Author Topic: 1st appointment - I'm joining the watch and wait crew  (Read 7317 times)

BT

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1st appointment - I'm joining the watch and wait crew
« on: April 25, 2008, 06:38:25 pm »
I wanted to start off by saying thank you to everyone for your words of wisdom on AN's.  Being so new to this whole thing is still very difficult for me, but finding this site was a huge blessing. 

I just went to my first appointment with a neurologist.  We talked a lot about what an AN is and what my options were.  He told me that because of the size of my AN(4mm x 2.5mm) I have all the options open to me at this point.  Since I have only had one MRI I am going to wait until my next one to see what my AN decided to do.  I am leaning towards surgery when I do have to do something though.  I am the type of person that just can't stand to know I have something in my head.  I already hate knowing it is there, but understand I should at least wait until my next MRI to make any type of decision.

I do have to say I feel a lot more at ease now after my appointment.  I do have a few questions though.  When should I start to interview other doctors?  Should I start now, or should I wait until my next MRI is done?  And how many surguries total, or a month is a lot of surguries?  My doctor said he does about 4 a month.  Is that normal?

BT

leapyrtwins

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Re: 1st appointment - I'm joining the watch and wait crew
« Reply #1 on: April 25, 2008, 10:27:58 pm »
BT -

this sounds like a great plan.  As you probably already know, ANs are typically very slow growing, so IMO you should be able to wait until your next MRI before you start to interview other doctors.  Depending on whether or not your AN is growing, and whether or not you are experiencing symptoms, you may be able to wait even longer.   

As far as the number of surgeries go, I'm not really sure of the answer to your question ???  I know that the ANA recommends finding someone with experience in treating ANs, but I don't think that experience has certain parameters.  To this day, I have no idea how many AN surgeries my neurotologist has done in his 17 years of treating ANs, nor do I know how many he surgically removes each month.  I just know he has experience and that I was comfortable with him and confident in his abilities.  And almost one year post op I still feel the same way about him.

I'm probably not the "norm" but every patient is different.   I just somehow knew in my gut that he was the right doctor for me.

I hope you continue to frequent this discussion forum while you are watching and waiting,

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

Derek

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Re: 1st appointment - I'm joining the watch and wait crew
« Reply #2 on: April 26, 2008, 03:07:00 am »
Hi 'BT'...

Welcome to the 'wait and watch' gang and your decision to opt for this routine is a good choice at your early stage of diagnosis, particularly so with relevance to the small dimensions of your AN.

Just as you have stated, it is a normal reaction upon diagnosis to initially have a compelling desire to have the AN removed. However please do carry out maximum research on all of your available options because statistically stereotactic radiosurgery carries less risks of long term post op morbidity problems.

Please also be fully aware that excision does not carry a guarantee that that the tumour will not return as the low percentage chance of re-growth occurring is about the same as with radiosurgery.

Personally, I have fully accepted the 'little bugger' as a permanent resident who (as one of our contributors aptly described) can stay as long as it behaves itself!

Best of luck with your ultimate decision and whatever treatment option that you eventually choose you will know that it is the right one for you.

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.

sgerrard

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Re: 1st appointment - I'm joining the watch and wait crew
« Reply #3 on: April 26, 2008, 11:32:47 pm »
Hi BT,

Just joining the others to agree that watching and waiting makes perfect sense at this juncture. (I don't really know what a juncture is, but is sounds right). 4mm is small enough that it could even be difficult to treat by any method - not enough there to get a handle on, so to speak. It's just a bit of nerve tissue bulging out and growing more than it should have - not a great thing to have, but it is still you, after all, not some alien implant.

There are lots of posts on this forum discussing doctors, so maybe you can start by browsing those, before starting more consultations. The more informed you can be, the more you will get out of those of meetings. You have plenty of time, so relax and do a little background research first.

Welcome to the forum, by the way, it's a nice place to visit, as well as a good place to get information.

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.

Mickey

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Re: 1st appointment - I'm joining the watch and wait crew
« Reply #4 on: April 27, 2008, 09:01:49 am »
Hi, I`ve been watching and waiting since officially diagnosed Aug. 07.   MRI in Mar. status quo .12cm by .06cm.  I`ve had tinnitus for 30 yrs and basicly wouldn`t even known about my AN condition if it wasn`t for a sharp ENT who made me go for MRI.  Spoke to many wait and watches some for more than 10 - 15 years after diaognosed who intend to do nothing unless symptoms call for it. Basicly what I`m trying to say with an AN that small there seems to be plenty of time for you to get an idea of all options if any need to be taken. Good Luck, God Bless, Mickey

frank

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Re: 1st appointment - I'm joining the watch and wait crew
« Reply #5 on: April 27, 2008, 09:20:05 am »
Hi BT
Welcome to the Forum and to the watch and wait group. I was diagnosed about a year ago and had my second MRI last week. I go to my local ENT this Tuesday for the results. This has given me a year to study up on ANs and the many treatment options (mostly via use of this Forum and all the great people who will so willingly answer your questions.) Your AN is very small so you have a lot of time to educate yourself. That's the one nice thing about having an AN, in comparison to some other illness, they are slow growing so you don't have to jump in and do something right away.
frank
4/07 MRI 8x5x6 mm  AN, RS  
Partial hearing loss and tinnitus 
4/08 MRI 10x5x5 mm
No additional hearing loss
4/09 MRI 1.2 cm , 6mm in AP dia, small mushroom shaped component into CB angle cistern. No additional hearing loss
Gamma Knife 11/09 Univ Hosp GK Ctr, Syracuse
Dr Hahn & Woods

Nancy Drew

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Re: 1st appointment - I'm joining the watch and wait crew
« Reply #6 on: June 08, 2008, 02:37:02 pm »
BT,

Just wondering how it came to be that you discovered that you have an AN.  Were you having any symptoms or was it found by accident?  Mine was found by accident in 2005.  I was having vertigo, and I couldn't walk because the spinning was so bad.  My ENT decided to see what was going on and sent me for a MRI. The AN was found.  Samll 4 mm x 5mm.  He sent me to the AN doctor, and he was confused about the vertigo because that isn't usually a presenting symptom (hearing loss is usually what brings one to get the diagnosis).  I had hearing pretty much in the normal range with hearing actually better in my AN ear than the other.  He thought the vertigo was caused by migraines without the headache.  I have a history of migraines, but I had never had vertigo, especially like this, with my usual migraines.  I have bipolar disorder, and I had been experiencing depression at the time after years of stability.  My psychiatrist had gradually increased my Lamictal (an anticonvulsant) level over time, and he was confused about the vertigo and decided to do a Lamictal level.  It showed that I had a level above the normal limit and higher than any level he had ever seen in his practice.  As soon as the medication was reduced to my usual dose, the vertigo completely went away.  So, the AN was indeed found by accident.  I thought the AN would never grow so I just didn't think much about it except around my annual MRI.  No growth for MRIs one through four.  Slight growth and bothersome hearing loss occured this past year.  The doctor recommends that I have the gamma knife.  I am awaiting a second opinion from a team of AN experts.  Should get the results soon.  So, it is hard to say what I will be doing at this point since I have only one doctor's opinion.  I have researched some, and if I do decide on treatment I will probably go the GK route unless someone can convince me otherwise.  Waiting and watching still sticks in my mind though.  I have had all of my MRIs done at the same facility, with the same machine, and same person doing the MRIs.  One- three MRIs read by different docs, and the AN was stable along with my hearing.  Four and five were read by the same doctor.  Fourth was the same as one thru three, and then the fiifth showed slight growth along with some hearing loss.  My doctor said the AN would probably continue to grow with my age (49), and of course whatever hearing loss I have from here on out is hearing I will never get back.  With GK hearing could stay the same, get worse or I could lose it altogether.  You will read stories here that are successful and not so successful so it is a hard decision to wait and watch or go for treatment.  For me this whole process seems like mental torture because there is no guarantee with any of these treatments.  So, just all I can suggest to you at this point is to continue to research, keep on asking your doctor questions, and get a second opinion or more if that will make you feel better.  This whole process is freaky, and I totally lost it when I found out I had the AN, and I am now freaking out even more now that it is growing and the hearing is affected.  Keep up with this board if it brings comfort to you.  Sometimes I think it is ok to take a break especially if you don't have any symptoms that really bother you.  Best wishes, and I hope my story sheds some light on what it is like to wait and watch.

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

OMG16

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Re: 1st appointment - I'm joining the watch and wait crew
« Reply #7 on: June 08, 2008, 03:59:39 pm »
Hi BT and welcome to our family.  I would recommend that you send Jerseygirl a PM as she is from your area and has done great research that can help you with your answers.  You sound like a level headed person and I have great faith that you will make the right decision for yourself.

I don't agree with Jan as I am the type of person that wants to be prepared just in case.  Sorry Jan you know I love you!  Anyways I myself personally would start interviewing and getting second and 3rd opionions now only because of my controling obsessive ways.  You can also send your MRI's to house in California for an opinion and it is free of charge.  You will find answers to alot of your questions just by searching the forum site.  If you get overwhelmed or confused than please do let us know and we can help direct you.  Kisses to your forehead and again welcome.  :-* 16
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

Jim Scott

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Re: 1st appointment - I'm joining the watch and wait crew
« Reply #8 on: June 10, 2008, 01:32:17 pm »
BT:

The decision to monitor your AN (via annual MRI scans) for any noticeable growth seems logical and probably what I would do at this stage (also known as 'a juncture').  ;)  We call it 'Watching-and-Waiting'  but by any name, it's simply observation with the understanding that you'll probably have to make a treatment decision sometime in the future, be it a year or a decade from now.  From your post, you appear to have decided on microsurgery, which is fine, although you would very likely be a candidate for radiation.  I would suggest you might consider exploring all your treatment options. 

As for a surgeon's experience, a neurologist performing 4 AN surgeries per month sounds quite experienced.  That number equates to 48 per year, almost 500 over a ten-year period.  Even so, I would want to know more about his outcomes - i.e. patient complications such as facial nerve damage.  Interviewing other surgeons, while always advisable, may be problematic if your AN remains tiny.  Any prospective surgeon will want to view your MRI films/report and if your AN remains relatively minuscule, they may well demur on offering a surgical consult.  However, contacting a few doctors seeking a consultation regarding your AN isn't unreasonable.  If any decline your case, so be it.  If not, you'll have a better 'field' of doctors to choose from.  If you prefer to wait until the results of your next MRI in September, that too would be a reasonable approach. 

Thanks for the update.  I wish you 'good' (no-growth) MRI scans for the foreseeable future.  :)

Jim



« Last Edit: June 11, 2008, 07:36:53 am by Jim Scott »
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.

MaryBKAriz

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Re: 1st appointment - I'm joining the watch and wait crew
« Reply #9 on: June 11, 2008, 04:31:53 pm »
Hi,

Watch and wait makes sense. I also think you can get your MRI, and question other doctors while you wait for your next MRI. Then you will be expert in your own AN byt the time your next MRI is done.

Good luck,

Mary  8)
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

leapyrtwins

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Re: 1st appointment - I'm joining the watch and wait crew
« Reply #10 on: June 13, 2008, 12:27:40 pm »
BT -

I noticed you haven't posted in this thread since your initial post back in April.

Can you update us on what's going on with you?  Have you decided to wait until your next MRI to start consulting with other doctors?  Or are you currently doing that?

Just wondering.

Hope you're doing well,

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

BT

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Re: 1st appointment - I'm joining the watch and wait crew
« Reply #11 on: July 21, 2008, 07:30:34 pm »
Hi everyone,

Thank you for all of your input over the last couple months.  I am still here...no one has scared me away.  I just took some time off to pretend like I didn't have an AN.  In case you were wondering, it didn't work!!  I think about it at least once a day.  I really have not started my research yet.  I would like to start now though.  I am going to go back to do a hearing test and a 2nd MRI in October.  I am going to start looking up doctors in the Seattle area as well.  I would appreciate any input on that subject.  Also, I am a young AN patient.  I am 26.  If there is anyone else out there in the same age range that has had treatment or not, I would love to talk to you about your AN journey. 

Nancy, I found out about my AN a few months ago when I lost my hearing in my left ear.  My hearing came back after a few days, but my ENT, Dr. Hoistad recommended that I still get an MRI.  Thank God I did.

Again, thanks for all of the support and information.  I will definitely update everyone as time goes by.

Bethany


sgerrard

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Re: 1st appointment - I'm joining the watch and wait crew
« Reply #12 on: July 21, 2008, 08:57:48 pm »
I just took some time off to pretend like I didn't have an AN.  In case you were wondering, it didn't work!!

Darn. That might have become treatment option #4. :)

If you are interested in CK radiation treatment, I suggest the cyberknife support group (http://www.cyberknifesupport.org/forum/), a good place to ask questions that get answered by doctors who practice CK. There is CK doctor in Seattle, Dr. Sandra Vermeulen, about whom I have heard good things (http://www.doctorvermeulen.com/).

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.

Nancy Drew

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Re: 1st appointment - I'm joining the watch and wait crew
« Reply #13 on: July 21, 2008, 09:48:32 pm »
Hi Bethany,

Sorry to hear that you are having to deal with an AN so early in your adult life.  This is a good place for support.  There is so much info to consume so take it kind of easy if you can--although I need to take my own advice, too.  Best of luck on your journey.

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

leapyrtwins

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Re: 1st appointment - I'm joining the watch and wait crew
« Reply #14 on: July 21, 2008, 10:13:58 pm »
Bethany -

so glad to hear we didn't scare you away; nice to "see" you again  :)

It would have been wonderful - and a medical miracle - if the AN did just appear  ;)  IMO, taking time off to digest the news that you have an AN is a good thing; it can help you see things more clearly.

I don't know any doctors in Seattle, but Steve's suggestion is a good one. 

Jan (wishing I was 26 again  :D )

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

 


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