newly diagnosed; stumbling through the minefield

[ANdroid]

Hi everybody; I was recently diagnosed after an "incidental" find on an MRI taken to investigate a head-injury. After 4 weeks of trying to get somewhere with my HMO other than "if it doesn't get better or gets worse come back in..." and coming back in only to be told :" if it doesn't...etc." the doctors finally ordered an MRI. My family doctor informed me of the tumor and said that surgery was not an option because of "too high of a morbidity rate". He the referred me to a surgeon. [?]. The surgeon and then the ear doctor pretty much scoffed at my interest in radiation-surgery so I self-referred and see the team next week. The surgeon convinced me to adopt the wait and watch approach for 3 months and then do another MRI to test the rate of growth of my currently small to medium AN. My question is: Is this typical or does nobody really know what they are doing here? My questions have been answered cryptically and it seems as though a little is being revealed each time I speak with someone else; but never the entire picture. So; SOP or should I be worried about my care?

[Obita]

Hi ANdroid:

Welcome to the forum.

Should you be worried about your medical care?  YES.  Very few GPs have even heard of an AN.  ENTs usually diagnose them after people have been misdiagnosed, some for years. 

Where do you live?  You should find someone that has treated hundreds of ANs.  Unfortunately, you might need to go to a big teaching hospital/medical center for the best care.  ANs are rare, lucky you and all of us but they are treatable. ANs can usually be radiated unless they are too large or compressing the brainstem.

You can send your MRI cd to The House Ear Institute in LA.  They will give you an opinion over the phone.

This is one of those times that you have to be proactive with your health.  Whomever told you that surgery was not an option is nuts.  I for one am living proof that surgery is an option. 

I try not to blame doctors for telling people such bogus stuff BUT, why can't they just say:  I have no idea, lets find you a doctor that knows what he/she is talking about.

Waiting three months for a repeat MRI might be the advice of an expert on ANs.  Many people can watch and wait as long as their symptoms stay in check.

I hope you are one of those people.  Lets find you a Otologist/Neurotologist and see what he/she has to say.

Good luck, Kathy

ps:  did they tell you how big it is?  mm or cm?

[Battyp]

Oh Kathy I see we taught you well (of course I'm saying that in my best Yoda voice!)

Too high a morbidity rate?  HUH?  it's like less than 1%
As Kathy said most doctors do not see enough to really know what they are talking about.  Some doctors who've seen a few offer you a comparison to someone else which is not a good thing as with this type of surgery no two people given the same doctor, size, hospital etc will have the exact same outcome.  My best advice is to get a copy of your MRI and REPORT and keep a copy on you.  You can send a copy to house in la for a consult, and many radiosurgery centers, sbi in ca, moffitt in tampa where do you live? 

Stick with us and we'll get you through the chaos!  Kathy you left off the part where we're one big cyber family and we truly care about everyone and will do everything we can to help answer any questions you have and provide research sites if need be. 

Sorry you are having to join our exclusive group but know you are not alone!

Michelle

[ppearl214]

Hi ANdroid (cute nic!) and welcome.

I also have to chime in here. The info you provide is limited so let me ask you this (in line with Kathy and Michelle:

1. What size is your growth?
2. MRI done with contrast?
3. What were the ultimate reason for the docs saying radio-surgery would not work in your particular case? (the morbidy is a bunch of hogwash and please know that it is often used as a scare-tactic by drs not really familiar with radio-surgery.)

BTW, if that was really the case, I would not have had radio-surgery and my AN would not be dying... but hey, that's just me.. and I'm doing JUST fine!

Hang in there.
Phyl

[ANdroid]

Here is some more info [and thanks so much for the helpful responses and well wishes already!].
1. I live just north of Seattle, Washington. 
2. Size of tumor...hard to say as my questions have elicited vague answers like "between small and medium" and "pretty small right now" and "not very big". I can't tell if nobody knows or is not telling or just can't tell by the picture [done without contrast].
3. The latest surprise was being told that "we really can't tell which of the three nerves in the area the tumor is on."
4. To clarify: my family doctor said that micro-surgery would not be an option and only radiotherapy. He then referred me to a neurosurgeon. I have referred myself to a radiation oncologist for a Q and A session.
5. It is difficult to say if I am suffering symptoms yet as a concussion and post-concussive syndrome actually led to the finding. Dizzy? yes; headpain? yes; hearing loss? not that I noticed [except, at age 51 I can't hear like I used to and I always blamed The Ramones] but measurements say yes. So it could be from concussion...or not.
Once again, thanks for the help so far and in the future. The supportive messages are already making me feel better!

[krbonner]

I'm sure others will pipe up with recommendations for doctors in Seattle - there are several here from that area.  You can also do a search for Seattle doctor and find some names.

As others have said, I wouldn't really trust the AN treatment advice of a doctor who doesn't regularly deal with ANs (as in, already treated hundreds).  ANs are just too rare with too many varying factors to rely on someone without that experience.  So, I'd get copies of your MRI and the report and carry them/send them elsewhere for consultations with doctors who have the right experience.  You're doing a good thing by talking to both a neurosurgeon and radiation oncologist, but ultimately you are the one who needs to make the decision that's right for you.

One thing to note: on your MRI report, you'll see the dimensions of the AN.  Keep in mind that those measurements are estimates probably made by someone with little or no experience with ANs.  Maybe they'll be right, but my original report says my AN was 3.3cm, when at the time it was only 1.8cm.  The problem was an inexperienced radiologist reading the films.  That keps us all panicked for a few weeks until the MRI was re-read by an expert.  Just something to keep in mind.   

Good luck!  And don't be afraid to ask any questions.  We've all been there, or are there!
Katie

[Obita]

The Seattle area is a good place to be if you have an AN.

Gennysmom had surgery at Virginia Mason and Sue gamma knifed her AN at Gamma Knife Center.  I know there are more in the Seattle area but I can't remember who???

Kathy

[Sam Rush]

I have been a medical doctor for 38 yrs, and had never seen a case of AN until my own !!!  Very rare. Don't go to or seek opinion from any doctor whe doesn't see at least 40 cases a yr. Statistically the best surgical outcomes are at House clinic, or Stanford., less than 1 % complication rate at House with small or medium tumors.

House has an internist, Dr. Steffan, who sees about 300 cases a year. They will give you a consult, but usually favor surgery due to their excellent statistics.

Good Luck!!

[ppearl214]

Sam, have to ask.. what kind of medical dr are you (your specialty...ie: Internal medicine, GYN, etc....)?

thanks!
Phyl

I have been a medical doctor for 38 yrs, and had never seen a case of AN until my own !!!  Very rare. Don't go to or seek opinion from any doctor whe doesn't see at least 40 cases a yr. Statistically the best surgical outcomes are at House clinic, or Stanford., less than 1 % complication rate at House with small or medium tumors.

House has an internist, Dr. Steffan, who sees about 300 cases a year. They will give you a consult, but usually favor surgery due to their excellent statistics.

Good Luck!!

[Sam Rush]

Also to Phyl


As an internist for 38 yrs, seeing thousands of pts, I have to assume that I have missed some AN's. Now, I am actively seeking them, evauating all pts w/ dizziness, or hearing loss, or whatever seems suspicious. 2 1/2 yrs ago, when I had my surgery, I promised Dr. Brackmann at House that I would find him a case from my own practice, but so far , none.

[ppearl214]

thanks Sam... appreciated.

I'm glad to hear you have found "none" new AN patients as it's always difficult to learn there is another that walks in our shoes.

If, by chance, you find an AN patient that comes into your practice and you share with Dr. Brackmann, will he also be considering them for the GK treatment they are now affiliated with or just from a micro-surgical standpoint? I'm curious to hear more about HEI's involvement with GK at the symposium this summer.

Thanks again,
Phyl

Also to Phyl


As an internist for 38 yrs, seeing thousands of pts, I have to assume that I have missed some AN's. Now, I am actively seeking them, evauating all pts w/ dizziness, or hearing loss, or whatever seems suspicious. 2 1/2 yrs ago, when I had my surgery, I promised Dr. Brackmann at House that I would find him a case from my own practice, but so far , none.

[Sam Rush]

Again, to Phyl.

Haven't talked to Dr. Brackmann in several months, but my feeling is that they will still favor surgery over CK in pts healthy enough for surgery.  Like you, I'm looking forward to more info at the symposium.

Interestingly, The ENT Dr. here (Fresno, Ca.) who referred me to House for surgery, is now part of a group of local Drs, ENT, Oncology, Neurosurgery, who have bought CK equipment. Now he says he would have recc. me for CK!!. even though, retrospectively, I have had an excellent result from the surgery. I think his current thinking, may be due to his investment, and any pts I find, I will get several opinions on before the pt and I decide.

Personally, and professionally, I still favor surgery, or watch and wait, for healthy people w/ small or medium tumors, you just can't beat the statistics.

[Raydean]

I'm not an expert or anything on Seattle  area Doctor's  but names that i can share

As been mentioned Dr. Douglas Backous of Virginia Mason.
Dr. Charles Mangham of The Seattle Ear Clinic.

I believe that these 2 Doctors do the most surgeries in the Seattle area and are highly experienced.

Other Doctors to see

Dr Timothy Steege, he teams with Dr Mangham for surgeries, but also dies radiation
Dr James Rasis (may be retired by now) who also does both surgery and radiation.

The U of W also has a Doctor Duckart  I believe that I have the name missspelled, but you should be able to find him under ENT or neurosurgeon. on there website.

I would also include Dr. Sandra Vermeulen.  Dr Vermeulen is a  radiation-onocolgist doctor and is
well known within her chosen medical field.  She is also co director of the new cyber knife clinic in Seattle.  She's an amazing person and is very knowledgable in all areas of radiation treatments.
She's also a board member of  irsa

By no means is this a complete list of Doctor's, but these are a few of the Doctors that I have come to know over the  years.

Questions to ask that may help you sort out the experience of the medical team

How many AN's do you treat yearly, and total practice.
What percentage does the the treatment of AN's comprise of your total practice.
What are your hearing preservation rate?
facial perservation rate?
Other complication rate?
How does these numbers compare to a regional center of excellence that specialize in the treatment of AN's?

Regardless of treatment option chosen it's important to communicate with your medical team prior to treatment YOUR PRIORITIES.  So that when the time comes, or if you're unable to speak for youeself the Doctor fully understands your wishes. whatever they may
be.  Don't leave anything to guesswork. 

Best to you
Raydean
priorites.

Best to you
Raydean

[Jim Scott]

ANdroid:

Hi, and welcome. 

I can't add much to the solid information already offered except to be prepared to deal with your health insurance carrier.  Sometimes they throw obstacles at you, sometimes they don't.  Mine (Blue Cross) didn't.  Keep doing research and take your time making a decision on a doctor and the form of treatment you'll eventually have; microsurgery, radiation or, like me, both.  If you end up being a 'watch and wait' AN patient, that's good, too.  Knowledge really is 'power' in these situations.  As you've seen, some M.D.'s, while well-educated and skilled in their respective field, are sometimes near-clueless when it comes to Acoustic Neuroma tumors.   However, some  (like my neurosurgeon) are at the top of their field and are very experienced with AN's so they can guide you with knowledge and compassion.    I trust you'll eventually find such a physician.  This is your life, so don't 'settle'.     I wish you well.

Jim

[ANdroid]

 Wow! What a response; thanks for the continued info. I am a Group Health consumer [wish I could say patient but that does not seem to be as accurate in this day and age] and have been going to the Capital Hill center for consults. My next appointment is with a Dr. Herstein [sp?] in Radiation Oncology. I am not sure of the manners on mentioning doctors names in a less than positive light so I won't say who I have seen so far but their names have not been mentioned in any of the Seattle area discussions. Thanks to the gang here I will nail down the size of my tumor at my next meeting and ask ALL the appropriate questions. Any GHC members with info and warnings/praises about the handling of the AN situation [including any financial/billing insurance situation to be aware of] please post or send me a message. Thanks again; I intend to come through this a better and stronger person than when I started. Also, when I request a copy of my MRI are they recquired to give it to me or will I have to fight for it?