Phone call from House

[davjack]

I got my phone call back from House clinic. Boy that was fast. Spoke to Dr. Friedman. He was very nice. He told me my thingy is 1.3cm - smallish. He's definately not a fan of radiation. He said the failure rate is 1 in 5 for radiation. What does he mean failure rate?

I am still undecided. I'm going to my support group mtg. on Nov. 15 and Dr. Telischi from U. of Miami will be there to answer questions. Then I am seeing my GP on Monday to get authorization to see Dr. Antonelli at Shands. Not sure when I'll get an appt.

I'm trying very hard to just go one day at a time.
DJ

[Jim Scott]

DJ ~

Kudos to HEI and Dr. Friedman for the rapid response.  I would assume that Dr. Friendman was indicating that radiation treatment failed to halt tumor growth in 20% (1 out of 5) of AN patients. That might be his observation but I'm not sure it's the national rate.  Remember, doctors have their own biases, often based on their personal experience.  Dr. Friedman may have seen radiation 'fail' more often than other doctors dealing with acoustic neuroma patients, thus, skewing his opinion a bit.  However, I commend you on continuing your research while dutifully taking Dr. Friedman's opinion on radiation under advisement, as it were.  Try to be patient and remain focused.  You're doing fine.

Jim

[ppearl214]

He's definately not a fan of radiation.

At the symposium in Chicago this past summer, having met Dr. Friedman, he definately made no bones about his feelings about radiation and his lack of faith in the treatment option.  He verbalized this to a few of us.

DJ, one day at a time is definately the way to try to handle this..... and you are certainly doing your homework.  If the homework becomes too much "info overload", please try to take a step back... take a deep breath... then continue to forge forward.  The decision-making process in the AN "journey" can be very difficult when there are options laid out on the table.  Hang in there.

Phyl

[cindyj]

Hi, DJ!  The treatment decision is truly such a hard part of the AN journey.  I've said many times, that it would have been so much easier had I not had so many choices in the matter.  However, it is ultimately up to you.

Yes, you are right, Dr. Friedman is definitley not a fan of radiation.  My first conversation with him, left no doubt about that.  After talking w/ him, I met with numerous other doctors (ones who were willing and able to do either radiation or surgery).  I waited another six months before deciding on treatment type.  I made the decision about whether I wanted radiation or surgery first, THEN I decided which doc I wanted for the treatment I chose (which was surgery).  That doc did just happen to be Dr. Friedman.  I knew most docs had a bias for one type of treatment or another, so I made my decision of what I wanted to do, then picked out the one to do it.  Still, it wasn't easy

You're doing your homework and you will know what's right for you at some point.  There is no rush, as Phyl indicated.  Take your time and take some time away from it all if you can.

We're here for you, though!

Cindy

[leapyrtwins]

I remember Dr. Friedman from the ANA Symposium.  Seemed like a really great guy.

As Cindy said, treatment decisions are usually the hardest part of the AN journey.  They are also very personal choices - one size does not fit all - so you need to research your options and decide what is right for you.  Although I chose surgery, I respect the choice of those who picked radiation instead.  And I have to note that those who picked radiation are very happy with their choice - just as I was with surgery.

Your tumor is on the small side, and typically ANs grow very slowly, so you have time to make a decision.  As others have said, don't rush into anything.  Choose the treatment - and the doctor - you are most comfortable with and have the most confidence in.

Jan

[davjack]

Thank you all so much for your answers. I wish I wasn't so afraid. I feel like such a coward. I've lost 6 lbs. since Oct. 26. I have no appetite. I have insomnia. Did anyone else go through this?
DJ

[jaylogs]

I think we've all been through a myriad of emotions when dealing with this DJ. I am a newbie like yourself and it was only after I FINALLY made a decision on surgery and the type of surgery I was going to do and then setting a date did I feel better about things. I am sure as that date approaches (Dec 9th), I will start getting antsy again.  Part of my outlet is working out like crazy, staying active and try not to dwell on this too much.  When I do think about it, I head to this forum and start reading other people's discussions and it makes me feel better about things in some strange way.  But, my best advice is to try to release some of that pent up feelings in whatever way is best for you!! Good luck and keep posting/venting...we've all done it!
Jay

[jerseyboy]

Yes, those folks at HEI are just wonderful.  It restores my faith in mankind.  Yesterday I received a telephone call from Dr. John House of HEI, just several days after I sent my MRI.  He said that given that (1) my AN is so small at 4mm, and (2) I have no hearing loss to speak of, he suspects my serious and variable dizziness might even be unrelated.  He suggested getting a video nystagmagram (VNG) to measure my balance function.  I will pursue this.  He was really nice and thoughtful, and said certainly don't jump into surgery until I know what I've got.
JeffB

[CHD63]

DJ .....

I missed your post until now.  Want to add my welcome to the Forum.  It sounds like you have been doing your homework well.  As others have said, no one should pressure or sway you to a certain type of treatment.  When you have gathered all of your facts, at some point you will know what is right for you.

At the symposium this summer, there was a panel of 5 doctors, representing many different preferences for treatment of ANs (surgery, radiation, or wait and watch).  The moderator read case studies to them and then invited the doctors to share how they would treat (or advise to treat) each patient.  It was fascinating to listen to each one justify his position and yet the treatments were very different in some cases.  Therefore, even medical people do not agree on the best treatment and yet they were all experts and highly qualified physicians.

This is your decision ..... it's your head!

Best wishes as you complete the difficult decision-making process.

Clarice

[gingerbread6]

Hi DJ,

Welcome to the forum and this great group of supportive, caring people. I too am going through a lot of the same things as you. I was diagnosed with my an in July of this year. I have researched this thing to death! My an is considered small to medium size.  All I know is that it's somewhere where it doesn't belong and I opted for the surgery route. I had two very different opinions from two teams of docs in Boston. I opted for Dr. Peter Black in Boston at Brigham and Women's Hospital. He comes highly regarded in his field. The minute I met him I knew he was the man for me. He even wrote a book on brain tumors. I got it from Amazon and already read it. It's called "Living with a brain tumor." It is very well written in laymen's terms. I found it quite helpful.

I've lost weight and can't sleep well either these days. My surgery isn't until December 28th. This waiting game is the hardest part for me. Hang in there, do your research and you will make the decision that is right for you. I wish you well in your journey. We are here to help in anyway that we can. As Phyl always says, "follow your gut" it will never steer you wrong. You will know what's right for you when you are ready.

Also, if you have any support groups in your area through the ANA association by all means attend a meeting. I've been to two already and found them invaluable. You can send for the info on line through this website.

Take care,


Gingerbread6

[DR]

Thank you all so much for your answers. I wish I wasn't so afraid. I feel like such a coward. I've lost 6 lbs. since Oct. 26. I have no appetite. I have insomnia. Did anyone else go through this?
DJ

DJ,

Sorry for not posting earlier, I am still recovering from middle fossa surgery on Nov 4th.

Lets get something straight.  Do NOT feel like a coward!  A coward runs and hides at the first sign of trouble.  You are actively researching options, which is the exact opposite of cowardice IMO.  OK, now that we cleared that up... 

Keep researching your options and talking with doctors.  If at times you feel overwhelmed by the situation, take a few days off.  Turn off the computer.  Get outside.  Meet some friends for some fun.  Go see a movie.  Visit family.  Believe me, I was in the exact same situation as you in August.  A few people at this forum had the experience to make a similar recommendation to me.  And so that is what I did, I took several days off.  No research.  No forum reading.  Nothing related to acoustic neuromas, surgery, radiation, wait-and-watch... at all.  Only then did I start to feel in control again.

[kristin]

Oh...so been there, done that! It's been almost 5 years since my diagnosis (December 28th, 2004) and I remember those feelings of complete helplessness from that day until the day that I scheduled my surgery. I don't know what you believe spiritually or if you do at all, but I know that in the two months that I was researching my options, I leaned on God more than I ever had before. I don't know how I would have made it through that time without him.

Don't feel like a coward. This is scary! Once you make a decision, be it radiation or surgery...you'll feel a lot better! I love this site...you'll find cons and pros for both options here. Talk to all the providers you can. I think it was a good move (I'm kinda biased though!) that you sent your info to HEI. They are the best there...and do a few of these surgeries a week. I've heard fabulous things about Dr. Friedman too.

Kristin