Author Topic: Reactions to AN  (Read 9386 times)

Ruthie Mac

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Re: Reactions to AN
« Reply #15 on: June 10, 2014, 11:30:30 am »
While at first it seems like the treatment decision reduces down to surgery vs. radiation, there seem to be a number of people who have had to have both in some combination over time. Unfortunately there is no 'quick fix' but, fortunately, there are  many successful outcomes from the respective choices.

I now look at surgery and radiation as two different tools to ultimately accomplish the same goal, with the choices along the way being completely unique to each person's situation: age, size & location of tumor, symptoms, lifestyle, occupation, insurance, etc
knowing the reality exists that you may need the other at some point.
 
Which is why I think it's imperative that we stay well educated on all the different surgery and radiation procedures. It was overwhelming to me at first. I had to buy a bigger briefcase for my notes from all the different doctors with file folders on each category. We nicknamed it the 'football' with all it's classified information!

But the most important part of the decision process for me was to connect with a team of doctors who really understood me, and respected the research I had done, supported my decision and could provide the most professional, state of the art expertise and equipment. And I didn't feel that way with some of even the 'top' doctors in Boston.
I went for radiation at a smaller hospital in Massachusetts with a Doctor I really connected with, and I'm at peace with my decision...Finding peace through this whole ordeal is an ongoing challenge but certainly enlightening on many levels.
My prayers are with you and your wife during this hard time...
Ruthie
 
4/1/2013  1 cm x 1.6 cm left ear
11/1/2013 SRS Varian Trilogy UMass Medical (4 sessions)
hearing is still good, slight tinnitus, working on balance issues

lorigasper

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Re: Reactions to AN
« Reply #16 on: June 11, 2014, 01:45:42 pm »
I just thought I'd weigh in and try to offer some encouragement.  I know this news must be still rocking your world, but I hope soon that you'll find a medical team with whom you feel comfortable and supported so that you can get on with taking care of this tumor.

For me, a local team of doctors has been a blessing.  My tumor was good sized, 4 cm, and pressing on the brain stem.  Because it was 1/2 cystic, surgery was really my only choice.  Being able to come home to rest and recuperate and not have to maintain distant relationships with my team was just so helpful.  Having my surgeon in the loop on after-care issues (and there always seem to be some) is invaluable.  I just had my 1-year checkup and his knowledge, connections and support continue to comfort me.

I pray that you find a team that you can trust in the near future.  Be encouraged that we live in an amazing time.  Years ago, this diagnosis would have been a death sentence.  Today, there are amazing resources for AN patients and their caregivers.  (This site is one of them!)

Know that you are in our prayers.
4cm AN diagnosed 4/13
retrosigmoid 6/13
tarsorraphy 6/13, SSD, rt side facial paralysis
tarsorraphy reversed 7/14
gold weight and scleral lens 7/14
CROS
12/7 nerve graft 12/14

loukan777

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Re: Reactions to AN
« Reply #17 on: June 18, 2014, 01:58:12 pm »
Thanks so much to all of you for your input.  We almost went with our first consult and microsurgery.  Thanks to you on the forums and the ANA site, we began contacting several doctors.  As a result, we have decided to go with radio-surgery, most likely at UPMC Pittsburgh.

What last minute questions should I be asking?  We plan to have a phone conference with either the doctor or an assistant tomorrow, Thursday, 6/19.

What should we do to prepare in the next few weeks?

Any advice would be appreciated.

Thanks.  Loukan777
Wife diagnosed with 2.5X2.5X2.4 cm. AN left side 4/2014
left side hearing loss, tinnitus, balance issues, taste issue, facial numbness
GK at UPMC Pittsburgh - Dr. Lunsford - 7/11/2014

Ruthie Mac

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Re: Reactions to AN
« Reply #18 on: June 19, 2014, 10:28:12 pm »
I would suggest using this time to research the options in the radio-surgery field. The article in this month's AN newsletter by Dr. Chang at Stanford explains the options very well. While he prefers fractionated sterotactic radio surgery (FSR), I think his explanation of the overall field is very informative.

When I was doing my research on what type of radiation to choose, I found it amazing that doctors were willing to talk to me on the phone and share their opinions on the pros & cons of the different types of procedures and why they believed in one over the other, without having an appointment or knowing that I would ever be coming to see them. And while, it can be overwhelming to get so many opinions, the information is out there, so I wouldn't hesitate to make as many calls as possible to the experts in the field - even to places you'd probably not go to, just to see if they're on the same page as the doctors you're working with.

One concern I'd advise with choosing radiation is the plan to treat swelling. It seems that steroids are the stock answer, but they can have complications for many people. I just assumed steroids would be an easy answer without doing much research and ended up finding out I am not a candidate for taking them because of other health issues. So I'm trying natural supplements to reduce the inflammation. But just wanted to warn you, they act like steroids are a magic wand, but that may not be the case for everyone.

Wishing you peace in your decision-making process...
Ruthie
4/1/2013  1 cm x 1.6 cm left ear
11/1/2013 SRS Varian Trilogy UMass Medical (4 sessions)
hearing is still good, slight tinnitus, working on balance issues

loukan777

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Supplements for Swelling
« Reply #19 on: July 07, 2014, 09:12:11 am »
What alternatives are there to steroids for swelling?  Does one use 5-loxin or yarrow leaf or something else?

My wife is going in for GK radio-surgery at UPMC this coming Fri.  We'll find out a lot in the consults and lab work on Thurs.

We are flying out on Wed. and returning on Mon., and I hope the flight will not affect my wife negatively.
Wife diagnosed with 2.5X2.5X2.4 cm. AN left side 4/2014
left side hearing loss, tinnitus, balance issues, taste issue, facial numbness
GK at UPMC Pittsburgh - Dr. Lunsford - 7/11/2014

Ruthie Mac

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Re: Reactions to AN
« Reply #20 on: July 07, 2014, 06:21:23 pm »
 so sorry.... I didn't mean to sound so negative about steroids. They have helped many people. I was just annoyed that my consultations with doctors left me believing they were a quick fix,  then when the Doctor I chose to work with, said none of his patients needed them...of course, made me feel like I'd be a failure if I did... so I was trying to 'tough it out' even though I did show swelling on the 6 month MRI. But then found out through blood work that I have high levels of cortisol, for other reasons, so I'm glad I didn't take them.
I've been working with a nutritionist to try to reduce inflammation naturally...lots of organic greens, fruits (especially pineapple & black cherry), omega 3's and fish oil.
And this is all long term...I had no immediate reaction to the radiation. And some people have no swelling at all.
It sounds like you are in good hands...I wish you only the best through this procedure and a safe journey, with the peace of mind that from here on, the healing can begin.
Ruthie
4/1/2013  1 cm x 1.6 cm left ear
11/1/2013 SRS Varian Trilogy UMass Medical (4 sessions)
hearing is still good, slight tinnitus, working on balance issues

mesafinn

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Re: Reactions to AN
« Reply #21 on: July 08, 2014, 02:22:18 pm »
As a UPMC "alum," I know you will be in good hands.

Let us know how everything went.  Thinking of you both,

Patrick
Oct 2012:  Constant Pulsatile Tinnitus
Feb 28, 2013: Dx AN 1.4 cm X .9 mm
April 19, 2013:  GK at UPMC w/Dr. Lunsford

Some things in my life need to matter less, and other things in my life need to matter more.  So yes, I'm taking this as a "lesson learned experience."

loukan777

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Re: Reactions to AN
« Reply #22 on: July 11, 2014, 10:44:38 am »
My wife had radiosurgery this morning.  Thanks to all for your support, prayers, and encouragement.  I'll post in the post-treatment - radiation forum about the experience.  Loukan777
Wife diagnosed with 2.5X2.5X2.4 cm. AN left side 4/2014
left side hearing loss, tinnitus, balance issues, taste issue, facial numbness
GK at UPMC Pittsburgh - Dr. Lunsford - 7/11/2014

 


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