Author Topic: What to do?????? Different opinions.  (Read 6334 times)

MHope

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What to do?????? Different opinions.
« on: May 21, 2016, 05:02:36 pm »
 I am 44 and recently diagnosed with AN after sudden hearing loss in right ear. I can't seem to decide between Gamma Knife and Surgery. I consulted different Doctors in the field, all excellent. Some say that I'm a great candidate for Ganna Knife since the AN it's medium-small.  And others say because I'm young I should do surgery. Big question is... If GK is successful, which they seem to think it would be, how long does it last?? Is it better to just remove it with surgery? I'm so scared of major surgery, facial nerve consequences among other side effects. Frustrated.  :-\

Greece Lover

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Re: What to do?????? Different opinions.
« Reply #1 on: May 22, 2016, 10:48:47 am »
I'm 40 and had surgery 2 weeks ago. It's not easy, the recovery is tough. But the lack of long term studies of GK made me uncomfortable. Nobody knows what it would be like 20 years from now. My surgery was a success. They saved some hearing. I'm having some facial weakness but that should correct with time.

These things are not easy. You'll find on this discussion board a variety of opinions. Many in favor of GK, but some who have had issues with it. (Same goes for surgery). Good luck with your deliberations.  Which hospitals did you check for surgery?  Would it be translab?
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

rupert

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Re: What to do?????? Different opinions.
« Reply #2 on: May 22, 2016, 05:40:55 pm »
MHope,  GK has a 96-98% success rate on medium to small tumors.  I'm not sure where people assume there are no long term studies,  as GK has been around for about 50 years and somewhere around a million people have been treated with GK.   Surgery has come a long way also  and has become vastly more successful since the use of microscopes back in the 70's.  Just as surgery continues to be tweaked by new tools and techniques so does GK.  The thinking as to why surgery might be better when younger doesn't really have anything to do with long term studies as much as if you're younger you can recover ( bounce back) from surgery better.  Where as if you're older,  maybe you won't handle surgery as well.  Success rates and regrowth chances are virtually the same from either surgery or radiation.  There is a very minimal chance of facial nerve damage with GK though as opposed to micro surgery if that is one of your main concerns.  With a tumor the size you have, you have several treatment options.  That's good!  It is going to come down to your own personal preference.  Treatment is a very personal issue to many.  Good advice is to seek opinions from very experienced doctors which you seem to be on track already.  What ever treatment you decide, experienced teams usually come with better results.  Good luck to you.

PS:  I was 49 when I had my GK done at UPMC 6 years ago.

arizonajack

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Re: What to do?????? Different opinions.
« Reply #3 on: May 22, 2016, 09:47:51 pm »
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

MHope

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Re: What to do?????? Different opinions.
« Reply #4 on: May 23, 2016, 01:55:31 pm »
Thank you all. I am very overwhelmed with trying to make a decision. AN dimensions are 19mm x 16mm x 14mm. I'm consulting in Universiry of Miami. Does anyone else have an experience there?
My concern is that if GK works and it regrowths in 10-15-20 years from now ( Im 44) then surgery is more difficult. Could GK be repeated then? Are there studies of very long term results in young patients, like 30-40 years? I truly don't want to have surgery but I want to have the best permanent solution. If I was older, GK would be my choice.

Greece Lover

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Re: What to do?????? Different opinions.
« Reply #5 on: May 23, 2016, 04:56:33 pm »
Here is a special section for healthcare providers. I also searched the forum for information on doctors names and hospital names to help me research different places.

One thing to know is that you have some time. These Things grow slowly so you have time to deliberate.

Good luck.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

rupert

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Re: What to do?????? Different opinions.
« Reply #6 on: May 23, 2016, 06:18:22 pm »
Thank you all. I am very overwhelmed with trying to make a decision. AN dimensions are 19mm x 16mm x 14mm. I'm consulting in Universiry of Miami. Does anyone else have an experience there?
My concern is that if GK works and it regrowths in 10-15-20 years from now ( Im 44) then surgery is more difficult. Could GK be repeated then? Are there studies of very long term results in young patients, like 30-40 years? I truly don't want to have surgery but I want to have the best permanent solution. If I was older, GK would be my choice.

Many a person has tried to predict the future. ;)  Reality is that no one can.  I would concentrate on what's best for you in the here and now.   20 years from now there could be treatment options no one would even consider,  or things that aren't even invented yet.  Chances are very good you'd never have to worry about it anyway.   Some surgeons say it can be more difficult to remove after radiation. Others say it doesn't make a difference.  Some are more difficult right off the get go the first time.  I think I recall several on here that had treatment in Miami. If you do a search they will pop up.  Some don't want anything to do with radiation right off the get go and it makes their decision easier.  Same with surgery.  Most people however, get stuck trying to decide between the two.  You're not alone in that.
« Last Edit: May 23, 2016, 06:20:37 pm by rupert »

MHope

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Re: What to do?????? Different opinions.
« Reply #7 on: May 27, 2016, 01:28:34 pm »
I keep getting different opinions on what to do from excellent doctors. Some say GK and some say surgery. I truly would prefer GK, but my fear is the failure of the treatment or regrowth later in life, making surgery more difficult at an older age and after GK. I'm very overwhelmed. Sent my records to UPMC and House clinic for an opinion. Waiting to hear. I'm 44 and medium size tumor ( 1.9 cm x 1.6cm X 1.4 cm).  Any other  people around my age with this experience?  Thank you so much for your replies.

sandyinwisconsin

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Re: What to do?????? Different opinions.
« Reply #8 on: May 27, 2016, 09:06:45 pm »
Hi MHope:

I'm 46 right now and was diagnosed at 44 with a 1 cm tumor. 
I was undecided too about surgery or radiation, and initially planned on doing surgery.
I then met with a great radiation doctor who really put me at east with radiation.
I was extremely concerned about facial issues and just did not have a good feeling about surgery.
Dr. Howard in Madison, WI did not want me to have one dose of radiation, but 26 lower doses of radiation.
I did that in December 2013 and had no problems during or after the treatments.
My hearing is probably the same as it was prior to radiation.  Let me know if I can help in any way.

Sandy
1 cm AN deep in the boney canal.  Treated with 26 treatments of radiation in December, 2013.  Please pray with me that this worked.

MHope

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Re: What to do?????? Different opinions.
« Reply #9 on: May 31, 2016, 02:34:50 pm »
Hi MHope:

I'm 46 right now and was diagnosed at 44 with a 1 cm tumor. 
I was undecided too about surgery or radiation, and initially planned on doing surgery.
I then met with a great radiation doctor who really put me at east with radiation.
I was extremely concerned about facial issues and just did not have a good feeling about surgery.
Dr. Howard in Madison, WI did not want me to have one dose of radiation, but 26 lower doses of radiation.
I did that in December 2013 and had no problems during or after the treatments.
My hearing is probably the same as it was prior to radiation.  Let me know if I can help in any way.

Sandy

Thank you Sandy for your response! Did you have any swelling of the tumor after? I assume after 3 years the treatment worked? I want to go the GK route but I have this voice in my head saying, "I should have surgery while young and fit".  Glad  to hear your treatment went well.

MHope

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Re: What to do?????? Different opinions.
« Reply #10 on: May 31, 2016, 03:21:52 pm »
I chose GK. You can read my story at the link below.

There are numerous studies of the long-term results of GK. Here's a few.

http://www.ncbi.nlm.nih.gov/pubmed/19783373

http://thejns.org/doi/pdf/10.3171/2014.8.GKS141506

http://www.ncbi.nlm.nih.gov/pubmed/19050660

https://www.midmichigan.org/conditions-treatments/neuroscience/brain-tumors-abnormalities/acoustic-neuroma/acoustic-neuroma-clinical-article/

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


PS: What are the dimensions of your AN and how much of your hearing is gone?


Great articles! Thank you so much! Dimensions are 1.9cm X 1.6cm X 1.5cm. Not small.

MHope

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Re: What to do?????? Different opinions.
« Reply #11 on: July 29, 2016, 09:29:00 pm »
Hello all!! I thought I follow up in the hopes of helping someone else. I found that the hardest part is making the decision, at least for me it was. I had GK today at UPMC with Dr Lasford. I cannot say enough good things about the whole experiences. He is the most experienced and the absolute best doctor to perform GK procedures. In addition, his staff is absolutely amazing. The nurses are the nicest, most polite, helpful I have ever encounter. They have me pretty good sedation so I basically was sort of out for most of the process. Even though I heard their voices I was sleeping. I didn't feel anything at all and was done by 9:30am! I am extremely happy with my decision and very fearful that I was able to go to UPMC to do it. Now I only hope it worked and I'm very confident it will. I chose not to have surgery bc of all the risks involved and extensive recovery time. I figure if I have a choice not to do it, why do it. Good luck to all!
AN diagnosed 3/16  1.9cm
GK UPMC 7/29.    1.9cm

Greece Lover

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Re: What to do?????? Different opinions.
« Reply #12 on: July 30, 2016, 05:54:30 am »
Thanks for the update. Best of luck with the results!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

 


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