Second Opinion - More Confused

[lrobie]

I finally scheduled and went to my second opinion appointment at the Cleveland Clinic.  I've been followed by UPMC's Dr. Gardner and Dr. Hirsch since my diagnosis in 2009.  At my annual MRI at UPMC, I was told that my tumor grew and they felt that it was best to decide on a treatment.  My current symptoms are some hearing loss, tinnitus and balance issues.  Every so often, I also get this tingling feeling in my tongue.  I'm not sure if it's related.

Anyhow, I first met with Neurosurgeon Dr. Lee at the Cleveland Clinic.  He told me after viewing my MRI's that my tumor had only grown 1 mm.  He showed me the MRI from 2010 which measured 8 mm.  I tried to explain that the growth appeared between 2010 and 2011.  I felt like he blew me off with what I was trying to explain by just saying that MRI machines are different and I could have been laying in a different position from year to year.  His recommendation was observation and an MRI in one year.  I asked him what type of surgery he does and he only does sub-occipital and that I would lose my hearing from this.  He said I should enjoy my hearing while I can and while I'm still young because I will definitely lose it, by surgery or by waiting.  I was quite surprised by this statement because I have read many posts where people who have had surgery don't always lose their hearing.  So then I thought maybe he was telling me this because he does the type of surgery that they definitely cut the hearing nerve.  When I researched it later, I found that the type of hearing he does, people don't necessarily lose all hearing.

My next appointment that day was with Dr. Chao, the radiation oncologist.  I explained to Dr. Chao that I thought that Dr. Lee mis-read my MRI's.  He said he may have been off 1-2 mm.  Well that's a big deal to me, but he brushed it off as well.  After going over a lot of information that I already know, he said that he would not recommend radiosurgery for me because I'm still young and there is a risk of a new tumor being malignant.  He said that if I was older, he wouldn't hesitate about doing radiosurgery.  I had read some things about the malignancy part, but I didn't know if there were any actual findings on that.  When you hear it from the radiation oncologist, that scares you because you think they should know.  Anyhow, he said that he agrees with Dr. Lee's recommendation...observation. 

So now I'm confused.  I have one set of doctors telling me I should go with Cyberknife or Mid-Fossa Surgery and the other set telling me to just observe.  I think I may send copies of my MRI's to House and get a third opinion.

Does anyone have any other advice?  Has anyone had experience with the Cleveland Clinic?

Thanks,

Lisa

[CHD63]

Ahhhhh, Lisa .....

You are caught in the throes of the myriad of differences of opinions regarding treatment (or not!) of ANs.

The docs are correct that there is a margin of error of 1-2 mm on reading of MRIs and from machine to machine.  And yes, it is a big deal to the patient so they have no right to "blow us off."  A little compassion is in order here!!

I would definitely send all of my MRIs and most recent audiogram, along with your current symptom information to HEI in California for an additional opinion. See: http://www.houseearclinic.com/consultation/acousticneuroma  Even if you have no intention of going there for treatment, you will have a valid opinion.

Many thoughts and prayers.

Clarice

[leapyrtwins]

Lisa -

opinions are like *ssholes, everyone has one.

You have to take the bull by the horns, talk to as many doctors as you feel you need to talk to and based on that make the decision that makes the most sense to you; the decision that you are most comfortable with.  This is your life; you need to make a decision.  And you need to make sure it's an educated decision.

You also need to find a doctor that you have total confidence in and are 100% comfortable with and let him help you decide on what you want to do.

Keep in mind that docs who do radiation tend to recommend radiation, docs who do surgery tend to recommend surgery.  For that reason, in my opinion, you shouldn't send your MRI to HEI for an opinion.  Chances are very good that they will say surgery - it's what they do; surgery is big business for them.

Find some more local docs, get as many opinions as you feel you need to get, and go from there.

I don't know how far Cleveland is from Cincinnati, but there are some wonderful docs in Cincinnati who hosted the last ANA Symposium (Drs. Tew, Pensak, and Theodopolis - or something like that).

Good luck,

Jan 

[Tumbleweed]

Hi, Lisa:

Sorry you're going through this. We've all been there.

The conflicting measurements of your AN are due to at least two reasons: 1. MRIs have about a 2mm "error" in measurement; because they take image slices at different cross-sections of the brain each time you get an MRI series taken and these are spaced apart, the shape and dimensions of the tumor will always appear a little bit different in each MRI series; 2. ANs are measured obliquely, or at an angle, not necessarily at right angles, and the specific angle is arbitrary. Each doctor might therefore measure across the tumor at a different angle and arrive at slightly different measurements.

Of course, there are other reasons for the variances in MRI reports: incompetence (don't laugh, I've seen this happen three times in my case!), different equipment was used, or your head was in a different position. But the first two reasons cited above are most likely to impact your results.

Regarding hearing loss with sub-occipital approach: You are correct that this is generally not considered inevitable. However, your doctor may have ordered an ABR test, which evaluates the condition of your hearing nerve. If so, and if your ABR showed your hearing nerve is in very frail condition, then your doctor probably rightfully concluded that the trauma of surgical resection would kill off any remaining hearing function that nerve has. If you haven't had an ABR test yet, ask your doctor to order one. It's quick, non-invasive and totally painless. (My ABR test indicated I too would lose all hearing if I had sub-occipital microsurgery, so I chose CyberKnife (CK) instead. I still have my hearing 40 months after CK.)

Exhaustive studies confirm that there is statistically virtually no greater chance of malignancy caused by radiation treatment than the risk to the general public of getting cancer. If your doctor thinks otherwise, they are relying on outdated information based on research done decades ago when radiation patients received much higher doses than they do today.

You are smart to seek yet another opinion. Keep going until the picture becomes clear for you. I suggest you ask Dr. Steven D Chang (esteemed doctor at Stanford and both a neurosurgeon and CK practitioner) for a free consultation via email: sdchang@stanford.edu.

See my post (partway down the page) that compares different treatment options here:
http://anausa.org/smf/index.php?topic=6670.0

Other useful info here (see my post partway down the page):
http://anausa.org/smf/index.php?topic=6657.0

Best wishes,
TW

[alabamajane]

Lisa,
I too had similar symptoms,, some hearing loss although not much , balance issues, some headaches in the beginning, that was 2008, then annual MRIs showed small growth until May of 2011,, it had grown from approx 1 cm to 2.8cm at surgery 4 wks ago. Watch the tongue issues because I developed numbness on the tip of my tongue,, like from burning it with hot coffee, and slight tingling on side of face with AN,, and it ended up the tumor had grown into the facial nerve,, compromising it.. but my tumor also was in the CPA area having grown out of the IAC and was pressing on the brainstem..
I agree with Clarice in that I think an opinion from House, which I also did ,, is useful .. Dr Slattery was my contact there and he suggested surgery but in 2010 was "ok" with w&w.. then in 2011, he indicated I needed to move forward with surgery, radiation was out of the question as it was pressing on brain stem by then,, I did not have it out there, but did move forward,
So just letting you know tongue issue can be related and an indicator that tumor may be pressing on that nerve .. good luck to you ,,, many people on here have been in your shoes and it is a difficult time for sure....

[lrobie]

Thanks for all your responses.  As you all know, this tops the list of a very hard decision to make.  I could continue to watch and wait, but risk waking up one day to the tumor tripling in size and symptoms being worse and irreversible.  Then I would be mad at myself for waiting. 

Lisa

[HoosierRick]

I would definitely send your info and MRI to HEI.  They did not try to talk me into anything.  Yes, they do a lot of surgery and that is what I chose, but they never once made me feel pressured.  If I had wanted to W&W they would have been fine with that.  As far as the Mayfield clinic goes...I felt that place was a waste of my time!  Very unpersonable in my experience with them.  They tried to tell me that I didn't even have an AN.  That my audio gram was wrong and that I hadn't lost 25-30% of my hearing...it was only about 5%.  I really don't have much respect for them...just my one opinion though.  I am very happy with my decision.  Get as many opinions as you can...and make an as educated decision as possible.  It is no ones but yours.  No doctors or anyone's but yours.  Good luck and prayers are with you.

[mindyandy]

Definitely send your scans to house. What do you have to lose? What you've read about hearing loss & facial nerve stuff about house being horrible?  They do many ANs a year & are from what I have read excellent. They will be very up front about possible hearing loss. No guarantee since it is an AN. They are very good with the facial nerve. Its also about tumor location.

Good luck in your research
Mindy

[Richard_T]

Yes.  You are in the throws of the conflicting research and opinions. 

Though I am no doc., I concur that you should send your MRI, radiologist report and audiogram (and any other relevant info.) to HEI (surgery and GK) and to Dr. Chang at Stanford (CK).  I found the physicians in both high volume AN centers to most knowledgable, patient and useful.  However, keep in mind that neither they nor anyone else can sort out the conflicting opinions.  You need to use the information you obtain to decide which option appears to best suit your desires/fears/personality/careers, etc.  It can be done.