Author Topic: Diagnosed this week - Acoustic Neuroma and Arachnoid Cyst impacting Brain Stem  (Read 31925 times)

kippy6

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Thanks so much for your comments. You are so awesome to offer your words of wisdom!

Did your insurance pay for the surgery in California if you lived in another state the same as if you had the surgery in state? I like the idea that the surgery usually lasts only about 6 hours unless it is an unusual situation.

Which doctors at the House do you recommend?

Lisa - thanks so much for your offers. It is almost midnight now, and I'm exhausted - but believe me, I will be asking more questions along the way. I hope that is okay.

Thanks Joef and Tony for your info on radiation! And Batty Princess, I can't wait until Wednesday, when I receive my MRI CD, so that I can mail it w/my written report to the House! I wish there was a faster way...

--I'm starting to get really interested in the House. I want to be back to normal ASAP (as much as possible). I also have dear friends who live in Peoria, AZ. I wonder if they might watch 2-3 of our kids while I'm in the hospital...if I used the House. I'd have to do it this summer while school is out if they were going to help me. I think Peoria is only about 6 hours from LA.

Thanks to all--
AN surgery July 19, 2006
for 3cm AN and arachnoid cyst (right side)
Translab surgical approach
Dr. Brackmann and Dr. Hitselberger
House Ear Insititute

Mark

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Kippy,

I'll throw in my 2 cents for what's it worth although I would certainly echo most of the comments made by Joef, Tony and Battyprincess. At just under 3 cm you are certainly within the range where radiosurgery is an option worth exploring with someone who is well trained in that discipline as opposed to someone who primarily does surgery. It is correct to say that 3 cm has been the conventional upper limit standard based on the GK studies. I believe CK has been able to expand that range safely based on it's greater level of accuracy but there are many other factors to consider as others have noted in making the best treatment decision for you.

I have no idea what an "arachnoid" cyst is but below is a response from one of the docs over on the CK message board addressing cystic AN's which may be of some help:

"Cystic" merely describes the presence of a significant fluid collection (or cyst) within the tumor. While very descriptive radiologically, we don't really use this to determine much. In fact, I just saw a 96 month follow-up from Gamma Knife of a large cystic AN that has shrunk to almost nothing and continues to shrink with each follow-up study. I would not say that being cystic, in and of itself, precludes CK or radiosurgery in general.

William S. Rosenberg, MD
Medical Director, Menorah Medical Center CyberKnife
Midwest Neurosurgery Associates
6420 Prospect Street, Suite T411
Kansas City, MO 64132
(816) 363-2500
wsr@post.harvard.edu



It might be helpful for you to post your question on this issue to one of the docs there at www.cyberknifesupport.org and see if "arachnoid" changes anything. They also might be able to address some of the treatment size questions.

Also, HEI is not the only place that will review MRI's for free. Dr. Chang at Stanford does it as does Dr. Medberry in Oklahoma city and I'm sure a host of others
do as well. From my perspective, the larger size of your AN does not not preclude either treatment option, but it does require going to very experienced docs in both areas to get a fair appraisal. HEI is a great place for a surgical consult but based on the dozens of people I talked to who have gone there to explore treatment options  I've yet to hear that they've ever recommended radiosurgery to anyone, regardless of size. While someone on this board has stated in the past that they actually have a GK available, a quick read of the misinformation on radiosurgery on their web site reveals their bias. If you decide on surgery as the best choice for you, I would certainly concur with many other folks on this board who have had surgery there that they are the premier place to go. Experience counts for a lot with AN's and the docs there definitiely have a lot. My only point is that I would personally not trust their knowledge or opinion of radiosurgery in making my final decision.


Best of luck to you

Mark

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

Joef

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Yep, House took both my insurance and my wife's , good thing because the bills I've seen are huge....

Mark's right, House is only good for surgery ... they NEVER do radiosurgery, and I too have no idea what
a "arachnoid" cyst is ..
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

lsf1234

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Hi there - I posted once, but it did not go through because I received 2 replies while I was posting.

I can tell that there are so many caring people on this board. Thanks so much. I haven't been stressed about this so far - I just typically ask a lot of questions. My husband is stressed enough for the both of us though.

As far as seeing a team of doctors, how do I see the whole team? What kinds of doctors constitute a team? I know a neurosurgeon and a skull-based doctor are two...are there more? I've been sent to see one doctor at a time, and it is exhausting. It would be so much easier if I could just meet with the whole team. It makes getting 2nd opinions very difficult. If there are 3 doctors per team...that's 3 doctor visits just to meet each team member!

BTW -  I have a friend who still has significant facial problems now 6 years after surgery for her AN. She's the only person I've seen who has had the surgery. Having a face where my expressions look off balance is my biggest concern, especially since she still has facial problems.


Wife4life - Your surgery is right around the corner. Who is doing your surgery and where? I will pray for you.

Tumor mom - I'm so glad the surgery on your daughter went well. I'd like to stay in the Atlanta area due to not wanting to leave my children. But my husband would like for me to go to California.

Batty princess - thanks for the info on the House in LA. Their name keeps coming up over and over again. That is so cool they'll review it for free. I'll get my MRI on CD by next Wedesday, and I'll send it then. Thanks for the suggestion!

CherylR - thanks for your suggestion on the eye drops. My eye actually feels better now, but it is good to know that there is something out there to try.

Joef - thanks for your info on the house ear clinic. It's nice to have direct info -- it just makes contacting them faster. I think I'll lose my hearing too. I'm okay with that.

Lisa Peele - I read your profile at the bottom of your reply. How do I get to your previous posts? I'm very impressed that you went to California with 4 children at the time. I imagine your children stayed in Ohio with relatives or friends. I do want to find out how you did it, and how you managed the care of your children. To me, that is one of the toughest decisions, is IF I have to have surgery, what do I do with my sweet children?

kippy6

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Thank you all for your recommendations. I'm glad insurance isn't a problem out of state!  I started getting some slight facial numbness a couple of days ago, which is still present. It's not my imagination. I'd like to find my doctor soon.

I will be definately be posting my question to cyberknife.org. Would you say that Cyberknife in Kansas City is the best place to get GK treatments, and the best place to search for Gamma Knife recommendations? I'm just wondering if I should consult with anyone else about GK.

Also, I looked at The House Ear Clinic online. They have 5 different locations. I live in Georgia.

1. Should I pick the location that is closest to me, or is there another location that is better?
2. Is there a surgeon that is preferred over others?
3. When I send my MRI copies to them, do I need to already have a surgeon name in mind?
AN surgery July 19, 2006
for 3cm AN and arachnoid cyst (right side)
Translab surgical approach
Dr. Brackmann and Dr. Hitselberger
House Ear Insititute

SuzeAN

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In response to your last post, I would say gather as much information as you can and time allows.  Be it CK, GK or microsurgery, then when your have all your information in your hands you'll have more questions, and then they will eventually lead to a solution that is right for your circumstances.  I believe in getting as much information from doctors that are experts in their fields.  I would also suggest contacting Barrows Neurological Institute in Phoenix, AZ; they do microsurgery, GK and CK; and have and excellent team of docs.

.....good luck and don't get overwhelmed (well I did too, but it gets better)  :)

Suzan
2.5 cm, left side
CK-Barrows 10/05

HeadCase2

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  The House Ear Clinic that is mentioned on this site in many posts is in LA.  Their web site is at http://www.hei.org/
 Regards,
 Rob
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

kippy6

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I am having problems with the right side of my face - the right cheek, and (right side) upper back teeth feel like I have had shots of novacaine or either severe Botox. My smile is normal, but it feels very different. I thought it was my imagination, but this has been going on for 2 days. It takes a lot of effort to smile normally on the right side of my face, so much that it is causing a cramp in one of my muscles.

Will I get my normal feeling back in these areas after surgery?
« Last Edit: June 27, 2006, 05:48:54 pm by kippy6 »
AN surgery July 19, 2006
for 3cm AN and arachnoid cyst (right side)
Translab surgical approach
Dr. Brackmann and Dr. Hitselberger
House Ear Insititute

john twoffer

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    • Acoustic Neuroma Foundation
Is anyone in contact with Kippy6? I would sure like to know what has happened to her with her tumor and cyst. It might be very helpful to my own case.
Thanks,
John Twoffer

I am having problems with the right side of my face - the right cheek, and (right side) upper back teeth feel like I have had shots of novacaine or either severe Botox. My smile is normal, but it feels very different. I thought it was my imagination, but this has been going on for 2 days. It takes a lot of effort to smile normally on the right side of my face, so much that it is causing a cramp in one of my muscles.

Will I get my normal feeling back in these areas after surgery?
Acoustic Neuroma and Cyst in my head.
I volunteer at:
www.AcousticNeuromaFoundation.org

Obita

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Hi John:

I know she did have surgery.  If you click on her username you can read her posts and send her a personal message. 

Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines