Surgery after Gamma Knife

[tekmac2000]

I am considering treatment options for my <2.0 cm AN (left ear).  I am 56 years old, in good health, and am receiving conflicting advice from my doctors.

The surgeons I have consulted disparage the effectiveness of Gamma Knife, saying I am too young and healthy and that the surgery is better for me.  They want to do a trans-lab, meaning that I will lose hearing in my left ear.  I still have good hearing in the left ear.

I have seen a top radiologist for another issue, and he said I am an excellent candidate for Gamma Knife, and am leaning towards this option.  Scared to death of the surgery.

The surgeons said if I had GKS and needed surgery afterwards that the tumor would be "sticky" and I could have more complications.  Has anyone else heard this?

I appreciate any responses!

Thank you, Tracey

[sandyinwisconsin]

Tracey,

I'm 44 and am scared of surgery.  My doctor in Madison, WI is recommending 27 treatments of a low dose radiation.  What hospital are you going to?

My tumor is 1 cm.  I'm afaid of both surgery and radiation. 

Sandy

[tekmac2000]

Hi Sandy,

I'm seeing Dr. Chen for radiation at Beaumont-Royal Oak.  I have also spoken to Dr. Eleanor Chan at the MEI and Dr. Gregory Basura at University of Michigan. 

I was diagnosed in summer 2012 and was waiting to see if my AN is growing, and it is, so I need to decide treatment before it gets too large for radiation to be possible.

Tracey

[Echo]

Hi Tracey,

I'm 58 and just had Gamma Knife in September for a 2.4cm AN.  I consulted with 3 neurosurgeons and one otolaryngologist prior to making my decision.  Each one told me I was a perfect candidate for either surgery or Gamma Knife.  I also raised the quesion of "what happens down the road if I require surgery after Gamma" and was told by one neurosurgeon to focus on what treatment best fits me today and not worry about a secondary treatment that may never be required.  I was also told by two of the three neurosurgeons that in their opinion Gamma knife does not necessarily make surgery more difficult and the third neurosurgeon thought that it did.  I think there is a lot of controversy over whether AN's are harder or not to remove after Gamma and I'm not sure there is a straightforward answer to that question.
From what I can tell reading about surgical outcomes, AN's that have never been exposed to Gamma Knife can be equally difficult to remove or they can be removed without undue complications.

I would recommend continuing to get a few more opinions if possible.
Best of luck.
Cathie.

[Dee-dee]

Hi, Two years ago I was in the same place as you (similar size, similar age) and chose gamma knife.  I've had complications from the gamma knife (a small percentage of us can get swelling of the AN, further compressing the brain stem and doing more permanent damage to the three nerves), but if I were faced with the same choice all over again, I would choose gamma knife again.  It's a personal choice. I think surgery has more risks.

But to answer your question, we heard a lecture at our AN meeting by a neurosurgeon who said surgeons have been surveyed and reported that surgery post gamma knife was more difficult, but he said that this is a red herring.  The issue is not whether surgery post gamma knife is more complicated, which the surgeons that I consulted  also told me.  The issue is: are the outcomes worse with surgery post gamma knife and, if I remember correctly, he said  there has not been much research done on that topic.  The neurosurgeon who spoke to us said he felt that the outcomes with post gamma knife surgery were not worse. His hospital has also done low dose second gamma knife radiations, where the first failed.  I had not heard of this before.  My hospital has not done repeat gamma knife,

Gamma knife has been used on over 1 million people so far for 25 years in the US.  In Europe it has been used since 1967 when it was invented in Sweden by neurosurgeon Lars Leksell.  There may be research from Europe about surgery post gamma knife on the internet.

Hope this helps.

[tekmac2000]

Thank you all for your responses!  I'm going to attend an ANA group discussion next month, and plan to make my decision after that! 

Best regards, Tracey

[tekmac2000]

I had a third consultation with Dr. Bojrab at the Michigan Ear Institute, he has done thousands of trans-lab surgeries.  He and Dr. Chen collaborated on a hearing preservation study with GK treatment of AN.

The hearing and nerve testing was done at MEI, which showed that my hearing and my balance nerve are still good.  I've read that if your balance nerve is still strong the side effects from the surgery are much worse, because your brain/body hasn't started adjusting to only one balance nerve before you have the surgery

Dr. Bojrab recommended that I have the GK treatment to treat my AN.  I'm having the treatment with Dr. Chen on January 22, very nervous, but I think it's the correct decision for me.

[TexasSprinter]

tekmac2000--congrats on making a decision.  Mine was for surgery, but after reading posts on this forum for the last year, I've realized that there is no single "right" decision for everyone.  Just having made the decision was a weight off my mind.  FYI I had good balance before my surgery and the balance nerve was sacrificed during my first AN surgery.  Yes the balance/vertigo issues were a problem for a few months, but one year later my balance feels completely normal.  Best of luck to you with your GK treatment.
Scott

[LBB]

Agreed. No one person's eperience is the same as the next.  I had GK in May of 2011. My AN has continues to grow since. It is now doubled in volume.  Am in contact with physicians to have it removed.  My hearing was also unaffected before GK. At 2years post op GK I now have  moderate hearing loss on the AN side.  My neurosurgeon says  he is not surprised.  I have also been told by 2 neurosurgoens that yoy can only have GK twice in a lifetime, and we needed to save it as an option for treatment of any residual tumor they may have to leave behind in order to preserve my facial nerve.  Translab because he says it is inevitable I will lose most  servicable hearing due to scarring from GK.  And that seems to be acurate for me because my hearing has been on a steady decline. Good luck and God bless!

[PatSal]

I had gamma knife six years ago.  Last May I had surgery to remove my AN,  It had doubled in size and was pressing on my brain stem.  If I had it to over again, I would have had the surgery first.  Mayo Clinic told me to go gamma knife.   I was afraid to do the surgery and chose gamma knife. I guess I was just one in the percentages to have their AN grow.  It didn't grow until the fifth year. I lost my hearing about two weeks after surgery, and developed facial paralysis approx. three days after surgery.  In December, I had a platinum eye weight implanted so I could close my left eye.  My facial is coming back but have developed synkinesis.

[sandyinwisconsin]

Tracey,

I'm 44 and had 27 treatments of radiation at Madison, WI University.
I'm like you - I couldn't mentally accept surgery, but I'm taking a chance on being a younger radiation patient.

I finished the treatments in January.  No problems so far, and I still have fairly good hearing.
I just don't hear the high notes.

sandyinwisconsin

 

[tekmac2000]

Thank you All!  I'm doing pretty well, though I felt that my hearing was deteriorating before I had the GK, my post GK testing confirmed that.  I'm having my first post GK MRI soon, I would rather wait a year, but Dr. Chen and Dr. Bojrab both think it is important that I do it now.   

[Heresrose]

I think your fear of surgery is well founded. You should consult with doctors who perform both microsurgery and radiosurgery. That way you can get an unbiased recommendation. Try Dr. Chang at Stanford. Email him-I don't know how he does it but he responds right away.

Good luck,

Rose