Anyone know Sharonov? She posted in 2009 re endoscopic w Dr. Shahinian

[LisaM]

Greetings ANers,

I read a few threads that are of great interest to me started by Sharonov.  These threads are at the links below:

Dr. Jho vs. Dr. Shahinian
http://www.anausa.org/smf/index.php?topic=10032.0

Arghh! Arghhh!!!!! My Decision has been crucified!
http://www.anausa.org/smf/index.php?topic=10009.0

I made my decision--and I'm sticking to it!
http://www.anausa.org/smf/index.php?topic=9995.0

I sent her a PM a few days but have not heard back.  Does anyone know the results of her surgery with Dr. Shahinian?

xxoo,
LisaM

[leapyrtwins]

Lisa -

I know Sharon (Sharonov) through this Forum, she lives in the Chicago are, but I haven't heard from her in a while.

When I get a chance later today I'll see if I can find her email address.

Are you certain she actually had the surgery with Dr. Shaninian?  Last I knew it was just a thought.

Jan

[leapyrtwins]

Lisa -

found this thread http://www.anausa.org/smf/index.php?topic=11516.0 dated January 2010 where I say that Sharon decided to watch & wait.

I refer to a post created by Sharon, but unfortunately I can't access it.  Ever since the Forum was updated, I've had a lot of issues with stuff like that  

Jan

[Cheryl R]

I remember her saying that she was going to wait.  Maybe even at the symposium.       I wonder how she is doing.
                                  Cheryl R

[Kaybo]

Isn't she on FB??

[leapyrtwins]

I think Cheryl is right.  Sharon(ov) was at the symposium in Chicago and I believe she did say she was waiting.

Not sure if she's on FB - I don't go there - but if she is Kay, please ask her to come back here and update us.

Thanks,

Jan

[LisaM]

Thanks for the info.  I was hoping that Sharon had had the surgery and that she could tell me about her experience.  I have, since posting this topic, found allegro17 (Laura) and read her posts before during and after surgery.  Very helpful!  I'm also looking into acabitz and seal who I believe also used Shahinian.  If anyone else can point me in the direction of others who have used Shahinian I would be ever so grateful.

I've had a rough week. The reality of having one of these tumors is like a roller coaster ride of emotions.  Just when I think 'm Ok with it, I fall to pieces!  Reading what others have already gone through gives me a realistic picture of what I'm in for.

Thank you, thank you, thank you for creating this forum!

xxoo,
Lisa M

[jerseygirl]

Lisa,

I had my second surgery at SBI so if you have any questions about my experience, just send me a PM because I don't always read ANA forum anymore and a fellow member alerted me to your post.
 
              Eve

[GOIN2LA]

Lisa,

I also had surgery with Shahinan back in 2006.  Please feel free to contact me if you have any questions.

Sara

[sharonov]

I know Sharonov very well becaue it's me.  And I never had the surgery with Dr. Shahinian.

I've been in W & W for six years now.  Most of the time I've been able to completely forget about my AN.  This situation changed twice. 

Two years ago I developed Trigeminal Neuralgia and my neurosurgeon thought that it was probably connected to the AN.  He said that it was possible to cure both with one surgery.  I then frantically posted here almost by the hour, contacted 4 doctors for their opinion (incuding Shahinian), and was leaning toward using him--even though Medicare won't cover any of his surgeries.  It would have cost over $35,000, maybe $60,000.  There would go my IRA. 

Then two of the doctors to whom I sent my MRI results concluded that the TN and AN were unrelated.  Yay!  I went back to watch and wait.  I'm only on the board again because I had my biannual MRI and the tumor has grown.  Only a little, but it's grown.  It's still under 2 and my symptoms haven't changed, so I may yet escape surgery, but the growth has awakened my awareness yet again so here I am again.

I see that the Shahinian debate still rages.  One other guy who uses an endoscope is Dr. Jho in Pittsburgh.  I may consider him if surgery seems advisable.  One important fact for me, at nearly 69 yrs. of age, is the amount of time under anaesthetic.  It's far less with the endoscopic procedure.  I wish that I had a list of all Shahinians patients and how they felt 2 or 3 years down the road.  Regular surgeons absolutely hate him--mention his name and their lips curl unilaterally and they begin to hyperventilate.  But then, that's how other doctors felt about Lister, etc.  Is that a valid comparison?  Wish I knew. 
Sharon

[mk]

The question of who had surgery recently at SBI was brought up recently by "Chopper", who had his surgery 5 years ago.
http://www.anausa.org/smf/index.php?topic=15380.0

I posted a reply in that thread about a lady who had her surgery recently (last November if I remember correctly) on a previously radiated tumor. Her name on the forum is "mysticfem", but she doesn't participate regularly.

Marianna

[LisaM]

Hi Sharon!  Glad to finally hear from you!  I'm waiting and watching at the moment and will do another MRI in July to see what's going on with the, "marble" as I like to call it.  I consulted with Shahinian and spoke with a few of his past patients.  Everyone I talked to was pleased with their surgeries, though everyone I talked to had a tumor 3cm and up.  The AN found in my head is less than 2cm and I'd like to speak with patients that had tumors closer to 2 cm.  The patients I spoke with all lost the hearing in the AN ear and though no one had facial paralysis, each had something that was a little different post op; a dimple was gone, the AN eye closed slightly slower than the other eye, smile was slightly different.  Nothing that was noticeable to other people.  Considering the problems one can have post op, these seem minor and this is from the folks with large ANs.   

Since deciding to wait and watch, I've slowed down a bit in my researching surgeons.  I like Shahinian and I think that he is a skilled and talented surgeon.  Today he would be my first choice for the surgery.  I have also seen the curling of the lips that you mentioned when uttering his name.  Endoscope procedures make complete sense to me for brain surgery.  Not sure why the neurosurgeons are so slow to embrace it but it requires a different skill set that may require a big learning curve.  Shahinian recently published a paper that I can email if it's of interest. 

All this said, I'm determined to avoid the surgery.  I've changed my diet drastically and I'm doing aggressive acupuncture treatments to shrink the AN.  I hope that after my July MRI I have good news to report.  Fingers crossed until then.

[sharonov]

I'll be interested in knowing whether not the acupuncture works.  I had an appointment today with my neuro and was very disappointed.  He was in a big hurry, forgot who I was, wondered why I was there (a recent MRI showed some growth), said immediately that I should have radiation, and when I started questioning him because very hostile.  He was obviously in a big hurry and I didn't have a chance to ask him half of what I wanted to ask before he bustled out of the room.  Time for a new doctor, obviously.   When I said that I had decided not to do anything until my AN approached 2 cm, he almost scoffed.  SO aggravating!

So keep us posted. 

[LisaM]

Well... I was hoping for a miracle...

Had my MRI on July 14th (3 months after diagnosis).  The tumor is stable with no growth.  I was hoping that it would have shrunk just a tiny bit, but stable and no growth is still good news.  I have become acutely aware of my left ear.  I have good days and bad days with tinnitus.  If I get tired or stressed this seems to aggravate things with the AN.  I'm taking tumeric (a natural anti-inflammatory) and a number of other supplements to promote health.  The acupuncture was expensive and I was disappointed that seemingly it didn't help in shrinking the tumor, but it may have helped in other ways.  Seeing the acupuncturists helped me to look at my overall health and diet.  I feel the changes that I am making in my lifestyle are very positive.

Every western doctor I speak with tells me that I need to have it removed and not to wait.  It's such a dilemma!  I'll have another MRI in 3 months which will be my 6 month mark since diagnosis.  Fingers crossed it will be smaller by then!