Author Topic: New here...torn about what to do w&w or surgery...in ny area  (Read 7792 times)

Blags

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New here...torn about what to do w&w or surgery...in ny area
« on: August 03, 2012, 08:04:24 pm »
Hi- I'm a healthy active 34yr woman with 2 young children. In Jan12 I started getting dizzy and lightheaded while exercising and it continued to occur throughout the day over next couple months. Was diagnosed in march 12 with 7mm AN on rt side intracanicular. Not near brain stem yet. Hearing is perfect and only random ringing in ears. Have seen three top Dr in NY and received 3 different opinions. First said w&w then gamma knife if necessary, said he would refuse to operate on me at this point in time. Second flat out said surgery- middle Foss approach. Third said could w&w awhile then if grew or symptoms worsened to do retro sigmoid surgery. I am having trouble weighing all these different opinions. I have taken vestibular therapy for a couple months and my dizziness and balance only seems to be worsening. Though I understand my body is trying to compensate. I am now getting nausea daily as well. I am leaning towards surgery - middle Foss - hoping to preserve hearing and facial nerve since still in tact.   This whole process is overwhelming because the ultimate decision is mine and I am feeling stressed about it. What if I make wrong decision and am worse off after surgery.  My symptoms are bad enough that they impact my daily life not in a debilitating way but they don't allow me to live the life I want to live. Prior to symptoms starting I was running half marathons and kickboxing daily. Now I can't do either BC of how dizzy and off I feel. I have trouble walking a mile. I know my life could be much worse. I think that is why I am having trouble being the ultimate decision maker Because I can possible cause more problems for myself. But I also don't like living feeling this way. Sorry so long winded... Guess I have a lot on my mind. Any in sight helpful . Also anyone with experience in NY area helpful. Thanks!
Oct 2012 - 1.4cm AN removed retro sigmoid with Dr. Boockvar and Dr. Brown at Weill Cornell NY Presbyterian

Jim Scott

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Re: New here...torn about what to do w&w or surgery...in ny area
« Reply #1 on: August 04, 2012, 12:16:01 pm »
Blags ~

Hi - and welcome.

I'm sorry you're faced with an AN diagnosis and we understand how stressful it is to make a treatment choice.  We're not doctors and cannot offer medical advice but we do offer our collective experience and try to make useful suggestions. 

We know that the fear of making a 'wrong' treatment decision is intimidating.  No one wants to mess things up and suffer problems that could have been avoided. We've 'been there'.  Fortunately, your AN is small enough to give you some time to decide.  However, because your symptoms are negatively affecting your quality of life that will serve as an impetus for you to make a treatment decision sooner rather than later.  The fact that you're in otherwise good health and fairly young are positive factors.  In addition, being in the New York City area is a plus as there are excellent doctors available with much experience working with AN patients.  I would caution you to 'step back', take a deep breath and breathe out s-l-o-w-l-y.  :)

Don't allow yourself to obsess over your decision.  Do all the (online) research you feel you need to do, including further physician consultations, if necessary.  Most of all, try to remain 'connected' here and feel free to ask any question.  We have a wealth of information available and many members with a wide variety of experiences that are willing to share their knowledge with you.  All you have to do is ask.  We don't presume to tell you what to do and once you've made a treatment decision, we don't criticize or second-guess.  We support you, in every way possible.  That's our purpose; to inform, advise (when asked) and most of all, support other AN patients - because we know what you're going through.

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.

Blags

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Re: New here...torn about what to do w&w or surgery...in ny area
« Reply #2 on: August 05, 2012, 06:03:51 pm »
Hi Jim-
Thank you for your kind words and support.
Oct 2012 - 1.4cm AN removed retro sigmoid with Dr. Boockvar and Dr. Brown at Weill Cornell NY Presbyterian

millie

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Re: New here...torn about what to do w&w or surgery...in ny area
« Reply #3 on: August 09, 2012, 08:26:29 pm »
Blags-
I feel the same as you-worried I'll be worse off after surgery, but I have to make a decision because life as I know it has changed.  I've always been a pretty well person, and I want to be as active as I ever was.
I am also in the New York City area, coming from eastern Long Island. I too have seen two different groups, gotten two different opinions.  I also sent my MRI's to House; they were very kind and responded to me in a phone call within a week. They happened to agree with one of the former doctors I mentioned. Finally,  I am getting one more opinion and then deciding. Looks like I will have treatment in October.
I you wish, you may review my posts; my history is quite similar to yours.
Jim Scott has good words for us.
Hang in there.
Millie

teripo

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Re: New here...torn about what to do w&w or surgery...in ny area
« Reply #4 on: August 10, 2012, 06:01:56 am »
Hi ...I have AN 1.8 cm .I was diagnosed in June last year.I was thinking I had to hurry up and get treatment also.Not saying you shouldn't...but do like Jim said get more opinions.It seems to take awhileto decide.I am in LI also and went to about 8 Dr.s I am on hold right now because I took a followup MRI and AN is the same as last year.I was dizzy in the beginning,but I think it got better.Partly because of my workout with my granndaughter... she keeps me moving!It is a slow growing tumor that ,at best, has to be maintained as far as I understand.And I still have a little hearing left so I dont want to mess with well enough.So give yourself time.Every Dr. I went to said their treatment was best.

skipg

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Re: New here...torn about what to do w&w or surgery...in ny area
« Reply #5 on: August 17, 2012, 10:36:49 am »
Hi Blags,

Fear and worry are common with this diagnosis. I want to encourage you re-read Jims post. He is spot on and full of wisdom. You have time to step back and do your research. Keep posting and know we are here to walk this walk with you.
Skip
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

jockieau

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Re: New here...torn about what to do w&w or surgery...in ny area
« Reply #6 on: August 19, 2012, 09:55:11 pm »
Hi Blags

I read your post the other day and have re-read and feel compelled to reply, as I am in a similar situation. My AN is 8mm and confined to the IAC. My hearing (last check) was fine. My main complaints are a general sense of wonkiness and pressure in the head which is really tiresome and tiring. After my inital frantic panic when I was diagnosed (Dec 2010), and having done my research and found my surgeons, I decided to go with middle fossa when there are signs of growth. While it is not growing, I will live with my symptoms - like others, I fear the surgical outcomes will make me feel worse that I do currently. I could come out of it with no problems, quite possible, but I'm not prepared to take the risk.

I've heard people cite "what are you waiting for" - for me, it is signs of growth - to know it is on the move and it ain't gonna get smaller. I don't want the problem to get more complicated through not taking action, but while it is mosy-ing along without growth I'm ok with W&W.

So for me that would be the bottom line - do I feel !@#$ enough that the risks of surgery are acceptable? Some people do seem to come out of their surgery well and get on with life pretty much as before - you may well be one of those people, particularly if you are fit and healthy. That is the question that has to be weighed up - would I have the surgery, and say lose my hearing, and wish I hadn't "rushed" into it? Or have the surgery further down the track and have issues with the facial nerve because I had left it alone... Arrgghhh!!! That is the dilemma!

Anyway, I made peace with myself by putting in place this plan (W&W until there is growth) - I felt, as everyone seems to, so much better when I had made that decision. 

Good luck with your decision-making and I think you do know when you have made the decision you can live with.




Blags

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Re: New here...torn about what to do w&w or surgery...in ny area
« Reply #7 on: August 20, 2012, 04:53:03 am »
Hi Jockieau-
Thanks for your response. I understand everything you are saying. I met with the group I liked best again last week. I am doing an MRI tomorrow- a couple weeks shy of 6mo. I am hoping the results will swing my decision for me. It is so hard to decide- I have my good and bad days. Some weeks good outweigh bad and others it is more bad!!
 Last eeek-I took my two young boys on a ferry ride and spent day at the beach. I felt great all day. I told my husband when I got home I think I need to literally live on the beach. I guess watching the waves and smelling the fresh air is therapeutic for me. Yesterday I walked two blocks to our local playground with them... I was staggering all over and couldn't walk a straight line. Then I like to have fun with myself and close my eyes and watch how I think I am walking straight but am really walking more than a 90degree angle to the right!!!! So like you my symptoms are bearable most times but I really miss the part of my active life I have had to sacrifice. We will see want happens tomorrow!
BLags
Oct 2012 - 1.4cm AN removed retro sigmoid with Dr. Boockvar and Dr. Brown at Weill Cornell NY Presbyterian

millie

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Re: New here...torn about what to do w&w or surgery...in ny area
« Reply #8 on: August 20, 2012, 08:36:53 am »
Praying for you Blags and waiting to read how your appointment went.  Jockieau, just wanted to say, I during w&w I felt the same as you.  Leave well enough alone.
However, it grew .3mm in one direction and 1mm in the other direction in five months.  Also my hearing has totally eroded in the left ear over the last year.  All the words printed before about "wonkiness"  and "fullo-head" apply to me now.
So my gut tells me to do something.
At least we have this forum and some wonderful doctors out there!
Mil

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Re: New here...torn about what to do w&w or surgery...in ny area
« Reply #9 on: October 16, 2012, 05:12:16 pm »
Hi,  The  decision as to what treatment and when is such an individual decision.  All I can do is to share my process.  I was diagnosed with a 5mm tumor in May.  Then I got tinnitus and some minimal balance issues.  My hearing was still very good and I decided to have middle fossa surgery at HEI in August, after I read about so many people losing their hearing or having it worsen while they waited.  My surgery was 8/1.  They gave me over 70% chance of preserving my hearing and I came out of surgery with the same level of hearing I had before surgery.  The tumor they removed was 7mm.  Unfortunately, the tumor had grown into my facial nerve so they had to leave a tiny bit in order to avoid damaging my facial nerve.  I am very grateful to have my hearing. 
I wish good things for you.

karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

skipg

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Re: New here...torn about what to do w&w or surgery...in ny area
« Reply #10 on: October 17, 2012, 06:39:59 am »
Karen,
You are so right about this being an individual decision. Mine stated at 7mm and after 6 mos it was unchanged. Only symptoms were the ole "wonky head syndrome", tinnitus, and a little unsteady at night.  Decision was made by all that it was ok to wait a year. Just before the yearly mri, head became more stuffed up, hearing left me as the tinnitus increased, and the unsteadiness at night increased. I knew something was up. Tumor jumped to 14mm. I am now being treated with protons. In hindsight, should I have gone sooner for treatment? Probably, but it was my decision to make and as your heading says "it is what it is", and I am ok with this.
Skip
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

It is what it is

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Re: New here...torn about what to do w&w or surgery...in ny area
« Reply #11 on: October 17, 2012, 08:05:07 am »
I very much respect that Skip. 

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

Mickey

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Re: New here...torn about what to do w&w or surgery...in ny area
« Reply #12 on: October 17, 2012, 09:08:54 am »
It seems that every AN decision seems so individual. So much depends on so many things. Fortunately if they grow at all they are slow moving . This gives everyone enough time to evaluate and come up with their best solution. I can suggest one thing as a Wait + Watcher. If you decide to W+W be pro active in doing whatever you can to make yourself feel better. Their is a W+W brigade post here which is a good start on a path to follow for health + well being. In worst case scenerio if its not for you you`ll go into your other treatment options in great health. As for me I`m 5+ years W+W and doing well. Best wishes, Mickey

arizonajack

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Re: New here...torn about what to do w&w or surgery...in ny area
« Reply #13 on: October 18, 2012, 05:46:23 pm »
As others have noted it's an individual decision based on individual criteria.

All I can do is give you my decision and criteria as an example and throw it into the mix with others.

I lost most of my right side hearing and developed balance issues by Dec 2011 and was diagnosed AN by MRI April 2012. Size 3mm x 4mm x 9mm. Went on Watch and Wait and hung around here reading about everybody else's experiences.

I learned that surgery is often appropriate when there is hearing to be saved or where the AN is very large.

I also learned that Gamma Knife or Cyber Knife is appropriate when the hearing is gone.

I had my second MRI last week (10/10/12) and the AN was 4mm x 4mm by 11mm. At first I thought 2 mm wasn't that much but then I thought of it a different way. It's 20 %. Then I contemplated a 20% growth every 6 months and decided no way I'm letting that happen.

I'm leaning toward Gamma Knife pending a couple of consultations which I hope to have in the next couple of weeks.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

It is what it is

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Re: New here...torn about what to do w&w or surgery...in ny area
« Reply #14 on: October 19, 2012, 06:13:06 am »
I'll be interested to hear about your consultations.

 Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

 


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