Author Topic: A place to vent  (Read 63930 times)

Catflower

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Re: A place to vent
« Reply #30 on: May 29, 2007, 06:07:01 am »
I had microsurgery.

ppearl214

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Re: A place to vent
« Reply #31 on: May 29, 2007, 06:08:14 am »
Thanks Catflower


So, Microsurgery:
Catflower


Others? What procedures (microsurgery vs. radiotreatment) did you have?  I'm just curious if the frustrations noted here are more microsurgery or other treatments and if so, this sends a clear message to treating surgeons of issues and emotions they need to be aware....


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

Dealy

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Re: A place to vent
« Reply #32 on: May 29, 2007, 07:02:59 am »
I had radiation. I believe that venting can be a postive conduit to healthy mental health. Why. Simply becomes as human beings we need to release our anxiety and concerns knowing that not one person on this site can change your physical condition but then can change your mental stability. You relate with people who have the same thing. I thought this was one reason for this site.If we intend to sugar coat everything for newbies then we are  fooling ourselves and them.Life is not a bed of roses. Some come through with flying colors in AN surgery or radiation or microsurgery while other's have complications. We all have a right to feel down as Gary says. If we have too resort to playing footsie on the site-that we might offend someone because we are venting-well to tell you the truth I would rather resort too correspondence then with people on an individual basis. The Cyberknife site is more depressing than this one will ever be. I said by spiel-that's how I feel. Thanks-Ron.

Ellenmn

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Re: A place to vent
« Reply #33 on: May 29, 2007, 08:01:30 am »
As I stated in my vent I had radiation 4 yrs ago and will be having Translab on June 28th.

ppearl214

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Re: A place to vent
« Reply #34 on: May 29, 2007, 08:20:53 am »
As I stated in my vent I had radiation 4 yrs ago and will be having Translab on June 28th.

ellen, based on your post history, I am assuming you had GammaKnife (single dose with metal headframe)?

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

Mark

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Re: A place to vent
« Reply #35 on: May 29, 2007, 08:55:10 am »
Ron,

The Cyberknife site is more depressing than this one will ever be

Help me understand this comment. If you're referring to the CPSG site, it is designed to allow potential patients the ability to ask questions of doctors primarily and there is no where near the amount of patient interaction as on this one. I'm very supportive about your comments regarding venting, but the CPSG site does not have the dedicated community size of this one to expect it to have that capacity, if that's your expectation of it.

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Captain Deb

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Re: A place to vent
« Reply #36 on: May 29, 2007, 11:21:05 am »
I actually had my wonderful grandsons (aged 18 months and 4--both born after my surgery) here for  4 DAYS and guess what? NO SCREAMING BRAINWRECK MIGRAINE!!!!!  That's the first time that's EVER happened--thanks to 2 great docs and $250 worth of prescription meds a month!  Of course I passed out cold for 4 hours after they left, but no screaming headache. Big Progress for me.

Capt Deb 8) 

"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
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Chronic post-op headaches
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flier58

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Re: A place to vent
« Reply #37 on: May 29, 2007, 01:15:43 pm »
Hi Ron,
Like Mark I am wondering what made you feel so negative about cyberknife site.  I am a CK patient (very happy for time being as my 6 mos MRI shows no growth and a bit of necrosis-dark spot) and the site was extermely helpful in making my decision.  I did not find it any more or less depressing than this site even though it deals also with much more severe illnesses than AN.  And I actually love the humor that docs on that board  share with us.  Just wondering?!
Flier58

Captain Deb

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Re: A place to vent
« Reply #38 on: May 29, 2007, 01:59:26 pm »
By the way folks, there be a BIG difference between venting and ranting--I find no ranting here, just folks who need to 'splain stuff that their loved ones can't comprehend, to other AN survivors .

Vent on!

Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Dealy

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Re: A place to vent
« Reply #39 on: May 29, 2007, 03:19:52 pm »
Capn Deb hit the nail on the head-venting is not ranting. The CK site deals with cancer and issues that can be life threating.  I realize so can an AN-If you are speaking about only information that it serves it purpose. However I fail to conclude as some people can defer by people on this site venting that it inself becomes depressing-I cannot conclude the connection. The CK gives info and input from very knowledgeable doctors. I understand someone supporting CK if that is what you had. If I had been on the group before I had FSR I may have gone that route myself because Oklahoma City is only 6 hours from where I live versus Baltimore where I went for FSR. We have multiple medical situations on the CK site while here-we are only confined to people with AN's etc. When I was getting my treatment in Baltimore I was on the same ward on oncology where people were receiving treatment for various forms of cancer. My AN paled in their situation. Spend 6 weeks in that enviroment and yes-seeing people all day in this situation gets you down-can be depressing. That in itself is not a negative statement-I was just referring how someone on this site can call venting depressing. It is fine too feel positive thoughts-I am all for that-but I realize that some people on this group have some serious issues they are dealing with-I for one am glad too hear them vent and express themselves. As I said earlier-I nor you can change one iota of their physical being or condition-however support and lending an  ear is sometimes all we need. Please do not take my comment as being critical of CK or the Cyberknife group. Someone said earlier-walk a mile in my shoes before making a judgement. ThanKs-Ron

Gennysmom

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Re: A place to vent
« Reply #40 on: May 29, 2007, 03:38:46 pm »
Ya know guys, we had a huge issue in our office years ago where we were ordered not to complain or to take issues to the person directly rather than "gossip" about them to another employee.  I tried so hard to explain to the boss, and they finally got it, that there is a difference between gossipy complaining and being able to vent frustrations.  Venting is a coping mechanism and done positively can be so helpful in releasing stress....which we all know too well about.  I love most of the comments here!  The other thing that I see from venting is that you can let your true feelings out and receive validation...something that's hard to do in the non-AN world...and validation can be so helpful in that AN treatment and the following symptomology can be so isolating and leaving with you a craving of being "normal".  To me, everyone seems to focus on cancer and the fact that this is non-cancerous, and not to put a label on cancer, but sometimes it makes me feel like I should be feeling my tumor is insignificant.  Well, as far as I'm concerned, brain surgery is brain surgery, whether it's for a TBI, cancer, AN, whatever it may be.  The need to vent is really the need to feel normal and not unlike everyone else...and to receive validation that your thoughts are set in reality. 

So today my vent is this:  it's hard enough that surgery sucks all of the energy out of you, but life goes on and you get other viruses or injuries that just seem to add insult to injury.  I already feel like my life is all work and no play just to pay the bills these days, but now that I've pulled a muscle in my back near my herneated disc....any extra energy I may have had to enjoy life has been sucked dry.  Luckily I'm a tough old bird and will get through this, but today it's bugging the crap out of me.

So a big kudo to everyone who is surviving and thriving...vent on your tough days and lend support when you have the extra energy to do so.  And lean on a good shoulder when you don't have the strength to do either....there's lots of shoulders here. Time heals all wounds, including AN's.
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

Mark

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Re: A place to vent
« Reply #41 on: May 29, 2007, 04:11:10 pm »
Ron,


Thanks for the clarification on your previous CK board comments. I certainly wasn't taking anything personally, just was confused by the statement without any defined context. I would absolutely agree with your perspective that given the much more serious conditions and afflictions that people are looking for CK to help them with on that site, it can be very depressing to read those stories. Having an AN is very serious to all of us who have one, but it does pale in comparison with what others face. That site does have to accomodate a wide range whereas this one is has a much tighter focus. So, I think your comment is very fair based on what I see your point was in the last post.

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Ellenmn

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Re: A place to vent
« Reply #42 on: May 29, 2007, 06:27:04 pm »
As I stated in my vent I had radiation 4 yrs ago and will be having Translab on June 28th.

ellen, based on your post history, I am assuming you had GammaKnife (single dose with metal headframe)?

Phyl

That is correct

GM

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Re: A place to vent
« Reply #43 on: May 29, 2007, 06:32:59 pm »
I am a radiation patient....(see post script under this post)...

Gary
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

lori78

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Re: A place to vent
« Reply #44 on: May 29, 2007, 06:53:23 pm »
Oh wait, we are venting?!?!  Sign me up!!

I'm tired of being tired.  Of feeling like a child under parents' care after two near-engagements to men.  ONE of those ending because after my 2nd surg I became "too difficult" and "much worse than before".  I'm tired of constantly feeling like my job is in jeopardy.  Of drivin ten miles under the speed limit w cars honkin at me.  And mostly, I'm tired of being misunderstood. There!  'Nufff said!  Pity Party over, for tonight, anyway...
Lori, Left AN,  2 translab surgeries and GK radiation, 3.5 cm x 3.5 cm, Dr. Singh Sahni and Drs Fred and Wayne Schia, Chippenham Johnston-Willis, Richmond, VA. Deaf in left, temp paralysis post surg 1/07

 


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