Some Questions for the ANA Vets

[Ancora Imparo Girl]

Hi, I was just diagnosed this month after an MRI. The ENT diagnosed me and has now referred me to a surgical ENT and they say that surgery is in order. However, they don't seem at all concerned about giving me more information. They haven't denied information, they just don't seem willing to come forth with stuff. I've received 98% of my information online.

I was hoping someone could help me out with a few questions.

1. Is it normal to just refer a patient to a surgeon without really getting in depth about everything AN? Also, is it normal to wait this long for an appointment with a potential surgeon?
2. Some people have told me that after meeting with a surgeon that surgery is often scheduled very quickly afterward.
3. What types of medical preparation and tests are required before surgery? I.E. immunizations, EKG, etc.
4. My ENT told me that 9mm x 4mm was "big," but seeing others who have upwards of 4cm, mine seems small in comparison.
5. Is facial paralysis VERY likely after surgery?
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.
7. I can't imagine that brain surgery is cheap? Does anyone know what an approximate cost is? My insurance pays my whole hospital stay, but I pay 20% of any surgery costs? I fear that I will be in debt forever.
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?

Thank you in advance for whatever questions you can answer.

- Joey Mechelle

[epodjn]

Wow, that's a lot of questions, haha. And most of us have had them all at your stage of the AN game. I also gained most of my knowledge online. I think it's pretty common. There are just my experiences. I hope others will chime in.
1. I was referred to a surgeon without much info at all. Just told that he would tell me all I needed to know, which he didn't. I had to wait about a week to get into the surgeon.
2. I was diagnosed in Oct. of 08 but didnt' have surgery until Dec. because of surgeons schedule. AN's are very slow growing normally so speed isn't too important unless you are having unusual symptoms.
3. I had an EKG because I have heart problems but other than that and the usual blood test that was about it.
4. No your AN isn't BIG by our forum standards. Mine was 3.2cm X 4cm and I know there are many who have larger than that.
5. Paralysis is a hard thing to predict. My doc said no way would I have any problem with it. Then he ended up having to sever the facial nerve to get the darn thing out and I was totally paralyzed but have quite a bit of regeration in the past 18 months. I'm at a HB3 now.
6. If you can get a second opinion it wouldn't hurt but it's not an option for some of us.
7. My total cost was right around 100,000.00 but that included the hospital. Not sure what the break down was.
8. I had a very good recovery but I would think 6-8 weeks is about the least you would need. It also depends on the type of work. Mine was more physical than yours. You might get by with starting back to work at 4 weeks part time. Just my opinion of course.
Good luck,
Julie

[Tod]

Joey,

Welcome to the Forum. I'm sorry you had to find us, but I'm glad you are here now. You will probably want to order the free material from the ANA about acoustic neuromas etc. You will likely find it very helpful.


Unfortunately, not all doctors are really good communicators, especially when giving bad news. As patients, we do have responsibility to ask questions, but shucks, when you are told you have a brain tumor, the ability to think through all the questions you might have, tends to leave many of us bereft of words. At that point, it is really incumbent on the doctor(s), but like I said, they are not always good at that.

1. Generally, your ENT is not a specialist in ANs. The surgeon you were referred to is likely a neurotologist, which is a sub-specialty otolarynology, and generally a specialist in ANs. This is whom you need to talk to most.

2. It can be. However, depending on the size, location, current symptoms, and patient age, some people go into "wait and watch".

3. Probably depends on the hospital in terms of what and when. I did have a number of tests, including an EKG, scheduled all in one day. I also took the initiative to get an H1N1 immunization and make sure my dogs had no diseases (for my recovery period).

4. Others here know the relative  size classifications better than I do, but it seems to me that any brain tumor would seem big.

5. Depends on the location of the tumor, the competency of the surgeons, etc.

6. The House Ear Institute, Stanford, and perhaps others will provide free telephone consultations if you send them a copy of your MRI.

7. It ain't cheap. I won't proved the cost of mine since I had such an unusual experience.

8. Recovery is different from patient to patient. Under Post-treatment you can probably find a lot of postings about updates to provide a sense of the experiences of others. No matter what, your experience will be different.

I hope this is helpful. Others will likely provide much more information.

Welcome,

Tod

[Jim Scott]

Hi, I was just diagnosed this month after an MRI. The ENT diagnosed me and has now referred me to a surgical ENT and they say that surgery is in order. However, they don't seem at all concerned about giving me more information. They haven't denied information, they just don't seem willing to come forth with stuff. I've received 98% of my information online.

I was hoping someone could help me out with a few questions.

1. Is it normal to just refer a patient to a surgeon without really getting in depth about everything AN? Also, is it normal to wait this long for an appointment with a potential surgeon?
2. Some people have told me that after meeting with a surgeon that surgery is often scheduled very quickly afterward.
3. What types of medical preparation and tests are required before surgery? I.E. immunizations, EKG, etc.
4. My ENT told me that 9mm x 4mm was "big," but seeing others who have upwards of 4cm, mine seems small in comparison.
5. Is facial paralysis VERY likely after surgery?
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.
7. I can't imagine that brain surgery is cheap? Does anyone know what an approximate cost is? My insurance pays my whole hospital stay, but I pay 20% of any surgery costs? I fear that I will be in debt forever.
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?

Thank you in advance for whatever questions you can answer.

Joey Mechelle ~

Hello and welcome.

I'll try to answer your pertinent questions to the best of my non-physicians knowledge.

1.  Yes, sometimes.  If the ENT has little-to-no expertise with ANs, he will want to refer you and by doing so, you'll be closer to getting the help you need.

2.  Again, sometimes.  With such a tiny tumor, I can see no rush unless the surgeon is anxious to buy a new boat (kidding!)

3. Blood tests, EKG , lung capacity tests, things like that.  Lots of pre-op questions will be asked, too.  Your doctor should be able to be more specific.

4. Yes, 9mm x 4mm is tiny.  I don't understand why your doctor called it 'big'.  I'm guessing an unfamiliarity with acoustic neuromas.  

5. No.  The likelihood is well below 50%.  Although this is anecdotal, I had a very large AN (4.5 cm) and did not suffer post-op facial paralysis.  

6. Definitely get a second and a third medical opinion.  Mistakes can be made, even by trained physicians.  The more 'eyes' that see your MRI scan, the better.  Consider sending a CD of your MRI scan to HEI in California.  They'll review it for free and get right back to you with a diagnosis.  

7.  The cost of AN surgery can run well over $100,000.  However, most medical insurance plans will pay at 100% after you've reached your 'out-of-pocket' limit.   My limit was $2,500.  After that, Blue Cross paid everything at 100%.  I strongly suggest you check your policy.  

8.  Average recovery time is 6 weeks but that is with no complications.  Some take less, some much longer.

I have to suggest that with a small AN such as yours, you should definitely look into radiation treatment as well as surgery.  Although radiation is not risk-free, it is non-invasive and has a faster recovery time.  Don't believe the myths about AN radiation 'causing the tumor to become malignant' or that if it fails, surgery will be 'much harder' (it won't).  

I hope I've helped shed some light on these questions.  I'm sure others will attempt to offer their own answers, which may be even more helpful.  Please continue to use this website and the discussion forums as a resource.  We're here to help, inform and support you as you deal with this vexing medical problem.  Remember, we've 'been there' and can empathize with your questions and concerns.  Please let us help.  Thanks.

Jim

[cindyj]

Hi, Julie and welcome to the site!  The others have already said what I would have, so I won't repeat it   I will just add that you may want to contact the ANA - they can send you very valuable information related to AN's.  Between that info and hanging out here a bit, you will be very well informed prior to meeting with a surgeon. I know I really didn't even have to ask any questions by the time I saw the surgeons as I had learned so much here...really!

Your tumor is definitely on the small side and you should have plenty of time to make a decision.  I wish you the best,

Cindy

[tgillesp]

Hi Joey,
I am the person who was told she had an AN and then told she didn't.  The funny thing is...as of today, I still don't have a definite answer.  What I have found out from all 4 opinions was that they do see something.  The dr who originally read the MRI report said tumor (5mm), recommended surgery, and would hear of nothing else.  Of course he did say that the surgeon may recommend watch and wait with MRI again in 6 mos.  I have found all of my information on here because he really did not want to discuss other options.  After getting my information on here, (thanks to all the wonderful people who responded) I sent my films out for other opinions.  The other opinions have said that while they do see "something there", they cannot be convinced it is an AN because it is so small, which is why they recommend a 6 mo followup MRI.  I have another appt. tomorrow with a neurotologist for one last look, but also because I really need some help with my tinnitus (which is maddening).   Regardless of his opinion, I have decided to wait and see what 6 mos does. 

Sounds like yours is small enough and you have time to do your research.  I would recommend you continue to get all the advice you can.  Send your MRI films to Dr. Steven Chang at Stanford and House Ear Clinic for opinions. (see address below)

Steven D. Chang, MD
Department of Neurosurgery
Stanford University
300 Pasteur Dr., Room R-225
Stanford, CA 94305

House:
 Send the MRI scans by express delivery to:

House Ear Clinic
Attn: Acoustic Neuroma Website Consultations
2100 W. Third Street, 1st Floor
Los Angeles, CA 90057

Both called me with a free telephone consult.  It was worth the wait.  Otherwise, I would have paid hundreds to drive 8 hours away to be given the same information.

Call your insurance and find out how it is covered.  Do you have an out-of-pocket limit?  Do you have to go with in-network doctors?  etc...Start gathering information. 

I actually spent about a month researching, asking, and calling.  It has pretty much taken over my life.  But I now feel comfortable with the waiting 6 mos advice.  If it turns out to be an AN, then I think I am now pretty sure of what treatment plan I would choose.  That is a decision only you can make.

Sorry, I cannot answer any of the other questions, but I am sure you will get lots of good advice here.

I wish you the best and keep us informed.

Tracey

[leapyrtwins]

Joey -

IMO you desperately need to find a new doctor.

Your AN is small - not large - and radiation would most likely be a great option for you.  The size of your AN qualifies, and you wouldn't need much time off of work at all for the treatment.  So unless the location of your AN is an issue, you need to find out more about radiation.

I highly recommend you contact the ANA for their informational brochures - because it sounds like your doctor didn't give you even half the information he should have given you about Ans.  You'll find the ANA's information extremely helpful.

I got only one medical opinion when I was diagnosed with my AN, but it was from a doctor who does both radiation and surgery and there wasn't anything he didn't tell me about.

AN surgery is brain surgery - you don't want to jump into it lightly.  Definitely get another opinion - or as many as you need to feel comfortable.

Good luck,

Jan

[jaylogs]

Hello there and welcome!! I won't go through all the questions either because everyone else has given you plenty of great answers!  If you are like the majority of the people on here you'll have plenty of options to consider once you've gone over everything you can find.  Keep up with the questions though, the more the merrier (and yes, no such thing as a dumb question on here!) Let us know if you need more help with something, take care!!

Jay

[Ancora Imparo Girl]

WOW!!! You are all a wealth of information - and already I feel better about things.

Thank you so much!!!! I have a clearer vision of what needs to happen now.

I'm so glad I found you.

Thank you thank you thank you!

- Joey Mechelle

[Mickey]

Hi Joey! Your AN is considered to be small. For the most part AN treatment consits of 3 choices... Surgery, Radiation, Waiting and Watching. Depending on your symptoms and location and growth rate with that size AN your usually have much time to do your homework and come up with the best solution for whats good for yourself. Best wishes, Mickey

[CHD63]

Hi Joey Mechelle and welcome to this forum of supportive and caring friends .....

You have already received excellent answers to your questions.  Take a deep breath before diving in for more research.   It can be very overwhelming so sometimes it helps to step back and relax a little bit before continuing.

Most of us who have stayed on this forum are doing so in order to ease the fears and anxieties of the newly diagnosed.  I would venture a guess that the vast majority of us had a huge panic attack upon hearing the initial diagnosis.

My AN was over 2 cm at diagnosis and was one of the rare rapidly growing types so I had little time to make a treatment decision.

What are your symptoms?  Sometimes that will give an indication of how quickly treatment needs to be done.  Also the specific location of your AN is a factor in deciding what treatment is best.

Best thoughts and let us know how you are doing.

Clarice

[Ancora Imparo Girl]

Hi Clarice,

Thank you!

My initial symptoms were sudden hearing loss. I went from hearing in March to only 20% hearing in my left ear at the beginning of September. I have ringing in the ear and tinnitus and balance issues. I fall down a lot, but I've always chalked it up to being clumsy. And my headaches I've always associated with stress.

Here is my tumor, or as I like to call it, CiCi (short for candy corn because that's what it resembles):

http://1.bp.blogspot.com/_bLGhvpmRnGg/TI_grbFGQYI/AAAAAAAAACo/avWFtLtLV_Y/s1600/Joey%27s+tumor.jpg

Here is another questions for everyone ...

Can I just give a picture of the MRI to a doctor for a second opinion? Or do I need to order all the results from the MRI? What format does that come in? Electronic or film? And generally, how much are copies of the MRI? Should the MRI place give them to me for free? I want to send it off for a second opinion.

Thanks for everyone's help.

[Pembo]

My MRI's are on a disc. I ask for a copy when I finish the appt and it's always free. Good luck with that second opinion. I had a 4cm AN so I definitely think yours is small.

[CHD63]

Thanks for the additional info on your symptoms.  It sounds like the little bugger is in a spot causing you the hearing and balance issues.

I am not a doctor but from what I can see on your blog picture, "CiCi" does look like a piece of candy corn.

Re:  the MRI pictures ..... after each of my MRIs I mail a CD ROM of it to my neurosurgeon, as well as ask for an additional copy to keep for myself.  The reader is packed with the images on the CD ROM.  Sometimes they give me the extra one for free, sometimes I have had to pay $10 for the additional one.  Other people on the forum may have different experiences.  Ask at your imaging center for the additional copies to send to other doctors for second, third, etc. opinions.  Even if you have to pay for them (and the postage to mail them), it is extremely worth it.

Best wishes and let us know how things are going.

Clarice

[rjbarker]

Joey,
A few things come to mind. First, it's a SMALL tumor, you have time to gather info, research your problem. Look at ANAUSA.org for starters, follow the links. Don't get rushed into surgery, check on radiation, maybe at IRSA.org. If you opt for surgery, be sure it's with someone who has done a lot of these things, and I don't mean just 25 or 50. Go for an experienced medical team at a major medical center. Last I heard, surgery averages about $100,000. Radiation maybe half that? More and more ANers go for radiation these days in spite of the old-style gloom and doom talk by some surgeons. I do the newsletter for the NJ Chapter of ANA; maybe take a look at ananj.org. There are, I think, some good articles for you there. If you're close enough to NJ, consider our conference Oct 24. Most importantly, stay "cool" and good luck.
d***