RECURRING Tumor?

[Pamela M.]

I'm a newbie - though my original surgery was in 1989 (!) long before there was an online support group! But right now I am anticipating an MRI to confirm recurring AN.

My doctor's group in Los Angeles sent me a letter about 20 months ago, saying that since the incidence of recurrence was rare, follow-up MRI's have not always been recommended. (Indeed, the last time I saw anyone connected with my AN was three weeks post-op!)

But now, with MRI's easier to find and cheaper, they were enclosing an order for me to get it done. Just for the heck of it, I supposed. Or else, they actually HAVE been seeing a higher incidence of recurrence. Otherwise, why would they suddenly be contacting everyone in their database for the past 20 years - people they originally told were virtually home free and would need no further follow-up. I've always wondered how they could be sure -- and how would I know if there was a recurrence, after they have already removed my entire inner ear structure and thus anything that could raise my attention as before.

I am now experiencing weird feelings and pains in my head, post-op dry eye and taste disturbance that I had heretofore become quite accustomed to are starting to be prominant again (I'm a little worried about my facial nerve at this point), and I feel foggier than usual (which is going some). So I dug out the MRI order which I am taking to my doctor tomorrow. I have relocated from San Diego to the Bay Area and have different insurance, so it will be interesting to see how my insurance group responds to authorizing an MRI from a physician to whom my PCP has not even given me a referral.

Anyway, blah, blah. I'm just wondering how many in this forum are on the second go-around, how long it has been since your initial diagnosis/treatment, and how your symptoms presented. Maybe you didn't even have time for symptoms to develop, if you have been having the follow-up they weren't offering me 18 years ago!

Pam

[jerseygirl]

Pam,

I had my first surgery in 1988 and a recurrence was treated last year. I really hope you do not have it! Things are much easier now than they were in 1988 but who needs all this worry and interruption of your life!

I have been getting yearly MRI for close to 10 years as I have waited and watched my recurrence grow. It was not available when we first had surgery but get an MRI with and without contrast. AN, if present, will glow vividly. I would get one from PCP so that insurance pays. Just tell him/her about your symptoms and say that if anything is found, you will follow up with a specialist. They usually agree. I never had any problems.

Please, keep us posted!


                                     Eve

[Kate B]

Hi Pam,

Since you are in California, it would be worth the trip to House Ear Clinic in Los Angeles. They are the gold standard when it comes to treating AN's.  House Ear Institute also does a free consult when you send your MRI and reports.  Once received, they respond quickly.

I had my surgery there almost seven years ago.  They recommend one at a year and then reduce the amount after  that.  I chose to have one for the first few years for my own peace of mind.

That being said, I think it is a good idea to get an MRI.  I worry about the switch in insurance company and not following the proper channels.  Do they still label things "pre-existing condition"?  That is my naivete with all the nuances of  insurance companies.  The reason I ask, it is not just the MRI, if by chance you need treatment, you wouldn't want them to reject the cost of the  treatment.

Could you call them ahead of time to check out the benefits in your plan?  One more week at this point may not make that much difference relative to what is going on in your head, but it may have long term affects relative to insurance.  Just my two cents..

Kate

Here is the info from the House website.
<If you, a family member, or someone you know has been diagnosed with an acoustic neuroma, you may consult with a doctor from the House Ear Clinic team. We will be happy to review the MRI scans and audiogram and speak with you by telephone (we must have a copy of the actual MRI film, reports are not sufficient by themselves).

Send the MRI scans by express delivery (be sure that you are able to track the package) to:

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

You can expect to hear from a House Ear Clinic physician within 24 hours of our receipt of your information. You may also call or fax a House Ear Clinic physician at:

Telephone: (213) 483-9930
FAX: (213) 484-5900

This mail/telephone consultation is free of charge. (This offer does not apply to office consultations.)>

[/quote]

[Pamela M.]

Thank you for your encouragement and the suggestion about the MRI order, Eve -- makes sense.
I will keep you posted.  :-)

Pam

[jcinma]

Hi Pam,

In 1996 I had surgery for a 1cm. AN. I had a followup MRI one year later and an another was to be done at five years.  I had the one year MRI in 1997 and it showed no regrowth. Unfortuantely I was lax about the five year MRI, I guess I just wanted to put the whole experience behind me. In 2004 I started experiencing some facial numbness and an MRI did show a regrowth. As far as I know the post op protocol has changed. MRI's are done more frequently. Regrowths are still very, very rare, but it is a good idea to have an MRI.  As Eve said, tell your doctor about your symptoms, I am sure with your history and symptoms you won't have a problem.

Take care,
Jane

[Pamela M.]

Thank you for your input about the insurance, Kate! I know this can be sticky and will definitely consult with them on this before I jump in with my clothes on, as it were. I do want my doctor to know what's going on, and then we'll procede carefully.

As for the House Institute -- I would go nowhere else!! Drs. Brackmann and Hitzelberger did my surgery the first time, and I can't imagine anyone else messing with my head! I saw Dr. Brackmann's picture on their website and I swear he hasn't changed a bit! I'm sure there are some excellent physicians at Stanford or San Francisco, but it's not a chance I care to take. We'll see what happens...

Pam

[Pamela M.]

Jane, my original tumor was 2 cm, I believe -- I shudder to think what a regrowth would look like after all this time. I keep thinking if I don't PLAN on the worst, maybe all of this will turn out to be my imagination. :-)

I actually never dreamed I'd be revisiting this issue!! There are much worse things than being deaf in one ear, and I considered myself blessed to have the comparatively good outcome that I did. This new development makes me a little nervous!    Pam

[jerseygirl]

Pam,

Maybe, you have nothing to worry about. The doctors at HEI are enclosing an MRI order because they are good doctors, not necessarily because you might be having a recurrence. Remember, in the 80's most ANs  were found  big (you were really lucky, I was not) and if they weren't, the patients lost conscousness and were dragged by their families for surgeries. In fact, this is the first generation that is alive and well after an AN surgery and , therefore, the small possibility of recurrence is considered. Throw in the mix the fact that MRIs were not widely available back then and the fact that most ANs are growing very slowly and you get the picture. After so many years out of surgery, the surgeons just want the confirmation that you are NOT having a recurrence. This is just good medicine. Good luck to you.

                             Eve

[Pamela M.]

My attitude may have sounded a little harsh yesterday, Eve -- obviously, I didn't take the MRI order very seriously when I received it (mostly, I just didn't have time to go the trouble of checking out how this work insurance-wise, etc.) and so just tucked it away.

The reason I am pursuing it now -- and wondering why I was not given this option say, even ten years ago, is because it is now quite possible I do have something to be concerned about, given that I am experiencing symptoms. I would have preferred to know this quite sometime ago, when I was less likely to write it all off to -- something else -- because I "already had the surgery" , and having been released just three weeks post-op, was given to believe I'd never have to give it another thought...except when I explain to people who ask why I am completley deaf in one ear.

All of that said (agaiin...sorry...I seem to need to vent), I would still go back to Dr. Brackmann in a heartbeat, because I never felt so confident in a doctor...or a hosptial like St. Vincent, which has a whole floor dedicated to AN patients...or so well cared-for...or so close to God as when a major event like this took over my life. I grew as a person as a result of the whole ordeal, from start to finish, and I do believe God's timing is perfect, and he will direct me this time, too.

Thank you for taking the time, as others have, to loving reach out with rational thoughts. :-) There are so many others on this forum who are truly scared and/or hurting, and it is lovely to know that everyone can find answers, or at least comfort in the kindness of others like yourself.

I will get back to you all soon - seeing my doctor today.

Pam

[Jim Scott]

Hi, Pam - and welcome:

I can understand your apprehension stemming from AN-type symptoms recently manifesting themselves and receiving a letter from your former AN physicians suggesting a new MRI scan, all so long after your surgery.  It's a bit scary all right, but I have to concur with Eve ('jerseygirl') that times have changed, and these doctors are just being diligent.  Back in 1989, when Madonna, Phil Collins and the B-52's were making hit records, AN surgery was less sophisticated and MRI machines were still somewhat primitive and hard to find.  Today, AN surgical techniques have evolved quite a bit and MRI centers are fairly ubiquitous. 

Unfortunately, regrowth of surgically removed AN's is not completely unknown, because even a few pieces of the often sticky tumor material 'missed' by the surgeon can eventually reconstitute into another growth.  The surgeon's usual post-op assurance: "we got it all" may be comforting and true to the best of the surgeon's knowledge, but sometimes, ultimately, prove to be inaccurate.  That is the regrettable reality. 

This is partly why, aside from the much-improved accessibility to MRI facilities, doctors tend to order more follow-up MRI scans on AN patients (surgical and those who undergo radiation treatment) and to keep the patient under their supervision for much longer, today.  My surgery and follow-up radiation occurred almost two years ago (see my signature at the bottom of this post for details) yet my neurosurgeon has scheduled me for MRI scans every six months, even though my remaining AN has shrunk and necrosis is clearly taking place.  O.K., he's extremely conservative, but he said he'll probably have me undergo MRI scans at least annually for another 5 years or so, until he's totally convinced that the AN is dead and no re-growth is taking place.  This follows both debulking surgery and radiation.  So, Pam, you can see why your former doctors are recommending an MRI at this late date.  The fact that you're experiencing AN-type symptoms right now is very likely coincidence.  In any case, once you've had the MRI done, you'll know for certain and, we hope, will be able to rest easy.  Please let us know.

Jim

[Pamela M.]

Thank you, Jim -- I think I am settling down a bit, if only because I am realizing that it seems unlikely I will have to go through a five hour surgery again...sounds like there are several treatment options available that could preclude this. You kindness and wisdom is comforting, and I am so grateful for the time you took to remind me...bottom-line, drum roll please...that my symptoms could be coincidental and we should maybe at least wait for the MRI before I wax hysterical.

I'll get back to you. :-)
Pam

[Pamela M.]

Just to let all you lovely people know -- my insurance will not allow my PCP to order an MRI (and most certainly will not pay from the one the House Clinic), so I have to be referred to a neurologist first. Such a deal. And I understand they are all very busy around here, and it may take a month.

(sigh) - OK, what's another month, anyway?  If and when I have something to report (and my doctor isn't all upset over this, but definitely feels I should have the AN followup, even 18 years after the fact) -- I'll be back in contact. Thank you all for your encouragement!

Pam

[matti]

Good luck Pam, please let us know how it goes. I know 10 years ago there was not much available as far as support and info, I can imagine what little you had out there 18 years ago.

I had surgery in 1998 and getting ready to celebrate my 10th anniversary. The stress of the yearly MRI never seems to get any easier 

Cheryl

[robynabc]

Hi Pam,

In 1996 I had surgery for a 1cm. AN. I had a followup MRI one year later and an another was to be done at five years. 

Wow only one?  Our doctors said that they expect Eric to have MRI"s the rest of his life and annual for 10 years then every 2 thereafter.    I am surprised that they would only do one after one year then 5 years.  I think this also illustrates the need for post op patients to remember that this science changes constantly and it may be advisable to check to make sure what they oringinally told you is still true.  I think it is wise to talk a doctor every year even if they tell you differently right after surgery.  It is my understanding that 20 years ago the mortality rate was way higher than it is now with new microsurgery.  And they are constantly making strides.

 JMO.  Good luck guys.