Author Topic: "Success Statisitics"  (Read 9750 times)

CF

  • New Member
  • *
  • Posts: 40
Re: "Success Statisitics"
« Reply #15 on: December 18, 2009, 03:20:58 pm »
Good point Pooter. Well, it's all theoretical to me, even when I stare at the MRI  ???

The only real facts I can relate to are that I feel significant "instability", and I now have to do a double take every time I move, to keep my balance. I have asked others if they see any noticeable things in my stride, and one guy said only if he looks for it.

Inside, I know that there's an increase from when this first became a daily phenomenon in August. I actually reroofed my shed back then (climbed up and down a ladder on top of a backyard shed) for a day and a half, pausing at the top to regroup. I've continued to exercise since then (lifelong habit), 3-5 times a week, jumping rope, doing burpees (jumping squat thrusts), lifting weights overhead, etc. I've pushed through the imbalance. In the last month or 2 (or 3), I "feel" the imbalance has increased more. I feel it now sitting down, right now as I type. I remember the first day I felt it "while driving" .... it scared me. Today I feel more "comfortable" with my elbows on the desk .... it's more stable. And I'm pretty tired by the end of the night ..... I feel my brain is working overtime to compensate. And for the first week in years that I can remember, I haven't worked out for 4 consecutive days because of feeling "tired". Laying down is much more rewarding NOW than exercising later at night .... oh and FORGET about exercising in the morning. And lastly, picking up toys on the floor to put in the toy box is now an aversion (Ok it always was but now it;'s more  ;D), and this morning I had to put the garbage out with lots of card board boxes to "cut up" that I in the past would have somewhat enjoyed ..... burden.

So maybe it's not fast growing, or that's not a good term that is medically accurate. But whatever this doctor meant to say, I can correlate it to my internal experiences that this is increasing without let up ..... I haven't had a self rated "low" instability day for the last 2 weeks.

Of course, I could be imagining all of this ..... that's what I thought over a year ago, and it wasn't until I got my MRI 3 weeks ago that people in my life took me seriously. I would love to have a 2nd MRI to substantiate and support and back up my internal, self-assessment .... really I would. The doctor's language was music to my ears - he "understood" what I was feeling. But in the end it, it would not influence my quality of life now in anyway whatsoever. It might make me try to get my surgery sooner / later (if fast growth was medically ascertained / debunked), but it won't help me now, and I'm a little worried that administrative hospital/insurance buearucracy will slow me down while the "progressive" bugger seems to be getting the best of me.

Right now the ball is in someone else's court as I await to see a 2nd / 3rd radiation doctor for consultation .... get a cat scan , then schedule my treatment. No worries here, I know I need P-A-T-I-E-N-C-E .... (and some more physical stability - wish they sold this in a pill ......  :P).

Pooter

  • Hero Member
  • *****
  • Posts: 1291
  • The Official Breeze Conjurer - PBW
    • Blog Website
Re: "Success Statisitics"
« Reply #16 on: December 18, 2009, 04:34:10 pm »
CF,

Understood.  All fair.  I would just be remiss if I didn't point out that acting on misinformation from a doctor is not necessarily going to do well for you.  Keeping all of the information in mind while you research and come to a conclusion is perfectly normal and okay.  If you're making a hasty decision for surgery because one doctor told you that the tumor was "fast growing" when there's no way he could know that is one thing, but acting quickly after doing significant research, consults, etc is a total different ballgame. 

As others have pointed out, I don't think there are significant differences in chances for certain "outcomes" with surgery over radiation (or radiation over surgery).  If you're thinking that you're going to escape the possibility of (for example) facial weakness with radiation over surgery or vice versa, I think you're wrong.  I don't know if one is favored for relieving the obviuosly debilitating balance issues that you've experience.  I personally think that whatever treatment choice YOU feel comfortable with is going to be okay.  Be that surgery or be that radiation..  They both carry inherent risks.

Good luck on your choice.. Let us know what the radiation doctors say..

Regards,

Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

Larry

  • Hero Member
  • *****
  • Posts: 1462
  • Scallywags Rule
    • Chronologer of the PBW
Re: "Success Statisitics"
« Reply #17 on: December 20, 2009, 07:49:43 pm »
Althougjh this is CF's thread, I need to respond to Gheiner27's response regarding radiation treatment. Whilst I feel sorry for your father, that radiation treatment is very very different to either gamma or cyberknife. marianna got it right on the button.

radiation treatment, like surgery is dependant on the technician or surgeon. Radiation pin points the tumor and doesn't touch anything else. The last stats I remember reading are.

Surgery - Mortality rate is 1 in 500. That is, 1 death in every 500 operations. thats all ops so be careful with that stat.
radiation - AN Tumor turning malignant is 1 in 10,000.

Anyway, i am biased towards rADIATION because of my own personal history.


LAZ
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Was in watch and wait mode until Dec 2008 now must do something.
Chronologer of the PBW
http://www.frappr.com/laz

CF

  • New Member
  • *
  • Posts: 40
Re: "Success Statisitics"
« Reply #18 on: December 21, 2009, 09:54:38 am »
Hey, I think I just may have found a "pro radiation" website. Has "surveys", case studies, although some data may be dated. Nonetheless I am getting the sense they are strongly in favor of radiation, I'm looking to see if their arguments have any specific application to my situation.

Some interesting quotes:

http://www.acousticneuroma.neurosurgery.pitt.edu/index.html
Quote
Acoustic neuroma patients have several options available to them. Large tumors with significant brainstem compression usually require surgical resection. For patients with small or medium sized tumors, radiosurgery has become a common treatment with excellent long-term results reported.

Acoustic neuroma patients must be comfortable with the concept of tumor control rather than tumor removal. Most seem to be satisfied with this concept, if it allows them to avoid brain surgery.

What treatment would a surgeon choose for him/herself?
http://www.acousticneuroma.neurosurgery.pitt.edu/docsurvey.html
Quote
A Survey of Neurosurgeons' Preferences

Radiosurgery, Resection, Fractionated or Observation?

A survey was mailed to members of the Congress of Neurological Surgeons in July 2002. Six hundred sixty-three surgeons responded to the survey (30%). The survey was mailed with four questions written on one page. Forty one percent of responders were between the ages of 40 and 50. Eighty percent of neurosurgeons surveyed had either performed radiosurgery on a patient with an acoustic neuroma or had referred a patient for neurosurgery

This one caught my eye, of course  ;)
http://www.acousticneuroma.neurosurgery.pitt.edu/tinnitus.html
Quote
...Overall, the results of either surgical resection or radiosurgery have been equal for improving tinnitus or imbalance in patients with acoustic tumors.


CF

  • New Member
  • *
  • Posts: 40
Re: "Success Statisitics"
« Reply #20 on: December 21, 2009, 11:20:57 am »
Thanks Mark!!!

Hey I just posted in another forum here. Below is the post, here's the link to the post: http://anausa.org/forum/index.php?topic=10939.msg131430#new

Congratulations, Lyn! You and your story are a hope and inspiration for me.

Hey I just checked out your blog and low and behold your doctor also quoted you a 95% chance of facial nerve preservation. That's consistent with my doctors "stats".

And that fact you are hear, posting your story just a few days after your surgery.

Wow.

http://lynettewp.blogspot.com/search?updated-max=2009-11-09T11%3A10%3A00-08%3A00&max-results=7

Quote
Odds of facial nerve preservation: 95% He says this can sometimes depend on factors outside of his control (my anatomy, swelling after the surgery, etc) but he has a very good record in this area.

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10820
  • I am a success story!
Re: "Success Statisitics"
« Reply #21 on: December 21, 2009, 10:52:16 pm »
CF -

thought this might be of interest to you http://www.keepingyouwell.com/News/NewsArticle/tabid/191/ItemID/3304/srcmid/71292/Default.aspx

Dr. Robert Battista is one half of the team of docs that removed my AN in May 2007.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

EJTampa

  • Hero Member
  • *****
  • Posts: 604
  • Rays Vs Red Sox Game 2 ALCS (Isabel and Ernie)
Re: "Success Statisitics"
« Reply #22 on: December 30, 2009, 02:45:08 am »
Hi CF,
 
I see this thread is about 9 days old now, but what the heck.  I am pretty sure that if you have significant balance issues going into treatment, your best bet is microsurgery.  There is a message http://anausa.org/forum/index.php?topic=9138.msg101750#msg101750 from our very own Steve about the risk of continued balance issues after radiosurgery IF you are having those issues pre-treatment.  It makes sense really.  My doctor (surgeon, I admit) told me that since my vestibular nerve was not completely compromised yet, there was a greater chance that I would have imbalance issues after radiation than with surgery.  With surgery, the brain will compensate to losing the nerve.  After radiosurgery, you may continue to have a "malfunctioning" vestibular nerve.
 
That said, I know there have been those here that did have just that issue.  If I remember right, there was a treatment option for them which involved killing the nerve with injections, so even if you did choose radiosurgery and had balance issues, it can be rectified.
 
Although certainly not typical, I was out of the hospital the day after surgery :).  I had surgery the morning of March 5th and was home in my recliner on the evening of March 6th.  I had significant "light-headedness" issues for 4 or 5 weeks after surgery, but I hardly notice it now (almost 10 months later).  I still have some light-headedness when I move my head quickly up and down, or when I'm jostled and my brain doesn't know which way I'm going to be moving next.  I suppose that's common for everyone, regardless of treatment, assuming their vestibular nerve was impacted :).
 
Ernie
 
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

 


anything