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General Category => AN Issues => Topic started by: Mooretis on November 17, 2008, 07:40:58 pm

Title: Struggling with Options
Post by: Mooretis on November 17, 2008, 07:40:58 pm
I am 35 years old and have a 2.1cm AN.  I have met with doctors for both treatment options, surgery and Cyber Knife.  I have no symptoms other than hearing loss in my left ear, but can still hear out of it.  (It just sounds like I am in a tunnel and really have to concentrate to understand sometimes).   No balance issues, no facial numbness, etc.

While I am grateful to only be affected by hearing loss, I think it is making my decision to have surgery or cyber knife more difficult. 

One the surgery side, I am certain to lose my hearing completely on the affected side, risk facial nerve as well as other complications.   On the cyberknife side, the main issues is long term effects of radiation.   My doctor basically said that they do not have any long term data to know the long term effects of the treatment and that they know that in some cases radiation indeed causes cancer (not necessarily from cyberknife).   My AN is compressing my brain stem, so there really is not way to avoid the brain stem getting some level of radiation.  While they agreed that cyberknife was an option, they could not alleviate my concerns for long term complications.  I have two young kids and want to make sure I am around for the long term, even if it means dealing with short term issues related to surgery.

Gregory Moore
Title: Re: Struggling with Options
Post by: leapyrtwins on November 17, 2008, 08:08:11 pm
Gregory -

fortunately, or unfortunately, deciding on a treatment option is perhaps the most difficult part of the AN journey.  Making it more difficult is the fact that no one but you can make that decision.  We are here to offer your our experience, our advice, and our opinions, but we can't decide for you.  AN treatment is a very personal decision.

While I don't have an easy answer for you, I can tell you that you basically have to do your research, weigh the pros and cons of each treatment, and then choose the option that is best for you.  The ANA was some wonderful literature that might help you make your decision, you may want to consider contacting them and requesting it.

I, too, had the choice of radiation or surgery and I chose surgery for various reasons.  I am very happy with my results - no facial nerve damage, no eye issues, but SSD (single sided deafness).  It was the right choice for me, but it was my choice - it's not everyone's.

Jan
Title: Re: Struggling with Options
Post by: msmaggie on November 17, 2008, 08:23:19 pm
Hi Gregory,

You have come to the right place.  Making a decision about treatment takes a lot of research on your part.  Don't be afraid to send your MRI to lots of different clinics to get some input.  There are lots of people here on the forum who can give you the reasons why they chose their treatments.  My tumor is just a little smaller than yours, and I wavered between radiation and surgery.  After most of the drs. I consulted said surgery, I set the date.
I think there is a cyberknife forum -the name might have changed.  Drs. are on the forum and you can email them for some advice or input.

Good luck with your search!  We all have been through what you are doing right now, including making sure our priorities are in the right place!

Priscilla
Title: Re: Struggling with Options
Post by: sgerrard on November 17, 2008, 09:44:00 pm
Hi Gregory,

Fun things, these ANs, don't you think?  :P

If you are considering Cyberknife, you should have a look at the CK patient forum: http://www.cyberknife.com/Forum.aspx. It is easy to sign up and post questions; Drs. Medbery and Spunberg seem happy to reply.

It is worth it to discuss radiation treatment with a radiation oncologist, rather than a surgeon. It is a different specialty, and talking with someone who is up on all the latest results will give you a better picture of what stereotactic radiation treatment might have in store for you - not cancer, for instance. Brainstem exposure may well be an issue, though. There are lots of discussions on various topics in the Radiation section of the forum.

Surgery may turn out to be the best choice for you - as Jan said, what you think matters the most. Where are you in the country, and who are your doctors? There are also lots of posts on various places and doctors for getting AN surgery. Getting several opinions is usually a good way to get the whole picture before you decide.

Welcome to the forum.

Steve
Title: Re: Struggling with Options
Post by: bell on November 18, 2008, 11:00:12 am
Gregory,
I had a very difficult time  picking the procedure.  I am 45 with 2 kids, trying to figure out which is best is sooo hard.  Everyone has an option that will work the best for them.  I am having retrosigmoid on Fri.  We (husband and I) mostly me, decided that I want the invader out and not to hopefully have to deal with it again.  I am young and healthy, so I think the risk of major surgery was a good option, I do not want to question the outcome what if down the road.  Have someone close to you decide with you and weigh the pro's and con's.  Definitely do research.  The best of luck to you, Bell
Title: Re: Struggling with Options
Post by: wendysig on November 18, 2008, 12:46:07 pm
Hi Gregory and welcome -
As everyone before me has said, your choice of treatment, since you do have a choice, is the hardest part of this process.  This is a decision only you can make.  My husband chose not to try to influence me in my decision and although I would have appreciated his input, he was right, it was my choice to make.  I have two daughters, 14 and 12 and intend to be around a long, long time.  My advice is that you do lots of research, a good start is the pamphlets Jan suggested, but you will find lots of information on the internet also.  Of course, I think you will find this forum a wonderful source of information, compassion and empathy too.     I would also suggest that you seek as many medical opinions as you feel you need to feel comfortable with your choice.  Just make sure you make the choice you feel is right for you -- most people here will tell you their choice was based on a "gut" feeling of what was right for them, after doing their research and having their questions answered by others here and their doctors.

Wishing you the best of luck in making your decision,

Wendy


   
Title: Re: Struggling with Options
Post by: calimama on November 18, 2008, 02:34:47 pm
Hi Gregory...

I feel very much for you. I went through this process in the first half of this year and i would not wish it on anyone.

I had many similarities to you (similar sized AN but a little bigger, only reduced hearing and noise on the left side, brain stem compression). Other than the hearing issues, i was 100% and i really think that it made it harder to decide. How do you go from being "kinda perfect" to taking a bullet of one sort another.

I am a similar age to you (39) and have a little one (20months).

For me another concern was that i wanted to have another babe, asap, and this was a big part of my decision for surgery (i was told that i should probably wait 6-12 months after rads to start "trying"). I am still hopeful that this will happen for me, despite my advancing age!

I think meeting a surgeon who i hoped could get me through with little damage helped. I also had many people (family, hubbie, family doctor) who were in favour of surgery. I also had the brain stem compression and it just seemed like there was a lot of brain that would get radiation on the  margins, however small. I kind of wondered if i would spend the rest of my life wondering if the rads would come back to haunt me, even though i knew it was rare.

Anyway, both are risky in their own ways and no one can predict how it will go for you. Many people said through after the first few weeks of recovery.

I do have paralysis despite desparately hoping to avoid this. I have been told it should recover and i remain hopeful. I also had bad double vision which was a big challenge for many months, but has now totally recovered. Thank god for that.

So it has not been an easy road, but I never regretted my decision (even with the challenges) and am grateful that i managed to dodge some of the other nasties that can come with surgery. I feel 100% and am happy. As for the facial issues, I like to think that i have a 'condition' that gets a little better everyday, which in the grand scheme of things is not so bad (and much better than something that gets a little worse everyday)! A good attitude goes a long way!!

The support of my family (hubbie and mom in particular) and friends has been unwavering.

I am grateful everyday.

Good luck.
Trish
Title: Re: Struggling with Options
Post by: MAlegant on November 18, 2008, 05:22:04 pm
Hi Gregory,
I chose surgery over radiation because of the suspicious nature of the center of my tumor and the size.  It turned out to be a good choice for me because what was inside the tumor was my acoustic and facial nerves.  I don't think radiating those nerves would have been a good thing.  My tumor was also a bit too large for radiation and once they got it out, it was even bigger than they thought.  I have not regretted my decision though I'm dealing with side effects.  They did save my hearing.
Good luck with your research, I wish you well.
Best,
Marci
Title: Re: Struggling with Options
Post by: Jim Scott on November 18, 2008, 05:23:08 pm
Hi, Gregory:

I think it's safe to say that we've definitely established that surgery or radiation is your decision to make.  We can offer our individual experience with each and suggest resources for research, as Jan did, but ultimately, you'll have to make a treatment decision and you'll have to live with the possible consequences of that decision, which is why its so crucial.  The frustrating thing is that there simply are no guarantees with these AN buggers.  Some surgery patients do just fine, others have a very long road back to normalcy.  Same with some who choose radiation.  Neither is a slam-dunk sure thing.  If one were, we would all go that route.  We'll give you information, personal advice (when requested) and fully support your decision...the one only you can make.  I wish you wisdom and hope that you'll get through this difficult process with the best possible outcome.  Remember, here you have friends that really understand what you're going through, care what happens and want to help.   Make this site and the forums a resource.  I look forward to seeing more of your posts in the days and weeks ahead.

Jim




Title: Re: Struggling with Options
Post by: Nancy Drew on November 18, 2008, 06:36:37 pm
Hi Gregory,

Sorry about your AN, and the decision process really is hard....STINKS :-\!  Just in case GK falls into the picture for you, I just wanted to pass on that the head frame wasn't really that bad.  I know a lot of people have concerns about the head frame, but I actually found it rather fascinating.....maybe I'm weird ::)  Just thought I would add my two cents on this one.  Also, as everyone has said already,  RESEARCH and find a doctor you feel comfortable with.  Best wishes as you continue on with your journey.

Nancy
Title: Re: Struggling with Options
Post by: fbarbera on November 18, 2008, 08:12:32 pm
Gregory,

It might be helpful for you to consult with neurosurgeons who specialize in radiation to get a better sense of the risks of radiation in your particular case.  When I underwent CK, the risk of malignancy was a non-factor.  And while CK specifically is only a decade old, radiation (GK) generally has been in use for ANs for several decades now, so there is a fairly long track record out there.   

I was at the same kind of impasse when choosing between surgery and radiotherapy.  For me, the way forward was to speak with multiple doctors and patients and consult resources until I was satisfied with my choice.   I describe my decision making process in more detail in my website below, if you're interested.

Best of luck to you,

Francesco
Title: Re: Struggling with Options
Post by: Mooretis on November 18, 2008, 09:40:37 pm
I have to say this forum is incredible.  While I have had wonderful support from my family and friends, I always had that little voice that said "but they really do not understand what I am going through both emotionally as well as physically".   This group understands!   Thank you all for your comments, and pointing me to additional resources to research the issue.

I have now booked surgery for later this year, but have not ultimately made a final decision.   I analyze things for a living and while the data points me one direction, my gut points me another.   I have spoken with doctors specializing in both surgery and CK.  I was fortunate that Kansas City had a hospital that performed CK treatments and did not have to travel far.  The CK doctor (Dr. Coffman @ Menorah in Overland Park, KS) was incredible and I would highly recommend him to anyone in the KC area facing the same decision.   He was more concerned with making sure that he walked me through everything and answered all of my questions than pushing CK on me.  He even took my case to a conference (with my permission) to discuss with his colleagues and provided me his personal cell phone number should I have additional questions.   For a minute, I was questioning if he was really a doctor.  ;) 

I am leaning towards surgery because I want to be done with it  (as much as possible anyway).   I have a very active mind and these last few months have been rough just trying to do anything to keep my mind off of it.  But with that said, I will continue my research.  I want to make sure that my decision is a fully informed decision.

For those who have posted, thank you again.   I only hope I can do the same for others down the road.

Gregory
Title: Re: Struggling with Options
Post by: leapyrtwins on November 18, 2008, 09:54:12 pm
Gregory -

we do know exactly what you are going through  :)

I wouldn't say I analyze things for a living, but I'm an accountant so I do my fair share of analyzing.  However, I went with my gut when making my treatment decision and I recommend that others do the same.  At some point you'll just know what is right for you; same goes for choosing your doctor(s).  You need to have faith and confidence in what you are doing and who is doing it.  After that things get a little easier.

Personality-wise I'm a very black & white person - not a lot of gray in my thinking.  One of the reasons I chose surgery is that, like you, I wanted "to be done with it" and get on with my life.  I also wanted to know up-front (as in immediately post op) the issues I would be facing in my recovery.  Call me a control freak - yes, it's true - but this part of my reasoning worked for me.

Continuing your research is a good idea.  Eventually you'll figure out what will work for you; you're on the right path.

Jan

Title: Re: Struggling with Options
Post by: RosemaryL on November 18, 2008, 09:59:32 pm
Gregory:

This is a tough decision.  Being an engineer, I find it helps me when I can use some kind of a decision metric.  Here is a simple risk assessment metric:  total risk is equal to the product of the likelihood of the bad outcome occurring times how bad it will be times how hard it will be to fix. 

The bad outcomes for surgery might be SSD, facial nerve damage, scalp tingling - you get to make this list.  Being a geek, I have to make a table - hope it comes out as readable.

Bad Outcome    How Likely    How Bad              Fix Difficulty     Outcome Risk
      SSD              5              3 (nuisance)         3 (aids)                 45
      Facial           2              8  (fairly bad)       2 (most heal)          32
      Scalp            9              1 (very minor)      1 (will heal)            9                               

I use a scale of 1-10 for everything.  And I just made up the numbers - you get to make your own assessment, based on what your learn from various sources and how much the various outcomes would bother you.  Remember that, with this approach, the worst case outcome risk is 1000 - so a 45 is not too bad and a 9 is trivial.

You need to make a similar list for radiation, but I don't know what the issues are.  Then just sit back and look at your data - it will tell you how you feel about all the issues.    Hope this helps a little in making a tough decision.

Just remember, once you've made the decision, think only positive thoughts about the real outcome.

Rosemary
Title: Re: Struggling with Options
Post by: sgerrard on November 18, 2008, 10:41:04 pm
I analyze things for a living and while the data points me one direction, my gut points me another.   

I think in the end, most of us go with the gut. If you need to rationalize that, just figure that your gut is telling you what the data really means. Many of us also found that making the decision was the hardest part; the rest was just letting it happen and finding out "what sort of chocolates you got from the box."

Is Dr. Rosenberg still at Menorah in KS? He was on the old version of the Cyberknife forum, so I'm just curious. It doesn't surprise me that you found it a good place.

Steve
Title: Re: Struggling with Options
Post by: ppearl214 on November 19, 2008, 06:50:11 am
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
Title: Re: Struggling with Options
Post by: mk on November 19, 2008, 09:02:45 am
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  :P), 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
Title: Re: Struggling with Options
Post by: Nancy Drew on November 20, 2008, 02:34:10 pm
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
Title: Re: Struggling with Options
Post by: Syl on November 20, 2008, 03:17:15 pm
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
Title: Re: Struggling with Options
Post by: RosemaryL on November 20, 2008, 03:24:52 pm
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
Title: Re: Struggling with Options
Post by: Parkcomm on February 16, 2009, 06:00:41 pm
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
Title: Re: Struggling with Options
Post by: Pooter on February 17, 2009, 07:30:27 am
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
Title: Re: Struggling with Options
Post by: JohnnyDiaz on February 17, 2009, 10:00:17 pm
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.... :)
Title: Re: Struggling with Options
Post by: Parkcomm on February 18, 2009, 06:06:40 am
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
Title: Re: Struggling with Options
Post by: leapyrtwins on February 18, 2009, 07:35:36 am
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  ;D

Jan
Title: Re: Struggling with Options
Post by: Pooter on February 18, 2009, 12:26:36 pm
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
Title: Re: Struggling with Options
Post by: MAlegant on February 21, 2009, 12:17:50 pm
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  ;D).  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
Title: Re: Struggling with Options
Post by: mimoore on February 21, 2009, 02:37:39 pm
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  ;D
It seems like more and more people are discovering they have an AN.
Title: Re: Struggling with Options
Post by: Jim Scott on February 21, 2009, 05:51:38 pm
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
Title: Re: Struggling with Options
Post by: Pooter on February 25, 2009, 05:57:47 pm
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
Title: Re: Struggling with Options
Post by: EJTampa on February 25, 2009, 06:28:33 pm
Yea me! (a la "London Tipton".. if you get this, then you have kids probably).  :)

LOL.  I know that phrase all to well!  For those with younger children, or grandchildren, my cell phone ring tone is from Wonderpets, which starts with an old type phone ring, and then goes into a song... "The phone, the phone is ringing!  The phone, we'll be right there!"
 
If you haven't seen the show, just ignore this message entirely  :).
 
Now to stay on topic, That's awesome that you were able to ride a bicycle again Brian, even if it was just for a short time :).  You'll be riding "no hands" in no time! :)
 
Ernie
Title: Re: Struggling with Options
Post by: Syl on February 26, 2009, 11:25:49 am
Brian:

I haven't gotten on a bike in years and do wonder sometimes if I have to relearn how to ride one. I'm very glad to see that you managed to keep it upright, even if for just a short while. Congrats to you!!!

Syl