Different Opinions from Neurosurgeons

[CelesteMarie]

Hello, I am new to posting on this forum but I have been following it since I was diagnosed with an Acoustic a Neuroma 2cm on left side 12/21/15. I have lost all of my hearing In the effected ear. I have bad tinnitus, dizziness & some balance issues. I have been to 3 doctors for consultation. Two were neurosurgeons and the third neurotologist at Tampa Bay hearing and balance center. The first neurosurgeon said gamma knife & told me if I wanted surgery he would make me sign something to say I wanted it. He even went as far as to have the gamma knife center call me to schedule the procedure when I told him I was getting other opinions. I was not happy with that experience. The other neurosurgeon I saw yesterday recommended surgery, translabyrinthine due to my tumor being so close to the brain. He stated they like to have more space to work in to safely treat with radiation. He came highly recommended from this forum & is very experienced. The doctor at hearing and balance center would not give recommendation, only gave pros, cons, risks to both treatments. He said its my choice. However he did recommend that I have another MRI in 6 months & that I see the neurosurgeon I had my appt with yesterday as they treat these tumors quite often together in surgery or Cyberknife.
When I first heard of my tumor I did the most research on the surgery & was leaning that way because I just wanted it out. Then after my first appt with neurosurgeon, I started to research radiation more & was kind of leaning that way. Now the opinion of the most experienced surgeon yesterday was surgery. I'm so confused. Thinking of getting another opinion to see if 2 will agree. Has anyone else dealt with such opposing opinions? If so, did you seek another opinion? How did you come to your decision & what did you choose & why.
Sorry for the lengthy post. I just feel a little lost. Thank you!

[CHD63]

Hi CelesteMarie and welcome to this forum of new, caring, supportive friends .....

As you well know, making a decision for treatment or watching/waiting is a highly stressful time.  If you have not already done so, please send for the free informational materials from the ANA.  See:  https://www.anausa.org/component/rsform/form/20-ana-contact-us-copy

It is important that you obtain your opinions from doctors who are highly experienced in the treatment specifically of acoustic neuroma, not just brain tumors in general.  That being said, the determination for treatment (or watching) many times is based on which doctor in whom you have the most trust.  Translated:  the doctor who treats you like a whole person, not just an AN patient.  By that I mean, he or she understands your angst during this time of treatment decision and will take the time to answer any or all of your questions with compassion.

Many thoughts and prayers as you walk through this phase of the journey.

Clarice

[Blw]

I would probably suggest visiting a representative of all the types of treatment--see the surgeon with best reputation (somebody at House), talk to a cyber knife place (usually Stanford with Dr. Chang is the universal expert) and then talk to a gamma knife person, many places, but Lunsford at Pittsburgh is the best. The more you read and talk, the clearer your choice will become. There are multiple factors that will guide your choice, which are specific to each patient. The choice is arguably the hardest part, which tells you all the treatments are effective, you just have to find the one that works for your situation.

[v357139]

If you feel like you need another opinion, you should get one.  Pick surgeons highly experienced in acoustic neuroma.  I found that different doctors do have different opinions, based on what they are most comfortable with.  It is a good idea for you to review the pros and cons of each method, and do not make a hasty decision.  It is your decision, based on their recommendation.  I would not be comfortable with anyone who seemed to be forcing me one way or the other.  Why don't you get the second opinion and then let us know what you are thinking.  Best of luck, you'll get through.  We're here to help.

[CelesteMarie]

Thank you all for your kind words and advice. I guess I thought after 3 appointments with different doctors I would be closer to a decision. I actually was leaning toward Cyberknife until my appt yesterday which showed me a different view of my MRI & different perspective. I Didn't expect them all to be different. I am really impressed with the last 2 that I saw though. They each spent an hour with us, took their time in answering all of our questions and made me feel like a person, not like a number or dollar sign like the first doctor. I have the ANA info packet. My husband ordered it right away. In addition to that, The information on here from everyone has been so helpful. It's nice to know that others know how you feel & your not alone in the stress, confusion & fear. Maybe a 4th opinion is needed, I just want to feel good about my decision & im not there yet.

[john1455]

I believe that one of the most common mistakes patients make is they think a consensus is necessary to arrive at a solution. It doesn't work that way in the health sciences because of the diverse training, experience, and background of the doctors involved. No two professionals will have the exact training, experience, and expertise. Therefore, differences in opinion will be the rule rather than the exception. Just as there may be many ways to get from point A to point B, so it is true with treatment choices. I know from experience that this is the reality as I am a retired healthcare professional with 32 years of experience. Yes, differences in opinion do create confusion in patients because that "one answer" patients are looking for is elusive, thereby causing confusion. Seek out the best professionals in the field (preferably those with both radiation and surgical experience to avoid bias), weigh the advantages and disadvantages of each treatment and their post op side effects, and then decide if this is what you will be willing to live with. That will help you decide what to do regarding treatment. No one will tell you which treatment to choose because that is a decision only you can make. You know yourself better than anyone and thus, only you can make that final choice.

[Blw]

Among the best questions to ask is what happens if the chosen method fails? If it is radiation, of course failure is regrowth, and a slight chance of collateral damage to the facial nerve. If it is surgery, all of the risks of major surgery factor in, plus sometimes surgery can fail and you get regrowth, or you can have damage to the facial nerve (in addition to some particulars of brain surgery such as a CSF leak). I tended to focus heavily on the downsides during my screening, including if there is regrowth, what can be done about it.

[MHope]

Thank you all for your kind words and advice. I guess I thought after 3 appointments with different doctors I would be closer to a decision. I actually was leaning toward Cyberknife until my appt yesterday which showed me a different view of my MRI & different perspective. I Didn't expect them all to be different. I am really impressed with the last 2 that I saw though. They each spent an hour with us, took their time in answering all of our questions and made me feel like a person, not like a number or dollar sign like the first doctor. I have the ANA info packet. My husband ordered it right away. In addition to that, The information on here from everyone has been so helpful. It's nice to know that others know how you feel & your not alone in the stress, confusion & fear. Maybe a 4th opinion is needed, I just want to feel good about my decision & im not there yet.

Hi! I'm just curious what did you en up deciding? I'm
In the same boat trying to decide. How old are you? And what size is the AN?  I am learning that the hardest part of AN is making that decision.  Good luck!

[v357139]

Yes let us know what you're thinking Celeste.  And where are you at MHope?  Let us know how we can help.

[MHope]

Just had GK this morning at UPMC. Couldn't be happier with my decision. I simply did not want major surgery when I had a choice not to. Procedure was as smooth as can be, and didn't feel a thing.
Good luck to everyone making a decision.

[v357139]

MHope that is great.  Very happy for you.  In the end we all have to make the final decision, and you made yours.  Radiosurgery and microsurgery are BOTH great options, as long as an experienced doctor is at the helm.  Congratulations to you.