Newly Diagnosed in FL

[Dolwin]

I've had persistent tinnitus in my right ear for about a year and a half now, and for the past 8-9 months have been having some extremely bad headaches based on my right temple area as well as decreased hearing in my right ear.  Like a typical guy, I had ignored it until my fiance pushed me to see the doctor and explain everything.

After seeing my normal doctor, he referred me to an ENT, Dr. Steven Ho in Melbourne, FL.  Well, after a few weeks and an MRI scan I've been diagnosed with AN.  My right ear currently only has about 8% of it's hearing left, so it's pretty much a loss.  My AN measures 1.4 x 1.7 x 1.2 cm and has pushed out of the IAC and formed a mushroom pressing against the brain stem.  This afternoon was my follow-up from the MRI with Dr. Ho.

At this point, I'm past the watch and wait phase.  I discussed the options with Dr. Ho, and he felt that a GN might be effective but the swelling post-procedure could have some negative side effects with how my AN has grown.  He felt that neurosurgery would be my best option, and I do agree as well.  Right now I'm waiting for an appointment with Dr. Jonathan Paine, one of the neurosurgeons at Holmes Regional Medical Center in Melbourne, FL.

I'm trying to keep my emotions in check, but having a few breakdowns here and there.  I've had a few different surgeries from sports-related injuries (knee arthroscope, Achilles rupture & re-attachment, ankle) but this is a whole different level of scary for me at 37.  And then on top of that, I'm looking at also needing a BAHA device & possibly repairing a badly deviated septum.  It's shaping up to be a LONG year...

I've been finding a lot of GREAT information on the ANA website already, but find that the doctor listings seem to be light.  From what I understand, the only doctors listed are ones that support ANA.  I'm a little nervous about seeing the neurosurgeon, since I don't really know how to spot a good one from a bad one.  I'm planning to go through a lot of the questions on the site with him when we meet, and would prefer to stay locally if possible, but will keep my mind open depending on how the initial consult with Dr. Paine goes.

[CHD63]

Hi Dolwin and welcome to this forum .....

So sorry it took the diagnosis of an acoustic neuroma to find us but so glad you did find us.  This is an awesome bunch of very helpful, kind, and caring people, who have been through what you are going through right now.  Yes, it is a scary time but the important thing to remember is it is almost always a benign, very treatable tumor.

The one thing that is a common piece of advice here, is to seek out the most experienced physician you can find.  That is, experience specifically in treating ANs, not just any brain tumor.  ANs are in a very tiny place with other nerves going through the same canal.  You want someone working in there who has had vast, successful experience doing it.  With that in mind, I would ask Dr. Paine how many AN surgeries he has done over what period of time.

Many of us sent our MRIs and audiograms to House Ear Clinic in Los Angeles for free second opinions.  (They do free consultations.)  I just had my second acoustic neuroma surgery at House two months ago.  (Do not be alarmed.  Mine grew back but that is highly unusual.)  I would urge you to send a copy of your MRI and most recent audiogram.  It never hurts for additional opinions.

My original AN was growing out of the IAC towards the brainstem and looked like a mushroom, as well.  I did still have 80% of my hearing so my first surgery at Duke University was retrosigmoid for hearing preservation ...... which did save 20%, which I boosted with a hearing aid.  However, this most recent surgery needed to be translab so I am now SSD, but with the Oticon Ponto Pro abutment implanted at the same time.  I am doing well.

If you have not already done so, send for the free informational packet from the ANA.  You will find a wealth of information in it.  See:  http://www.anausa.org/index.php?option=com_aicontactsafe&view=message&layout=message&pf=4&Itemid=195

Ask any questions you have here and you will be amazed by the number of responses.

Many thoughts and prayers as you walk through the maze of information and decision-making.

Clarice

[leapyrtwins]

From what I understand, the only doctors listed are ones that support ANA. 

Hi and welcome to the Forum.

Your understanding of the doctors listed on this site isn't exactly true, so I wanted to clarify.

Doctors and facilities listed on the ANA Website aren't endorsed by the ANA, but they do have to pass a rigorous set of requirements to become what the ANA deems a Center of Excellence.  Some of the requirements have to do with the number of ANs treated, the qualifications and experience level of the doctors, etc. 

The docs/facilities do pay a fee to the ANA to become a Center of Excellence - so in a way I guess they are supporting the ANA -but it's not like they just pay a fee and get listed.

Hope that clears things up.

As for doctors, you mention that you are seeing an ENT and a neurosurgeon.  ENTs aren't always the best docs to give advice on ANs - unless they personally treat them - and neurosurgeons typically suggest surgery; afterall it's what they do.  Most AN patients who send their MRIs to House are told that they need surgery because the docs @ House pioneered AN surgery; to my knowledge House docs don't do radiation and since House is a business (like all medical facilities) they recommend what they do.

I suggest you consult with a neurotologist, and it would be to your advantage to consult with one who does both surgery and radiation so that you get a well-rounded opinion.   If you can't find a neurotologist who does both surgery and radiation, then find a few who do each and get their opinions.

Surgery isn't for everyone and neither is radiation.  It's a very personal choice.   Unless there is something about your AN (size and/or location) that precludes you from radiation you should look at both these options.

Also, as Clarice said, you should contact the ANA about their informational brochures.  They are free for the asking and extremely helpful.

Best,

Jan

[CHD63]

Hi again .....

Yes, Jan is correct that often neurosurgeons will recommend surgery and radiation oncologists will recommend radiotherapy because that is what they do the best or the most often.  However, I do want to clarify that the physicians at House Ear Clinic do not always recommend surgery.

This past February, I was given three choices/recommendations by Dr. Friedman at House Ear Clinic:  wait and watch for no more than six months, explore stereotactic radiation treatment (until my history of previous huge radiation exposure was revealed), or have translab surgery for total tumor removal.  It was my choice to go with surgery ..... not their recommendation.

Also, House has another neurosurgeon on staff now who has had extensive training in both cyberknife and gamma knife.  See:  http://www.houseearclinic.com/lekovic  Yes, House has long been an advocate of surgical removal, but that is not the only thing they recommend these days.

All physicians and all medical facilities are businesses so that should be a non-factor in your decision-making.

Clarice

[leapyrtwins]

All physicians and all medical facilities are businesses so that should be a non-factor in your decision-making.

Have to respectfully disagree with this.  All physicians and all medical facilities ARE businesses, but whether you choose a big business - that often brings a not-so-personal touch - or a smaller business may be a factor for some.  It all comes down to personal choice.  For my money and my comfort level I was much better off going to a local doc that wasn't a "huge name".  He's a big enough name in my part of the country and he definitely was the right choice for me.

During my years on the Forum, I've had a lot of contact with folks who went to HEI and many have told me confidentially through PMs that they felt like a number at this big business.  I won't name names, but will say that one of our most famous forumites from the past had a big issue with being treated this way.  Especially when he ran into complications post op.

HEI is an excellent facility with many excellent doctors, but their outcomes aren't typically any better than other lesser known facilities/docs who have lots of experience.  It's been a theme of this Forum since I joined it that HEI is the be all and end all of AN treatment.  Lot of times forumites are lead to believe that if they don't have their surgery at HEI that it's figuratively the end of the world - and that's simply not true.

Jan

[New girl]

Hi Dolwin,

I am also 37 and newly diagnosed.  Sorry to hear about your AN diagnosis.  Some days I still cant believe that this has happened to me.  I am somewhat of a workaholic who NEVER called in sick and now I am taking time off almost every week to see to all sorts of doctors.  My constant tinnitus for ~8 months was my symptom that brought me to an ENT doctor and here I am now.  What has helped me get all the info needed is to bring a list of questions with me to the doctor visit.  The ANA list is very good.  I sit and take notes as we are talking so I have a record of the info - there is a lot of info so I dont want to forget anything.  Plus I find it helps get all the questions answered otherwise I would probably forget half of them!   I havent gotten any strange looks yet.  So far all the doctors I have seen have been very patient and have answered all my questions without seeming to be annoyed.  It is hard to know who is the best surgeon.  My husband has been going with me for some appts so we can compare notes.  None of my doctors (ENT, surgeons, etc) have pushed any specific treatment path for me- this may be since my tumor is "smallish".  Although the radiation oncologists did lean towards me going the surgery route if I was to choose treatment now.  They felt that due to my age I would most likely experience some sort of negative effect from radiation later in life.  That was their opinion for my situtation.  Everyone is different.  Anyways, that has been my experience so far. 

As you said the ANA site is GREAT for info.  I have seen here that treatment paths are very diffierent for different people.  It does seem as though there are many good AN doctors out there who are not listed on the ANA site.  The short list of doctors initially concerned me also.  I live in Massachusetts and found it odd that no one from Boston was listed since we have so many doctors/hospitals.   Good luck with your doctor's visit and take care of yourself.  Keep us posted!

-d

[Jim Scott]

Hi, Dolwin - and a belated welcome to the ANA discussion forums.

I won't waste your time reiterating all the solid advice you've been given by previous posters but I will address your observation regarding the dearth of physicians listed on the ANA website physician list.  As Jan correctly stated, there are many excellent doctors around the country that perform successful AN surgeries on a regular basis.  Jan, who lives in Illinois, had a doctor like that.  So did I - and I live in Connecticut.  My neurosurgeon did a fantastic job all around and was highly compassionate and helpful before and after the surgery.  I was blessed with a great recovery.  However, my neurosurgeon, who has over 30 years experience and who other local doctors ask for when they require a neurosurgeon, a doctor who is an instructor at prestigious Yale Medical School and who is highly admired and respected in his area (New Haven, CT) and a longtime member of the ANA - is not listed on the ANA website and relatively unknown in some respects (although he has a thriving practice and turns down some potential patients due to time constraints).  I state all this to drive home the salient point that there are many fine surgeons in all parts of the country that perform AN removal/debulking surgery - but you have to seek them out.  If necessary, your local medical society can be a help. 

As for the House Ear Institute, their reputation is deservedly excellent but they are, as Jan noted, not the only facility in America that is capable of performing a successful AN surgery.  However, when a newly-diagnosed AN patient begins seeking a competent doctor to help them and finds it hard to locate one in their area, HEI seems to be a fall-back choice for many.  Frankly, it would have been mine if I had been unable to find a doctor that I could feel confident about.  I can't offer pro or con arguments for HEI because I haven't been a patient there and only know of their sterling reputation.  However, HEI is staffed by human beings and so, they could never be without flaws.  I just think that HEI is likely a tad over-hyped but that much of the enthusiasm for the facility and it's staff comes from former patients, which, in the final analysis, is the best authority.  I wish you great success in finding a doctor you'll be comfortable with.  One that is able to address your medical issues in a way that gives you confidence and peace of mind.  We stand ready to assist you in whatever ways we can.     

Jim   

[Dolwin]

Thank you all for the responses, and great advice, so far.  HEI isn't really on my radar.  If I were to go out of state, I have a great option in the Mayo Clinic.  Several business associates have said that they can help out with a place to stay while I'm undergoing treatment if I do decide to go to the Mayo Clinic.  Plus, my family all live within about 3 hours of Rochester, MN, which is a bonus.  It's a very tempting offer, since Mayo has a great facility.  But I'd rather be closer to home in Florida if possible.

Right now I'm in a holding pattern though, since I'm on a business trip all week in MN.  Once I get back home, I can start asking the questions when I meet with Dr. Paine.

[TP]

Dolwin, I am so sorry to hear you have an AN. The advice the folks previously have given you it top notch. They have a great deal of knowledge and experience in research and support on this forum.

I know it is overwhelming to receive the news you have a brain tumor and then to have to figure out which Dr to choose. I did not find this forum until after my AN was removed so I was pretty much on my own. At the time I was diagnosed, in my city (northeast Florida-I live in St. Augustine), there were not too many nuerosurgeons around at the time and my pain Dr recommended a group at St. Vincents in Jacksonville. I saw Dr. Gabriel and he performed the surgery within 3 weeks (I needed to have mine done quickly as my tumor was fairly large and was on my brain stem and I was having issues). I never thought of seeking a surgeon out of town and if I had known of other well known facilities not sure I would have chosen that route only because being away from my family would have been difficult at that time in my life.

With my particular situation I had to have additional surgeries and my dr was wonderful. He provided a great deal of personal support. He gave me his cell phone number and I could call him anytime (of which I did). I went in to see him on two occasions to get additional stiches and he came in on a holiday and his day off. His support was excellent. This type of support would have been difficult if I had picked a surgeon out of town. Not that I am a patient who needs a dr to hold my hand, I must say having a dr with a good bed side manner was very nice to have. He was a good solid surgeon and I have no regrets with choosing him as my dr.

As a suggestion you may want to look into Mayo Clinic and Shands here in Jacksonville. There are many more neurosurgeons in this area since I had my surgery done.

Wishing you the best and keeping you in my prayers!


 

[Twindad]

As you can see in all of the responses you have gotten so far, THIS SUPPORT GROUP IS FANTASTIC !

I myself saw my ENT doctor on a Wednesday as a result of sudden 50% hearing loss. Had a MRI on Thursday, informed about tumor on Friday and was in the surgeons office on Monday. Brain stem was being pinched off with other symptoms that I had ignoring for a long time. Two weeks later I was on the table to remove the plum pushing against my brain stem. There is a surgical group out of Tampa General that have have been doing this for many years. I spent two days in ICU and one in a regular room. If you want the contact info just shoot me an email.    Todd

Attitude is 9/10th of it !

[skipg]

My wife and I along with several others had lunch with Dr Theodosopoulos (try to pronounce that) of the Mayfield Clinic in Cincinnati. Dr Theo specializes in AN surgery and pituitary tumors. His biggest recommendation was to stay close to home. Providing of course the treatment options and experience are there close to where you live. He said "anything can happen and your support group is very important". I was inclined to go out of my area for treatment but I have spent the entire time since returning from the symposium in Cincinnati searching our area and have come upon a group of Doctors who use the team approach and refer patients to each other for 2nd opinions. One is an ENT who assists the surgeon during surgical removal. One a radiation oncologist who consults with the surgeon if radiation is chosen. And of course the surgeon who does the actual operation. I have seen all three and their approach is to confer between them and recommend what is best for the patient. Keep looking and asking and you will find what is best for you in your area. Todd sounds like a good reference point.

Welcome and stay in charge of your options.
Skip

[Dolwin]

Finally have some news to report on.  I was supposed to see Dr. Paine on 8/24, but luckily there was a cancellation and he fit me in this afternoon.  After speaking with him, I am a lot more comfortable.  He has performed AN removals for ~30 years now, and is also an on-call trauma surgeon for the trauma center at HRMC. 

We talked for about 30-40 minutes.  He went over the placement and size of the tumor, and how he would go in if I elected to proceed with surgery (retrosigmoid).  What really won me over is that he pushed for me to speak with a radiologist about the possibility of treating with radiation (even though I was and still am leaning heavily towards surgery). 

So now I'm back to waiting, hopefully I'll have a date/time for the next appointment sometime tomorrow.  I think all the waiting is the worst part right now lol!

[Dolwin]

Just heard from the neurosurgeon's office.  Quick turnaround on seeing the radiation oncologist - Weds @ 8:30am!  Just read a quick bio on her, she sounds very good - Nanialei Golden.  Graduated Chicago Medical School, Residency @ Northwestern in Chicago, Gamma Knife fellowship @ UC-San Francisco.  Currently the Radiation Oncology Medical Director and Chairperson of the MIMA Cancer Center Tumor Borad locally, plus other assorted committees.

Also found out that Dr. Paine has worked on several co-workers (all back-related unfortunately) but they all speak very highly of him both skill-wise and about his care and bedside manner.

Even if I don't go this route, it's good to know that at least my options locally do seem to be very good!

[Jim Scott]

Dolwin ~

Thanks for the updates.  It's good to learn that you're moving ahead and feel confident with the doctor (Paine) you've consulted.  The radiation doctor also seems as if she'll meet your expectations.  This is crucial to help you feel secure with your decisions as you progress toward treatment, whatever that turns out to be.  So, it appears as if you're on the right track.  I wish you continued satisfaction with your consultations.

Jim

[New girl]

Hi Dolwin - Soulds like you found some great doctors!  The waiting part is definately hard.  Good luck with your appts.