered well from both of them.  I am retired, so returning to work was not a factor for me.  However, I feel I could have gone back to work with only moderate adjustments six weeks after my first surgery, three weeks after my second surgery.  When I had my second surgery at House Ear Clinic, there was a gentleman there who was a hospital executive (at a prominent hospital on the East Coast) and had mid fossa the same day I had translab.  On days 6 and 7 post-op for us, he and his wife and my husband and I drove to Newport Beach, CA for an overnight get-away and we both did great.

Hopefully others will come along here, who chose radiation and tell their stories.

Thoughts and prayers and keep in touch.

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

PaulW

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Hi Cindy,
My situation sounded pretty similar to yours.
46 years of age 10mm AN
2 school age Children.
Job that required very little down time. lots of talking, listening and thinking,

A number of institutions are having good long term hearing results.
University of Pittsburg is reporting 53% hearing preservation at 10 Years

Plus some others
http://www.ncbi.nlm.nih.gov/pubmed/22937934

http://www.ncbi.nlm.nih.gov/pubmed/19057423

I had single session Cyberknife which is very similar to Gamma Knife.
At nearly 3 years my hearing is better than pre treatment and is considered normal, symptoms today are very minimal.

Surgery can turn out very well, but if your number is up, it can turn out very poorly too.

Radiation has not been with out its challenges, mainly fatigue.
I am very happy with my treatment choice.

Ultimately it's your decision,  and coming to your own conclusion as how to move forward is important.





« Last Edit: March 25, 2013, 11:00:40 am by PaulW »
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

CGL

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Thanks for your replies.  I have read a lot of material, I have spoken to Dr. Friedman, as well as to a local doc who does gamma knife, and I have an appointment to meet with Drs. Golfinos (neurosurgeon who does microsurgery with Dr. Roland at NYU) and Konziolka (formerly of UPMC).   This is indeed a very difficult decision. 

Paul W - I'm curious what you mean when you say that the radiation causes fatigue?  I was more worried about the fatigue that would come along with surgery.  I had heard that the general rule for surgery is one month of fatigue for every hour you are under anesthesia.  Clarice, it sounds like you were very fortunate in that regard, but in making my decision, I will assume the general rule to be true.

Thanks for any guidance anyone can offer.

dtorres135

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I saw all the doctors Dr. Golfinos, Dr. Roland and Dr. kondolska for GK.  After researching all options,I choose to go with less invasive GK mainly because I felt it was the least risky for facial weakness and less down time.  I live a busy live.  I will be doing the GK with Dr. Kondolska.  I'm very nervous but want to get this done and hopefully never have to treat it again.  I have some major celebrations before then and that is why I chose the date far out.

robinb

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Hi-

I went w/GK; you can see my posts in radiation. No fatigue, back to regular schedule in 3 days, now 2 mos post procedure. Feel free to PM me if you would like to speak personally.
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

PaulW

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Hi Cindy,
I think it is fair to say, that after radiation whatever symptoms you already have, are likely to be the same or get worse for a while.
Eventually things do settle down.

I went back to work within 2 hours after Cyberknife.... I tried to sit still and rest.... but got bored so got back on the phone and computer.

Fatigue is a common complaint amongs many AN'ers. I had fatigue before treatment, it got worse after treatment, and is now gone.
My level of fatigue was related to how good my balance, hearing and tinnitus were... But mainly balance.

My personal experience was that the fatigue was not dibilitating. I just needed to concentrate hard to get off my behind and be motivated for a few hours. There was nothing I could not do, but it needed some determination.
I thought for years it was just growing old. But now that my balance has improved the fatigue is also gone.
Having hearing in one ear can also be tiring. Loss of the Vestibular Occular Reflex can also make reading more tiring.

Here is an article related to Vestibular Nerve preservation with Cyberknife
http://www.ncbi.nlm.nih.gov/pubmed/23446119

It is my understanding that fatigue can occur in W&W, microsurgery, or radiosurgery.

I would hate to think that you would choose radiosurgery solely on the premise of no fatigue, and then you had fatigue.


10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

mesafinn

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Hi Cindy,

I'm glad you found us here.  It's a great group, and you will find much support here.

I was diagnosed a little over a month ago and have spent the past several weeks in consults, doing research, and reaching a decision.  You will do the same.  I've learned here that every decision is personal and every decision is based on one's unique circumstances.

Dr. Chang at Stanford is one of--but not the only--Cyberknife guru.  He will review your MRI and give his input.  GK is also an option, and it sounds like you know of Dr. K at NYU.  There are other approaches, some people will share their experiences here, and only you can decide what is best.

I'm happy to share my recent thoughts, but the best place to go are the various resources here which you can readily find.  I've opted for GK in Pittsburgh, but I also strongly considered a surgical approach.  My mother had surgery for a brain tumor and has experienced chronic fatigue.  But each life is so different that I don't think generalizations can be made.

I mentioned to my spouse that my decision would have weighed more heavily if we had children.  I'm 47 and found the process daunting.  With a family to consider, you have more to think about than I did---and I wish you the very best in your discernment.

Patrick
Oct 2012:  Constant Pulsatile Tinnitus
Feb 28, 2013: Dx AN 1.4 cm X .9 mm
April 19, 2013:  GK at UPMC w/Dr. Lunsford

Some things in my life need to matter less, and other things in my life need to matter more.  So yes, I'm taking this as a "lesson learned experience."

leapyrtwins

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Not sure what a "medium" outcome is, but can tell you from my experience that I had surgery for an AN much larger than yours and had a great outcome.  Only permanent side-effect is SSD (single-sided deafness) which lead me to a BAHA.  Recovery time was quick for me - back to work part-time @ 2 1/2 weeks, full time @ 4 weeks.

That said, everyone is different and every AN Journey is different.  You need to base your decision on what you think is best for you (obviously with the input from doctors).  The docs you mention - Roland & Golfinos, Konziolka, and Friedman - all have great reputations, although I don't see any reason you'd need to travel all the way to House to see Friedman. 

Your AN is small enough for radiation and those who've had it find it's a great option.  You need to weigh the pros and cons of each treatment, and then follow your heart, your head, and your "gut".

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

CGL

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To everyone, thanks so much for the encouragement.  I vacillate between being grateful that this thing is small and benign and then to terror at the thought of losing my hearing on one side.  Thank you for showing me that life goes on. 

I'm leaning toward the radiosurgery, in part because I have a weird medical history including a heart attack less than 2 years ago due not to the usual causes (plaque from high cholesterol) but from an artery that spontaneously dissected ( SCAD).  Luckily I survived that (half of us SCAD folks don't) but I am worried that this will somehow affect my ability to tolerate surgery.  Little is known about SCADs because they are rare and usually only occur to women.

Anyhoo, I'm slowly making peace with my continued medical challenges.  I'm inspired by the bravery of the people who are kind enough to reach out on this forum.  Thank you.  I'll try to pay it forward.

Cindy

kmr1969

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Cindy,

Make sure you discuss all of your medical concerns with both the radiosurgeons and microsurgeons.

They may not rule out surgery based upon your existing heart condition.

A recent AN patient from our forum recently underwent surgery with no problems even though he had been recently diagnosed with a pretty serious heart condition.

I know it is hard, but keep thinking positively and focus on overcoming this challenging but fixable issue.

Ken
2.7 cm AN diagnosed June 2012
Translab completed November 2012 at House Clinic
SSD; numbness on face and in mouth, plus poor taste buds, but happy with how I am doing so far

arizonajack

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Hi Cindy,

This recent article might provide you with some helpful information.

http://thejns.org/doi/pdf/10.3171/2012.6.FOCUS12192

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

jaylogs

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Hi there!! I was your age when I got diagnosed. Relatively same size too.  I guess all these decisions (and there are many, as you are no doubt aware) come down to personal choices and what feels best for you. As it has been said, once you make  your decision and it feels good, then that was the best decision.  I went with Middle Fossa surgery and have not regretted it.  Let us know how it goes! Take care!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

BRS89

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Cindy,

Not sure I can add anything that will help more than the vets here do for all of us newbies. I had an AN removed (that we had been watching and fretting about for 2 years) this past January 23rd, within 2 months of being told I had an ascending aortic aneurysm that I inherited. (This was the same thing that afflicted John Ritter). So, I was faced with a double whammy. I was anticipating the AN surgery, and then by accident, an CT scan caught the enlarged aorta.

I do not, nor do I pretend to know if all heart or nearby heart issues are the same, but I had my cardiologist talking in concert with my neurosurgeon up to the actual day of surgery. I made sure all communication was happening on both sides, and there was zero confusion about what I had and what we were planning to do. I came out of the surgery without any problems with the aorta exasperated.

I had a 6 hour surgery, retro behind the ear, and lost probably 85%-90% of my hearing. I will not lie and say I smiled and went on my way. The past 2 months, along with my balance, the lack of hearing, and saying "what" more times than I ever have in my life has been a frustrating challenge but I will look into alternatives to perhaps assist me. I am still a fresh postie and just now gathering my strength for the new me. Testing myself, I drove from Dallas to Galveston this past week in heavy traffic and was able to drive 7 hours one way and 6 coming back. This was good for me, as my brain really was pushed and I could feel me getting stronger with the challenge.

Still have work to do, but glad to be beyond the worry of pre-surgery things like when I had a headache, worrying if the thing was growing or not, (just typical stuff knowing you have something in your head that doesn't belong).

To sum up, I trusted my doctors, but I cut the cards. I made sure with excessive annoying phone calls and visits that they had discussed my case in detail and were in agreement to go forward.
« Last Edit: March 30, 2013, 09:52:10 pm by BRS89 »