Author Topic: It's official - I'm waiting & watching!  (Read 4555 times)

Betsy

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It's official - I'm waiting & watching!
« on: May 17, 2007, 08:48:51 am »
After a very long week of pondering and studying, I just called my doctor to report that I've decided to be a "wait and watcher", at least for now.  He was supportive of my decision and we made plans for my next MRI in the fall.  I don't know how good I'm going to be at waiting, but I'll give it a try.  It's much easier now that the vertigo has subsided and last weekend I actually forgot about that thing in my head for several hours at a time!  I'm so grateful for this forum and all the folks who post their experiences and thoughts.  It's good to know there are others out there who are facing the same issues.
15mm left side AN, diagnosed 4/25/07, radiosurgery via Trilogy 8/22/07.  Necrosis & shrinkage to 12.8mm April 2009

RED in Palacios

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Re: It's official - I'm waiting & watching!
« Reply #1 on: May 17, 2007, 01:57:47 pm »
Betsy,
As a fellow wait and watcher, I like others understand the second guessing that you may yet go through.  I would encourage you to be as I sign myself, an "active" watcher.  Continue your research efforts and continue to read and post here on the forum.  I draw great strength knowing what others like me have done and are doing.  I know I am not alone on my path.  Your doctor sounds like a good one but don't hesaitate to seek the opinion of others.  Hopefully the other issues you mention like the vertigo will totally resolve themselves and you can put them behind you.  As far as not being good at waiting, I like to think about how far the treatment options for us have come in only the past few years and feel very strongly that every day I wait gives the techniology more time to make even greater advances that will offer me additional options when the time for aggressive action finally comes.  Please know that you remain on my (and others) prayer list and you will be in my thoughts as we face the future together.  Keep us posted with your latest news and don't hesitate to ask if something is bothering you.  Someone among all these wonderful people has experienced it and will share thier experience will you.
Good luck,

Richard
Diagnosed 10-16-06.  3.6 mm by 9 mm.  Waiting and watching actively.

Derek

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Re: It's official - I'm waiting & watching!
« Reply #2 on: May 17, 2007, 02:08:37 pm »
Hi Betsy...

As a fellow 'wait and watcher' now in my 6th year since diagnosis I totally support your decision and it is refreshing to hear that your doctor is also in support.

My view is that irrespective of whether you decide to have surgery, radiosurgery or conservative management (wait and watch) you still have to subject yourself to at least annual check-ups viia MRI scans which in itself is akin to the 'wait and watch' scenario. It therefore makes sense, subject to medical advice, to avoid any form of medical intervention whenever possible and enjoy your present quality of life without taking unnecessary risks until such time that you are advised that additional treatment is deemed necessary.

The obvious benefits to 'wait and watch' are negative risks to your health and the knowledge that ongoing advances in medical technology should ensure that future AN treatment options will be even more dynamic offering increased successful outcomes and reduced risks of permanent post treatment morbidity.

Best Regards

Derek
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

ppearl214

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Re: It's official - I'm waiting & watching!
« Reply #3 on: May 17, 2007, 02:16:41 pm »
Betsy,

Sounds like a plan.  Next follow up is soon enough to make sure that "thang" ain't growin' in your head... hang in there and keep busy... just keep busy... really will be helpful to you during this time!

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

macintosh

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Re: It's official - I'm waiting & watching!
« Reply #4 on: May 17, 2007, 03:06:12 pm »
An interesting commentary on wait and watch from the University of Pittsburgh website:

Survey Case One: You are a 37 year-old neurosurgeon who presents with mild decreased hearing on one side. You have no tinnitus and no balance problems. Facial function is normal. An MRI scan (right) shows an intracanalicular acoustic neuroma and serial scans have shown a small amount of growth. Which management strategy would you choose for yourself -- observation; surgical resection; stereotactic radiosurgery; fractionated radiotherapy?

Response: The majority of surgeons stated that they would choose stereotactic radiosurgery for management of their small acoustic tumor (n=283; 43%). Only 122 surgeons stated that they would choose surgical resection of their tumor (18%). Fractionated radiotherapy was chosen by 2% of responders. Interestingly, 240 surgeons stated that they would continue to observe their tumor (36%) rather than undergoing any specific treatment at the present time. It had been stated in the case presentation that serial scans had already shown a small amount of growth. This tumor had been observed and was increasing in volume. Nevertheless, approximately one-third of responders continued to choose observation for a 37 year-old patient with a small, but growing tumor.


Betsy

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Re: It's official - I'm waiting & watching!
« Reply #5 on: May 18, 2007, 06:15:08 am »
Thanks for the support everyone.  To be honest though, I wasn't 100% sure I wanted to wait until I heard myself telling my doctor! But now that I've commiitted to waiting (at least for now), I'm feeling a lot more like the pre-dx Betsy.

Richard, I like the term "active watcher".  I've set some goals for myself...including losing a couple inches around my waist before my next MRI, and of course learning as much as I can about treatment options.  As tempting as it is to go into denial, I'd rather be prepared for making the next decision when that time comes.

Who knows?  Maybe I'll finally learn patience!  Mom will be so proud!

15mm left side AN, diagnosed 4/25/07, radiosurgery via Trilogy 8/22/07.  Necrosis & shrinkage to 12.8mm April 2009

Nancy Drew

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Re: It's official - I'm waiting & watching!
« Reply #6 on: May 22, 2007, 12:16:30 pm »
This was a helpful post because I am waiting and watching also, and I hope to be doing so for a long time if possible.  I just got back from my annuall MRI, and I have to wait for two weeks to get the results.  I am a bit on edge, but at the same time I'm ok because I don't really have any bothersome symptoms--slight hearing loss in the AN ear at times and minor balance issues.  My AN is small 4mm x 5mm (at least a year ago, that is).  My doctor recommended if there is growth, I should just go ahead with gamma knife.  But, it is up to me.  I am going to wait and watch as long as I can and get a second opinion if needed.  Good luck to all.  Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

johnsli

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Re: It's official - I'm waiting & watching!
« Reply #7 on: May 22, 2007, 01:27:47 pm »
Heh Nancy,

Another stupid question.  Why do you have to wait so long for the result of your MRI?  My results were 24 hours.  My ENT ordered the MRI and he was on vacation, but, the hospital told me before I left the MRI room that the results would be ready in 24 hours.  My GP got the result and called me withing 24 hours.  I just had to see you sit and ponder. 

LOL
Laura

pearchica

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Re: It's official - I'm waiting & watching!
« Reply #8 on: May 29, 2007, 06:41:55 pm »
Okay, I love the Nancy Drew name! She was one of my favorites growing up- cool convertible, got to help Dad in the office, had the great clothes, sweet boyfriend and her girlfriend George (is that right?). Most likely, I'm the "george of the group"...

The whole MRI thing is amazing to me- it seems half of our group gets immediate results while the other have has to wait two weeks. I don't get it...I had my MRI on a Monday, found out Wednesday night (36 hours later) that I had a benign tumor... AYAYAY

I admire the wait and watch team.. my tumor was middle range that I was forced to make a desicion within 6 months..I think you all have learned a lot of patience...take care, Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

Nancy Drew

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Re: It's official - I'm waiting & watching!
« Reply #9 on: May 31, 2007, 01:13:22 pm »
It is frustrating to wait for the MRI results.  The doctor only had an appointment available two weeks after the MRI so that is why I am waiting.  After your comment Laura, I decided to be proactive.  I called the place where I had the MRI and told them I wanted a copy of my MRI and a copy of the written report.  They said come on over and get it.  When I got there they said it would cost me $30 for the films.  Said they had sent a CD to my doctor along with the written report.  Well, I then said give me a copy of the written report.  The doctor who read it said it was not policy to give out info without it first going through my AN doctor.  I told him I own my records, right?  Yes he said, but we have a policy that we stick to.  Said he didn't want to upset me just in case I didn't understand the results.  I just left.  Why bother at this point even though I was mad.  Strange thing is that they gave me my films from my first MRI without charging.  I would really love to have my films for getting a second opinion if needed.  Don't I own those films?  Anyone else out there had to buy their films.  Jeez, we own our ANs right?  Thanks to all.  Nancy 
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Nancy Drew

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Re: It's official - I'm waiting & watching!
« Reply #10 on: May 31, 2007, 05:35:00 pm »
Thanks for the support Bruce.  I have had all of my MRIs done at an off site location.  I guess the hospitals do better with records perhaps.  For my first visit after the initial MRI my doctor told me to go to the facility and get the films and bring them in.  I told him I wanted to keep my films, and he said no problem  The second MRI was sent by the facility so I didn't have to pick that one up.  But, then I forgot to ask the doctor for them so will do that at my visit next week.  Now it seems the facility sends a CD to the doctor, and they keep the films and sell them to the patient.  Doesn't seem fair to me.  They also said I can buy the CD.  All seems weird to me.  But, I guess in the longrun I just want to have a good reading after a year has now gone by.  If I get a second opinion, I guess the doc can request them.  In my past work as a social worker, it has always been customery (and the law) to give cllients records generated by the agency. Of course, the facility needs to keep a copy on file for continuity of care and legal purposes.  Seems like the CD would do for this facility where I had the MRI done.  Oh well, I'll just spend my energy focusing on educating myself about my AN and options available.  Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

 


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