Author Topic: new member, nice forum  (Read 7200 times)

rupert

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new member, nice forum
« on: January 01, 2010, 12:57:31 pm »

      I have been going through the posts on this site and am happy to see good info and great  concern for people with AN diagnosis.  I myself have an AN that is 1.6cm
 by 2.2cm.    I am scheduled for surgery at UPMC  on the 25Th.   To say that I am starting to get cold feet would be an under statement.   I am actually alright with the surgery procedure as I am intrigued by modern medicine and technology.   When I was first diagnosed and started researching,  I was confident that the Gamma Knife was right for me.  After talking with the surgeons  though,   I thought surgery was what I needed to do.  ( get it out).   Now I am not sure I want to handle the possible quality of life complications that occur after surgery.   I have read through a lot of the posts on this forum and it seems most (not all)  people experience some quality of life issues after surgery.   My first question , would be this.   Of the thousands of AN surgeries every year,   do most people have some kind of quality of life issues or do they just happen to some .   Having not been through surgery yet I sure do feel for those that have issues.  I am just trying to find out if they are the norm.

joebloggs

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Re: new member, nice forum
« Reply #1 on: January 01, 2010, 01:11:47 pm »
Hi Rupert,

I don't think it's the norm for quality of life issues to occur, I think it's the exception.  There are loads of people, a lot of them on here who have quality of life issues following surgery and radiation and they're still rocking it, still loving life and still getting on with it.  There are even more of us who have no quality of life issues, or whose quality of life has improved following treatment and are also rocking.  Believe in your treatment choice, be strong and be confident that your surgeons will do all they can to preserve your quality of life.  You can rock it Rupert like the rest of us have!

JB x
Right sided AN 2.7cm at last MRI.  Hearing loss/facial numbness.  Translab scheduled March 11th 2009.  Translab at Royal Melbourne Hospital, Australia successful!  Total tumour removed, SSD, no facial issues, numbness has left the building, balance issues but they'll get better and I'm loving life!

leapyrtwins

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Re: new member, nice forum
« Reply #2 on: January 01, 2010, 01:12:24 pm »
Hi Rupert and welcome to the Forum.

I'm not sure what you mean by "quality of life complications" but I can tell you that there is life after AN surgery - and the majority of us are shining examples of that.

Yes, some have "complications" - I'm SSD (single-sided deaf), others have facial nerve issues - but that doesn't mean life isn't worth living or is somehow compromised.

Life is what you make of it.  Many "posties" on the Forum run marathons, others do standup paddle-boarding.  Most of us haven't had to change our lifestyle at all long-term

As for treatment options, it's pretty much a personal choice.  My neurotologist gave me the choice of radiation or surgery.  Although I initially thought I'd go with radiation, I ultimately picked surgery for various reasons and never looked back.  It was the right choice for me and I was confident in that choice.  I was confident in my doctors as well.

Although your surgery is scheduled for the 25th, if you truly are having second thoughts, it's not too late to postpone it and investigate GK more.  

Just my opinion,

Jan

« Last Edit: January 01, 2010, 01:14:57 pm by leapyrtwins »
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Kaybo

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Re: new member, nice forum
« Reply #3 on: January 01, 2010, 01:18:29 pm »
Hi Rupert and welcome to the Forum!

I think that the "safest" answer to your question is "everyone experiences different results"...I had surgery 14 years ago and had a lot of complications, but I think that with all the medical advances, most of those have been worked through.   Even though I did have a lot of "complications," I have a VERY active and wonderful life now.  I, personally, think that attitude plays a HUGE role in recovery (that & HUMOR!)!!   If you have any specific questions, please feel free to ask us all or PM me!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

rupert

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Re: new member, nice forum
« Reply #4 on: January 01, 2010, 01:34:58 pm »

   I  hope I haven't offended anyone.  I was definitely not implying , that if there are complications life is not worth trying.  On the contrary,  the posts I have read are an inspiration and show true spirit no matter what the situation.   I was simply wanting to know if long term complications are to be expected.   The Dr.'s have certainly gone over effects after surgery as possibilities.   I  am aware every situation is different.  Patient surveys that I read always seem to show complications.   I just wonder how many people on average go through AN surgery with no long term complications ( 3months - 1year).   1 out of ten , 2 out of ten etc.

Sue

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Re: new member, nice forum
« Reply #5 on: January 01, 2010, 01:41:27 pm »
Hi Rupert,

You might be interested in looking at the results of a survey taken last year.  Of course, the only people who did this survey were ones from this forum.  It's certainly not a survey of every AN patient!  ;)

Sue in Vancouver, USA


http://www.anausa.org/pdf/patient_survey.pdf
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

leapyrtwins

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Re: new member, nice forum
« Reply #6 on: January 01, 2010, 02:02:54 pm »
Rupert -

I can't speak for everyone here, but I didn't find anything offensive in your post.  I hope my answer didn't make you think I did.

Anyway, the answer to your question regarding complications is - everyone is different and our AN journeys are unique.  It's the same way with diagnostic symptoms - what may have prompted you to have an MRI might not be what prompted me to have one.  Some people have hearing loss, some have facial nerve weakness, some have vertigo, etc.

There are certain similarities in the world of ANs, but we all recover differently, and we all have the possibility of encountering side-effects.  No one can tell you for sure which side-effects you will or won't get from either radiation or surgery - which, in my opinion, makes the treatment decision harder than most.

The good news is that side-effects for the most part either go away over time or can be "solved" in one way or another.  For example, while I will never have normal hearing in my left (AN) ear again, I have found a solution in the form of a BAHA.  Others may find their solution by using a TransEar or by just learning to adapt to being SSD.

Hope this helps,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

sgerrard

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Re: new member, nice forum
« Reply #7 on: January 01, 2010, 02:20:45 pm »
Hi Rupert,

I think you are getting the message, but I will repeat it anyway. :) 

If you have surgery, you will lose a balance nerve on one side. So you will have some sort of complication. However most people find they adjust to that quite well. Stoneaxe is probably out paddleboarding in icy waters even as we speak.

The best surgery outcome I always think of is Ann (Desilu), who had a "perfect" middle fossa at House: 100% hearing preservation, no facial, headache, or other complications. I met her at the symposium in Chicago in August. She is doing great, but is still aware that she had an AN and had brain surgery. It is never the case that you wind up feeling like it never happened.

The main thing, though, is that the quality of your life can easily be just as good, and may turn out to be even better. Something about having an acoustic neuroma seems to bring out the best in people, as you can see many times over right here on this forum.

So, as for your concern that "I am not sure I want to handle the possible quality of life complications that occur after surgery," I'm sure you will be able to handle them. And the same would apply to radiation treatment if you change your mind.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

rupert

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Re: new member, nice forum
« Reply #8 on: January 01, 2010, 02:30:59 pm »
  Thanks for the advice.   I have only been researching for a couple months and I know many on this forum have been acquiring info for a long time.  The information on this forum is great as it is from people with a lot of experience with this issue and care enough about others to pass it on.  My dilemma is , as with many on this site.  I am within the parameters for Gamma Knife,   but have surgery scheduled.   I have a phone consult with my surgeon on Mon.  He said his door was always open to talk so I will take advantage of that before I make a decision to cancel.    My family doctor is helping me out with some meds to take the edge off, otherwise I can't go ten minutes without an anxiety episode.    I know getting the most info you can is best, but in some way it is too bad you couldn't be diagnosed on Mon and have surgery on Tue.

rupert

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Re: new member, nice forum
« Reply #9 on: January 01, 2010, 02:37:22 pm »

     I guess I should have mentioned this in my first post.   I have already lost most all usable hearing in  my right ear as well as having some facial numbness.  So yes,  I am dealing with those issues and they are not that bothersome at this time.

CHD63

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Re: new member, nice forum
« Reply #10 on: January 01, 2010, 02:43:53 pm »
Rupert .....

Adding my welcome and you were in no way offensive in your posts ..... you are going through the same anxieties that most of us did between diagnosis and treatment.  I had retrosigmoid surgery for trigeminal neuralgia at UPMC over 15 years ago ..... it is an excellent facility.  Then my retrosigmoid surgery for the AN was almost two years ago at Duke.  I had much anxiety both times, although the second time I was strangely calm the day of surgery.  The feelings you are having are perfectly normal.

Re:  post-surgery issues.  So much depends upon exactly where the AN along the vestibular nerve started growing and which direction it is expanding.  That is why most of us have to be vague in our answers.  Since it is actually a vestibular schwannoma everyone's balance is affected to a certain degree.  Since the brain compensates for this injury by shifting the load to the other side, patients often find they have already begun compensating before treatment and have little problem with balance.  Others have a little longer to adjust following surgery.  One thing to keep in mind is that as the AN grows, more things will be affected so it is probably best not to wait and watch too long if it is indeed growing (some virtually stop growing for months at a time).

I agree that I wish the wait did not have to be so long ...... that is the agonizing part.  Try to relax and busy yourself with as many other things as possible.  ..... and stay in touch with us, we understand like no one else can.

Best thoughts and prayers for peace with your decision.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Jim Scott

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Re: new member, nice forum
« Reply #11 on: January 01, 2010, 03:10:31 pm »
Hello and welcome, Rupert ~

Your anxiety is quite typical for an acoustic neuroma patient facing scheduled surgery and becoming acutely aware of possible negative ramifications.  However, although non-invasive (no cutting), radiation, be it GammaKnife, CyberKnife , FSR or some other variation also carries inherent risks.  If it didn't, I doubt anyone with an AN under 3 cm would even consider surgery, yet many do.  Each approach (surgery, radiation) has it's own distinct drawbacks and advantages, as you know by now.  Frankly, as much as I value research (and have done quite a bit) all the AN information in the world won't give you any kind of guarantee of your outcome, no matter what form of treatment you ultimately choose.  My usual advice to someone seeking answers is to choose a very skilled surgeon/radiation oncologist with lots of experience dealing with ANs.  Know exactly what his (or her) long-range plan is for you and don't ever be shy about asking pertinent questions of any doctor that is going to be working on your skull, be it with surgery or radiation.

Once you've settled on a treatment, doctor/team and facility, you need to 'let go' and put your trust in that doctor and his team.  That is easier said than done but most of the folks posting on these forums did just that.  I did.  Like many, I was rewarded with a great surgery outcome (no complications) and 90 days later, uneventful but successful FSR treatments that seem to have accomplished their goal of destroying my ANs ability to survive.  While the tumor is in it's 'death throes', I'm doing just fine, thanks.  :)  I join the many AN patients who, while perhaps not 100% 'unscathed' by major surgery and having radiation beams shot into my skull, did not suffer any real or permanent quality of life issues. 

As others have noted, the fact of being diagnosed with an acoustic neuroma and having it addressed, whether by surgery, radiation or both (in my case) is not like having a gallbladder removed or some other simple, straightforward surgery that you undergo, recuperate for a short time then resume your normal activities exactly as you did before the surgery.   Every AN post-op patient has some reminders of what he or she went through.  I had a splendid outcome but still carry a few very minor deficits that are invisible to others and that I don't allow to impact my enjoyment of life.  Like so many, I'm SSD but cope with it fairly well, I think.  Other AN post-op patients acquire a BAHA and that basically solves their hearing problem. 

As with any other challenge in life, we all approach our individual AN experience, with or without complications, a little bit differently. These forums exist to provide information, advice when requested and support without reservation or judgment as our members deal with their AN issues, including the emotional turmoil you're facing as your surgery date draws closer and the reality of the seriousness of the situation begins to reveal itself to you.    All I can add to what others have cogently stated is that many (AN surgical patients) have gone before you, the majority do quite well, post-op and no matter what happens or you decide, we'll be here for you.     

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

suboo73

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Re: new member, nice forum
« Reply #12 on: January 01, 2010, 03:10:50 pm »
Hi Rupert!

Welcome to the Forum (but sorry you had to join this exclusive club...)

I am in Watch & Wait, so i cannot answer your questions about surgery.
However, as others have pointed out, do your research and 'go with your gut.'
Many that have had surgery have done fine, even with a few 'bumps' along the way.

Do you have some family, friends, etc., to help you through the initial post-surgery period?

Please keep us posted, we are here for you!
My thoughts and prayers are with you during this time.

Sincerely,
Sue

PS Are you going to Pittsburgh?  I am from PA originally, but live in the top of Virginia now.
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

rupert

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Re: new member, nice forum
« Reply #13 on: January 01, 2010, 03:32:27 pm »

 suboo73.     Yes, that is where the procedure is scheduled.  UPMC   Dr's  Hirsh and Gardner.     I live about 4 hours away in NY.    Always wanted to live in PA though. I am only four miles from the border.

suboo73

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Re: new member, nice forum
« Reply #14 on: January 01, 2010, 03:39:46 pm »
Rupert,

Hi again!  Sounds like you are getting things lined up - and i hear great things about UPMC!
Do you have your date on the AN calendar?

BTW - I think if you only live 4 miles from the border, you qualify to be an 'adopted' Pennsylvanian!

Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W