Author Topic: OK its time for me to stop lurking and fess up!  (Read 6924 times)

CaryF

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OK its time for me to stop lurking and fess up!
« on: March 09, 2008, 09:46:53 pm »
I've just been diagnosed with and 8mm x9mm AN and am confused, scared to death and worried sick. I found out about it 2/1/08 and have been reading all the post on this site over and over again. My doctors are Feehs and Elliott here in Denver CO. And so far my options are Gamma Knife or surgery using the Sub-occiptical method. It seems like the more I research this the more confused I get. I'm having a hard time locating second opinions here in Denver and when I talked to my insurance company about going out of network (it's an HMO) they said sure if I wanted to pay for it.

My neurosurgen Dr Elliott has told me that the best corse of action for my case is to go the Gamma Knife route because of the small size and the oval shape of the growth. He has even told me that if it was him he would do Gamma Knife. Dr Feehs the Neurotolygist has not express a preference either way but I sense he would prefer to do surgery.

I have to say that right now Gamma Knife is looking pretty good if for no other reason it would get me back to work faster. It is a sad but true fact that in my profession and where I work if I'm not going to be back to work in a month or less they will find someone else to do my job and ofcorse that is where we get our health insurance from. To make matters even more difficult my wife is currently being treated for a thyroid problem that may require surgery so we're pretty overloaded right now,

Ok I'll cool down some of the whining and try to get to the point. I'm a 49 yr old guy with an 8mm booger in his head. Since I've had no luck drinkin it out or knockin it out (with the door frame) I will have to decide the best corse of action. Any advice on the decision process will be helpful and for any of you folks who live here in the rocky mountain area I would really love to here from you.

And just would like to note that I had been wandering where the smart compassionate caring loving and supportive souls have disappeared from the last few years and now I know. There all here on this board :)

Thanks for listening

Cary...

leapyrtwins

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Re: OK its time for me to stop lurking and fess up!
« Reply #1 on: March 09, 2008, 10:53:28 pm »
Cary -

hi and welcome; glad you decided to stop lurking and join us  :)  I was in Denver last August - 3 months post op - and loved it!  What a beautiful city!  I was there for business and absolutely fell in love with "I See What You Mean" - the big blue bear sculpture outside the convention center. To this day, I'm still displaying his photo on my cell phone. 

And now, back to the issue at hand . . .

Choosing an AN treatment isn't easy, but in your case you are lucky that the size of your AN gives you the option of GK or surgery.  No one can really tell you which choice is best for you; you'll have to decide that for yourself.  I chose surgery because it was right for me, but from what you are saying GK sounds pretty right for you.  It certainly makes sense in light of the small size of your AN and in light of the fact that you need to return to work fairly quickly.  If you choose surgery and everything goes well, realistically you are looking at a 4-6 week recovery period; it is my understanding that the recovery period for GK is much shorter.  I'm sure others will weigh in with their opinions and perhaps some of those who chose GK can give you some idea of how long their recovery period was and what it entailed.

In reaching your decision make sure you look at all the pros and cons of each treatment and make sure you are dealing with docs who have lots of experience in treating ANs.  And, most importantly, remember, whichever treatment you chose, we are here to support you. 

Best of luck to both you and your wife,

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: OK its time for me to stop lurking and fess up!
« Reply #2 on: March 09, 2008, 11:31:39 pm »
Hi Cary,

Being confused is okay; no need for the scared to death and worried sick part - it's not that bad.

You haven't said what sort of symptoms you have, or what sent you into the doctor to get the diagnosis in the first place. Can you wait and watch? For an AN less than 1 cm, it is a reasonable thing to do, unless you have some reason to act sooner. Hearing, maybe?

It is okay with me if you choose radiation treatment. :)  Seriously, you do have a neurosurgeon recommending it to you, and saying he would do it in your situation.  If you would rather do surgery, that is perfectly alright, many people prefer that. But if you would rather do radiation, it is a sensible choice in your case. The success rate for radiation treatment is very good, especially for smaller tumors, and the incidence of side affects and nerve damage is low.

I had radiation in September last year; so far it has worked out fine. I did CyberKnife, which is similar to GammaKnife, but done with a robotic arm over 3 days of treatment. The treatment went like this: I took a week off from work; flew down to California on a Sunday, chatted with doctors on Monday, got a CT scan and an MRI on Tuesday, had CK treatments on Wed, Thu, Fri, had a barbecue with friends on Saturday, flew back to Oregon on Sunday, and went back to work on Monday.

I had some swelling symptoms about 3 months later. I had a bad cold in December, and the pressure in my ear was not comfortable, but that was as bad as it got. I am now feeling sharper and working better than I was last summer, and will be getting my first follow up this week.

No hurry on the decision - take your time, get the information you need, and arrive at a decision you are comfortable with. All the best,

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.

Dana

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Re: OK its time for me to stop lurking and fess up!
« Reply #3 on: March 10, 2008, 12:29:43 am »
Glad you quit lurking and joined the party!  Well, we try to have as much fun as possible here.  It IS a very happy experience to know there are all of us "rare" folks who have ANs.  The internet is great...

My response would've been just as Steve's -- what are your symptoms (ie how does it affect you?) and, don't forget wait-and-watch as a third alternative.  For example, if your symptoms are minimal AND you could accept waiting-and-watching, maybe that's the way to do.

I had GammaKnife last July - so far so good - and am personally biased towards radiosurgery.  In general, and for most people, it involves ALOT less recovery.  Basically, I'd say I had no recovery.  Although it was a simple "t-shirt" wedding, I actually got married three days after the GK procedure.  The steroids I got for a three-four day period really gave me the energy to clean house ... and that's not a joke!  I was a little fatigued for about three weeks, but that was about all.  I'm in my late 50's, lots of things in my body are starting to fall apart and ache, so I can't really distinguish if any of it is from the GK, but I don't think so.

I know that feeling of profound confusion...try writing down:  your symptoms, how badly they do or do not affect your life; your gut feelings; all those practical things like being-off-work-too-long and dealing with your wife's health issues simultaneously.  Then write down the pluses and minuses of your three basic choices - microsurgery, radiosurgery and wait-and-watch.  Writing it down might help you simplify the important facts (important to you) and make it all a little more objective.

And, please, quit banging your head against the door -- that's NOT one of the options!

I wish you the best in sorting it all out.  Keep us posted....

Dana

1.5 cm AN diagnosed June 2007.   GammaKnife July 19, 2007 at Univ. of Washington/Harborview GK Center, Drs. Rockhill, Rostomily. 
After yearly MRIs for 5 years, it hadn't died. So I'm now leaning strongly toward surgery.

ppearl214

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Re: OK its time for me to stop lurking and fess up!
« Reply #4 on: March 10, 2008, 05:34:48 am »
Hi Cary and welcome... sorry to hear you have the same "brain booger" as us.... but glad you found us. Hope you find the answers you seek here to make the best treatment decision you can for your situation.  As you can see by my sig line, I opted for Cyberknife Radiosurgery (now 2 yrs post treatment) and it has worked out well for me.  If you seek specific answers, you can try doing a "search" option here for specifics.... many posts here re: many different topics.... it should help you with your research.

Again, welcome... and wishes of wellness to help treat that "booger" (glad to know the door trick didn't work.. didn't work for me, either) :D

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Kaybo

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Re: OK its time for me to stop lurking and fess up!
« Reply #5 on: March 10, 2008, 06:36:52 am »
Cary~
Hello from Texas -- we're practically neighbors!!  Sorry to have to meet you this way...but it will all be OK in the end!!   :D
I definitely think that your wifey is getting the better end of these two health issues (not to minimize either one)!  I had my thyroid out a couple of summers ago and after all the surgeries I have had, I'd have to say it was the best!!  I was taking my girls to the pool and going to church (all in one day) exactly one week post-op...it would've have been sooner if the anesthia (sp?) hadn't done such a number on me!  Getting the right dosage of medicine took a bit of time, but all is super great now.  When I had my AN, there were not as many widespread options, the internet (so prevalent), and no time so we did not have to make any decisions -- my hubby & I think it was almost easier on us because of that.  I think once you can get past the initial decision, you will have the hard part over!
You will be in my prayers...please contact me if I can be of any assistance to you or your wife.
K
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!

CaryF

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Re: OK its time for me to stop lurking and fess up!
« Reply #6 on: March 10, 2008, 06:15:32 pm »
Thank you all for your replies. I guess I should've been a little more clear on my symptoms. Basically the only problems I've had so far are that I've lost about 40% of my hearing in my left ear and I have the constant ringing that is so classic with this thing. When I had my balance test the Doc told me that I had about 50% of my balance left which kinda suprised me a bit cause I haven't even noticed it with the exception of occasionally bumping into the door way now & then. I just figured I was clumsy. I have noticed that lately I've been more tired then usual but I think that could be just the stress of having to deal with my newly aquired friend.

I actually found out about this completely by accident. I had been complaining to my doctors every since about 2002 that I had this ringing in my ear but each time I would hear the old "you're just gettin older" line. But last October when I had my yearly check up I just mentioned to my GP that I thought my hearing wasn't right. He was very concerned and thought I should see an ENT because sometimes these things can be a symptom of a growth in the inner ear. That got my attention so I went to the ENT he recommended and well here I am.

I've still got servicable hearing in my left ear and would like to keep it if I could. The surgery would give me about a 50/50 chance of keeping it but those are also the same odds the doctor gave me for radiation. As things are now I would really need a very convincing reason to go the surgery route what with all the possible complications. Plus I know two people personally that have gone into the hospital and ended up battling Staph infections. I'm no stranger to surgery though as I've been in for an aptemdecomy, and a shattered wrist. It's just that from what I've research the odds of getting rid of this thing with both surgery or radiation seem to be 95-98%, the follow up procedures from what I've been told are the same, and the possible complications appear to be about the same. I just want to know if there is something I'm missing.

Thanks for listening

Cary...

leapyrtwins

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Re: OK its time for me to stop lurking and fess up!
« Reply #7 on: March 10, 2008, 07:02:39 pm »
Cary -

IMO, from reading your posts, you have a pretty good handle on things.

Just one question.  You mention "all the possible complications" of surgery.  There are possible complications of radiation also.  Have you looked into them?

Don't get me wrong, I am not "pro surgery" just because that was my choice - in fact, from what you've told us about your case, if I were you, I'd probably be leaning towards radiation.  I just want to make sure you aren't thinking radiation is 100% complication-free.

There are no guarantees with any treatment option,

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

CaryF

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Re: OK its time for me to stop lurking and fess up!
« Reply #8 on: March 10, 2008, 08:13:47 pm »
Hi Jan,

With surgery some of the biggest concerns I have are CF leak being, under for so long (6 to 8 hrs) and by far the possibility of infection that can occur after surgery, any surgery like I mentioned personally knowing two people that were infected with staph was pretty scary. My friend almost lost his leg, and my uncle was in a coma for 3 weeks. Its been a year and a half and he is still learning to walk again. At this point I can't completely rule out surgery, but there has to be a pretty compelling reason to go that route.

As far as what I know about radiation well I get the impression from my doctor that the complications can be pretty much the same as the AN surgery. dizziness, hearing loss, facial numbness, balance problems, fatigue and nausea. The difference from what I can tell is that these problems may develop over a longer period of time. Where with surgery you're more likely to have them all at once. I don't think that either way I will escape the effects of having an acoustic neuroma, and my nature is usually to get it over with and move on with what you have left. But the long recovery and the surgical issues make it hard for me to choose that route. And I just get the feeling that here in my neck of the woods I'm gonna have a hard time finding a doctor that has enough of these surgeries under his belt to satisfy me.

Gamma Knife looks good right now but I'm still gonna do my home work. Since my little guy hasn't grown too much I ask edmy doctor if I could take a month or two to figure this out. I'm still looking for that key factor that could sway my decision.

Sorry for the bad spelling


Cary...


leapyrtwins

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Re: OK its time for me to stop lurking and fess up!
« Reply #9 on: March 10, 2008, 09:34:28 pm »
Cary -

you answered my question.  You are definitely informed about radiation; just wanted to be sure.

For what it's worth, chances of CF leak aren't that high - I forget the percentage, but I know it's not a huge possibility.  I also don't think infection is that large a risk either; can't recall anyone on this forum talking about infection post op, but then again, I haven't read every post. 

It's obvious that you are doing your research and in time, you will discover which option is right for you - it's your choice and you will know it when you reach it.  It's not an easy process, but you'll get there eventually.

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

CaryF

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Re: OK its time for me to stop lurking and fess up!
« Reply #10 on: March 10, 2008, 10:11:50 pm »
Thanks Jan,

Yup it's quite a ride tryin to figure out the best plan of attack. When I shattered my wrist it actually was alot easier, there wasn't alot of discussion or reseach it was like we go in and fix it or you learn to write with your left hand. Kind of made the decision process a little more streamlined. I think part of my problem at this stage is that I have the neurosurgen pushing Gamm Knife and the Neurotyologist more interested in surgery. My gut tells me that it may be time for a second opinion so I'm busy finding another doctor to talk to about this. Anybody know of any good AN docs in Denver I'd love to hear about them.

And to Kaybo,

Howdy Ya'll how is the weather down there in Texas? I lived in Dallas for over 30 yrs, grew up there & sometimes I still miss it, particulary in the winter.

Cary...

Mark

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Re: OK its time for me to stop lurking and fess up!
« Reply #11 on: March 11, 2008, 12:08:22 am »
Cary,

Just to follow up on some of the discussion points in previous threads about surgical complications.

Probability of CSF leaks based on what I've read or seen Docs say is probably around 10% or so. Based on the number of folks who have posted here over the years who have had one, I would guess that number holds up pretty well.

Jan raised the point about hospital born infections which are technically called nosocomial infections. I also can't recall anyone ever posting that they acquired one after their AN surgery, but that does not limit it as a risk. I think for most folks who don't have a healthcare Industry exposure it is a greatly underestimated risk. Hospitals are not maintained in the pristine , sterile environment that is generally assumed and the costs of infections incurred after a procedure is not small. So while not specific to AN's here are some interesting facts on nosocomial infections that may surprise some folks from Wrong diagnosis.com

This was actually a small factor in my decision to avoid an invasive procedure and it probably helps explain part of the reason for the increase in ambulatory surgery centers  ;)

FWIW

Mark

Nosocomial infections: Any infection that originates in a hospital.

Prevalence and incidence statistics for Nosocomial infections:



Incidence (annual) of Nosocomial infections: estimated 2 million cases annually or about 10% of American hospital patients (CDC/NNIS 1992)

Incidence Rate: approx 1 in 136 or 0.74% or 2 million people in USA [about data]

Incidence extrapolations for USA for Nosocomial infections: 2,000,000 per year, 166,666 per month, 38,461 per week, 5,479 per day, 228 per hour, 3 per minute, 0 per second.

Top Incidence statistics about Nosocomial infections:

The following statistics relate to the incidence of Nosocomial infections:

    * 2.84 per 1,000 hospitalised at risk patients developed infections due to medical care in America 2000-2002 (Patient Safety in American Hospitals, Health Grades 2004)
    * 88,286 cases of selected infections resulting from medical care occurred in the US 2000-2002 (Patient Safety in American Hospitals, Health Grades 2004)

Deaths from Nosocomial infections: 80,000 deaths annually (Starfield, JAMA 284(4), 2000)

Death rate extrapolations for USA for Nosocomial infections: 80,000 per year, 6,666 per month, 1,538 per week, 219 per day, 9 per hour, 0 per minute, 0 per second.
TopDeath statistics for Nosocomial infections:

The following are statistics from various sources about deaths and Nosocomial infections:

    * About 20,000 deaths in the U.S. per year (CDC)
    * 3,805 deaths from selected infections resulting from medical care were attributable to the patient safety incident in the US 2000-2002 (Patient Safety in American Hospitals, Health Grades 2004)
    * 13.16% of selected infections resulting from medical care led to death in the US 2000-2002 (Patient Safety in American Hospitals, Health Grades 2004)
    * 4.31% of deaths from selected infections resulting from medical care were attributable to the patient safety incident in the US 2000-2002 (Patient Safety in American Hospitals, Health Grades 2004)

TopSurvival rate statistics for Nosocomial infections:

The following are statistics from various sources about the survival rate for Nosocomial infections:

    * 13.16% of selected infections resulting from medical care led to death in the US 2000-2002 (Patient Safety in American Hospitals, Health Grades 2004)

TopSociety statistics for Nosocomial infections

  Costs for Nosocomial infections: more than $4.5 billion in 1992 (CDC/NNIS 1992)
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

cindyj

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Re: OK its time for me to stop lurking and fess up!
« Reply #12 on: March 11, 2008, 07:11:17 am »
Hi Cary,

I'm in just about the exact same boat as you having been very recently diagnosed w/ an 11mm AN and still trying to sift thru the options and docs.  I had diagnosed myself a couple of years ago w/ tinnitus and arrived at the uneducated decision that it was no big deal and there was really nothing that could be done, so I didn't go see a doctor about it.  It wasn't until a friend of mine said she had been given steroids for her ringing and was fine that I decided to go see a doc to get some good drugs to take care of mine also - alas, not so simple for me! 

Anyway, I also am leaning toward Gamma or CyberKnife, but not ready to completely rule out surgery.  I am actually meeting w/ a Cyber doc today and am very anxious to see what he will say.  Please let us know what you decide!

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

leapyrtwins

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Re: OK its time for me to stop lurking and fess up!
« Reply #13 on: March 11, 2008, 07:32:04 am »
Cindy -

let us know how your appt with the cyber doc goes today. 

Best of luck,

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

CaryF

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Re: OK its time for me to stop lurking and fess up!
« Reply #14 on: March 11, 2008, 09:13:20 am »
Yes Cindy please keep us informed. My thoughts are with you

Cary...

 


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