Newbie -- IL

[ibelieve2]

Hello All - I was given this website by the Mayo Clinic and happy to find this AWSOME group!  I was diagnosed with AN 2- weeks ago March 24; the first week I had a week long headache (suffer from migraines anyway usually last 3-days per event) Scared out of my mind. Prior to March 24 (January 24) , I was diagnosed with severe Vertigo home/off work for 5 weeks working from home since 3/1 (that is stressful) -- Vertigo has not gone away. I have slight hearing loss and vision is impaired.

The tumor measures 5.5 x 2.8 mm don't know how long I have had the tumor. I live in Forest Park, IL just outside Chicago, my initial consultation was with Dr. Mark Wiet at Rush - I have my second opinion with Dr. Leonetti at Loyola.  I have also contacted the Mayo Clinic (setting up a consultation). 

Has anyone gone to the Skull Base Institute in Los Angeles, CA?  When doing research, the Institute pioneered endoscopic pituitary surgery (10 years).  They have successfully treated over 4,000 patients around the world. Endoscopic surgery is less invasive -- does anyone know about the Dr. who pioneered the technique (Dr. Shahinian)? Does anyone know of of a endoscopic surgery in IL or closer?

I am doing research on all options, I don't like the Radiation option or the Wait and See option.  Looking for ALL opinions being a Newbie ( let me know your thoughts. Did I mention I am going to be a first time Grand Mother (lots of stress)!!!

ibelieve2 (54)
4/7/2011

[opp2]

hi there,

Welcome to the web site. So sorry you've been diagnosed with AN. I am terribly pleased to see that you were referred here by Mayo.

There are a couple of members who have had surgery with Dr. S at the Skull Base Institute. His technique, unfortunately has not been widely accepted due to lack of acceptance by the medical community as a whole. I believe that is changing but progress takes time.

Please spend time reading. You are in a good position because you have a small tumour, (in regard to emergent need for treatment) but as with many folks with small tumours when you are diagnosed, it seems that you are suffering more intense symptoms (vertigo etc).

All the best as you make your way through this journey.

[Suu]

Hi Denise (got your name from your other post  )

Welcome to the most wonderful site of caring ANers in the world. Congratulations on becoming a first time grannie (I have 3 and another on the way) - when is the little one due?

To your post - I didn't have any options put to me as it was a large tumour with no signs, that I remember, right up to the day that my face when tingly and numb.
As Nikki has said, please read and research and ask as many questions as you like.  We are a varied bunch on here with no 2 people seeming to be the same. 

Please let us know what you decide and how you're feeling before, during, and after your consultation?

Warmest wishes,
Suu xxoo

[leapyrtwins]

Denise -

I just replied to your PM.

Jan

[Jim Scott]

ibelieve2 ~

Hi - and welcome.  I'm sorry to learn of your symptoms but glad that you discovered the ANA website and discussion forums.  Jan ('leapyrtwins')  is a good source of information on Chicago area AN doctors and I'm sure her information will be useful to you.  Your diagnosed acoustic neuroma is small but if radiation or observation (watch-and-wait) are, as you state, not an option you're interested in, surgery is your only choice.  Endoscopic AN removal surgery is growing in popularity, if not with the neurosurgeon community at least with some AN patients.  Unfortunately, to the best of my knowledge, there are no doctors performing the endoscopic procedure on AN patients outside of Dr. Shahinian at Cedars-Sinai in Los Angeles, California (which you've already researched) and Dr. Jho at Allegheny General Hospital in Pittsburgh, Pa . Here's a link to the Jho Institute: http://www.drjho.com/

Frankly, only a very few of our members have undergone endoscopic AN surgery so we don't have a wealth of information on it.  It is still considered a bit of an outlier by the medical community but it does seem promising, albeit with it's own set of risks.  Unfortunately, there is no 'magic bullet' when it comes to AN surgery.  Of the 3 standard surgical procedures, all carry risks. Much depends on the size and location of the tumor as well as the surgeon's skill and experience operating on ANs.  I underwent a 'debulking' procedure using the Retrosigmoid approach that included the neurosurgeon severing the tumor's blood supply.  This was followed (3 months later) by 26 FSR 'treatments' intended to destroy the remaining tumor's DNA.  They were both successful and I'm doing fine today, almost 5 years later.  I trust that whatever approach you ultimately decide on, it will be the right one for you.   Meanwhile, feel free to post any questions or comments and know that we're all AN patients and can relate to your anxiety and concerns because we've all been where you are, today.  We empathize with you. and wish you the very best outcome to whatever procedure you chose.

Jim

[kraynok2]

Welcome to our special group, although you had to join us by having this tumor.  Do all the research you can.  I must have done about 100 hours of research.  I was so glad to find this site.  You will find a wealth of information and opinions here.  ANs are different for everyone, but when we all share, it helps to know we are not alone.  One of the first things you should do is to order the free books offered on this site.  They come really quickly and have good information.  As most of these are slow growers, you have time to research and learn all you can to make an informed decision.  Be sure to find a surgeon that has done many of these operations.  Good luck to you and let us know how it goes.
Sandy

[james e]

Chicago is a great town. I am sure you can find the best of the best right there. All of the BIG cities seem to collect most of the great doctors. Any way, welcome to the club. Listen to your doctors, but you will hear far more here than you will there. The problem is deciding how you will be treated. No one here will tell you what you should do, but by reading about our experiences, you will come to a final decision. I changed my mind several times about my treatment, but based on what I read here, I was treated, and am really glad that this site was available.

Read all of the posts. Ask all the (stupid) questions. Good luck to you.

James

[msmaggie]

Welcome to our exclusive club.  Sorry about the steep membership fee, but we make up for it by being friendly, knowledgeable, and sympathetic.  There are no stupid questions...or even weird ones. I think we have just about heard it all.  You are in good hands, especially with our own wonderful Jan right there in Chicago with you! It really helps to have someone to talk to, and we will be glad to hold your hand the whole way.

Priscilla

[ibelieve2]

You guys are very friendly and knowledgeable steep membership dues though! Jan has been AWSOME.   I am doing a lots of research to make an informed decision.

[leapyrtwins]

Membership dues are only $40 annually - breaks down to $3.33 per month.  Less than a latte @ Starbucks - or so I'm told 

[msmaggie]

ANA membership fees are reasonable....it's the WHOLE package (mental. physical, hospitals, drs. etc.) of having an AN that's pricey! 
New friends who totally understand what you are going through?  Priceless!!
Priscilla

[e m]

Dear I Believe

I am 61, from Michigan, and almost 11 weeks post opt.  I went to HEI and they removed my 1 cm AN.  They saved my hearing and facial nerve.    It seems that everyone has different symptoms.  Mine included some slight vertigo, very slight hearing loss, and balance issues of which I was unaware until they gave me some tests.  I did a lot of investigation including this web site, joined the AN group, went to a local support group meeting, and tried to talk to one person a day from around the country.  I got their names from the "willing to talk" list.  I had 3 different opinions in Michigan and my decision to go to HEI was because they are by far the best in the country.  They have the most experience and best success rates.  My doctors were Friedman and Schwartz.  I had the middle fossa approach.

And on April 1 I became a 3rd time grandma. 

Ella

Hello All - I was given this website by the Mayo Clinic and happy to find this AWSOME group!  I was diagnosed with AN 2- weeks ago March 24; the first week I had a week long headache (suffer from migraines anyway usually last 3-days per event) Scared out of my mind. Prior to March 24 (January 24) , I was diagnosed with severe Vertigo home/off work for 5 weeks working from home since 3/1 (that is stressful) -- Vertigo has not gone away. I have slight hearing loss and vision is impaired.

The tumor measures 5.5 x 2.8 mm don't know how long I have had the tumor. I live in Forest Park, IL just outside Chicago, my initial consultation was with Dr. Mark Wiet at Rush - I have my second opinion with Dr. Leonetti at Loyola.  I have also contacted the Mayo Clinic (setting up a consultation). 

Has anyone gone to the Skull Base Institute in Los Angeles, CA?  When doing research, the Institute pioneered endoscopic pituitary surgery (10 years).  They have successfully treated over 4,000 patients around the world. Endoscopic surgery is less invasive -- does anyone know about the Dr. who pioneered the technique (Dr. Shahinian)? Does anyone know of of a endoscopic surgery in IL or closer?

I am doing research on all options, I don't like the Radiation option or the Wait and See option.  Looking for ALL opinions being a Newbie ( let me know your thoughts. Did I mention I am going to be a first time Grand Mother (lots of stress)!!!

ibelieve2 (54)
4/7/2011

[lori67]

Hello and welcome to the "family"!

As others have said, you're in a great location to access great doctors without having to worry about traveling.  We have quite a few forum success stories that have used the docs in that area.

Don't have much else to add, as I had my surgery in TN, but wanted to welcome you and wish you luck on your quest for information.

Lori

[lauralynn]

Welcome to our AN family!  Sorry to hear of your recent diagnosis but thankfully AN's are treatable.  I have been coming to this forum since I was diagnosed for a large AN in 2009.  It is very comforting knowing you can come here anytime to ask anything and you will see that there are very caring people here who will help and guide you the best that they can.  Please keep in touch and I will be praying for you.

God Bless,

Laura Lynn

[Cheryl R]

Becky, I am sorry to hear of your daughter and NF2.     I began to have this at an older age and been thru 3 tumors now.   One needs to be with a dr who knows NF2.         How they are taken care of can be different than the usual care.             Size and location of tumor makes a difference.        I would not go with skull base tumor.              I am in Iowa and have ahd good care at Univ of Iowa and Dr Bruce Gantz.             House ear Institute in LA also has drs with good NF2 care.            I have talked to them at the AN symposiums and my dr is similar to their views on NF2.             What size is her ANs and does she have many symptoms, esp hearing loss.    Which tumor is taken care of first can depend on size and what the chances of hearing saved in one ear.         I don't know the Chicago drs and should hear from others here too,
          Keep at it till you are with a dr you feel is right for you.                     Cheryl R