Looking for feedback

[Sara]

First of all, my apologies. I don't mean to start a new topic, but I must be going blind or stupid and I don't see an icon or anything that simply says "post" to be able to post a message in an existing thread...

In any case, I just signed up to this forum, but it's been a few years since I was diagnosed with an AN, in 2005 to be more specific. I decided to watch and wait because I felt none of the options given were going to make the problem go away and I felt just fine--just some ringing in my ear and mild hearing loss. Fast forward to May 2009 when I decided to have another MRI to see what was happening. Unfortunately the AN has grown to 2.5 cms. My hearing loss is a bit more (can't talk on the phone on the left ear), but not awful, I've not had any balance problems; I just continue to have ringing in my ear (now louder), but I can manage just fine.

I live in Northern Virginia and saw an ENT who even 4 years ago said I should have surgery. I saw Dr. Wright then and spoke with Dr. Steiner (at UVa). I decided to do nothing. After finding out that the AN had grown, I spoke with Dr. Weingart at JHU, with Dr. Wilkinson at House Clinic, and with Dr. Steiner again. Dr. Weingart at JHU said I should have surgery (agreeing with the ENT); Dr. Wilkinson and Dr. Steiner said I was still a candidate for GK. I am 49 years old and heard the same thing as many: I'm still young so surgery is best.

I've read many of the posts on this forum and other information, which I've found extremely useful and interesting. I have considered surgery, but I'm still concerned about all the side effects, not to mention the surgery itself and recovery period. So I am inclined to do GK, since from what I read, seems to have fewer side effects though the tumor remains in the auditory canal. I would love to hear of others who have been in my same situation (late 40s, medium size AN), plus any current doctor recommendations you may have. When looking through the posts, I've never seen Dr. Steiner mentioned, though he seems to be THE GK person to go to in the mid-Atlantic region. I wonder why there aren't postings on him. I was also considering the House clinic but after reading the info. on their website and the fact that Dr.Wilkinson there was somewhat recommending GK, I'm more reluctant: their whole focus seems to be surgery and they really diss GK.

Sorry this is long...thanks for "listening" and look forward to your feedback!

Sara


 

[Jim Scott]

First of all, my apologies. I don't mean to start a new topic, but I must be going blind or stupid and I don't see an icon or anything that simply says "post" to be able to post a message in an existing thread.

Sara ~

Look down at the bottom right-hand side of an existing post and find the 'reply' box.  Click on that and it will bring up a blank message screen where you can post a response.  Then click on 'post' (at the bottom of the screen). 

In any case, I just signed up to this forum, but it's been a few years since I was diagnosed with an AN, in 2005 to be more specific. I decided to watch and wait because I felt none of the options given were going to make the problem go away and I felt just fine--just some ringing in my ear and mild hearing loss. Fast forward to May 2009 when I decided to have another MRI to see what was happening. Unfortunately the AN has grown to 2.5 cms. My hearing loss is a bit more (can't talk on the phone on the left ear), but not awful, I've not had any balance problems; I just continue to have ringing in my ear (now louder), but I can manage just fine.

I live in Northern Virginia and saw an ENT who even 4 years ago said I should have surgery. I saw Dr. Wright then and spoke with Dr. Steiner (at UVa). I decided to do nothing. After finding out that the AN had grown, I spoke with Dr. Weingart at JHU, with Dr. Wilkinson at House Clinic, and with Dr. Steiner again. Dr. Weingart at JHU said I should have surgery (agreeing with the ENT); Dr. Wilkinson and Dr. Steiner said I was still a candidate for GK. I am 49 years old and heard the same thing as many: I'm still young so surgery is best.

I've read many of the posts on this forum and other information, which I've found extremely useful and interesting. I have considered surgery, but I'm still concerned about all the side effects, not to mention the surgery itself and recovery period. So I am inclined to do GK, since from what I read, seems to have fewer side effects though the tumor remains in the auditory canal. I would love to hear of others who have been in my same situation (late 40s, medium size AN), plus any current doctor recommendations you may have. When looking through the posts, I've never seen Dr. Steiner mentioned, though he seems to be THE GK person to go to in the mid-Atlantic region. I wonder why there aren't postings on him. I was also considering the House clinic but after reading the info. on their website and the fact that Dr.Wilkinson there was somewhat recommending GK, I'm more reluctant: their whole focus seems to be surgery and they really diss GK.

Sara ~

Welcome - and I'm sorry to learn of the growth in your AN.  I don't have any recommendations because I underwent both surgery and radiation (FSR), am much older than you and don't live near your state so I have no knowledge of the doctors you referenced.  However, I'm sure other posters will have suggestions and information for you as many of our members successfully underwent radiation at or around your age.  In any case, thanks for your kind words and much success as you make a determination on how best to deal with your AN. 

Jim

[leapyrtwins]

I am 49 years old and heard the same thing as many: I'm still young so surgery is best.

Hi, Sara and welcome to the Forum.

Your statement (above) puzzles me.  I was 45 1/2 at the time I was diagnosed with my AN and I had the option of both radiation and surgery.  I ultimately decided on surgery, but that was my decision - it wasn't because I was too old for radiation.  There are many people your age and younger who choose radiation - usually the biggest limitation on treating ANs with radiation is size of the tumor (usually over 3 cms).

I'm not "pushing" radiation here - treatment decision is a very personal choice - but if you think radiation might be for you, by all means check into it.

Not all docs consider radiation a good option - but in my experience, that's generally because they only do surgery - or the size and/or location of the AN is a factor.

If the doctors you have consulted with don't treat ANs with radiation, you might want to find one or two who do and see what their opinion is.

I don't know if you ever asked the ANA for their literature, but if you haven't, you should.  You'll find it very helpful - and it can help you solve your treatment dilemma.

Best,

Jan

[Pooter]

Sara,

Hi and welcome to our little exclusive club!

I'm with others in saying that treatment choice is a very personal one and one best made by the patient with advice from their doctor (whoever they feel comfortable with), their loved ones, and relevant experiences of other AN patients.  But, ultimately the choice is a personal one, so it should remain that way.  I.e.  Don't choose a treatment method because someone told you to do it and it's not what YOU feel is right for you.

With that said, you should also be aware that while you don't have major symptoms now, radiation COULD cause more symptoms after treatment.  This is because initially the tumor is likely to get bigger (swell) after treatment.  It's got to go somewhere and so it is possible for it to "swell" into other nerves (e.g. facial nerve) and cause otherwise unseen symptoms until treatment.  So, just because you don't see them now doesn't necessarily mean that you won't after treatment (even if temporary).

Contrast that with surgery in that you won't see other symptoms because of swelling, but you could see other symptoms in REACTION to treatment.  What I mean is that, for example, the facial nerve may be disturbed or "ticked off" that the surgeon is in there messing with things very close by and therefore you may see symptoms that weren't there before.

What symptoms are there prior to treatment is not indicative of what you may or may not have after treatment (either surgery or radiation).  What we do know for sure is that by doing nothing, if the AN continues to grow your symptoms will get worse / more of them.  Ultimately if the brainstem gets enough pressure from the AN as it grows, you will likely experience very pronounced symptoms if nothing is done.  Luckily, AN's generally grow slowly (1-2mm per year), so you have some time to decide on a course of action for treatment.

Bottom line is that each treatment type has it's risks for post-treatment complications.  No two AN's are alike and post-treatment symptoms (if any) are unique as well.  What you now have to decide is that if the associated rates of risk for certain symtoms are easier to live with (if they happen) with each treatment type.  For example, with Translab surgery hearing goes completely by default, but you have less of a chance of post-op headaches.  However, with Retrosig surgery, hearing has a theoretical chance of staying at the level that it's at pre-op, however there is a higher chance of post-op headaches.

Do your research..  figure out what "chances" there are for certain complications for each treatment choice.  And then decide what YOU can live with..

Like Jan, I'm not "pushing" any treatment choice in particular..  I'm just offering advice on how to go about deciding on a treatment choice.  My advice is free and you can do with it what you want.  Feel free to use any or all of it that you want.

We're all here to help in any way that we can so that you can make the best decision FOR YOU as possible.  Ultimately, it's YOUR choice and we won't purposely steer you in one way or another.

Again, welcome to the forum..  You're definitely in the right place for support.

Regards,
Brian

[suboo73]

Hi Sara,

So GLAD you have posted on the Forum, WELCOME.  The folks here are FANTASTIC, as you know!
I live in the "Top of Virginia" and have been to John Hopkins (Dr. Tamargo-neurosurgeon) for a consultation, as well as a radiosurgeon (GK).
My ENT is at UVA - the docs here were clueless and told me i was 'getting old' and that was why i was losing my hearing (at 40!)  [I am 53 years young now.]

At approx. 1cm, Dr. Tamargo was very honest and told me he thought i could consider surgery or radiation, but i should take action right away.
[scared the crap out of me!]  But i was determined to do my 'due diligence' and hear my options.
I also saw the radiosurgeon too, and he said i had lots of time, no rush. WHAT???!!!!

Over the last year, i have read alot on the Forum, too, and decided that this decision (for treatment) is mine and mine alone, so i try to ask questions, keep up with the MRIs, and then weigh my options. 

Frankly, if i had to choose today, i would choose CK at Stanford, going for the best with the most experience.  But i have heard very good things about Georgetown and Ck with Dr. Gagnon (i think i have that right!)  Search for Novagirl + goingbatty - i think they both went to Georgetown Unv. for CK.

My sister is here, too with 2cm AN (aka Bigsister)  She has been to one doctor and totally satisfied to be in W & W for another year. 
Me, i am not done searching my options at this point, but feel confident that through this Forum i am a well-informed AN patient.

Feel free to send me a PM if you want.  I will be happy to talk to you by phone, too.
Others, like Zinger 1095 - in the current AN Newsletter - had surgery with Dr. Tamargo.

Now one last thought - the resident that 'assessed' me on Dec 4th told me i was young (thank you!) and if he were ME, he would have surgery.
OK, whatever.  It is MY brain that would have the surgery, so please - i appreciate the information, but let me make the decision! 
Sorry, i don't know of Dr. Steiner, but hopefully others will chime in.

All my thoughts and prayers are with you during this decision time.

Sincerely,
Sue

[Nickittynic]

Hello from nearby MD!
I had surgery with Dr Tamargo at Hopkins. If you have any specific questions about him or Hopkins send me a private message and I'd be happy to tell you about my experience.

[Sara]

Thank you all for your feedback! I appreciate it tremendously 

Just to clarify, I was told I should have surgery because I was still young and because radiation studies were not conclusive yet in the very long run (20-30 years into a person having had radiation).

I agree with everyone that the decision on which treatment to go for is very personal, but it certainly helps to have this forum to ask questions and get feedback. Right now I am leaning towards radiation and I understand that it can also result in symptoms showing up that weren't there before, just like surgery. The reason I'm leaning towards radiation is that I'm not one who favors invasive surgery like this one would be, there are many inherent risks to any kind of surgery, recovery tends to be long, and the results are not guaranteed either. Radiation seems to have some drawbacks too, but overall it seems that the procedure itself is more manageable. But, of course, I continue reading and educating myself.

I still would love to hear from anyone who's had experience with Dr. Steiner or the Gamma Knife center at UVa... It seems from what I can read that their center and the one at the U. of Pittsburgh go hand in hand with radiation treatment. I haven't yet looked into Cyber Knife, but I will.

I do have to make a decision relatively soon though as the AN will probably continue growing and I don't want to get to the point where surgery will be pretty much the only option...

Again, thank you all, and if you have other feedback, please keep it coming!

Sara

[suboo73]

Hi Sara, 

One of our fellow Forumites sites GK treatment at UVA in his signature.
You can search for 'GM.'
Hopefully he will see this post and respond.

You could also send him a PM.

Keep posting your questions!
Sincerely,
Sue

[Mark]

Hi Sara,

Here are a couple of links for your CK reasearch

Accuray is the manufacturer and here is a video of the machine. It focuses on the versatility of the machine for tumors beyond the skull, but gives you a pretty good idea of how it works. The patient Suzanne had an AN and has posted on this forum in the past

http://www.accuray.com/videos/redefining_radiosurgery.aspx?video=Accuray_Redefining_Radiosurgery

Possibly of more interest is a link is local SF bay area news spot on CK which features Stanford , AN treatment, and my Dr. , Steven Chang

http://stanfordhospital.org/clinicsmedServices/COE/cyberknife/index.html


Hope that helps,

Mark

[sgerrard]

Hi Sara,

I will chime in with a comment on physicians and radiation, since you are asking about it. I think it comes down to this: do you trust the radiation oncologists? If not, then you don't want to get radiation treatment anyway. If you do, then you should base your assessment of radiation treatment on what the radiation oncologists have to say about it, not what surgeons, ENTs, or nurse practictioners have to say.

Many medical people have a limited knowledge of radiation treatment, and don't understand the difference between Cyberknife and Gammaknife on the one hand, and whole brain radiation treatment on the other. If you look at the science behind stereotactic radiation, i.e. CK or GK, you can recognize that it simply doesn't have the same kind of risks as whole brain radiation. Swelling and related effects for a year or two, yes; dead hulk of a tumor still in you, yes; risk of cancer from it later in life, no. Talk to the doctors who do it every day before you make a decision about it.

I like the first video Mark posted. It plays like a commercial, but it covers many of the good features of CK. It is also worth looking at the CK forum. Practicing radiation oncologists answer questions, and yes you can ask about GK as well as CK. The site is http://www.cyberknife.com/forum.aspx.

Steve

PS: Welcome to the forum.

[novagirl]

Hi Sara - just wanted to say hello and welcome. I am also from Northern VA and currently go to Georgetown for my neuro appointments. I decided to watch and wait. My next MRI is in May and if treatment is needed at that point I will go for CK at Georgetown. If you get a chance, please go see him. Also, do check out cyberknife.com. The forum there is great and the doctors that respond to questions, literally get back to you within minutes. If you read some of the old posts (there is one that I started called Age?), there is a lot of discussion about side-effects, age considerations, etc. I am 33 by the way. Last time when I talked to Dr. Gagnon (the ragio oncologist at Georgetown), he said the youngest AN patient that they treated with CK was 19.
Best wishes

[mk]

Hi Sara and welcome,

I know how you feel, because I have been in your shoes, with an AN of similar size (actually larger) and not wanting to do surgery for many reasons (outlined in previous posts). Being basically asymptomatic, I thought I would try GK first and if it fails I can always have surgery. I should note that this is not a decision to be taken lightly, since with an AN of this size there are problems like potential swelling that can come up, as Pooter explained in detail.

Anyway, I was very fortunate that the treatment has worked for me, at least up to now. The growth has been arrested, I didn't experience swelling (which I attribute to the GK team choosing a carefully planned treatment), my hearing has remained the same, and I didn't have any other side effects. As everyone else has said, choice of treatment is a very personal decision, and the best thing you can do is  consult as much as possible and ask many questions. For example the location of your AN relative to the brainstem would be a consideration with a medium-large AN. As for the choice of a GK team, you should keep in mind that GK has been around for 30 years, and it is a very mature technology. The equipment used is pretty much standard, as well as the way treatment is planned. So you shouldn't expect big variations from centre to centre. One thing that is important however is the quality of the followup. I have read of way to many patients complaining about the poor followup care that they have received, which can be very frustrating, especially when problems crop-up after treatment.

Best wishes,
Marianna

[mandy721]

Hi Sara,

I will throw my 2 cents into this discussion based on what my husband has gone through.  If my husband's AN had been treatable by CK of GK, he would have gone that route.  Unluckily for him, it was  over 3cm when first diagnosed and surgery was considered the only course of treatment.  Ken's symptoms prior to surgery were minor, partial hearing loss and partial numbness of tongue and lip, and he was in good physical shape and 52.  He came out of the surgery 4 1/2 months ago with a myriad of complications that have had a profound effect on his life. 

[Vivian B.]

Hi Sara,

Welcome to the forum. I am actually goin on 47 years of age in Feb. 2010 and it seems that it's a mid mark for both good results with radiation or surgery. It's very difficult to make a decision and one that the doctors don't make for you. I myself have spoken to a surgeon, neurosurgeon and two oncologists. I am not comfortable with either treatment per say but I am leaning more toward the gammaknife. No date scheduled yet. My next MRI is in May 2010. Once you know you require treatment, it takes a little while to digest everything but eventually you tend to choose the treatment that you think you are most comfortable with. It's almost a natural instinct. I also have hearing loss, I can no longer use the phone on my right ear, I have ringing lately worsening and my balance is good but not as good as it used to be. Funny enough I have adjusted to everything including carrying an intruder with me wherever I go. Hope you make a decision soon.

Vivian

[CHD63]

Sara .....

I want to add my welcome to this Forum of caring, supportive people.  As others have said, the decision for type of treatment is yours alone.  You are doing the wise thing to look at all of the possible treatments and then, at some point you will trust your instinct and make your decision.  Keep in mind that every doctor and every AN patient is somewhat biased towards the type of treatment they have used or experienced the most.  No outcome from any type can be guaranteed based on someone else's results.  We all have unique bodies and therefore all ANs are unique and each person's journey will be unique.  Therefore, because someone had a horrible or an excellent outcome from any treatment, it does not guarantee someone else will.

My recommendation would be to choose your medical professional very carefully.  Because ANs are considered rare, it is essential that your doctor be well experienced in treating many ANs, not just a few.  I went out of state for both of my brain surgeries to the best care I could find at the time and had excellent results from both.  Caution:  see what I said above ..... 

Thoughts and prayers as you make these decisions.  Let us know how you are doing.

Clarice