Author Topic: Decision Time  (Read 12900 times)

prwkent

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Decision Time
« on: February 11, 2013, 04:26:31 pm »
I was diagnosed by MRI January 11, 2013 with 1.1 cm x.8 cm x .6cm acoustic neuroma on my left side.  I am a 53-year-old woman in good health. I sought out treatment last fall for some hearing distortion, tinnitus, fullness feeling in my ear and some dizziness.  (I thought I might have an inner ear infection).  After visiting an internist, and then ENT I was sent for an MRI which revealed the AN.  My hearing is still fairly good in my left ear; I have some dizziness and slight facial numbness. I live in New Jersey and have been researching my options over the last month.  I have seen Dr. Golfinos at NYU who said that trans-lab surgery after my hearing is lost is an option, or Gamma Knife now with Dr. Kondziolka.  Dr. Kondziolka believes that Gamma Knife now has the best option to preserve the hearing I have without the risks of surgery.  I met with Dr. Sisti at Columbia Presbyterian who strictly recommended Gamma Knife as soon as possible.  Dr. Wilkenson at House recommended Middle Fossa surgery-a perfect case.  Dr. Landolfi at JFK recommended watch and scan to document growth first.  My ENT seemed to favor watch and scan.  My Internist was pretty adamant in doing something and not waiting.  I am leaning towards Gamma Knife rather than surgery.  I would rather not travel for surgery across the country because I am worried about both the severity of the surgery and subsequent follow-ups.  But I have read on this forum that the House clinic is the gold standard of treatment.  I personally wanted to watch and scan, but the latest data does not seem to support this.  Any advice or information is appreciated.   Thanks to anyone who can help me in this decision. 

Blags

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Re: Decision Time
« Reply #1 on: February 12, 2013, 07:27:28 am »
Have you met with the drs at Cornell Weill. I. Had retro surgery with them in oct and fantastic results. No significant hearing loss, no facial paralysis (slight droop after surgery which has gone away) and my dizziness and lightheaded feeling is about 90% gone now. Which was my only symptom of my AN.
The drs I used were Boockvar neurosurgeon and Brown neurotoylologist.
Oct 2012 - 1.4cm AN removed retro sigmoid with Dr. Boockvar and Dr. Brown at Weill Cornell NY Presbyterian

prwkent

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Re: Decision Time
« Reply #2 on: February 12, 2013, 07:41:57 am »
Thanks for your response!  Did you consider GammaKnife and why was this surgery recommended as opposed to other approaches?  I too would like to preserve hearing if possible. Ir sounds like you had a good outcome. I should probably call this group also.
« Last Edit: February 12, 2013, 07:44:34 am by prwkent »

robinb

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Re: Decision Time
« Reply #3 on: February 12, 2013, 10:09:36 am »
You have already seen some of the best docs and are lucky to be in area where many of them are located. I am personally in favor of GK if thats an option over invasive surgery. But you have to form your own opinion and do what you beleive is best for you personally.

See my personal gamma knofe experience in the radiation section. I spoke to many people and docs across the county. Dr K. would have been my choice but he was not set up for insurance when I wanted to have GK.

Feel free to PM me if you would like to chat.

Good Luck!
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

cindyjarrett

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Re: Decision Time
« Reply #4 on: February 12, 2013, 10:19:19 am »
Sounds like you have been doing your homework.  I am 50 years old and had gamma knife at the University of Virginia on October 12, 2012.  At the time I just had tinnitus in the left ear.  After an MRI, it revealed the AN.  Mine was 1.9 cm at the largest point.  I also went to the Mayo Clinic and talked with Dr. Link.  He would do surgery or gamma and after being pressed he recommended gamma if I wanted to preserve my hearing.  I have lost my high pitch hearing but have 96% word recognition.  So I did not want to lose my hearing.  That is why I chose gamma.  So far things are good.  I am it seems now getting some TMJ in my jaw on the left side, but the doctor feels it is from stress.

If you have any questions, just PM me.

Cindy
Diagnosed 8/9/12 with an on left side
19 mm x 17 mm x 13 mm
tinnitus with high pitch hearing loss
Will have gammaknife at UVA with Dr. Sheehan on 10/12/12
Trusting in God

arizonajack

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Re: Decision Time
« Reply #5 on: February 12, 2013, 01:01:10 pm »
My hearing is still fairly good in my left ear;

That's all I needed to see to vote for getting aggressive with your tumor right now.

I'm totally deaf in my AN ear and, trust me, it sucks.

Here's a couple of articles about the success of gamma knife in treating small tumors and preserving hearing.

http://emedicine.medscape.com/article/857604-overview

http://www.panarabneurosurgery.org.sa/journal/October2008/p1-10%20(551).pdf

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

prwkent

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Re: Decision Time
« Reply #6 on: February 13, 2013, 08:14:18 am »
Thank you for the support.  I appreciate the responses. This is a confusing condition and the treatment options are so different in approach that luckily some time to research is available. I feel fortunate that it is not a life threatening situation and I can weigh the risks of the options.

annamaria

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Re: Decision Time
« Reply #7 on: February 13, 2013, 07:41:36 pm »
This is a newly published article (2012) on data about 10-years after the treatment (2001).  This is precisely the data one needs: 10 years after, how do things turn out?

Conclusion below: Gamma Knife surgery can preserve a high quality of life for most patients with VS who do not have symptomatic brainstem compression. Long-term follow-up is required because of the risk of delayed recurrence of VS.

Annamaria
= = = =

J Neurosurg. 2012 Dec;117 Suppl:57-62. doi: 10.3171/2012.7.GKS12783.

Long-term follow-up studies of Gamma Knife surgery with a low margin dose for vestibular schwannoma.

Sun S, Liu A.


Source

Gamma Knife Center, Beijing Neurosurgical Institute, Tiantan Hospital, Capital University of Medical Sciences, Beijing, China. ssbwyl@vip.sina.com


Abstract


OBJECT:

The aim of this study was to assess long-term clinical outcomes in patients who underwent Gamma Knife surgery (GKS) with a low margin dose-14 Gy or less-to treat vestibular schwannoma (VS) unrelated to neurofibromatosis Type II.

METHODS:

Between December 1994 and December 2001, 200 patients with VSs underwent GKS, which was performed using the Leksell Gamma Knife model B. More than 10 years of follow-up is available in these patients. One hundred ninety patients (88 male and 102 female patients) were followed up using MRI (follow-up rate 95%). The mean age of these patients was 50.6 years (range 10-77 years). Gamma Knife surgery was the primary treatment for VS in 134 cases (70.5%) and was an adjunctive management approach in 56 cases (29.5%). The median tumor margin dose was 13.0 Gy (range 6.0-14.4 Gy), and the median maximum tumor dose was 28.0 Gy (range 15.0-60.0 Gy). The median tumor volume was 3.6 cm(3) (range 0.3-27.3 cm(3)). The median duration of follow-up in these patients was 109 months (range 8-195 months).

RESULTS:

In the 190 patients, the latest follow-up MRI studies demonstrated tumor regression in 122 patients (64.2%), stable tumor in 48 patients (25.3%), and tumor enlargement in 20 patients (10.5%). The total rate of tumor control was 89.5%. Using the Kaplan-Meier method, the authors found the estimated 3-, 5-, 10-, and 15-year tumor control rates to be 95%, 93%, 86%, and 79%, respectively; and the estimated 3-, 5-, and 10-year hearing preservation rates to be 96%, 92%, and 70%, respectively. Twenty-six patients (13.7%) exhibited transient mild facial palsy or facial spasm, and 2 patients (1.1%) suffered persistent mild facial palsy. Thirty-nine patients (20.5%) had transient trigeminal neuropathy, and 5 patients (2.6%) suffered from persistent mild facial numbness. The incidence of persistent severe facial and trigeminal neuropathy was 0.0%.

CONCLUSIONS:

With a low prescribed margin dose of 14 Gy or less, GKS was confirmed to provide long-term tumor control for small to medium-sized VSs and largely to prevent cranial nerves from iatrogenic injury. Based on the findings of this study, GKS is also a reasonable option for the treatment of large, heterogeneously enhancing tumors without symptomatic brainstem compression. Gamma Knife surgery can preserve a high quality of life for most patients with VS who do not have symptomatic brainstem compression. Long-term follow-up is required because of the risk of delayed recurrence of VS.

prwkent

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Re: Decision Time
« Reply #8 on: February 17, 2013, 08:39:15 am »
I decided over the weekend to have GK. This group was valuable in so many ways helping me arrive at my decision.  I weighed everything based on personal experiences of the people on this forum, information provided, and a lot of homework which was recommended by everyone here. Frankly, I could have gone eitherway in terms of surgery or radiation. Because I am facing some personal issues, I was leaning towards GK in the beginning mainly out of fear of not being able to handle the surgery alone. I found through this forum that I could have handled the surgery as so many others here have. It helped me make the decision for GK out of knowledge, not fear.  I feel lucky that I have the choice to do radiation as a therapy since my AN is still small. 
I think I have read almost everything written here. The yellow flag post from awhile back was moving for me.  I don't know what I can give back to ANA but I will certainly be reading and writing during recovery and beyond. Thank you for sharing stories. I will have a story to share too. Hopefully a good one!

millie

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Re: Decision Time
« Reply #9 on: February 17, 2013, 08:52:53 pm »
Glad you are coming to a decision; now it will get more peaceful  for you.You will be in our prayers as you undergo treatment.  Best wishes, Mil

arizonajack

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Re: Decision Time
« Reply #10 on: February 18, 2013, 12:25:40 pm »
This is a newly published article (2012) on data about 10-years after the treatment (2001).  This is precisely the data one needs: 10 years after, how do things turn out?


Here's a link to the complete article for those who like to read all the technical stuff.

http://thejns.org/doi/pdf/10.3171/2012.7.GKS12783

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

prwkent

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Re: Decision Time
« Reply #11 on: March 05, 2013, 03:45:15 pm »
Some time has passed, and I thought a lot about what Millie said, "peace will come now that a decision has been made."  I didn't respond, waiting for the peace.  And I think the peace is not there because I am not feeling good about the Gamma Knife procedure.  I am all scheduled, and it's got the data, etc etc but I don't want to wait two years to know if things have worked out.  I may be one of those people that need it removed.  I don't want to do the surgery either, but I am looking for an easy way out via Gamma Knife.  I have met a great surgeon, and my new "gut" is telling me that Gamma Knife may not give me the resolution I am seeking.  Does this make sense to anyone?

arizonajack

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Re: Decision Time
« Reply #12 on: March 05, 2013, 04:33:28 pm »
It's no surprise that you are second guessing yourself. That happens to lots of people. Nobody can tell you that your choice is right or wrong or that changing your mind is right or wrong.

But think about it. You weighed the options, you spoke with a variety of doctors, you did a bunch of research, and you read the experiences of lots of people here.

After all that preliminary stuff something clicked and you picked GK. That's called instinct.

Remember your school days when you answered multiple choice questions. The philosophy was that you had a better chance of being right with your first choice and a better chance of being wrong if you went back and changed it.

If having to wait two years to find out if GK was successful is bothering you, it pretty much takes a couple of years to find out if surgery was successful. You've still got to have periodic MRIs. And I've read some reports of regrowth after surgery necessitating radiation or additional surgery.

It's up to you if you want to change your course.

But first I suggest you go back over everything that contributed to your GK decision and see if it still all makes sense. Then decide.
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

prwkent

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Re: Decision Time
« Reply #13 on: March 06, 2013, 10:57:00 am »
Thanks, I appreciate the feedback.  Yes, I hear what you are saying.  But sometimes in the sitting back and not reacting, that helps too.  Surgery is ugly.  Gamma Knife nice and clean.  I am starting to think that the pendulum swings--surgery was the only option.  And it was aggressive.  Gamma Knife was a secondary option if you couldn't handle the surgery.  Then Gamma Knife became much more mainstream.  But it seems to me that if you can have surgery, the order of things would be try the surgery.  If it fails, then go to radiation, not the other way around.  Both tough decisions, and yes a lot of data to absorb, which although I have read, know that I am not qualified to really analyse.  If I can get the tumor removed, wouldn't that be the better outcome???

Jim Scott

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Re: Decision Time
« Reply #14 on: March 06, 2013, 04:50:38 pm »
prwkent ~

For what its worth, I underwent 'debulking' surgery on a 4.5 cm AN which essentially 'thins out' the tumor by peeling it off it in layers until it folds over on itself.  The tumor's blood supply was purposely severed during the operation.  Following a 90 day 'rest period' I underwent pre-planned radiation (FSR) intended to destroy the remaining tumor's ability to re-grow.  The surgery was 9 hours but my AN symptoms disappeared almost immediately and I recovered quickly with no complications.  Unfortunately, I went into the surgery SSD and remain that way.  The radiation was 26 sessions, Monday through Friday.  They lasted approximately 30 minutes each.  I suffered no side effects.  The total radiation I received was 27Gy.Subsequent MRI scans over the next two years indicated the beginnings of necrosis and shrinkage.  This all occurred in 2006 and I have been doing great with no recurrence since then.

My neurosurgeon presented me with the surgery/radiation approach when I made it very clear that I wanted to avoid facial paralysis and its related issues.  The debulking surgery avoided disturbing the facial nerve to the point of causing problems and the radiation allowed the remaining tumor's DNA to be attacked without doing damage to the facial nerve.  This was taking the long way around, as it were, but worth to me.  I had no real long-term complications other than a slight 'dry eye' that is inconsequential and does not affect my quality of life (blinking rapidly usually resolves any discomfort).  My point is that you might consider 'debulking' surgery and follow-up radiation to ensure the best possible outcome, assuming your neurosurgeon is experienced and skillful.

Jim    
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

 


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