Some Questions for the ANA Vets

[msmaggie]

Hi Joey,
My ENT is a kind, well-respected dr., but the AN (or meningioma as it turned out to be) was something he knew he was not going  to deal with because he knew there were more qualified drs. in the area.  He immediately recommended the best he knew, but was patient and available for all my questions.  You have gotten some good advice from the forumites.  Send a CD of your MRI to anyone you can find!  The more you talk to drs., the more knowledge you will gain about your situation.  The decision will be yours to make, and you need to feel like you have a handle on things.

Good luck and stay in touch!  All questions are welcome and valuable.

Priscilla

[Tumbleweed]

1. Is it normal to just refer a patient to a surgeon without really getting in depth about everything AN?
Your ENT obviously punted -- that is, they didn't know enough about ANs to inform you so they sent you to a surgeon. I had the same experience with my otoneurologist. He made it seem like it was a dire emergency and I needed surgery immediately, which wasn't true. Your AN is small, not large. You have plenty of time to research your options, you have other options besides surgery, and you should not rush into having surgery -- which, like the other treatments for ANs, is irreversible -- until you have deemed it is the best course of action for you personally to take. That requires research on your part. Otherwise, you're just rolling the dice and essentially giving up your power of attorney regarding your body to an uninformed doctor who made a knee-jerk recommendation.

4. My ENT told me that 9mm x 4mm was "big," but seeing others who have upwards of 4cm, mine seems small in comparison.
Your AN is definitely classified as small. Your ENT does not know what he is talking about. Please, for your own sake, find a new doctor. That's strike two for your doc.

5. Is facial paralysis VERY likely after surgery?
It depends on the tumor location, the tumor's size and the integrity of the facial nerve's function before getting surgery (i.e., an already damaged facial nerve is more likely to suffer further damage to function on account of surgery). That said, the risk of damage to the facial nerve is generally considerably higher with surgical resection than with radiotherapy.

6. Do you recommend I get a second opinion? I just read on this forum of a person who got a second opinion and discovered that she didn't have an AN? How is it possible to be diagnosed with a tumor and then told that you don't really have one? That freaks me out.
DEFINITELY get a second (and third) opinion! Doctors are not gods; they make mistakes. Although manageable, having an AN is a very big deal. Don't trust your future to one person, no matter how knowledgeable.

8. What is average recovery? I don't have much leave from work — about 80 hours as of the end of November. And I don't have any other financial resource. I am worried about loss of income and would like to get back to work as soon as possible. Is it unrealistic to think that I will be back at work full time within a month of surgery?
I can't address this question, as I had CyberKnife (radiation) treatment instead of surgical resection (cutting the tumor out). But you should look into radiation treatments as an alternative if for no other reason than the downtime is much less than with surgery. Research GammaKnife, CyberKnife and standard FSR (fractionated stereo-tactical radiation).  There is much information on this forum about all these types of treatments.

The most important thing for you to remember is this: you are the boss! Don't let any doctor push you into doing something before you're ready. You make the decisions. It's your body. You have to live with the (lifelong) consequences of your decision. If you do your homework and make your choice deliberately, you will come through this just fine.

We're here to help.

Best wishes,
TW

[Lizard]

Hi,
Just wanted to welcome you to the forum, as you've seen above everyone is very knowledgeable and friendly.  Please do not hesitate to ask away!.  My advice would be to make sure you get a Surgeon or surgeon team with a lot of AN experience! 
Good luck to you and please feel free to ask away, no matter how insignificant you feel the question may be.
Take care,
Liz

[Ancora Imparo Girl]

Gosh!!! Thank you all so much! This forum is such a benefit to everyone suffering from an AN! Your guidance and support means so much to me. I know how a clearer vision of what I need to do, and how I should proceed. I hope when all is said and done, I will be armed with powerful and helpful knowledge so I can also help people.

I look forward to more interaction with you all over the next several months.

Fondly,

Joey Mechelle

[Seal]

Hi Joey,

You've already received some excellent advise here so I won't repeat anything.   However, I see that you are in Tulsa, OK, and you may have fewer options in terms of qualified opinions there locally.   So please take advantage of the suggestions that are at your dispoal ie: Stanford and House Instititute in L.A. for easy second opinions.     With the very small tumor that you have, there is absolutely no need to rush or make a quick decision anytime soon, but when you do, please go with a surgeon who has done 100s of these operations, not someone who has done a couple.      You are far enough west that a jaunt to House Institute is easily doable.     Here in New England, we are blessed with many more options all within four hour drives.    My surgeon has done over 1000 of these exact AN operations, and the others that I reviewed also had done 100s.      So if radiation does not work out, be sure to vet the final surgeon that you choose and DON'T settle for less.      After a year and a half, I am back to life at full throttle with a wonderful wife, three beautiful kids, and even biking, running, and enjoying life.     There is life after an AN !!!

Steve

[Shan1014]

Hello,

I am a little late jumping in here and the advice others have given has been excellent.  The only thing I wanted to add is to not be afraid to be the squeaky wheel here.  Ask, ask, and ask some more about who to go to, who knows what, and yes get more opinions if needed.  I know that is easy to say when you are talking to someone else.  I didn't do it, or I should say that I never felt I had to.. I was completely comfortable at every turn as to the type of care and experience I was getting.  I think I learned to trust that because I had some bad experience prior to getting diagnosed, that and ....... something just didn't fit, or red flags - what ever you want to call them.  But I know the difference now.

I had a golf ball size AN diagnosed at the end of February and in for surgery in early March.  It took me awhile to recover and then the darn thing grew back.  I just finished radiation today with the Novalis Tx machine.  If you are interested, I have a website that I have logged every step of my journey thus far on.  Some of it may answer a few of your questions too.  mymediabandit.com/

I wish you the best of luck.  Above else, be comfortable with your doctor. Best wishes
Shannon

[Tumbleweed]

Joey:

Email Dr. Steven Chang (Stanford Neurosurgeon and leading CyberKnife practitioner) at sdchang@stanford.edu. He will review your MRI for free and consult you by phone with his recommended course of action.

You can also call House Ear Institute in Los Angeles and ask to speak with Dr. Derald Brackmann. He developed many of the modern techniques for brain surgery. He will also review your MRI and give his recommendations for free.

Finally, I would call the University of Pittsburgh Medical Center, which facility was the earliest adopter of GammaKnife and arguably has the most experience with that type of treatment. I think they still offer free consultations there (via mail), too.

If you take advantage of all of the above free services, you will have leading-expert advice from doctors specializing in three different types of treatments for ANs: surgery, CyberKnife (CK) and GammaKnife (GK). Your only cost will be for postage and phone calls, and you will have a great perspective on your available choices for treatment. At that point, your decision on what is the right course of action for you personally should begin to gel.

Best wishes,
TW