I AM NEWLY DIAGNOSED

[agnes]

I am 53 years old and have been noticing hearing loss in my left ear.  I just started doing medical transcription as a secondary job
and was informed of missing particular words, of which I never even heard from the earphones. Then I noticed that I was unable to hear with the telephone to my left ear, which is the ear I usually use. I went to an ENT physician and had a CT scan. The ENT scheduled me for an MRI, which took them 2 months to schedule and I had it last Tuesday.  The ENT called me to let me know
that much to their amazement, they found an acoustic neuroma measuring 6 x12mm.  I don't really know if this is large or small because I am unsure of millimeters versus centimeters.  I have an appointment to see Dr. Patrick Antonelli at Shands in Gainesville Florida on August 13th, which is 4 weeks away.  I have been reading up on all kinds of information regarding treatment options,
etc.  I always feel it is better to be a little educated regarding your condition when you go see the specialist.  My only symptoms
at this point are the muffled sound when the telephone is to my left ear, and I also had a beeper type tinnitus noise is my ear,
now there is no tinnitus, then sometimes it comes back with a different sound altogether, and then again there is nothing.  I am
unsure which option will be suggested to me by the specialist...I have read what all of the options are up to this point and the pros and cons of each.  It is good to know there are others out there that have experienced what I still have ahead, its a shame any of us have to go through this at all, but knowing we are not alone with our ordeals somehow gives us a sense of strength within ourselves and I greatly appreciate that.

[sgerrard]

Hi Agnes,

I'm another newbie, about 1 month ahead of you, also 53, also with a small AN on the left side. My tinnitus is cricket chirping, and it does shift around now and then, and I have some hearing loss, especially mid and high tones, with a drop in word recognition. You are not alone!

For your info, 6mm x 12mm = 1/4 inch x 1/2 inch = a jelly bean. Oh, and mine is 6 x 7 x 8 mm. I have talked to a surgeon, and will be talking to a radiation oncologist, and haven't decided anything yet, except to take my vacation in August with family as planned.

The hero and heroine posters on this site are great, they will help you through anything, it seems. I hope it goes well for you.

Steve

[agnes]

Thank you everyone for your feedback. I am very glad that I ran across this support website and will continue to monitor and reply to responses and read about others and what they undertake.  You are all very inspiring and this is much appreciated. I don't feel alone with a medical condition anymore and this is what support groups are all about.  My time now is a waiting gaime until I can
get to see the specialist in 4 weeks, but in the meantime my research will continue and I will learn everything possible about the
good things as well as the not so good things.  This will be a definite learning experience for me and a sharing experience.
thanks again.   

[Boppie]

Agnes, I am 65, doing great, and not thinking about my An these days...just to encourage you.  Life rolls on. 

Keep in touch with us.

[Betsy]

Hi Agnes, and welcome.

The first few weeks after diagnosis were hard for me as well.  Not only do you have to deal with the realization that there's something in your head that doesn't belong there, you practically have to learn a new lauguage to understand what it all means, although as a medical transcriptionist you may have the advantage there.  Once I got over the initial shock of having a brain tumor(which I kind of already knew) the more I learned, the better I felt about dealing with it.

At 6x12 mm, your tumor is small, and you'll probably have options.  Four weeks is a long time to wait though.  Can you get on a waiting list in case they have a cancellation?  In the meantime, there are places that will review your films for free.  I can't think of where it was at the moment, but read through some of the recent posts and you'll find it.  Maybe it was House Ear Clinic?

I'm glad you found this support group too.

Betsy

[pearchica]

Hey Agnes: hope this finds you in relatively good spirits and health. You definately have the right approach to research and you will find the website great.  My husband and I were recently talking about the research I did and how each doctor had a different reccommendation and additionally how compelling each doctor was. It was hard at the time. So I guess I would expect you to have the same "challenge".  By my first doctor I was told translab and gamma knife, the second guy translab only, the third guy retro-sigmoid.  I then checked the website and found that Brucifer, Phyl and Mark all posted encouraging me to get a fourth opinion.  I'm glad I did now, I was able to have cyber knife at Stanford.  You are lucky (or not) as your tumor is small and provided you arent' having any major problems, you may be a candidate for wait and see.  As mine is bigger(2.5 CM probably a quarter size...mmm how many jelly belly measurement units is that?I will have to buy some jelly bellys to see ) I had about 6 months to decide and made my decision within 2 months.  Looking back I always wanted the least invasive procedure and I was grateful that I got what I wanted.

At any rate, welcome to club AN- I'm sorry you have to be a member, but know we are here and hear you!  Annie

PS Bruce- Agnes is Also my grandmother's name... to funny, it's not a commen name, but I have always liked it to.

[Jason_B]

I was diagnosed on Monday 08-06-07. After I saw a general nurse practitioner about 8 months ago, she told me that I had an ear cold, prescribed actifed, and told me to eat spicy food . Nothing was changing, so I found a good ear, nose, and throat guy and went to see him. As he could not rule anything out, he sent me for the MRI last Friday, and he gave me the results on Monday. (Well at least I had the weekend right?). Anyway, I have also been given the surgery option vs. radiation, and I am having trouble deciding. this is all too new and when faced with a decision like this, I am not sure I am prepared to make it yet. I have been reading some of the pro's and con's of both in here and I still cannot decide. In the end, I know it is a decision I have to make, but can anybody break it down for me in simple terms? Do I have to be awake for the surgery (if that is what I decide), or will I just go to sleep and wake up? Is radiation that risky? My AN is approx 2cm if that helps.

Please Help.

Jason

[BrianH]

Hello!  This is my first post.

I was diagnosed with an 8mm AN in my right ear back in May, and my doctor recommended a watch a wait approach, with a folllow up MRI in 4-6 months.  Unfortunately, my symptoms have been getting worse, the tinnitus seems louder at times, and I also experience increased facial numbness and tingling.  My doctor feels that due to the location of the AN, near the confluence of the two nerves in this area, surgery is a better option, and that it should probably be sooner than later.  While he has performed GK, he preferrs the accuracy of surgery and his ability to monitor damage to the nerves while the tumor is extracted.  He has less confidence in the accuracy GK, sayng he can only ensure within 3mm accuracy.  Last month I spoke with a another doctor, in a different state, an advocate of GK, who was confident in an accuracy of 1mm.

Jason_B, I feel your pain.  The thought of losing hearing in one ear is devestating.  I am an audiophile, play guitar, and love to sing to my children.  I am able to reconcile the potential loss of my sensory experience with the knowledge that great people before me and around me have endured worse and soared higher.  Think Hellen Keller, Ray Charles, and many of our brave soldiers returning from war with profound long term challenges.

I am leaning towards GK and will look for advice from my doctor to convince me otherwise.  I am also looking for a local second opinion, a GK advocate, with a proven track record.  It's frustrating beacuse the doctor I consulted with is highly recommended, but the risks and recovery time involved in an open cranial surgery are discomforting.

I am grateful for this forum and for the people who contribute their thoughts and experiences so generously.

[Jim Scott]

Hi, Brian:

Wow.  Lots of 'newbies' here!  Sorry you 'qualify' to join us but glad you found the site and this forum.

You didn't state the size of your AN tumor but I'll assume it's small enough for radiation treatment, since you're leaning toward that option.  I won't presume to recommend any particular treatment to you but GK is a well-established procedure with a good record of success.  Surgery, with all it's possible pitfalls and relatively long recovery time is never a favorite option, but sometimes it can be the best one.

As my signature shows, I had surgery and radiation (FSR).  That proved to be the best option for me but it may not be for you - or anyone else.  However, that approach allowed the surgeon to de-bulk the tumor and the radiation to kill what was left.  I had no serious post-op complications and recovered quickly.  I was driving again 2 weeks after surgery.  My last MRI (June, 2007) showed definite shrinking and visible necrosis of the remaining tumor.  My neurological tests also showed a dramatic improvement from just 6 months ago.  I wish every AN patient could have the same positive experience.  Unfortunately, some do not. There are no guarantees with AN treatment but being fully informed certainly can help you confidently arrive at a decision regarding mode of treatment, doctor(s) and facility.

I trust that you'll do the research necessary - this website is a fount of valuable information - and doctor consultations to arrive at a plan of action that has what you consider the best odds of success.  The folks here stand ready to help in whatever way we can.  Please stay in contact with us....and thanks for posting.

Jim

[NF-2er]

Jason:

   I see you've received good response.
   Just a note re, surgery; 2.0 cm is about 'breakpoint' of increasing surgical complications.
   But, of course, all Tx options remain open and available to you presently and all have reasonable success rates ( in the end and overall ). Exception: If you have serviceable hearing, Translab will probablly be contraindicated for a surgical approach.
   Surgery is done under general anesthesia and radiation done by an experienced and qualified team is not dangerous in the least.
   Are you willing to travel for Tx and what state do you live in? Also, a second opinion is advisable by both neurosurgy and radioncologists.
   I believe the ANA now has a list of qualified professioanals at http://www.anausa.org and also see http://www.irsa.com/ Maybe browse http://www.anarchive.org/ but realize this site is a bit biased toward radiation but has a lot of useful information. There may be an 's' at the end of 'archive'.
   Best wishes for the best choice FOR YOU, and best outcome!

   NF-2er

[Jason_B]

Update:

Dr. Murray called me on my way home from work tonight, after I had made an appointment for the initial consult with the Radio-Oncologist. He indicated that I will not need to make a choice between surgery and radiation. No. For me it is both. As it turns out the AN is close enough to the brain stem that the RO does not want to risk nerve damage and indicated they should remove what they could, and zap the rest. Just keeps getting better and better eh? In most cases, I love being called exceptional, but this is one instance where that is not such a good thing. I am trying to keep a positive attitude about this whole thing, but it is getting so hard.........

Jason

[sgerrard]

Hello!  This is my first post.

I was diagnosed with an 8mm AN in my right ear back in May, and my doctor recommended a watch a wait approach, with a folllow up MRI in 4-6 months.  Unfortunately, my symptoms have been getting worse, the tinnitus seems louder at times, and I also experience increased facial numbness and tingling.  My doctor feels that due to the location of the AN, near the confluence of the two nerves in this area, surgery is a better option, and that it should probably be sooner than later.  While he has performed GK, he preferrs the accuracy of surgery and his ability to monitor damage to the nerves while the tumor is extracted.  He has less confidence in the accuracy GK, sayng he can only ensure within 3mm accuracy.  Last month I spoke with a another doctor, in a different state, an advocate of GK, who was confident in an accuracy of 1mm.

I am leaning towards GK and will look for advice from my doctor to convince me otherwise.  I am also looking for a local second opinion, a GK advocate, with a proven track record.  It's frustrating beacuse the doctor I consulted with is highly recommended, but the risks and recovery time involved in an open cranial surgery are discomforting.

I am grateful for this forum and for the people who contribute their thoughts and experiences so generously.

Hi Brian H,

Your post seems to have snuck in between Agnes' and Jason's, and maybe got overlooked. Sorry to hear that you have an AN, but glad to see that you found this forum.

I have spent a bit of time researching radiation, along with surgery. Accuracy helps, of course, but for instance, the local surgeon/otologist I am seeing said that even when tumors are removed cleanly, and the monitored nerves are still functioning, you can still lose nerve function within a year, due to the sudden change in blood supply caused by removing the tumor. It is not a clear cut case either way.

I hope you get a chance to do some research on radiation options, they have some good success rates with good nerve function retention. None of the treatments can guarantee nerve preservation, but all have some success in doing so. You should still have enough time to find other doctors for additional opinions, and to research web sites and this forum for "centers of excellence" in both surgery and radiation treatment, along with studies on outcomes of both kinds of treatment, and lots of support and ideas.

Best wishes,

Steve

[BrianH]

Thanks for your consideration Steve.

I just finished reading the "why choose surgery" thread, and clearly there are numerous variables at play, each contributing to make a difficult decision all the more so.  Is the "Centers of Excellence" moniker an official designation indicating a facility that performs 40 or 100 treatments/surgeries per year, or is it slang for facilities that are recognized for their particular speciality.  I'm looking for a way to narrow down my choice of facility if I move forward with GK.  I have not completely ruled out surgery, but I have concluded that I will get another MRI in the very near future, and make a decision, particulary if the growth has increased.  I think I am more confortable with the tumor remaining in my head, hopefully in necrosis, than I am having my skull cut open. 

My father is a Radiologist, and he points out that technological advances in radiation therapy are more likely to evolve exponentially than traditional surgical techniques.  IOW, if my GK proved to not be fully successful now, it could be improved upon in only a few short years. 

Also, the Otologist I saw who prefers surgery and also performs GK says that he can only get within a margin of error of 3mm with GK.  The GK specialist I talked to in Ohio (I am in Michigan) says her application is typically within 1mm.  I have a friend with a Masters in Science from MIT who says he has calibrated similar equipment within 1mm, and that the Ohio doctor sounds more true to form.  Anyone have any other information?  Should I take this discussion to a different thread?

[Mark]

Brian,

Just to chime in on a couple of your questions:

Centers of excellence would generally be a "moniker" given to those teaching medical centers that meet a variety of criteria for a specialty such as neurosurgery. it does not necessarily guarantee great experience with AN's

I would agree with your father, radiosurgery has the potential to evolve at a much quicker rate than current microsurgery as a treatment of choice for ANs.

The Otologist who prefers surgery is absolutely wrong with the 3mm total error but the GK specialist is closer to right. GK, total error which includes the CT, Frame and machine, will run between 1.25-1.5 mm in accuracy. You might also want to consider  a Cyberknife if one is available in your area. It has clincial studies which put it at .89 mm total error and it doesn't require the head frame being screwed in

Mark

[sgerrard]

Sorry about the "centers of excellence" bit, I have obviously been reading too many institutional blurbs lately. 

All I meant was that there are a number of places where AN surgery or AN radiation treatment is practiced by a group of doctors who are actively engaged in developing and improving AN treatment, along with other spine and skull tumor treatments, who actively keep up with the literature, and who actively discuss and review cases with each other every day. I think these places deliver better treatment than the places and doctors that just go by the book and almost seem to phone it in, so to speak.

My suspicion is that the fuss over mm of accuracy is overblown. If you watch a few videos of AN surgery being performed, the notion of millimeter accuracy goes right out the window. They have to tug the little suckers off sometimes. Radiation doses don't drop from 100% to 0% at the edge of the tumor; it tapers off. Typically GK is aimed so that the dose at the edge of the tumor is 50% of the peak, or something like that, making the dose beyond the edge 40%, then 30%, etc. The whole treatment plan is designed so that the tumor gets the big hit, and the dose to nearby structures is minimized, but not 0.

Surgery or radiation, neither one is perfect, but fortunately both are quite well developed these days, and will continue to get better every year.

Steve