Gamma Knife vs microsurgery,the risks, Two perspectives

[CA Marti]

Hi Everyone,

So I'm technically in the watch and wait but I'm going to treat this soon either way after my next MRI scan in November. My vestibular schwannoma is currently 10.5 mmX 8.5mm X 6 mm in IAC on right side.  I met with two different neurosurgeons so far with two very different opinions. I thought I'd share what their thoughts were in case this may help other people as well.
     I first met with Dr.Friedman who said that he would absolutely not do gamma knife and would suggest the retrosigmoid surgery for my tumor if it grew. He stated that the risks for my situation with the retrosigmoid procedure would be less than 1% for facial nerve damage in his hands, and a 45% chance of hearing loss. He also stated that he thought the risks of gamma knife were 1 in 1000 for the chance of the tumor becoming malignant at some point, and for this reason, he never suggests gamma knife. He also stated that if gamma knife didn't succeed in controlling the tumor, it would make surgery more difficult.
     The second surgeon I met with was Dr. Theodosoupolos from UCSF. He said that he would chose the gamma knife radiosurgery over the microsurgery for my particular case. He stated that the tumor control rate with radiosurgery is 92-93% and that there is less than 1% chance of facial nerve damage and that less than 1 in 10,000 patients have their tumor turn malignant. (So, this is a very different statistic than the 1 in 1000 chance Dr.Friedman listed)
He stated his risks with microsurgery are 5% or less chance of facial nerve damage, 80% chance loss of hearing, less than 1% chance of stroke. He also stated that the gamma knife surgery was more accurate than cyberknife because of it being bolted to your head and because it is accurate within 1 mm. When I said so it's your opinion that gamma is more accurate than cyberknife he responded that it wasn't his opinion, that it was a fact.
     At this point I haven't decided which option I would chose. The nagging feeling I have about radiosurgery would be that the tumor control rate is 92-93%, which gives you a 8% chance that the tumor would grow at some point. If it is only 1% chance of facial nerve damage, then that is the same risk as retrosigmoid with Dr.Friedman but I have a much better chance of tumor control with surgery. So far I am still weighing the options and I have a few more consultations coming up.
     I would be very interested to know what helped everyone else decide between radiosurgery and microsurgery. Everyone says it is an individual choice, and I understand that, but I'd be interested in what the factors were that helped you in making your decisions. Thanks so much for your input.
CA Marti

[notaclone13]

I think surgery is the preferred treatment for younger folks. You don’t mention your age, but I think it is an important factor in the decision process.

[Greece Lover]

Is Middle Fossa an option for you? Some surgical centers don't do a lot of it, but it might be worth finding out because for those with experience it can give better results in terms of hearing preservation.

[CA Marti]

Notacione13 and Greece Lover,

     Thank you for your responses. I am 51 yrs old and now have very good usable hearing in my right AN ear and my only other major symptoms are some tinnitus, and occasional eye twitching which may be stress related. Since my last post I have spoken to Dr.Schwartz and received some exciting new information regarding my tumor and also new insight. He showed me a closeup of both of the IA canals and explained that his opinion is that this tumor will probably not grow. He didn't guarantee it of course. He showed me how my right (AN side) showed an enlarged canal but that the tumor is much smaller than the canal is, so he deduced that this tumor probably swelled and was bigger at some point and then shrunk. He also said how some tumors go through phases of enlarging then shrinking. It was the best news I have received so far and it was like hearing from an Angel.
     At this point I am content with watching and waiting until my six month scan. My original plan was to wait for at least three months. I of course would like to preserve my hearing but I'm not willing to have treatment solely for that purpose. I know middle fossa has a better chance but I'm too scared of risking my facial nerve, I'm not much of a gambler. I know there is a risk of losing your hearing with any type of treatment. With retrosigmoid in the best hands my chances are 45% of hearing loss (complete hearing loss I believe) so I feel my best options are to wait until I see lots of growth or new changes in my hearing and other problematic symptoms. I know middle fossa would be a good chance to save my hearing, but after a previous ear surgery already my preference would be against surgeries if I can help it. By the way, I am a musician, that is my profession, so hearing in my right ear is very important but I feel I want to take the most conservative approach especially with this new information about my specific tumor.
     Dr.Schwartz was not as against gamma as Dr.Friedman, by the way. In general, I've found that getting multiple opinions really helps. At first it was confusing, but after putting the various opinions together I was able to get a better feeling for what I think I should do. I'm much more hopeful now, cautiously hopeful, but this has enabled me to sleep better at night.
Thanks, as always. for your generous input.
CA Marti

[notaclone13]

That is great news! I hope and pray that your AN does not grow and you never have to decide between surgery and radiation.

[CA Marti]

Thank you so much. I am hoping and praying as well and I'll keep everyone informed after my next MRI in November. Thanks for your support.

[Greece Lover]

That's an amazing story about the tumor growing and shrinking and them seeing evidence of that. Wow!

[CA Marti]

Yes, I was really not expecting to hear this news. It was very clear and understandable the way he showed me my left, normal ear scans of my canal, and how it looked much narrower than the right (AN) side. He then showed me the canals side by side and it was obvious that my right canal was much larger. He then showed me how the tumor was smaller than the canal, which I wasn't aware of. I just assumed my tumor was bursting out of the canal, so this also was welcome news. Of course, you never know what the tumor will do, so I'm definitely not in the clear yet, but I'm more hopeful than I was before. I'm not surprised that there shows evidence of it being there for a long time since my hearing had declined so much over the last 10 yrs. There was a slow, progressive hearing loss in the right ear but I just assumed it was from my other ear problem (the otosclerosis). I'm still researching options and have a few more consultations, but I'm also hopeful that the tumor wont grow, fingers crossed.
Thanks for your support.
CA Marti

[CA Marti]

I just wanted to update this thread. I just received good news from my second 6 month mri scan. The results were “no significant change in size.” The current measurements are: 10 X 8 X 6mm. So far, Dr.Schwartz’s prediction was true and I’m happy to stay on the watch and wait approach.




Marti

[Janoffh]

That is terrific news. Congratulations!

[CA Marti]

Janoffh, Thank you! I’m very relieved. I see you are also on the watch and wait list, congratulations to you as well, and I wish you continued success.