When to choose Micro over GK or CK?

[MikeW]

My husband lost some hearing a few months ago and had an MRI on July 18th that revealed a 2cm AN.  We have talked with 3 Neurosurgeons and a Neurotologist.  3 doctors did not recommend GK and none of those doctors perform GK.  The 4th performs both Micro and GK and was 50/50 on which he would recommend.  We sent Mike's MRI, CT Scan and Audiogram to Mayo Clinic in Rochester.  They also were 50/50 on recommendation.  I was at Bible Study this week and sat next to a gal that had an AN removed 3 years ago.  Amazing!  She has been such a blessing and given much helpful information as well as directed me to this forum.  She had translab surgery to remove her 3 cm AN at HEI.  We sent Mike's records to HEI and are awaiting their call.

My question is why would any doctor hesitate to recommend GK over Micro when the patient is considered a viable candidate for GK?

Thank You,
Marilyn

[MDemisay]

The major reason that the 3 doctors who perform surgery (and not GK) recommended surgery, is because they would feel comfortable operating since that is all that they do.Do yourself a favor send his  scans to House Ear Institute to Dr. Friedman you will get a free opinion and also to University of Pittsburg Medical Center Dr. Douglas Kondziolka for a free mail consultation. They both are among the best in the business. They gave me each a free mail consultation both do surgery and GK.

You may note that I had my surgery done with Dr. Sisti at NY Presbyterian in 2004 and then when it grew back in 2012 I went to him again to have my GK. I had a 3.1 cm Acoustic  Neuroma at the time I had my surgery. I was petrified of having brain surgery again as I had it before in 1974 (for an AVM totally unrelated) with a long recovery period.

In 2012, I had 3 consultations ( one with Sisti, one with Golfinos and one with Kondzuilka)  I picked the original surgeon cause I went with my gut! A GOOD QUESTION TO ASK IS IF THIS WERE HAPPENING TO YOU WHO WOULD YOU TRUST? Both Dr. Sisti and Dr. Konzuika answered that they would go to the other. Dr. Kondzuika taught Dr. Sisti .They both have been in practice for 25 years. I live in NY.

In 2004, I panicked and didn't want to have surgery, so I stock piled my consultations (wasting time) and I got 14!!! This was way too many! The last option that I didn't take was to have GK in 2004. All the other docs except the last one had said "your AN is too large", what finally made the decision for me was that the last doctor (Dr. Noren) I visited didn't have enough experience targeting with CT scans.

Do your research and follow your gut, make sure you go to the one that your husband Mike feels the most comfortable with. Say hi to him for me, it's nice to finally meet another Mike!

Good luck you and he are on a long journey. I'll pray for you both if you'd like.

Welcome to the ANA forum, you will find many friendly patients here, this is a site that is rich with information and unbiased opinions. you'll feel like family here. It has been a boon to me! Don't forget to check out my blog "THE YELLOW FLAG"

Regards,

Mike

[MDemisay]

Marilyn,

"the YELLOW FLAG" is in the AN Issues section.

Mike

[MikeW]

Thank you for your insight and for your prayers.  We are in Nebraska.  The gal from my Bible Study had her surgery at HEI, so I immediately had Mike's records sent there.   I am looking forward to talking with their doctors.  Mike  has lost 100% of his "useful" hearing in his AN left ear.  He feels that his balance is getting worse.  We were going to wait until December to have whichever procedure done, but now Mike wants to have another MRI done because he is concerned that his AN could be growing.  I have also heard of cases where the AN was quite a bit larger than the doctors thought.  This concerns me for choosing GK if his AN is too big now, though GK seems like the best choice right now.
Have you heard of anyone having GK or Micro at Mayo Clinic?

[MDemisay]

Dear Marilyn,

The place for that question would be in the physician section.


Although, I personally went to the Mayo Clinic in Boston (on my long search in the summer of 2004) to consult with a Doctor who had just retired but he (I forget his name) thought my case was so extraordinary that he was willing to come out of retirement to do it! Something about having such an old AVM patient would have made him a famous doctor! There was one MAJOR factor about it though that stopped me dead in my tracks......about having surgery done there, his assistant fell asleep during the extensive interview! Imagine! I hope the physician got into a lot of trouble for that! That alone made me very nervous. Hopefully, the Neurosurgeon has long since retired by now.

I hold the Mayo Clinic in high esteem however, irregardless of a physician falling asleep during an interview. There are Centers of Excellence though and that I'm sure is one of them. Good luck to you and yes I'll keep praying for you and Mike.

Go to the Physician Section and ask that same question, I'm sure somebody on the board has a more favorable experience that they can tell you about.

Mike

Ps. How big is his tumor? A cane will help with balance. A fall with broken bones will only delay the treatment, I can tell you personally I'm not proud of it I have broken all of the bones in my right hand at least twice over the years.

Yes, there were quite a few symptoms that I totally ignored I call them my YELLOW FLAGS. People only get so many in one lifetime, do not ignore his.

[MikeW]

Dear Mike,

Thank you for the recommendations again.  I went to the Physician Section and was able to view some posts concerning Dr. Link - all seemed favorable.  We received a letter from him stating he has performed approximately 400 GK procedures on ANs.  I'm sure he has performed even more micro surgeries.  I think I understand why our local Neurotologist was so annoyed that we might do GK.  He said it would compromise future surgeries if Mike were to need them.  I have read posts where the scar tissue from GK ends up filling in the dead parts of the tumor and you end up having the same size of growth.  Then if the tumor continues to grow, Mike would be starting at 2cm.  Dr. Link did an article where he talks about doing Micro Surgery to remove most of the tumor, but not enough to compromise balance or facial nerve.  Then 3 months later he does radiation procedure.  Can I ask how big your tumor was when you had GK done in 2012?  MY husband's is 2cm.
I read the "Yellow Flag" post and appreciate your insight.  You better be careful, or you will have some of us calling you to set up counseling appointments-Ha!  Mike and I have gone through a lot this past 4 years with issues with his new business and ailing family members, so we started out this journey a little weary.  I am happy to say we have drawn closer to each other through these experiences.  I have done more medical research these last 4 years than I ever dreamed or nightmared.  I want to be informed, yet feel like I have information overload at times.  Ultimately, I agree with you that I have to trust all of this in God's hands. 

Sincerely,
Marilyn

[skipg]

Hi Marilyn,
When I was first diagnosed, and after the panic left, I went into the research mode. I consulted with numerous surgeons, radiation oncologists, and a neurotologist. I was fortunate that they did not try to convince me that theirs was the best treatment for me. Instead the options were presented along with the pros and cons and it was my decision to make. I was most impressed with several who worked together as a team to either surgically remove the AN or treat it with Cyber Knife. The neurotologist I last consulted with actually recommended Gamma Knife, Cyber Knife, and Novolis, in that order. I am scheduled for Proton Therapy in a couple of weeks. See my post in the radiation section.  The encouragement here is to do your homework and consult with as many specialists a you need to until you feel comfortable with your final decision. I am sorry you have to go through this but there is life with and after AN. And dont forget to take time out and relax.
Skip

[MDemisay]

Marilyn,

Dr. Sisti had cut it down to 1.3 cm from 3.1cm. In October of 2011 it had grown. I didn't pay attention to it, I merely had a yearly CT scan after my surgery. In January, after a scary interview with Dr. Sisti's radiooncologist. In February, I began my search for others who could give me a better outcome, before finally settling with my original choice at NY Presbyterian in June.

I was glad I did however, because my gut proved to be right all along, it was a difficult journey however, just as yours is, no doubt. When I recovered there were a number of balance issues for me to overcome (with the assistance of a cane and sneakers to more adequately "feel" the ground) as well as darkness to overcome. Eyesight becomes more keen as does hearing (I am single sided deaf) SSD. Flashlights and nightlights help at night.

The best advice that Skip and I can give is that that we've already given get the opinions , go with the gut and let God take it from there.

Mike

[MDemisay]

arilyn,

Correction to my last post 1.3mm from 3.1cm, sorry!!! The tiny bit he left was because he didn't want to cut the facial nerve! It grew to 1.8mm before Dead Irv was finally radiated!

Mike

[Sheryl]

Although, I personally went to the Mayo Clinic in Boston (on my long search in the summer of 2004) to consult with a Doctor who had just retired but he (I forget his name) thought my case was so extraordinary that he was willing to come out of retirement to do it!

Mike - Where is the Mayo Clinic in Boston?  I've lived in the area for over 60 years and worked in the medical field and can't recall.

Thanks,
Sheryl

[MDemisay]

Dear Sheryl,

The consultation I was talking about as my wife recalls was at John Hopkins in Baltimore, Maryland and not at the Mayo Clinic. Thank you for noticing that goof! The doctor actually fell asleep though ( that was a deal breaker) as it should be for anybody!

Mike

[It is what it is]

You are doing a great job researching the options.  I wish good things for you in whatever treatment you choose.

Karen