I'm scared

[sharonov]

My doc in Chicago said that it's official--my AN is abutting the 5th cranial nerve and thus causing my Trigeminal Neuralgia.  He recommends the retro-sigmoid approach.  I am scared, very scared.  I want a second opinion and know that I'm not supposed to ask for recommendations, but anyone know a really really good AN surgeon in Chicago?  Dr. Wiet is hosting the convention along with my doc, Chandler, but anyone else?   Or maybe I should go to the House Clinic.  I don't know.  Right now I don't know anything.

Sharon

[CHD63]

Hi Sharon .....

There are others who will answer on this, as well, because I do not know about AN surgeons in the Chicago area.  However, I do very much know about the awfulness of trigeminal neuralgia ...... and I wish for you a speedy surgery date.

I had very successful microvascular decompression surgery (via retrosigmoid approach) for trigeminal neuralgia 15 years ago in Pittsburgh.  The neurosurgeon who did mine is no longer practicing at UPMC.  The neurosurgeon who did my AN surgery is a professor at Duke University (he is also a visiting professor at WVU/Morgantown).  I went to Duke for my AN surgery and it was extremely successful.

I know others on this Forum have sent their MRIs/reports, etc. to House in LA for recommendations with no obligation to have them do the work.

Keep us posted on how things go.

Clarice

[grega]

Hi Sharon ..... first .... my prayers are with you!  

And even tho you express that you don't know anything, please keep in mind that you DO know that this is the proper place to express that fear  .... and also to ask for help.  Cause you WILL get a lotta feed back from the good folks here.

I'm on the east coast so I can't answer your question, but there are quite a few on this forum who DO know docs in your area.  I feel sure that they will come to your aid very shortly.

The best to you!

Greg

[sharonov]

Thanks, Greg and Clarice.  I should also say that I'm willing to travel to get the best.  For something this important, that can affect so much of my life, I'd empty my bank account and crawl on my belly across the country earing pigtails!

Clarice, were the AN and TN related?

[grega]

Please Sharon .... you're too young for that!   

I know you'll get info about docs in the Chicago area from the posters herein, but if you decide to venture elsewhere, Johns Hopkins in Balto also comes very highly recommended. 

Keeping you in our thoughts!

Greg

[Jim Scott]

Hello, Sharon ~

Please accept my regrets for your AN diagnosis, which can be quite scary until you know more and have a plan in place to address this almost-always benign cranial tumor.  I would like to suggest that you post your search for Chicago-area AN doctors/surgeons on our 'Physicians' forum, http://anausa.org/forum/index.php?board=6.0 as well as using the 'search' function to seek surgeons in your area.  We have other Chicago-area AN patients who have undergone successful removal surgery ('leapyrtwins'- aka Jan, comes to mind) that will offer suggestions , too.

You're not alone and although this may seem like a dark time, we'll do all we can to shine the light of knowledge on your situation and support you all the way.  Be of good cheer - you're among friends!. 

Jim

[Jeepers]

Hi Sharon,

I'm in the Chicago 'burbs and am having my AN surgery with Dr. Wiet's colleague, Dr. Battista on July 9 at Hinsdale Hospital.  Jan (leapyrtwins is also a pt of Dr. Battista). When I was diagnosed 6 yrs back, I met with John Leonetti at Loyola and Battista in Hinsdale - the Ear Clinic also has an office in the city, I believe. All three have very good reps ... I just felt the most comfortable with Battista. His neurosurg is Dr. Kazan, who also comes very highly recommended. No need to belly crawl!  

Battista did offer two surgical options, and I chose translab. Also, Battista also does GammaKnife at Alexian Brothers in Elk Grove Village. It's nice to have someone agreeable to both procedures, as much of the decision is based on what you seem to naturally be tending toward.

Try to stay calm - this place is great for providing good, sound information along with many positive prayers and vibes.  PM me if necessary - I'll be glad to share.

Good luck!
Jeepers

[CHD63]

Sharon .....

As far as I know the TN & AN were unrelated, inasmuch as the TN was on my right side and the AN on the left.  Because of surgeries now on both sides, I am continuing to have balance issues.  It is very manageable, however ..... I just have had to greatly strengthen my visual and sensory motor aspects to compensate for the lack of vestibular function.  I also am extremely careful when standing up quickly or turning directions too quickly when walking.

My TN was caused from pressure by an artery and 2 veins on the 5th cranial nerve at the brain stem.  During that surgery, the two veins were clipped (to reroute) and the artery was braced up via teflon pads.  I awoke to be totally pain free for the first time in six months ..... what a relief!  That was 15 years ago and it has never returned ..... thank goodness!

Someone else on this Forum (I am embarrassed to say I cannot remember who .....) has had trigeminal neuralgia from their AN.  I am hoping they see this thread and chime in.  I am so grateful my AN was not pressing on the trigeminal nerve ..... my symptoms were unsteadiness and sudden hearing loss.

Clarice

[4cm in Pacific Northwest]

Welcome.

Know that there are many great posties on this forum with a wealth of knowledge. Contacting Jan (username “leapyrtwins� ) is a good idea. I suggest also registering for the ANA symposium since you are already on that locale… where you can network with others.

There is also this support group that may be able to help you with the 5th nerve involvement of your tumor.

Quote from their website
"The mission of The Facial Pain Association (formerly The Trigeminal Neuralgia Association) is to serve as an advocate for patients living with neuropathic facial pain, including trigeminal neuralgia, by providing information, encouraging research and offering support."

Link
http://www.fpa-support.org/support/index.html



The surgeon I know of that is reputable for his dealings of tumors specifically involving the facial nerve(s) is Dr. Jack Kartush in Michigan. (He has the patent on the facial nerve probe used in surgeries). Here is his information
http://www.michiganear.com/about/jkartush.html

I sent him my MRI for an opinion. He gave me a consult- over the phone. I decided that this was too far for me to go from Oregon… and I did not want the “multiple surgeries� approach he suggested to me. (Now that I have facial nerve damage- I think differently… but I cannot turn back the clock and have to I have live with that choice I made - 2 years ago.) Send him your CD of you MRI with a covering letter- and see what he suggests. I know others on our forum- here, in that area, had good results with him with regards to facial nerve preservation…. Just a suggestion…

DHM

[leapyrtwins]

Sharon, welcome to the forum 

things are crazy in my personal and business lives right now, so I haven't been around the forum much lately, but I was alerted by a fellow forumite about your plight.

I have no idea who Dr. Chandler is, but I recommend that you consult with Dr. Robert Battista.  Dr. Battista, IMO, is one of the best at treating AN's - he did a fantastic job with mine - and although he's at Chicago Ear with Dr. Wiet, he won't just echo Dr. Wiet's opinion.  He may agree with it, but that won't be because they are partners; and if he disagrees with it, he certainly won't hesitate to tell you.

As Jeepers told you, Dr. Robert Kazan - who incidentally is the only neurosurgeon that Wiet and Battista do AN surgeries with - is tops in his field and extremely well-known in the Chicago area. 

House is a great facility, but not all of us could - or would - go there given the chance.

I'm going to PM you my personal contact information, including my home phone number.  I'm generally there after 6:30 p.m. these days, but if I miss you, I'll call you back.

Stay strong; there is life after an AN.

Best,

Jan

[Lilan]

Dr. Chandler is at Northwestern. A former colleague of mine had an AN radiated by him and she was very pleased with him.

[Adrienne]

Hi Sharon,

Sorry I can't help with doctors or recommendations on that, but just wanted to let you know that 3 weeks ago I had the Retrosigmoid surgery to remove my AN, which was VERY involved with my Trigeminal nerve.  It was causing shocks down my face which were unbearable.  Since the operation, I have had not one shock. Complete relief, much to MY relief!  Heaven to be done with those for good.  Because the tumor was so involved with that nerve, I do have a bit of 'numbness' (pins and needles) on that side of my face.  I'm hopeful that this will go away over time (I didn't have it before surgery, it's new since surgery.  I'm hoping the nerve heals).

Good luck with finding a surgeon you feel comfortable with.  I trust that when you do, your Trigeminal pain will be relieved too!

Adrienne

[Keri]

Hi Sharon,
I hope all these replies have helped give you some comfort. I wish you the best in finding the right doctor and hospital for treatment. It is scary, but many will be praying for you and encouraging you throughout this whole process.

Keri

[leapyrtwins]

Dr. Chandler is at Northwestern. A former colleague of mine had an AN radiated by him and she was very pleased with him.

Interesting, both Wiet and Battista teach @ Northwestern - but I've never heard of Chandler before now.

Jan