My neurologist at Barrow is Dr. Randall Porter. The radiologist/oncologist is Dr. Igor Barani.  Dr. Mark Syms is the neurotology doctor dealing with my hearing loss. The three of them make up my team of doctors.

Mayo does not take Medicare, I am not sure about other insurance. I decided on Barrow because they are doing a lot of research on brain tumors, including acoustic neuromas. Also top doctors in the field.

Any questions you have, please feel free to contact me.

Gary

Hi CraftyOne,

I had Cyberknife at Barrow in April 2018 and I am very happy with the doctors, nurses, and the results. The problem with Mayo is that they do not take insurance. You have to pay and get reimbursed from your insurance company. At least that was the way they did things a year ago. Barrow and Mayo are wonderful facilities. You cannot go wrong with either one. If you would like to email me, please do. We can also talk on the phone if you would like. Take care,

Gary

Hi!  I am sorry you are hear and that you are so young dealing with this.  I am 51 and had single dose GK treatment.  My treatment, everything went perfectly.  I was under the care of Dr. Jason Sheehan who is in the ranks with Sisti and Dr. K.  I also have two AN new friends, one went with Sisti and one Dr. K.  Both of them had good experiences and doing well.  They are both in their 60s.  I have had really no issues except recently started experiencing vertigo/dizziness.  That seems to be common in some after GK around the 6 month mark.  I do also have fatigue, hearing loss and tinnitus BUT I had all that before GK,  it just seems a little worse at the 6 month mark.  I have had followup mri, I am in the swelling stage but also showing sings of "decreased enhancement" of tumor and Dr. Sheehan believes it will shrink over time!  I do know a 38 year old who had GK and is doing well 3 years out.  She did lose her hearing, but loss of hearing just seems to be part of this tumor no matter the treatment.  I wish you the best and feel free to message me! 

I will say, I am a hiker, backpacker, and run, etc.  and while I watched and lived we did many backpacking hikes to include part of Longs Peak (13,500 ft) in Colorado with no issues. I also hiked 25 miles in Utah 5 weeks after GK!!   I have even done local hikes in North Carolina but am very cautious and slow during this dizzy stage.  I continue to jog, but again on flat even surfaces. 

I'm not a doctor, but have done lots of research. Assuming the 2.4 cm dimension has been done correctly, my "summary" would be a 25% or less chance of preserving hearing. Hearing is not the big issue. Not damaging the facial nerve is the big issue. What chance were you given of no facial nerve deficit?

Do you know your hearing test results - PTA and word recognition?

There's no rush. Have you thought about waiting 6 months from diagnosis to see if the tumor is still growing. The clear majority have already stopped growing before diagnosis.

I just got a platinum eye weight last week. The doc and I talked about it being reversible. I do not know the answer to your specific question, but I would think you can find another doctor willing and properly trained to remove your weight if they think the weight is no longer a necessity. My doctor is a plastic surgeon/ facial reanimation doctor in Charleston, SC.

I'm based in Ohio. I was told the same thing when my eyelid weight was placed. I have to admit my surgeon did a fantastic job. I do not have pain in the area nor has there been any movement of the weight. I think the issue doctors have with removing it is that my facial nerve and muscle control healed with the eyelid weight in place and if they take it out there's a chance I will no longer be able to close my eye all the way. I think this is a fairly small risk considering that I can close my eye fully upside down. Even with the weight in, I do not blink.

But I am experiencing professional setbacks due to the weight being there. If I knew it was safe to approach the magnet, I would leave it alone. But right now my options are to stay away from magnets I need to work on, or try approaching and risk either the eyelid weight heating up next to my eye, or risk the weight being magnetically attracted to the NMR magnet. Given those options, I would prefer to stay away. But this is the field I trained in and what I do and staying away is not a long term plan. It will limit my job opportunities if/when I change employment.

So at this point, I think it's best to just get the weight removed. But now the issue is finding a doctor who I trust to do it.