Author Topic: CT Resident confirmed with AN  (Read 3191 times)

vharipra

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CT Resident confirmed with AN
« on: July 28, 2016, 01:38:02 pm »
Hello,

I am 37 years old IT professional, from CT, married with no kids.

I have been facing some blocking in ear for last year or so, went to PCP and then to ENT (2 doctors), and finally was advised to take MRI few weeks ago.

Got the results yesterday, and as you have rightly guessed it...I do have an AN of around 2.6 cm size (the exact size I am yet to get it, as I do not have the MRI results). My ENT doctor yesterday had advised strongly to take surgery due to the size of the AN and also due to the "young" age!! He did assure that it is not an urgent one and I can take some time to decide. Personally, he is not recommending radiation therapy. 

He told that he would ask a neurosurgeon (I forgot his name!.. :(..)  in New Haven Yale Hospital to reach out to me and take it forward.

Few next steps that I am taking:
(1) I am planning to get the results of MRI today in Disc.
(2) Once I get it, I am planning to send it to Dr. Chang of Stanford (as I am seeing great reviews on his consultation/guidance). I am finding his academic email contact (sdchang@stanford.edu). Not sure if that's the right one to reach out to him.
(3) I am from India, so planning to share the results to some Doctors in India to get their opinion as well.

Naturally I and my wife jumped onto internet to know the "world of AN" and came across this wonderful support group.

What we are looking for:

(1) Personally, with the information gone through, I am inclined towards Gamma Knife (or other Radiation Surgery), as the "side-effects" of microsurgery along with "recovery time" turns me off from it. Also, I am not so "against" NOT removing it off altogether, as at this point in time, other than very limited impact of my hearing on left ear, i do not find anything else noticeable at all. But, I also understand the size is high. Seems 2.5 cm is the cut-off for Radiation surgery. Need some assurance from this group, on whether 2.6 cm is Ok for radiation.
(2) I am also looking for guidance on which doctors should I need to reach out for consultancy, given my location in CT - atleast couple of doctors on both sides of the story (Microsurgery and Radiology).
(3) Also, given the limited healthcare facilities in CT, am looking for guidance on where I need to undergo the surgery (whether in MA/NY, or in CA). If it is going to be "microsurgery", I do not have option to go to West, but if it turns to be Radio Surgery, then, I am open to it as well, as my understanding is - Radio Surgery is not something that requires lot of rehabiliation.
(4) Last but not the least, I am unclear on where to start and validate which aspects would be covered by my insurance

Frankly, I have been very glad to have a great life, and after knowing this AN, am trying to have positiveness on the fact that - I am in the world where we have such great technologies out there to help us, and most importantly, such network of people to support. Last but not the least, I strongly believe that everything happens for a reason, and all the times, the reason is for good..which we come to realize either in short term or in long term!!

So, with such note, am looking for guidance and support for this newbie of this group.



vharipra

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Re: CT Resident confirmed with AN
« Reply #1 on: July 28, 2016, 05:43:23 pm »
Just got the MRI result in CD - The AN size is 2.3 X 1.6 X 1.7 cm !!

v357139

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Re: CT Resident confirmed with AN
« Reply #2 on: July 28, 2016, 06:26:44 pm »
Hi vharipra,
Sorry to had to join but welcome.  We'll help you get through.  On radiation, the traditional thought was that around 2.7cm was getting to where you would go for micro.  But that is not hard and fast by any means.  Dr Chang has a great name on CK and ask him what he thinks.  There is also Dr Kondziolka at NYU for Gamma Knife.  He has been doing larger than 2.7cm for a while, as his criteria is less on size than other factors he considers.

For micro, there is Dr Selesnick and Dr Gutin at Sloan Kettering and Dr Roland and Dr Golfinos at NYU are top teams in NYC in my opinion.  I am in NY but I went to House in CA (Slattery/Schwartz) and had an excellent outcome for my 3.5cm.  It's about a 10 day stay there and you don't really rehab that much.  I just walked and rested a lot while I was out there.  For me, traveling out there was not an issue at all.

If you are trying to decide between radiosurgery and microsurgery, it is important to see top doctors in each of those fields.  You will hear differing ideas depending on what they are best at, and it will be up to you to decide which makes the most sense for you.

Please feel free to PM me if you want to talk.  I would be more than happy to.  Let us know how things progress.  We are here to help.
Rich 
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

Bomberman

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Re: CT Resident confirmed with AN
« Reply #3 on: September 05, 2016, 10:01:48 pm »
Hi vharipra,
Sorry to had to join but welcome.  We'll help you get through.  On radiation, the traditional thought was that around 2.7cm was getting to where you would go for micro.  But that is not hard and fast by any means.  Dr Chang has a great name on CK and ask him what he thinks.  There is also Dr Kondziolka at NYU for Gamma Knife.  He has been doing larger than 2.7cm for a while, as his criteria is less on size than other factors he considers.

For micro, there is Dr Selesnick and Dr Gutin at Sloan Kettering and Dr Roland and Dr Golfinos at NYU are top teams in NYC in my opinion.  I am in NY but I went to House in CA (Slattery/Schwartz) and had an excellent outcome for my 3.5cm.  It's about a 10 day stay there and you don't really rehab that much.  I just walked and rested a lot while I was out there.  For me, traveling out there was not an issue at all.

If you are trying to decide between radiosurgery and microsurgery, it is important to see top doctors in each of those fields.  You will hear differing ideas depending on what they are best at, and it will be up to you to decide which makes the most sense for you.

Please feel free to PM me if you want to talk.  I would be more than happy to.  Let us know how things progress.  We are here to help.
Rich

Hi Rich, thank you for your advice. I want to ask, how does Dr. Sisti of NY Presbyterian compare with Dr Selesnick and Dr Gutin Dr Roland and Dr Golfinos? What made you decide to go to House in CA instead of getting care at NY? Have you heard of Dr. Timothy Chan at Sloan for radiosurgery? For the doctors you mentioned, including Dr. Chang and Dr Kondziolka, how did you determine that they were the best in the field? Thank you.

SP

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Re: CT Resident confirmed with AN
« Reply #4 on: September 07, 2016, 03:28:30 am »
It's great that you are keeping a positive mindset after your AN diagnosis - I definitely was not so positive in the early days (better now :)) ... you're in the right place, this forum has a wealth of informed people on it , I am very grateful to have found it.

In terms of treating AN - I completed CK 12 months ago at Stanford for my tumor which was 3.2cm in its largest diameter, - yep its a big one! Dr Chang advises on both radiation options as well as surgery, (he performs both), depending on each individual case. He made initial recommendations for me based on the MRI images CD I posted to him (I had them done locally in Sydney). Of course his final recommendation is dependent on an in-person consultation and I believe its definitely worth exploring as an option.

When I was doing my research, Stanford was leading in terms of the number of AN's they treat per year and Dr Chang was confident of a successful outcome in my case (although as always nothing is guaranteed) - so far so good!

PS yes he usually responds (at all hours) to that email address.

Stella
2.9 x 2.9 x 2.5cm Left AN (May 2020) @5yrs
2.9 cm (Mar 2019) @4yrs
2.9 cm (Aug 2018) @3yrs
3.1 cm (Aug 2017) @2yrs
3.2 cm (Aug 2016) @1yr
3.2 x 3.0 x 2.5cm Left AN (Aug 2015) ===> CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

v357139

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Re: CT Resident confirmed with AN
« Reply #5 on: September 09, 2016, 06:44:41 pm »
Hi vharipra,
Sorry to had to join but welcome.  We'll help you get through.  On radiation, the traditional thought was that around 2.7cm was getting to where you would go for micro.  But that is not hard and fast by any means.  Dr Chang has a great name on CK and ask him what he thinks.  There is also Dr Kondziolka at NYU for Gamma Knife.  He has been doing larger than 2.7cm for a while, as his criteria is less on size than other factors he considers.

For micro, there is Dr Selesnick and Dr Gutin at Sloan Kettering and Dr Roland and Dr Golfinos at NYU are top teams in NYC in my opinion.  I am in NY but I went to House in CA (Slattery/Schwartz) and had an excellent outcome for my 3.5cm.  It's about a 10 day stay there and you don't really rehab that much.  I just walked and rested a lot while I was out there.  For me, traveling out there was not an issue at all.

If you are trying to decide between radiosurgery and microsurgery, it is important to see top doctors in each of those fields.  You will hear differing ideas depending on what they are best at, and it will be up to you to decide which makes the most sense for you.

Please feel free to PM me if you want to talk.  I would be more than happy to.  Let us know how things progress.  We are here to help.
Rich

Hi Rich, thank you for your advice. I want to ask, how does Dr. Sisti of NY Presbyterian compare with Dr Selesnick and Dr Gutin Dr Roland and Dr Golfinos? What made you decide to go to House in CA instead of getting care at NY? Have you heard of Dr. Timothy Chan at Sloan for radiosurgery? For the doctors you mentioned, including Dr. Chang and Dr Kondziolka, how did you determine that they were the best in the field? Thank you.

Bomber,
Most of what I know about Dr Chang and Dr Kondziolka has been from this site.  Lots of satisfied customers.  I have not heard of Chan at Sloan.  But if I was interested in Gamma Knife, I would certainly talk to Kondziolka.  Regarding going out to CA, I did lots of research and I thought they were better, in my opinion.  House also proposed translab, and that's what I wanted.
Rich
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!