Struggling with Options

[ppearl214]

well, it's time for me to extend my hello's and welcome to Gregory! Hi Gregory... I see everyone is giving you great advise thus far... and would expect nothing short of that from everyone!

In addressing some questions.... you noted the chance of potential radiation could cause cancer.  In the use of CK, etc... the chances of me getting hit by lightening is of greater % than of me getting cancer from my radio-treatment. For me, since the incidences are so very low, it was on the low end of my decision-making list/factors.  Knowing the chances were so low, for me... it wasn't even brought into the meld of thoughts as I refused to be an ostrich with my head buried in the sand. 

Ah, the analytical mindset vs. the "gut".  I can tell you are doing all the research  you can and becoming the best, well-informed patient you can be.  Just a thought... I would follow up with Steve's initial suggestion of asking the docs on the CK support forum (fyi... they volunteer their time to answer patient questions, are practioners of GK and CK and try to be as unbiased as possible).  They can give you stats and such for the cancer question (if you don't find it here by doing a "search" option from the main forum page)... they can give you recommendations for CK treating facilities around the world... etc.  In the end, even if armed with all the stats and with others sharing experiences of their AN "journey", your gut will help guide you to the ultimate decision that will work best for you.  I can take all the stats and try to sift through everything.. and in the end, once I've sat there with them, staring at them all, my gut wins out in the end as it points me to the highest success rates in any medical treatment I may be seeking out.  It will help guide you to do what is best for you and your particular situation.

Anyway, just my 2 cents.... but, did want to extend a hello and welcome..... and sending wellness wishes to you.  Hang in there...

Phyl

[mk]

Hi Gregory and welcome

I wanted to follow up on Trish's message, because I think that the two of us make an interesting case of very similar situations, where we chose different treatment options. Kind of like a "randomized" study. Our ANs were very similar in size (about 2.9 cm), same age (well I am 40 now  ), young families, never had health problems before and had minor symptoms going into all this. Diagnozed a few months apart, and going through the decision process together.

I chose to have GK (CK is not available in Canada, so it was not an option), because I was concerned about the recovery process, given that I don't have extended family or other support system around. I wasn't sure that I would be able to take care of my two kids (2 and 6), in the absence of help. The other factor was the lack of an experienced surgical team in my home town, meaning that I would have to seek care in one of the big centres. I just couldn't figure out the logistics with the kids and all.
So although very borderline in size, I opted for radiation, hoping that it would do its job and stop the AN from growing, at least "postpoing" the need for imminent treatment.

I didn't have any side effects from the treatment, I have been very busy and didn't lose a day at work, and my 6 month MRI showed no growth and darkening at the centre, implying "partial necrosis" according to the radiologist report. Of course, I am always aware of the fact that the AN is still there, compressing the brain, but I am hopeful that as the necrosis continues, the distortion will become less. As long as it stops growing I am happy.

I think that these "parallel" stories show that fortunately there are many options for treatment, which can have successful outcomes.

Best wishes in your decision process
Marianna

[Nancy Drew]

Rosemary,  Are you really my husband undercover on this discussion board!!!  Seriously,  my husband does spread sheets for everything.  He is also an engineer so I am sure it goes with the territory!  It is a very good tool to use.  I went with the pros and cons the docs gave me, and then somehow my "gut" kicked in.  My gut now tells me that I went the right route (plus, I have to make it work since I can't turn back), and I know you will get to where you need to be Gregory in making your decision.  Best wishes.  It is a difficult journey, but I think for the most part people have really done well with the treatments they have chosen.  Earlier in the week, I met up for lunch with two folks I met on this board.  They both had surgery back in August, and they are doing really well.  We ate outside on the patio, and the construction work down the street was a little loud, but we all made it just fine.  The two gals had SSD (I have maintained my good hearing, so far), and we just positioned ourselves so we could make it work.  Actually one of the gals is an avid bike rider, and her SSD is in the left which can be a problem since you need to hear the traffic on the left.  She took a bike ride recently, and she said she didn't have any problems hearing the traffic.  I have read so many positive stories, and I am sure you will have your positive story to update here as time goes by. 

Nancy

[Syl]

Gregory,

It's tough making a decision, isn't it? I chose surgery over radiations because I didn't want to wait 6 months to 1.5 years before knowing if treatment worked. Though surgery has more risks (CSF leak, infection, stroke) and much more down time than radiation treatment, I wanted to just be done with the procedure and deal with the hearing loss or facial paralysis if they happened.

I chose the retrosigmoid surgery, and 5 months after surgery I would say that I made out pretty well. I have a good deal of hearing loss, but am not SSD. I have no facial nerve damage, do have slight balance issues, more than my share of dizziness, headaches sometimes. I could certainly do without the side-effects, but none of them are a surprise. I got several opinions until I felt I had the info I needed to reach my decision. Once the decision was made, I felt a great burden was lifted off my shoulders. Then I went to 1 more Dr. and changed my mind.

I count my blessings and don't regret or second guess my decision. Good luck in making your final decision.

Syl

[RosemaryL]

Nancy Drew:  We engineers cannot lie - against our ethical code.  I really am not your husband operating under an alias. 

Gregory:  But seriously, in a non-engineering setting, I often find that quantifying the factors helps me figure out what my gut is trying to tell me.  We each have different things most important to us.  We each have to arrive at a decision by some method that allows us to be willing to live with the outcome of that decision - to avoid the wish-I-woulds after the results are known.

Good luck.
Rosemary

[Parkcomm]

Rosemary

I love the table approach - the only issue I have is find probabilities for each the risk categories. I'd love to see a clinical tool that lays out the probabilities of all of the outcomes, including the probability that you tumor continues to grow, expected recovery time and side effects.

Obviously the risks change based on the tumor size.

All the patient then has to do is enter the size of the tumor, and how important each of the possible outcomes is and bingo, a numerical score - it could also be used for watch and wait patients to set a trigger point.

It could even be an online tool - anyone know where I can source the data?

Brendan

[Pooter]

I don't know where you can source the data at, but location has to be a factor also in any outcome "risk".  Also, skill of the surgeon which is always subjective.  How can one accurately predict the outcome if using objective and subjective "statistics"?

Perhaps you could start by searching medical journals for the objective data.  Subjective, however, is a little more tricky to come by.

Regards,
Brian

[JohnnyDiaz]

Gregg, just a few months ago I faced the same dilemma you are facing. I am 39 with 2 beautiful children, I am blessed that my beautiful wife can stay home with the girls while I work to provide for us. So what a decision, huh? My biggest fear was not being able to provide for my family...

I really recommend (if you haven't already) is to find a local support group. I had to see the affects from both CK and Surgery up close and personal. I met some wonderful people and learned so much from personal experiences. I made my decision based on prayer and support from my family...

Proverbs 3:6 says In all thy ways acknowledge HIM, and HE shall direct thy paths.

4 months later and I feel great!! Positive thinking is key my friend. This forum is so helpful, so don’t worry about asking questions and sharing your thoughts and fears. Remember that a lot of us have been in the same position that you are in.  Keep us informed....

[Parkcomm]

I agree Brian,

and it only gets worse - it varies with time. If the data set is as recent a five years ago its already out of date.

I have been looking through the medical journals and found various samples sets, mainly relating to a small population, say one hospital, with ranges varying from article to article. What I'd like to get my and on is a broad study looking at multiple locations and a significant number of patients.

That could be used as a base line and adjusted for each location.

Brendan

[leapyrtwins]

Guys -

don't know if anyone realized it to not, but Greg's post originated back in November.  Did a little search and saw that he's already had surgery http://anausa.org/forum/index.php?topic=8381.0

So while the ideas on surgery vs radiation will still be helpful to some, obviously Greg's already made his decision.  And he's doing quite well, I see 

Jan

[Pooter]

Heck, I just replied to the reply.  That'll teach me not to look at the date(s) of the entire thread first..  It's still a worthwhile discussion to have.  Given that researchers have their own bias (to the institution that employs them) built in, I doubt that one could find a broad study encompassing patients from numerous institutions as is suggested.  It surely would be useful to those considering their options and places, but I submit that it would be hard to find because the researcher is more concerned with report his own instituitions successes (and sometimes failures) than other institutions.

That's one of the reasons that this forum is so unique and great.  People from all over the country and all over the world can share their experiences with procedures, doctors, facilities, remedies, etc..  So, we all are somewhat of a statistic group even if we're somewhat skewed by the population that visits and contributes.  As has been said by Jim before, MANY of those diagnosed and treated and have wonderful outcomes never come back after treatment.  There is only a handfull of those here.  That alone would skew "our numbers" into appearing less than positive.

Admittedly, when I first looked at the forum, it scared the d***ens out of me.  I saw just a few regulars with minimal "complications" and lot of people with them.  To me, that said that the chances of permanent complications was very high.   Over time, I have come to realize that my chances of permanent complications was much lower than that because there are so many that get treatment and then have no need for this forum any longer.  I chose to stay, in part, because I wanted others weiging their options for treatment that not EVERY surgery ends with permanent "complications".  You can have a successful outcome from surgery and eventually get back to a normal, happy, physically active lifestyle.

I've read before that "successful outcome" for a doctor / surgeon / radiation oncologist is very different than "successful outcome" for the patient.  To a person with permanent facial palsy they are much less likely to call it a "success" than the surgeon that treated them.  To the surgeon, if most or all of the tumor is removed and the patient lived through it, then it's a "success".

I could go on and on but you get my point.  Jan, Kay, Phyl, Jim, Steve, Debbi, JohnnyDiaz, Marci, etc.. can, in my book, be regarded as the beacon of light on the hill for those that have just gotten the dreadful news that we all got as "success" stories.  I think the more of us that stay around after treatment (or during watch and wait) and show that "success" is not what the doctor considers it such but what make of life after treatment, the more we can skew the numbers to be more reflective of true life.

Okay, I'll parachute (again) off my soapbox..  *WHEEEE!*

Regards,
Brian

[MAlegant]

Brian,
It's not a soapbox--it's a place of knowledge and wisdom.  I'm here and doing pretty well. Still have my job, my husband, my son, my dogs (sounds like a reverse country song  ).  I have issues, some of which will improve and some, I imagine, which will be with me forever.  I'm ok with that.  As long as I get to live my life to the fullest, I consider myself one lucky girl.  Like most of us here, I have survived a frightening ordeal and am permanently changed by it.  That's a good thing because I'm a much better person than I ever was before.  Love to you all,
Marci

[mimoore]

Welcome Gregory,

{Big sigh} It is sooooo tough to know what the right thing to do is. Great advice from Jan and many others.
 
You have a slight advantage, the fact that you know you have an AN. When I was diagnosed the dr could not tell me if it was an AN or a menginoma. I found out AFTER surgery what type of tumour it was. I often wish I had found out before surgery. I did tons of research on an AN and mengioma but felt pulled in all directions. 

I also found this forum after surgery and I can assure you that you came to the right place - yes you will need to make your own descisions but we are here to listen and offer support.
 
I still have some tumour left running along my facial nerve like a sausage and I may have to deal with it one day and if I do I know that my AN friends will be here to support me. We are here for you.

Michelle 
It seems like more and more people are discovering they have an AN.

[Jim Scott]

Brian:

Thanks for your worthy contributions, including your last post in this resurrected thread.  You made some valid points. 

I'll risk stating the obvious and add that this is a support site for AN patients.  The message boards are intended to disseminate useful information from other AN patients as well as offer a (sometimes) much-needed place to vent to those who truly understand what is happening (to another AN patient) and how it may be affecting them, physically and emotionally.  The phrase "we understand" is used fairly often and is completely accurate as well as meant to comfort those going through physical and/or emotional turmoil and pain. 

Those of us (like you, Brian) who make the effort to stick around and post here after our surgery/radiation and any accompanying problems may cease or be minimized, do so to encourage the newly diagnosed and remind them (and others struggling with post-op/radiation issues) that not only is an AN diagnosis not all doom-and-gloom and, post-op, remind the newly diagnosed that how you are today does not determine how you'll be tomorrow.  We have some folks that have come through real daunting problems (such as 'Capt. Deb' and her 'Headaches From Hell' and a few others who have surmounted similar difficult issues.  They are the real inspiration.  Those of us who experienced good outcomes to surgery and/or radiation want to encourage newbies with our experience and be there to offer support to those who don't have such a great outcome.  Because acoustic neuromas are relatively rare, we have to stick together to help other AN patients because there simply isn't that much support out there.  Family and friends, although usually sympathetic, often can't really relate to the distinct problems an AN presents.  We can - and  we do.   

I don't need a soapbox to pontificate, just an opportunity.  Thanks for giving me one. 

Jim

[Pooter]

Thanks for the posts Marci and Jim.  Although it's been tough this week so far, I'm usually around and posting.  I'm glad that you both contribute to this forum in meaningful and postive ways.  I agree that we need to stick together and offer each other the support from the real life perspective that we often don't get with doctors.  Family and friends are great, however they will never understand fully what we go through physically, emotionally, etc with this thing.  Like it or not, most people just have no grasp of what we all deal with on a daily basis both pre-treatment, during treatment and post-treatment.  Those that post to this forum that have been there and done that have LOTS to offer the newly diagnosed person.  There are very few things that are experienced for the first time; somewhere, someone has experienced it also.

On a bit of a lighter note, I had a "mini-woowoo" this weekend camping with my daughter.  I rode a bike for the first time post-surgery.  It wasn't my own nor was it for very long, but I was able to stay verticle (albeit somewhat wobbly).  Yea me! (a la "London Tipton".. if you get this, then you have kids probably). 

Regards,
Brian