I should rephrase

[KLane]

I should rephrase, and this requires a new thread. Most, not all, but most of the time I do not post because I have the distinct feeling of being circled by a shark. By this I mean that I feel that everything anyone posts on this forum is being policed by another member who then 9 times out of 10 has to chime in. Now I am not saying there is any ill intent whatsoever, but just that it's kinda weird & I imagine drives some people away. I think it is a problem if other voices, other ideas & information are not heard because people don't want to put up with the verbal fencing necessary. We "leakers" have enough to battle every day.

[dkdreamer1]

i just deleted a post i was writing and then read this. I haven't been posting so much as i am on my own journey and although i have learned a lot and am improving with my current treatment I don't have the energy or desire to defend or misdirect others. My Dr. got a call from a current patient who asked why she wasn't getting the same tests. She also said referrals have come from my initial post on the 20th. I apologized and promised my posting was to explain how She found my leaks and then about direct patching. She understood but i felt a grave responsibility to not project my journey onto anyone else.

I was so happy initially to find here and be a part, but i am not an expert and my circumstances are so different that i can't fit into any article or theory.

For me surgery now would have been devastating, and hopefully not needed. I have had 3 unrelated surgeries during my leak time and healing was slow and hard. The reason being my brain sag was putting so much pressure that not 1 system is functioning normally. But then i felt bad for not speaking up because if treatment was sooner then i wouldn't be wearing a 30 day heart monitor, or 24 hour blood pressure readings. I am in trouble. So i now have a cardiologist, a nuerologist, refered to an endocrinologist, and today added a rhumetologist. My testing done so far shows negative results in all areas. The nuerologist today spent close to 2 hours with me and came in special as he doesn't do clinic. He is very concerned and says i have no ability to regulate anything. As simple as balance. I walked 15 feet and was dripping wet with sweat. My bottom blood pressure number was higher then the normal upper number is. I had a fever and a pulse over 125 and i was doing nothing but waiting in the waiting room.

So without any defenses, for me direct patches are succeeding where unguided ones did not. I am a multi sight leaker and am improving. My body is in flux and pain, with a multitude of tests done and being done to help figure out if mormalacy is possible.

I am sincere in posting this but please understand that we are intricately made and a leak is not just causing a headache in some of us. Because of this i say be proactive in treatment and decide for yourself what is right for you. I prior to going to Duke was flat most of the time since last june. In that time my pressure went from 4 to 10. So even conservative measures can help a long time leaker.

Thanks for listening as i really am a mess and just didn't want anyone else to end up where i am after close to 3 years.

Dawn

[sadlisa]

KLane

I am sorry you feel you are circled by sharks. I have never felt that way with any of my posts. I have only felt the understanding of someone in a similar position as I am.

Dawn,

I am very happy you seem to have found the doctor who can help treat you. I hope and pray that you will continue to improve.

Thia

[Robbysmom5]

KLane -
I know how you feel!! One poster in particular does pop up every now and then and attack. It has happened to me - and to Laura many, many times. I think this is a shame, and to see some others joining this poster is very troubling. Wobbles once said she just decided not to even read this poster's posts ... I feel the same way.

[sis2831]

KLane -
I know how you feel!! One poster in particular does pop up every now and then and attack. It has happened to me - and to Laura many, many times. I think this is a shame, and to see some others joining this poster is very troubling. Wobbles once said she just decided not to even read this poster's posts ... I feel the same way.

AMEN!!! I hope my post did not get taken that I was attacking Laura....my goodness....that is why I HAD to say something....I just did not get where it all started from just reading the posts. And in the last couple weeks, it seems that she has been attacked...and all I can see is she tries SO hard to answer the questions that when you first come to this site, are in desperate need to have some answers! And what pertains to you you take....what does not you leave! But i do not know anyone on this site, that will try to FIND things, articles whatever....that can help you more than she does! Thanks, Laura, and to all others that have helped me understand this leak nightmare that we have been living for 2 years!!! And in the dark, till I stumbled on this site!!! God, knows i was about to lose my mind when i came here! And thanks to caring people like her and others...that i can at lease breath easier, knowing that I am NOT losing my mind....but the stress has been alot less....knowing at least what we are up against! M.

[mot]

I should rephrase, and this requires a new thread. Most, not all, but most of the time I do not post because I have the distinct feeling of being circled by a shark. By this I mean that I feel that everything anyone posts on this forum is being policed by another member who then 9 times out of 10 has to chime in. Now I am not saying there is any ill intent whatsoever, but just that it's kinda weird & I imagine drives some people away. I think it is a problem if other voices, other ideas & information are not heard because people don't want to put up with the verbal fencing necessary. We "leakers" have enough to battle every day.

It looks like you had a problem right from the get go:
http://brain.hastypastry.net/forums/showthread.php?t=35313

Sorry....

M

[curranmom]

My guess that wasnt what Klane was referring too, but that is just my thought!

Kim

[Concerned Gal]

(Agree with Kim on the above point).

I haven't been around much and couldn't work out what was going on to result in this thread...and then it became clear.

Please don't be put off by others negativity. Yes everyone has a right to post their opinions and thoughts which we might not always like or want to hear, but (and it might just be me) I feel like the support that is here from the bonds formed between leakers and leaker's advocates far outweighs the negatives. I think its been proven that for every one poster who would rather pull people down then stand beside them, there is another nine here with open arms and a willing ear to listen (or is that monitor :)), give opinions in a non-confrontational way and support you regardless.

I am concerned that others are taking information re others circumstances and essentially approaching Drs and quoting specific scenarios from here. I can see the difficult position that has put you in Dawn...an added stress you don't need.

[dagaz]

I had to think about some of the reply's that I have posted in the past.
I hope I'm not the one we are talking about. I will often reply to a post and wonder if someone is going to take it the wrong way. Many of us are very outspoken and feel the need to say what they think, I am one of them.

I have never felt that I myself has ever been "circled" with any of my posts and it saddens me that some of you do. I have been a part of brain talk since it started at MG Harvard and have found the support to be helpful, however there are times that I come on to the bboards and know I have to take a break from it because it makes me focus much more on my medical issues.

If anyone has issue with another member or monitor it should be brought up to that person or persons so that you feel comfortable posting.

After all we are in this together.

Dagaz

[mot]

I think dagaz hit the nail on the head for me.
" however there are times that I come on to the bboards and know I have to take a break from it because it makes me focus much more on my medical issues. "
It just adds to my headache irritation to sign on here day after day and be besieged by links to medical papers, suggesting another dozen or so things that I should maybe have to worry about.. Actually I think it is just plain insensitive. This is a support site, and day after day to be bombarded by these kinds of posts that may or may not have any relevance , just further irritates me. It is duly noted that most of these postings are made or are appreciated by non leakers, who, no matter how close they are to the problem, don't experience the misery of this condition first hand.

M

[Concerned Gal]

It just adds to my headache irritation to sign on here day after day and be besieged by links to medical papers, suggesting another dozen or so things that I should maybe have to worry about.. Actually I think it is just plain insensitive. This is a support site, and day after day to be bombarded by these kinds of posts that may or may not have any relevance , just further irritates me. It is duly noted that most of these postings are made or are appreciated by non leakers, who, no matter how close they are to the problem, don't experience the misery of this condition first hand.
M

:eek:

I for one appreciate all of the postings with links and articles etc. I have found in nearly all situations when someone has posted an article etc that the thread is appropriately labelled enough for me to know it is a reference tool and not a 'I need some support' thread. So if I chose not to open and read it I can do so. I am disappointed it has got to the stage of critiquing others posts (again). I can only hope that the above comments don't put anyone off providing links or participating here etc because although they obviously aren't useful for everyone they may just lead to a breakthrough for someone.


Agree with this though -..." however there are times that I come on to the bboards and know I have to take a break from it because it makes me focus much more on my medical issues. "

[vini]

hi sorry you feel this way

this whole condition is so complex, it could fry our brains if we let it. I am the type of person that has to understand what is happening to me , but this is not for every one, and for some I would imagine not helpful to there situation , especially if it effects decision making. or self diagnosis is taken into account, I would and have recommended this forum to others, because the astounding effort that has been made by all of us, sufferers an carers alike and the practical information that has amassed over time, is praise worthy, as a newbie which we all once where, it can be overwhelming and for us it feels we are going over old ground but the support is always there, but unfortunately not a cure, but bringing new idea,s to the table , I would hope will always be apart of this forum, and should attract healthy debate and information for the part of the world people live , this can only be achieved by sharing and posting our experiences. long may it continue, but only because there is a need, not for the sake of it, I very rarely PM as there is nothing I would say privately that could not be posted on the public forum, if a particular post has made you feel this way please state the post, and not leave it open to conjecture, we welcome all here what ever there needs

[mot]

Hi vini and thanks.

You know, if it is someone's pleasure to post these things then I shall just look the other way.
Most times for me they just raise more questions then can be answered and I can't remember learning anything that hasn't been presented to me by my physician first. Not having my doctor by my side 24/7 to interpret these posts specifically to my condition, just causes me undo anxiety.

M