Author Topic: Large AN,just diagnosed  (Read 4981 times)

riabovamd

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Large AN,just diagnosed
« on: January 16, 2017, 05:14:16 pm »
Hello,
I am a highly functioning physician, just recently find out why I am so dizzy and tired.  I have 4.7 right AN.  No wonder inversions with yoga and running/skiing are impossible. I overnighted MRI to House clinic, waiting on their  call.   How long it takes them  to call after that?  I am ready to fly from Detroit to LA, have that out.  Really have my mind on House clinic, hope they take large ones like mine. /Any experience with House clinic with large AN?

sharonov

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Re: Large AN,just diagnosed
« Reply #1 on: January 16, 2017, 07:27:34 pm »
Hello,
I am a highly functioning physician, just recently find out why I am so dizzy and tired.  I have 4.7 right AN.  No wonder inversions with yoga and running/skiing are impossible. I overnighted MRI to House clinic, waiting on their  call.   How long it takes them  to call after that?  I am ready to fly from Detroit to LA, have that out.  Really have my mind on House clinic, hope they take large ones like mine. /Any experience with House clinic with large AN?

Sorry, my AN was smaller (1.7) but they do all sizes.  I chose Dr. Marc Schwartz largely because what I've read on this forum.  The advice is always to go with someone who has done a lot of AN removals, and Dr. Schwartz has done hundreds--probably in the last month! He's one of the gurus.  The other guru is only a few miles away, at USC Keck Clinic, Richard Friedman.  They used to work together, but Friedman moved to Keck so that he could do more research.

 Please post after you hear what Dr. Schwartz has to say.  Wow, 4.7!
Sharon

MontanaWriter

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Re: Large AN,just diagnosed
« Reply #2 on: January 16, 2017, 09:30:33 pm »
I was recently diagnosed here in Montana with an AN, only 1.6 cm, but my brother-in-law is an MD in MI, and his son had a glomas jugular successfully operated on at House Clinic, so he insisted I get in touch with House. The day after they received my MRI I heard from Dr. Wilkinson.  I'm scheduled for retrosigmoid surgery with him and Dr. Schwartz on March 1.  I'm sure they will be in touch with you very soon.

ANSydney

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Re: Large AN,just diagnosed
« Reply #3 on: January 16, 2017, 11:13:05 pm »
riabovamd, welcome to the club that nobody wants to a member of, but everyone's friendly.

A 4.7 cm AN is large, however sometimes they include the intrameatal portion in the dimension which makes it sound larger. Do you have any other dimensions or description.

House using microsurgery do any size.

Regardless of whether 4.7 cm is with our without the intrameatal portion, your symptoms sound mild for that size.

Willbur

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Re: Large AN,just diagnosed
« Reply #4 on: January 17, 2017, 07:36:37 am »
Hello,
I am a highly functioning physician, just recently find out why I am so dizzy and tired.  I have 4.7 right AN.  No wonder inversions with yoga and running/skiing are impossible. I overnighted MRI to House clinic, waiting on their  call.   How long it takes them  to call after that?  I am ready to fly from Detroit to LA, have that out.  Really have my mind on House clinic, hope they take large ones like mine. /Any experience with House clinic with large AN?

They get back to you pretty much right away. That is a very large AN. Sorry to hear about your diagnosis doc, but welcome to the club. Besides the dizziness and hard time yoga, running and skiing, what other symptoms did you experience? For me I woke up with sudden hearing loss and tinnitus.

I think you're making the right choice with HEI considering they are the most experience and crank out about 3,000 of these a year (can't remember exact number). Also, some people with larger tumors, especially in your size some of the doctors in other cities/states don't always take out the biggest portion, thus causing regrowth. There is no doubt in my mind that HEI is the place for you. I was going to have mine done there, but due to budget constraints I couldn't. Luckily the doc who is taking mine out studied and worked at HEI for a period of time so they know him and I trust him now.
« Last Edit: January 17, 2017, 07:45:41 am by Willbur »
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

Willbur

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Re: Large AN,just diagnosed
« Reply #5 on: January 17, 2017, 07:38:44 am »
I was recently diagnosed here in Montana with an AN, only 1.6 cm, but my brother-in-law is an MD in MI, and his son had a glomas jugular successfully operated on at House Clinic, so he insisted I get in touch with House. The day after they received my MRI I heard from Dr. Wilkinson.  I'm scheduled for retrosigmoid surgery with him and Dr. Schwartz on March 1.  I'm sure they will be in touch with you very soon.

Good choice. Dr. Wilkinson was originally going to perform my surgery, but I opted not to do it at HEI because of costs. Also with retrosigmoid the chances of you saving your hearing are still very slim.
« Last Edit: January 17, 2017, 07:42:23 am by Willbur »
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

ccooper

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Re: Large AN,just diagnosed
« Reply #6 on: January 17, 2017, 10:47:12 pm »
House called me back after receiving my MRI within 3 days but I'd called them in advance and said it was urgent. Mine too was very large. I have Lekovic and Luxford. I can't begin to tell you what a pleasure it was to work with Lekovic.
37 yr old female
3.4x3x2.6
Retrosigmoid February 2016 at UC Health
Oops they forgot to tell me tumor was left behind
Doubled in size
Re-do Retrosigmoid at House July 2016
SSD, Facial Paralysis but almost recovered

riabovamd

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Re: Large AN,just diagnosed
« Reply #7 on: January 18, 2017, 05:57:10 pm »

Thank you all for responses and encouragement!  Dr.Schwartz is doing it Tue or Wd, flying to LA Sunday. He sounded great on the phone, saying that cystic portion responsible for the size is just a fluid, the size might be smaller... Will keep you posted, next step is safe flight! I will ask you about eye later, but it is dry and red.  I am putting tears, no blink.  Anyways, will keep you posted!

Willbur

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Re: Large AN,just diagnosed
« Reply #8 on: January 19, 2017, 11:40:35 am »

Thank you all for responses and encouragement!  Dr.Schwartz is doing it Tue or Wd, flying to LA Sunday. He sounded great on the phone, saying that cystic portion responsible for the size is just a fluid, the size might be smaller... Will keep you posted, next step is safe flight! I will ask you about eye later, but it is dry and red.  I am putting tears, no blink.  Anyways, will keep you posted!

Good to hear. Stay strong you will get through this.
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

riabovamd

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Re: Large AN,just diagnosed
« Reply #9 on: February 05, 2017, 04:56:46 pm »
All done! Experience of a lifetime- coming back from dark place to light. Amazing! The team of doctors and  nurses is excellent, they have protocols they work by, nothing gets missed.  Dr. Schwartz has all the dexterity for intricate details of the fine network of humane brain. DICU after surgery is a lalaland, with anesthesia wearing out and brain fog.  2nd day on the floor is your reserve, - walk with therapy, move.  My biggest setback was eating and smell of food.  Have your family bring your own.  Seton hall is perfect for recovery, and very safe- stay there.
We flew home 10 d after surgery, while I promised  myself to take it easy, I am going to work Monday. I have my energy, by inspirations and my life back.  If you have a choice- Hoiuse clinic is the only choice!

ANSydney

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Re: Large AN,just diagnosed
« Reply #10 on: February 05, 2017, 05:29:20 pm »
Congratulations riabovamd, it sounds like everything was a success. And for a large tumor. Another feather in Dr Schwartz's cap.

How did your hearing get affected?

sharonov

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Re: Large AN,just diagnosed
« Reply #11 on: February 05, 2017, 06:34:18 pm »
I'm happy for you, Ribovand!  Wonderful that you have your energy back and are ready to go to work already.  I'm also curious about your hearing.  Mine was pretty shot before the surgery, but I still have a little left.  If I HAD to, I could follow a phone conversation in my right ear.  Barely. 

riabovamd

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Re: Large AN,just diagnosed
« Reply #12 on: February 05, 2017, 09:19:19 pm »
Thank you everybody~I had translab r. side, no hearing there, left ear compensated for a long time, so there is no difference comparing to prior to surgery.  Life is good.  Making summer vacation plans.....

Patti

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Re: Large AN,just diagnosed
« Reply #13 on: February 06, 2017, 09:55:17 am »
so happy to hear this!
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015