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Author Topic: New and Nervous  (Read 9541 times)

knakag01

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New and Nervous
« on: December 17, 2009, 04:55:50 pm »
Hello...

My name is Kim, I am a 33 year old mother/partner/enrollment counselor living in Northern California. At this time my partner stays at home with our daughter while finishing his BS and I am the sole provider for the family (we swapped roles last year after I graduated with my BS/Business).

I was diagnosed with a 19mm x 12mm Acoustic Neuroma in November of this year, when doing an MRI for an existing pituitary adenoma (good news: Pituitary Adenoma has shrunk away with meds!) I have had decreased hearing over the past three or four years. I thought maybe I had gone to one too many concerts or was just getting older. I have also experienced balance/dizziness issues. I thought after dancing (ballet/jazz/hip-hop) for many years, I had just gotten out of shape and needed to re-strengthen my core. Never did I think that I had, yet another, growth in my head!

I found the ANA soon after my diagonsis and it has been a valuable resource. I found these message boards just this week after meeting with a neurosurgeon who told me surgery was my best option.

Sooo...they're going into my head, working around my brain, balance nerve and facial nerve??? This can't be good. I am quite concerned with the amount of time I may need to be out of work and the on-going issues that most people seem to deal with after surgery.

I am told the Translab approach would best work for me, as I have about 12% hearing in my right ear at this point, and the AN is extended into the internal auditory canal. I am being referred to Stanford for the surgery. Does anyone have any expereince with Stanford (Dr. Jackler) or the Translab approach? I would love to hear your stories, experiences, advice, etc.

From what I can tell, based on the posts I've read thus far, this is a group of supportive and caring folks. I am so glad to have found you!!
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Kim
1.9cm x 1.2cm AN Right side
Diagnosed 11/09
Translab with Dr. Jackler @ Stanford on 5/20/10
Facial Paralysis (temp) & SSD Right side, some balance issues but not as bad as I thought :)

Jim Scott

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Re: New and Nervous
« Reply #1 on: December 17, 2009, 05:06:47 pm »
Hi, Kim - and welcome!

I'm so glad that you found the ANA website and now, these discussion forums.

Many of our members have had their AN removal surgery performed at Stanford University Medical Center, have undergone the Translab surgical approach and many have been under the care of Dr. Jackler - and had great outcomes and recoveries.  I'm sure they'll be posting here, soon.  I trust that your surgery will be a resounding success and that your recovery will be uncomplicated, rapid and total.  

Jim
« Last Edit: December 18, 2009, 01:46:10 pm by Jim Scott »
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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.

Pooter

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Re: New and Nervous
« Reply #2 on: December 17, 2009, 05:18:25 pm »
Hi Kim and welcome to our little exclusive club!  It's perfectly normaly to be in utter amazement and shock when you're first told about the AN.  Just out of curiosity, have you looked into possible radiation treatment?  At the current size, you're well within the size limitation..  That would likely a good option given your concerns about being able to work soon after treatment and not miss time at work and especially given that you're the sole provider for the house.  There may very well be a good reason that it wouldn't work in your case, but it's at least worth exploring to know for sure.

I'm glad you found us and we'll help anyway that we can!

Regards,
Brian
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Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

lori67

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Re: New and Nervous
« Reply #3 on: December 17, 2009, 06:20:24 pm »
Hi Kim.

I don't have any advice on the doctor you mentioned, as I'm on the other coast, but I do know I've heard good things about him.

Just wanted to welcome you and tell you it's perfectly normal to be nervous at this point.  We've all been there.  The more you research your options and talk to those that have been in your shoes, I think the less nervous you'll be.

Welcome to the family!
Lori
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Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Tricia (horsekayak)

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Re: New and Nervous
« Reply #4 on: December 17, 2009, 07:04:36 pm »
Welcome to a good, safe, and supportive place to be.  Lots of great folks to help, advise, cheerlead, sympathize...and some free, great information is also available from the ANA if you havent already contacted them. 

You might find our forum to be a bit addictive...i know i did after i got my diagnosis (in Aug of this year)...it has turned out to be a very good habit for me....helped me be methodic and persistent and organized in finding a treatment, physician that "had the right vibes" for me...the more you read here, the more you'll know when you are asking questions, etc about the doc and about the treatment options

again, welcome
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Tricia (horsekayak)-Diagnosed 8/10/09
1.5 cm right side AN
Gainesville, GA (near horses and Lake Lanier)
Linac radiosurgery at Shands Hospital/Univ of Florida  12/1/09  Go Gators!!!

"Excellence is to do a common thing in an uncommon way"...BT Washington

leapyrtwins

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Re: New and Nervous
« Reply #5 on: December 17, 2009, 07:39:08 pm »
Quote from: knakag01 on December 17, 2009, 04:55:50 pm
Sooo...they're going into my head, working around my brain, balance nerve and facial nerve??? This can't be good. I am quite concerned with the amount of time I may need to be out of work and the on-going issues that most people seem to deal with after surgery.

Hi, Kim and welcome to the Forum  ;D

Yes, the possible side-effects of AN surgery are a little disconcerting - to say the least - but keep in mind that side-effects are not "givens" they are possibilities.  And also keep in mind that side-effects do improve or go away completely over time.  And, in addition, the vast majority of those with "on-going issues" do quite well with them and lead wonderful, full lives.

Everyone is different and you don't know what your outcome will be until you get to your destination.  I had a very positive surgical experience, but that doesn't mean that my recovery didn't take time - it's kind of the nature of the beast.  My only permanent side-effect is SSD (single-sided deafness) which has been greatly improved by a BAHA implant.

Returning to work is different for everyone.  A lot depends on the type of work you do and what you encounter post-op.  I work a desk job and returned to work part-time 2 1/2 weeks post op and full-time at 4 weeks.  The typical AN patient who has surgery returns to work 6 weeks after surgery, but some return sooner; some return later.  The same goes for driving post op; some drive within a few weeks, others take longer.

As Lori said, it's normal to be nervous but doing your research will help a lot.  So will reading the posts on the Forum, as well as the literature the ANA will send you if you request it.  The ANA will also send you a WTT (willing to talk) list which is another great resource.

Like Pooter, I'm curious.  Have you looked into radiation?  Dr. Chang @ Stanford has a stellar reputation.  I'm not questioning your choice of surgery - if it's a choice you've already made - I just want to make sure you've covered all your bases before you make your treatment decision.

Best,

Jan



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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

knakag01

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Re: New and Nervous
« Reply #6 on: December 17, 2009, 08:45:59 pm »
Jan,

Thank you so much for your insight and encouragement!!

I haven't looked into radiation, as it hasn't been presented to me as an option. It has been such a whirlwind, but I have a list of items to discuss with Dr. Jackler when I meet with him. Radiation will definitely be on the discussion list!

Take care,
Kim

Logged
Kim
1.9cm x 1.2cm AN Right side
Diagnosed 11/09
Translab with Dr. Jackler @ Stanford on 5/20/10
Facial Paralysis (temp) & SSD Right side, some balance issues but not as bad as I thought :)

ginger21

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Re: New and Nervous
« Reply #7 on: December 17, 2009, 08:59:33 pm »
Kim,

I am reading your story and it sounds so simalar to mine. I too was diagnosed in Nov. 09 and my husband is out of work right now and I am the solo supporter of the family we have 2 girls 12 and 4. I am very nervous about what to  do. I am leaning in the way of CK. But I still have not consulted with the Drs or radioligest just yet. One thing I can tell you the people in this forum are great. So far they have been very helpful.Just do your research and talk to as many people and Drs as you can before you make your decion. I know thats what I am going to do. BTW I too live in Nor Cal, the Sacramento area.

Ginger
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W & W as of 01/27/2010 keeping my fingers crossed for the next 6 months
4mm AN-right side
www.facebook.com/gingerleigh72

Kaybo

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Re: New and Nervous
« Reply #8 on: December 17, 2009, 09:07:19 pm »
Kim~
Hi!  Just popping in to say hello and welcome!  You've already received some great info here but if you would like to talk to someone who has "been there" - PM me your number and I would be glad to call you!

K   ;D
Logged
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!

Mark

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Re: New and Nervous
« Reply #9 on: December 17, 2009, 09:40:13 pm »
Kim,

I would echo Jan's comments that as long as you are going to Stanford, you should include a consult with Dr. Chang. I also consulted with Dr. Jackler and he is a world class AN surgeon. He works primarily with Dr. Harsh and on occasion with Dr. Chang on AN's. Had I opted for surgery I would have chosen him. I like Dr. Chang because he does both CK and surgery and I feel he always gives a fair view of both and recommends which one he sees as providing the best outcome for the patient. As long as you are in the research stage I think Chang gives you a more balanced view of understanding the options than Jackler who is pretty biased towards surgery. But again, if you really want surgery, Jackler is a great choice.

A couple of links to both

http://stanfordhospital.org/profiles/physician/Steven_Chang

http://stanfordhospital.org/profiles/physician/Robert_Jackler

Good luck

Mark
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CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

CHD63

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Re: New and Nervous
« Reply #10 on: December 17, 2009, 09:42:16 pm »
Kim .....

Adding my welcome to this forum of caring, supportive people who have been on this road.

Stanford is well recognized as having an excellent medical facility for treating ANs so you can rest easy on that.  I did not have translab (I had retrosigmoid) so someone else can assist you better on that question.

Best thoughts.

Clarice
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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

pjb

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Re: New and Nervous
« Reply #11 on: December 18, 2009, 08:02:18 am »
I do not give much advice only one word research, research, research my prayers are with you.

Regards,

Pat
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Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

knakag01

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Re: New and Nervous
« Reply #12 on: December 18, 2009, 03:38:48 pm »
Wow Ginger, our stories are very similar! I moved from Sacramento back to my hometown, Chico, in '07 when my daughter was born. Have you determined where you'd like to have your treatment? I am meeting with Dr. Jackler at Stanford on Jan. 5th. Not too far from us, so I'll have to let you know how it goes.  :)




Quote from: ginger21 on December 17, 2009, 08:59:33 pm
Kim,

I am reading your story and it sounds so simalar to mine. I too was diagnosed in Nov. 09 and my husband is out of work right now and I am the solo supporter of the family we have 2 girls 12 and 4. I am very nervous about what to  do. I am leaning in the way of CK. But I still have not consulted with the Drs or radioligest just yet. One thing I can tell you the people in this forum are great. So far they have been very helpful.Just do your research and talk to as many people and Drs as you can before you make your decion. I know thats what I am going to do. BTW I too live in Nor Cal, the Sacramento area.

Ginger
Logged
Kim
1.9cm x 1.2cm AN Right side
Diagnosed 11/09
Translab with Dr. Jackler @ Stanford on 5/20/10
Facial Paralysis (temp) & SSD Right side, some balance issues but not as bad as I thought :)

knakag01

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Re: New and Nervous
« Reply #13 on: December 18, 2009, 03:48:08 pm »
Mark,
Thank you so much for the guidance. I really appreciate it! It is so great to hear from someone who has gone to Stanford for treatment. May I ask you if  you would mind sharing your experience/story (pre and post CK)?

Thank you!

 
Quote from: Mark on December 17, 2009, 09:40:13 pm
Kim,

I would echo Jan's comments that as long as you are going to Stanford, you should include a consult with Dr. Chang. I also consulted with Dr. Jackler and he is a world class AN surgeon. He works primarily with Dr. Harsh and on occasion with Dr. Chang on AN's. Had I opted for surgery I would have chosen him. I like Dr. Chang because he does both CK and surgery and I feel he always gives a fair view of both and recommends which one he sees as providing the best outcome for the patient. As long as you are in the research stage I think Chang gives you a more balanced view of understanding the options than Jackler who is pretty biased towards surgery. But again, if you really want surgery, Jackler is a great choice.

A couple of links to both

http://stanfordhospital.org/profiles/physician/Steven_Chang

http://stanfordhospital.org/profiles/physician/Robert_Jackler

Good luck

Mark
Logged
Kim
1.9cm x 1.2cm AN Right side
Diagnosed 11/09
Translab with Dr. Jackler @ Stanford on 5/20/10
Facial Paralysis (temp) & SSD Right side, some balance issues but not as bad as I thought :)

Mark

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Re: New and Nervous
« Reply #14 on: December 18, 2009, 06:55:19 pm »
Kim,

sure, glad the information was helpful

Here's a link to my AN story on the Cyberknife patient page. It has only been updated through my 6 year check up in 2007, but I had my 8 year last month and it would read the same

Mark

http://www.accuray.com/uploadedFiles/Patients/Patient_Stories/Mark%20Patient%20Story%20FINAL.pdf

Logged
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001
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