Author Topic: Long time no talk  (Read 3319 times)

jamie

  • Sr. Member
  • ****
  • Posts: 300
Long time no talk
« on: January 15, 2009, 12:18:39 pm »
Hello everybody. It's been a very long time since I've posted, for a while I couldn't remember my password, lol. I had CK a while back for a 2.3 cm cranial nerve schwannoma (lower nerve than AN), I honestly don't even remember the date, it was a little while before phyl had hers (still a mod here?). I had a couple follow up MRI's over a couple years, which showed the death of the tumor, but I feel kinda ashamed I stopped having follow ups. :(  Main problem was my insurance is an HRA, and we have a certain bank alotted us every year, but MRI's are so expensive, I didn't have money for my sons dr. appointments for his asthma and all. Have to cut spending where I can, and frankly, over a thousand a year is just too much, my body let me know when it gave me earaches and when it was nuked, the earaches disappeared. Anyway, I'm at work and can't stay long, life's been busy and I just wanted to say hi to everybody here. I feel great and have no symptoms whatsoever, the CyberKnife is an awesome machine for anybody considering their options. I am also glad to see so much more support and interest for endoscopic procedures. Looks like there's even a new endo facility at St. Lukes.

Wishing everybody the best!

Jamie (yes, i'm alive) ;)
CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: Long time no talk
« Reply #1 on: January 15, 2009, 03:43:09 pm »
Hi, Jamie:

Thanks for the update and taking the time to drop by, as it were.  I'm pleased to learn you're doing well and that CK was successful for you.  Endoscopic may be the 'new wave' for AN surgery.  It certainly sounds promising.  Had it been available when I had my surgery - which was very successful - I probably would have opted for it. 

Try to do your follow-up when it becomes financially possible and please don't apologize for having a life apart from your acoustic neuroma.  You're a healthy, busy dad and are getting on with your life.  Kudos to you!  :)

Jim
« Last Edit: January 27, 2009, 03:22:03 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7449
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Long time no talk
« Reply #2 on: January 15, 2009, 03:58:52 pm »
Jamie! OMG! Great to see you! Yeah, I'm still here and still a Mod (go figure, eh?)  thrilled to hear from you and see you posting and hear that you are doing well!  Wishing you a VERY happy, HEALTHY new year... and don't be such a stranger! You have much to offer to newbies here and when you can, come back to say hi, ok?

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

jamie

  • Sr. Member
  • ****
  • Posts: 300
Re: Long time no talk
« Reply #3 on: January 21, 2009, 01:20:33 pm »
You're a healthy, busy mom and are getting on with your life.  Kudos to you!  :)

Thanks Jim. I'm actually a dad, darned unisex name, lol. Also, mine wasn't an AN, it was lower and didnt cause any symptoms except ear pain and headaches, and a stuffy feeling in my ear...all disappeared completely within 2 years folowing CK. :)

Hello Phyl. :)

I will definitely drop in more, I just feel like a bad example because I dropped out of follow ups. Like I said, all my symptoms disappeared, and when you're insurance sucks like mine (which is ironic because i work for them), it's hard to justify trying to come up with that money out of pocket. I do plan to get an MRI in the future sometime, when I have the money to put towards it, for the sake of science and my own curiosity...but in all reality and being totally honest, MRI's in my view are not part of the actual treatment. My doctor (Dr. Kresl) is great, but the medical community in general makes money off of us from the start, WHY do WE have to pay for lifetime follow ups after they got $30,000 for 3 hours with a robot? If they are interested in watching the progress for their studies, we the patients shouldn't have to carry the cost to use their equipment. I'm ranting a bit, but after the way we've seen those who we trusted and thought had our best interests in mind do business, and the way they continue to treat us little people these past couple years, I believe it's in my best interest to listen to my body over anybody else. It let me know when something was wrong, and it has been treating me wonderfully since I fixed it. But that's my personal decision, I don't suggest anybody else follow in my footsteps.

Talk to ya all later  :)
CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: Long time no talk
« Reply #4 on: January 21, 2009, 04:15:58 pm »
Thanks Jim. I'm actually a dad, darned unisex name, lol. Also, mine wasn't an AN, it was lower and didn't cause any symptoms except ear pain and headaches, and a stuffy feeling in my ear...all disappeared completely within 2 years folowing CK. :)

Oops, I forgot.   :-[

My comments - with the gender corrected - still apply.  Thanks for the correction.  :)  Sorry about your insurance hassles.  Following your gut is usually a sound idea.  I wish you well.

Jim




4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7449
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Long time no talk
« Reply #5 on: January 22, 2009, 06:42:53 am »
Hello Phyl. :)

I will definitely drop in more, I just feel like a bad example because I dropped out of follow ups. Like I said, all my symptoms disappeared, and when you're insurance sucks like mine (which is ironic because i work for them), it's hard to justify trying to come up with that money out of pocket. I do plan to get an MRI in the future sometime, when I have the money to put towards it, for the sake of science and my own curiosity...but in all reality and being totally honest, MRI's in my view are not part of the actual treatment. My doctor (Dr. Kresl) is great, but the medical community in general makes money off of us from the start, WHY do WE have to pay for lifetime follow ups after they got $30,000 for 3 hours with a robot? If they are interested in watching the progress for their studies, we the patients shouldn't have to carry the cost to use their equipment. I'm ranting a bit, but after the way we've seen those who we trusted and thought had our best interests in mind do business, and the way they continue to treat us little people these past couple years, I believe it's in my best interest to listen to my body over anybody else. It let me know when something was wrong, and it has been treating me wonderfully since I fixed it. But that's my personal decision, I don't suggest anybody else follow in my footsteps.

Talk to ya all later  :)

Hey Jamie,

Oy.... such issues! I know, from a AN and treatment standpoint, you have been in great hands down at BNI.  As for the MRI's and insurance woes.... I wish I had more to offer BUT.... did you check the "insurance" forum here (or do a "Search" option) for it?  I know others have combated and won (on appeal) with insurance agencies.... just a thought.

You can see that many are posting with interest about radio-treatments and CK interest. Your perspective is appreciated for those new here that need folks like you to help the cause... just as you did with me :)  Great to see/hear from you!

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

jamie

  • Sr. Member
  • ****
  • Posts: 300
Re: Long time no talk
« Reply #6 on: January 27, 2009, 12:51:07 pm »
Hi phyl, it's not so much that they won't cover it so appeals wouldn't help in my situation...i work for the health insurance company and we have an HSA (health savings account) plan, i don't pay anything, and they give me $1000 in my account to spend every year on medical expenses. Well visits and such are free, but after the $1000 they give me, i have to pay a $2300 deductable for the year and everything after that is of course covered, prescriptions are included in that $1000 bank and deductable. Since it's free, it's great for somebody who doesn't use it much, it covers catastrophic situations nicely. The problem is, the MRI cost puts me in that $2300 deductable zone immediately, and that's no good with a child on the plan as well. Any expenses my son racks up are out of my pocket til the $2300 is met. I'll get in to see Dr. Kresl one day, he's really cool and I want him to know I'm doing so well and that i've had dental treatments that were far more traumatic than CK. I feel out of place sometimes because the whole experience really had no lasting impact on my life at all, other than the memory of the crazy robot. I've gone several months at a time without even remembering having had the tumor, and I had to remind myself not to be one of those who disappear, so the great outcomes aren't reported as much as they need to be. I am so glad more folks are taking interest in CK and endoscopic surgeries.
CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7449
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Long time no talk
« Reply #7 on: January 27, 2009, 04:18:23 pm »
Ok, Jamie.. since you work for the industry and they are allowing certain perks (that would be great for an overall, healthy person, but when we have to endure extended insurance aid... go figure, eh?).  I know of someone that works for an insurance company locally and basically have some of the perks as well.. granted, he is much healthier than me... for me, I'd never last on that kind of situation.   robbing a bank is out of the question....   but, we know you need the MRI... can you work a payment plan with the MRI facility? Esp. in today's economic climate, they may be willing to work off monthly pmt plans, if you can swing it.. .just a thought. I know of some that have done that with hospital bills, etc.

But, to hear that time and life just marches on for you post AN treatment... I'm just thrilled for you! I know of many (think of shoegirl, etc) that also do the same...  I contact them from time to time to see how life is treating them.. and like you, they are just marching along... I think that is great!  But, need you here as well... you have SO much to offer newbies here... don't be such a stranger, ok?  OK? :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

jamie

  • Sr. Member
  • ****
  • Posts: 300
Re: Long time no talk
« Reply #8 on: January 28, 2009, 12:37:56 pm »
But, need you here as well... you have SO much to offer newbies here... don't be such a stranger, ok?  OK? :)

Don't worry, I'll check in more. Also, I'd be happy to answer any questions anybody may have. :)
CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma