New Patient: First Impressions

[sgerrard]

I was diagnosed June 5 with a small AN, 0.8 cm long, in my left ear. I have partial hearing loss, chirping crickets, and that fullness feeling as symptoms. I was referred by my ENT to Dr. Hodgson, Portland, Or. and saw him last Thursday. Since then, I have been pouring over this site, several others, and the MRI images. I wanted to post something, and see if my impressions sound right to any of you.

1. Dr Hodgson, besides being a good surgeon, has suggested that I would be a good candidate for radiation therapy. Based on posts in this forum, it seems to be quite rare to find a surgeon who will recommend radiation, so I feel lucky, and I am giving it serious consideration.

2. He suggested calling the MRI lab and asking for a CD of my images, which I did, and they produced them for pickup the next day, no charge (EPIC labs in Portland). Pretty nice deal, and fascinating to explore.

3. My choices seem to be surgery - middle fossa, try to save some hearing; or radiation - gamma knife, probably with Dr. Bader; or wait a while, and then choose A or B.

4. It seems to me that the treatments address the medical concerns, mainly not having a neuroma grow enough to squish the brain stem or paralyze the face, but are not particularly good at addressing the symptoms, meaning the hearing loss, pressure sensation, tinnitus, etc. The post-treatment experiences reported by many don't sound much better than the symptoms I have now. Is that a fair assessment?

5. Radiation therapy seems to have improved quite a bit, and there are now quite a few reports of success, with generally fewer side effects than even the best performed surgeries. For a neuroma less than 1 cm, it seems like a smarter choice to me. Am I missing something?

6. Since my neuroma is small, and treatment is not going to fix the unpleasant symptoms of pressure or chirping or hearing loss, there seems to be no rush to do anything. When does waiting stop being okay and start costing me something down the road?

Thanks to any who reply, and thanks to all posters for sharing information and points of view on this site. None of my friends or family have one of these, so having some place to find people who know what it is like is great.

[Windsong]

Sounds like you have  a great handle on things and a good doc....i admire your list of points....

My An was around 2 cm when I had treatment so my own "watch and wait" happened without my knowing about all this lol as i had treatment shortly after diagnosis ... it grew before I was told i had it ....

I know of a woman who was watching and waiting for about a decade and she was (i think) approaching late seventies last I heard. There are others who watch and wait younger too.  Then again it seems that halting it at a smaller stage is a good idea too. What does your doctor say? I'm thinking  that your present symptoms  indicate how soon you should do something.... along with your age/ location of An/ hearing loss or not at this time/ other health issues/ personal wishes/ nerve involvement at this time/ your chosen doctor's thoughts etc....

You are right... the focus is on stopping the growth ( and that is slow usually although some might take off faster) and the rest is hopefully as much minimal side effects as you can get....

All the best and good wishes. I am sure others will give/ tell their experiences soon.
Take care,
Windsong

[Sue]

Hi Sgerrard,

I am living in Vancouver WA, (but formerly from NE Portland) and when I was diagnosed with my AN March of '06, I too was lucky that my neurosurgeon felt that I was a good candidate for radiosurgery. I had my GK at Providence with my neurosurgeon Dr. Modha, and with Dr. Bader, in April of '06.  My AN is medium sized, and I didn't want to wait and my doctor recommended having something done sooner rather than later.

The "fullness" in my ear actually subsided before I had GK. At least one symptom went away!! Thank God for small favors. Yours still might go away.  Anyway....most AN patients suffer with different levels of tinnitus permanently...radiosurgery or surgery. It's something our brain locks onto...and won't give up very easily. 

Also...Legacy Hospital in Salmon Creek has CyberKnife now, in case you want to check that out.

You are going to find many people who chose microsurgery who are very happy with their outcome and you will find many people who chose microsurgery who are very disappointed in their outcome.  No one can say for certain how YOU will get rhough the procedure - whether it will be a piece of cake with no complications or if you will end up with headaches, balance problems or other issues. 

I still am left with hearing loss (only a very lucky few retain a high level of hearing in my opinion), facial numbness on my AN side which was my final symptom that finally led to a diagnosis, tinnitus (annoying but mostly managable), and that also affects the inside of my mouth on that side and the side of my tongue, sometimes a salty/metallic taste, minor balance issues which I notice the most on un-even ground (like soft sand) and the hard to define "light headedness" or "spacey" feeling that can vary from day to day, or from situation to situation...traveling in cars, being in malls or large stores, places with lots of commotion and "motion", I guess.  That seems to have gotten more noticable after my GK, but this explains some things that happened to me before I ever knew I had this darn thing.  That symptom is because the balance nerve is compromised and that can lead to all sorts of weird things...in my opinion!

Dr. Bader said I'd probably eventually lose all the hearing in my AN ear.  Not very encouraging.  The audiologist said I should get an aid because by not stimulating the hearing nerve, it will atrophy and lose more of my hearing.  Still not very encouraging. But I don't have $3000 to buy a hearing aid that may or may not work for me... There are many people who deal with single sided deafness (SSD) and do just fine. There are things to get used to - being sure to watch out for cars and such on your "bad" side for one!  There are also some folks on here who have tried some new aids and they are doing pretty well with them. 


I think doctors certainly try to help their patient retain or keep as much hearing as possible with the treatment that they use, and in the case of microsurgery, they certainly try to preserve the facial nerve as best as they can...but as far as tinniitus and other residual effects...there isn't much they can do about that.

And yes, you could be a wait and watch person for a long time, since yours is small.  I sure wish mine had been caught sooner.  It's just weird how we are all so different given that the space in which our AN is isn't that big, but it's all about location, location, location I guess!

I wish you the best of luck and hope whatever you decide works out well for you.  If you want to talk to me personally since we're in the same area...that's fine with me. Just let me know.

Sue
Vancouver USA

[Mark]

Sgerrard,

I would answer "yes" to all your points and add the following to number 4, What hearing you've lost is generally gone as it is rare to have it improve after any treatment. Tinnitus is a reaction of the brain to a "misfiring" nerve and can either worsen or lessen after either surgery or radiosurgery.

The risk in waiting is that your current level of symptoms can and usually will worsen over time. This aspect needs to be weighed with the potential for deficits related to the treatment. Generally, these are less with radiosurgery than surgery , particularly as the size of the An increases.

Otherwise, I would agree with windsong that you have a pretty good handle on your options and timing

Best wishes

Mark

[sgerrard]

Thanks for the replies, it really helps to hear some feedback.

If I have minimal if any balance problems now, is it reasonable to think that with GK or CK, I could manage to keep some balance nerve function? That would be a reason to act sooner rather than later. My impression is that radiation might ding it some, but that microsurgery pretty much guarantees losing it.

Sue, I appreciate your offer, I may well contact you this month about your experience with GK in Portland and Dr. Bader. I am wary of the new CK in Vancouver, I'm not sure any one there has done ANs before. I did speak with my insurance company today, and that sounded very positive, they might even support seeking out CK at Stanford.

  (seque to Mark)

Mark, do you think it is worth the trip to Stanford to get CK, over what I think is a good GK team here in Portland? And if so, how would I contact them to find out about it?

And Windsong, I may have misled a bit, the doctor did not suggest that waiting very long was a good idea, only that I could take a little time to explore options. I think the general consensus is that the the smaller the better, as far as when to get treatment.

Thanks again to all.

Steve

[Mark]

Hi Steve,

In response to a couple of points on your last post:

If I have minimal if any balance problems now, is it reasonable to think that with GK or CK, I could manage to keep some balance nerve function? That would be a reason to act sooner rather than later. My impression is that radiation might ding it some, but that microsurgery pretty much guarantees losing it.[/i]

 Generally, yes, while there may be some post treatment brief bouts of vertigo, the vast majority of folks I've talked to over the years have no worse balance symptoms than before treatment.

Mark, do you think it is worth the trip to Stanford to get CK, over what I think is a good GK team here in Portland? And if so, how would I contact them to find out about it?[/i]

 I guess the first question is how big are the issues of cost and time to come down to the Bay Area from Portland? I am not familiar with the new CK up in Vancouver but there are two schools of thought there. Almost all new CK centers involve docs who are very skilled and experienced with GK and are simply upgrading to a new technology. They also have a lot of training on site at places like Stanford or Dr. Medbery over in Okie City. They may not have a lot of experience with CK , but maybe with AN's, you'd have to ask them. I don't know much about the GK facility you are working with in Portland and I'm sure they are quite good as well and the GK is certainly effective in treating AN's.
In terms of overall experience probably neither of them would match up with Stanford given it's a top ten neurosurgery medical center and uses all the machines. I would certainly highly recommend Dr. Chang or Dr. Adler who invented the CK at Stanford. As I've responded to others in the past, how you want to be treated is an issue as well. If you are comfortable with a one dose protocol then either machine is equally effective and the issue is whether having the frame screwed in with GK is a problem for you vs. CK which uses a mask and is still slightly more accurate. If you feel more comfortable with a staged treatment of three days, then CK is your only choice.
If it was me and a Southwest ticket and a few nights in a hotel were not a hardship, I guess I would choose CK at Stanford, but, hey, I was treated there so I admit to some bias 

If you want to contact Stanford, here are some links that might be helpful

http://www.stanfordhospital.com/clinicsmedServices/COE/cyberknife/makeAppointment

http://www.stanfordhospital.com/clinicsmedServices/COE/cyberknife/ourTeam

http://www.stanfordhospital.com/clinicsmedServices/COE/cyberknife/default

http://www.stanfordhospital.com/search/PhysicianDetail?doc=2077

Mark

[Sue]

Hi Steve,

In case you haven't seen this site:

http://www.providence.org/oregon/programs_and_services/gamma_knife/default.htm

Just so you know what the home team does!!

Sue

[ppearl214]

Hi Steve and welcome. Sounds like you are most definately become well informed with the terrific support here. Many of us had "small" AN's such as yourself (your's is about the same size mine was at my time of treatment last year).  I wanted to say welcome and sounds like you found a terrific new "home" here on the forums... lots of help and support to be given.

Again, welcome.
Phyl

[sgerrard]

Thank you all for the replies. I have responses from all the heroes it seems: Mother Hen Phyl, Daddy Bruce, Brother Mark, and Sister Sue!

The link to the GK Center of Oregon from Sue is great, a nice confidence booster. And thank you Mark for the extended comments and links on CK at Stanford. I have a friend in the Bay Area, so it could work out well, if the insurance is willing, but GK Oregon looks good too, and I could go back to work the next day, maybe. Hmmm...

And then Bruce, with that sensible view on watching. My one concern there is if balance started to go. As you put it, my quality of life with my current symptoms is very tolerable, just annoying sometimes. And it seems like MRIs are in my future, right along with visits to the dentist, in any event.

One thing I have already decided: I am not going to spend every waking minute on this little blob. It is also good to have a regular day now and then. These first weeks I have been pretty obsessed with it, but I am now feeling better emotionally about it all. I am sure I am already less withdrawn, now that I know more or less what has happened, and have a sense of what ranges of outcomes I can expect.

More later, and thanks again, Steve

[ppearl214]

Hey Steve,

Oh, we all need a break from time to time... trust me on that one.  Since your AN is small, you do have time to research, research, research, as well as step back and take time away from your AN journey.  Heck, we all do it from time to time.  We're here for you, regardless, so sit back, read the threads, try not to become too overwhelmed by info shared out here and to make the best informed decision you can for you... since emotional well-beings (for us all) certainly need huggles as well...

Hang tough, we're here if you need us.

Signed

Mother Hen Phyl

[pearchica]

Steve, you sound like you have a complete grasps of all the facts. I hope this finds you in good spirits and health. Let me know if I can answer any questions you may have about cyber knife.  Take care, Annie