ANA Discussion Forum
Useful Information => Physicians => Topic started by: Anne S B on August 01, 2019, 11:11:36 am
Six years after I had Cyberknife surgery at Johns Hopkins in Baltimore, my acoustic neuroma has grown slightly and my doctor here in Bethesda (Wade Chien) has referred me to a Dr. David Lin, neurosurgeon to see about surgery. I am wondering if anyone knows about either of these doctors, or if they can recommend someone else in the immediate Washington DC area, preferably in Bethesda, Maryland. My husband and I are in our 70s and no longer find it easy to go to Baltimore for the surgery.
Thank you for any help. I am feeling very upset at the moment.
May I ask how large your tumor is? How have your symptoms progressed?
My tumor grew 2 mm after six years (no growth previous MRI which was 2 years ago). It is now about 1.7 cm by 1.4 cm. I don't know whether to have another MRI in 6 months or go ahead with the surgery. Would like all doctor recommendations for the DC area, but not in Baltimore. My doctor can do surgery in Baltimore if I wish, but I would prefer staying in DC?MD.
Hi Anne S B .....
Keep in mind there is a 1-2mm margin of error with MRIs so it is possible your AN has actually not grown but just changed shape. If your symptoms have not changed and/or not bothersome, I would vote for waiting another six months for a repeat MRI.
You, of course, must make your own decision in consultation with a physician you trust.
Best wishes. Clarice
Thank you so much for this encouragement. You are a true Hero member. It's true that I am not experiencing any new symptoms. I'm almost totally deaf in the one ear. That's not new. And I lost nearly all my eyebrows after Cybernife :( , but those are all old symptoms. I know doctors have a vested interest in doing what's best for their patients, but I also know that they make more money doing surgery than just watching and waiting. My one worry is that I'll be 6 months older if I opt for waiting, and I'm already 74. One other thought. This is the first MRI I've had with the new "safe" dye. Could that make a difference. The radiologist who read my MRI called it minimal change, but the doctor seemed to put more emphasis on the new numbers.
Thank you SO, SO much. At 74 I already have a host of other issues and the thought of surgery has put me into a depression! Luckily I have a lovely, supportive husband and family.
Hi Anne S B .....
Hopefully no surgeon would recommend surgery just to make money..... :( That being said, if you already have a host of other issues, that needs to be a major player in your decision regarding surgery of any kind.
I do not personally know, nor have I read anything about the safer contrast material and the effect on interpretation of MRIs. I would have to presume a well-qualified radiologist would factor that in on his/her interpretation. It increases the accuracy of a report by using the same MRI machine and the same radiologist from one test to the next. Even surgeons will sometimes disagree with a radiologist on the size of a tumor, just by the way they measure it.
All that being said, there are many centers around the US with high volume treatment of acoustic neuroma, who will do free evaluations of your MRI. That might be something you could consider. And/or, get the evaluation from a neurosurgeon (preferably one with vast experience treating ANs) and use that to help make your decision.
Best wishes, Clarice
One of my many concerns is how the surgery to remove my tumor would affect my eye. I have a rare eye disease, ICE, that has left me with one good eye, the eye on the side of my neuroma. The doctor I have been seeing says he would advocate for a removal through my ear since I've already lost my hearing after Cyberknife. I'm scared to death of the implications for my eyesight post surgery. I am meeting with a neurosurgeon the end of the month who works with my doctor. Both doctors have impeccable credentials and are both affiliated with Johns Hopkins Hospital. Additionally I have no new symptoms, I'm 74 years old and I have other health issues, including scoliosis. I have decided to consult my family internist who has treated me for 20 years, and will also seek council with another ENT who I see from time to time. What I really am asking for is clarity. I would like to "watch and wait" but not if this means a more difficult outcome in the future. And as I think I mentioned, the radiologist who read the initial report wrote "minimal" change. I am so grateful for this forum as I feel like no person without acoustic neuroma experience really understands.
Thank you to one and all.
Between neurosurgeon or radiologists when it comes to determining if and by how much a tumor has grown, I would give more weight to the radiologist. (Better still, get your MRI on CD and check the measurements yourself!)
You've waited 6 years and the growth is within the measurement error. The growth, if any, may have also been directly after the Cyberknife. If at all possible, I would wait 6 months to get the same machine to make a measurement and the same radiologist to make an evaluation.
I am grateful for the continued advice. This is far from an easy time for me. Later this week I will be consulting with another ENT who will be able to review and compare my images. Next week I will meet with my internist for his advice. Neither of them are able to do more than give me an opinion, but they KNOW me. I wonder how fast a tumor might grow in someone 74.? Does anyone know if neuroma tumor growth slows with age? I used to take a daily baby aspirin (until the latest study changed medical thinking about it helping those with no heart disease). Now I read that some think that aspirin might slow neuroma growth. But since I also have a hiatal hernia and heartburn I'm hesitant to take aspirin again. Any advice is more than welcomed. Thank all you good people!