Connect with ANA Peer Mentors - available to newbies

[ppearl214]

Hi All,

I have just been added to the Willing to Talk List and I am also trying to organize a support group for the Greater part of Western Mass

thanks

LisaP

Lisa,
Congrats for being added to the WTT list! Now, there are a few of us from MA on the list (myself as well)  and tickled you are now one of them!  What an asset to the ANA to have you volunteer your time and energy and for stepping up to organize the W. MA ANA Support group! I KNOW you are going to do a FANTASTIC job and major kudos to you!  

Well done!
Phyl

[Turnip]

 My name is turnip,

I am a newbie who lives in AR. Am a 63 old male recently diagnose with AN. Size of tumor is 1.5cm x 1.2cm x 1.2cm left side. I am experiencing quite a bit of balance issues, numbness in my lower lip, some facial nerve numbness on left side. Tongue feeling weird as is my taste. Guess many others have had some symptoms, some people not it seems. This all started most recently in last 2 weeks.
Neurosurgeon will not do surgery until June as he seems to have very busy surgery schedule.

This has sure been overwhelming but am better at accepting this all I think. Is truly about one day at a time isn't it?

 I have been on line and have read alot of info from everyone who has had surgery, has been very helpful. Thanks for being so honest and upfront. It helps us newbies and our spouses in understanding what is pre and post surgery.

I have gone for consult with neurosurgeon Dr. Ali Khrisht in Little Rock, AR.  He is currently with St. Vincent Hospital, was with UAMS in Little Rock prior.

Question, is there anyone on line who had surgery or info on surgeon by name of Dr. Ali Krisht in Little Rock, AR? Just wanting to know reputation, how surgery went, credentials,reputation? Wanting feedback if possible please.

Appreciate any info anyone can provide please.

Also,  Need info form those who have Tricare insurance please.

Thanks alot,

Turnip

[lori67]

Hi Turnip and welcome.

I don't have any info on your doctor or the hospital, but I do have Tricare insurance.  Actually, if you go under the "Insurance" topic here, there's a thread or two about Tricare.

I had Tricare Prime when I had my surgery.  We were stationed in Nashville, TN at the time, so I used civilian doctors and hospitals and everything was covered 100% with the exception of my neurosurgeon, who was out of network.  I could have used a different neurosurgeon, but this guy was the one my neurotologist usually teams with and I felt more comfortable using him.  Even so, I only had to pay the $1000 catastropic co-pay, which is a bargain for brain surgery if you ask me!   

I have Tricare Standard now, which I believe is what retirees have (not sure).  There is a percentage that I pay for each doctor visit and it also has a $1000 catastrophic co-pay, so the most I'd have to pay out of pocket is the $1000.  I'm guessing that as long as your doctors are considered  in network, that would be the same for you.

Hopefully someone will chime in with info on your doctor.

Good luck!
Lori

[Turnip]

Hi, thanks for email.

DId U have Tricare Prime or Standard when U had surgery?

We have Prime.

Yes, have gone on to the insurance website. Is where I saw WETBE's info on Tricare also..

Thought we only had to pay the co-pay with the hospital?  I need to call also. Hard when they don't have the codes yet and our date with surgeon is TBD..June sometime. We meet with neurosurgeon on May 19th.


Thanks alot..

Turnip

[lori67]

With Prime, you shouldn't have to pay anyone, as long as they're in network.

The doctor's office should have an insurance person who will do all the work of figuring out what's covered and what's not, so don't drive yourself crazy over it.  I know I've never had to worry about it - I just had to show up when they told me to and they took care of all the paperwork.

Just out of curiousity, have you looked into to radiation at all?  Sounds like that might be a good option for you also, considering the size of your AN. 

Lori

[Turnip]

Hi Lori,

Yes we are kinda looking into Linac.. Surgeon said that because tumor is pressing on brainstem and radiation may not get it all. We are going to ask May 19..

Do U know anyone who has had Linac radiosurgery?

Thanks,

[leapyrtwins]

Hi, Turnip.  Welcome to the Forum.

If you search on LINAC (search box is located on the upper left side of your screen under your user info) you'll find several threads on LINAC.

Jan

[Shan1014]

I have posted a diary of my experiences with AN.  I am post surgery almost 4 months from a massive 4 cm growth.  Ask any questions you would like.
Here is the site.  mymediabandit.com/

[tsr]

i had a 1.5 cm AN surgically resected in 2003 (middle fossa) and it has regrown to 10mm. i am now considering cyberknife treatment. how do i find out which CK centers have performed the most treatments on AN's, especially post op AN's, and which centers are the best and most experienced with AN's in general? thanks for any insight you can share.

[Mickey]

Iv`e spoke to alot of great people here and am on the WTT list. Will be happy to talk! Mickey

[mysticfem]

    Hello Ana,
       I'm interested in researching endoscopic surgery and have just read a message from ixta who had had this and is on your WTT list. How do I access this list?

[leapyrtwins]

Contact the ANA directly - by phone or through the main page of this website - and ask for the WTT list.

Jan

[jbenn]

Thank you for the info.  I will call them to day also.  I would really like to "talk" with as many as possible re. Dr.Tamargo and Dr. Niparko at Johns Hopkins and find out about their experiences.  Do you think they would know who those people might be if there are several?  Thanks. 

[leapyrtwins]

The WTT list doesn't list the name of the doctor(s) who treated the AN patient.

But it shows the patient's name and contact info (email and phone) plus what type of treatment they had (surgery, radiation).  If you find someone "local" to you, they may have had their treatment local. 

My information on the list also shows that I have a BP100 (BAHA).

If you'd like to talk to patients of Drs. Tamargo & Niparko, I'd ask them if they have any patients you can contact.  Some doctors are willing to share this information with their new patients - if their "old patients" aren't opposed to it.  My doc knows I'm more than willing to talk to patients, so he's mentioned to a few that they can find me through this Forum.

Jan

[kaitysmom]

I'm a patient of Dr. Tamargo.  Although I haven't had my surgery yet.  I'd like to hear from folks who had their surgery by him as well.