Quantcast

AVM Survivors Network

Why I haven't been here, why I'm here today, and why I'm writing this post


#1

When I first found this site, I thought that I would be on here every day. Lately it hasn't turned out tho be that way.

I think a lot of it has to do with the fact that I feel that since my AVM was in my neck and my AVM story is atypical of what was supposed to happen in the way of treatment, I feel that I'm not much help to anyone. It does help to be part of the Extremity AVM's group, but even there, I feel out of place and not able to give any valuable information to anyone.

But today there was a notification of a post in Extremity AVMs that I thought I could respond to in a way that was helpful. Then I saw a post on the main page which I felt compelled to read and reply to. I then got comments on my comments, which made me feel good that I came today. While I was responding to comments, I took the time to chat with someone. I han't chatted in awhile with anyone, and that felt good as well.

But after I got off, I felt extremely sad because this site hit just left of home of a terrible tragedy. My daughter's boyfriend's sister died of an aneurysm on Sunday. I didn't know any of this was going on becaues my daughter was hopeful that somehow Amy would pull out of the coma she was in, but that was not meant to be.

I found out about Amy 's death through my daughter's response to a Facebook post. She called me after I commented on the Facebook post and said why she hadn't called. Wehn I asked her what happened to Amy, the first thing she said was she vomited and lost consciousness. My stomach sank because I knew that that some sort of brain malfunction had occurred. But the doctors though she had choked, which caused blood not to flow to the brain. It took them awhile to figure out that she had an aneurysm. Knowing that there usually are warning signs before an aneurysm is discovered and that people live to tell the tale of them, I asked my daughter if there had been anything happen prior to Amy's death to indicate that there might be something wrong. My daughter said that Amy had been experiencing numbness in her feet, but the doctors had said it was nothing to worry about.

The town I live in isn't that small. One would expect health professionals to know to do an MRI to be on the safe side when it comes to neurological issues. And the hospital in my community has been running ads during the Olympics bragging that their goal is "to get it right the first time".

I know that many people have experienced similar situations where their worries were dismissied or that their AVMs were misdiagnosed only to have an AVM rear its ugly head in some horrible way. That is why this site is so important so that people can have a place to go where others understand what they've been through and where people can learn about AVMs.

I honestly don't know when I will be back other than to respond to nay comments on this post or to try to give help in the Extremity AVM's subgroup when I can. But what I can tell you is that I have talked about this group and Ben's Friends more than once online so that people with rare illnesses have some place to go and talk about them. There's been more than one person who has been grateful for the information.


#2

Hi Deb,

Thanks for your post. I'm sorry to hear of the death of a close person from the aneurysm. Even with the best of medicine, there are still tragedies.

The internet in general and this site in particular can provide some unique moments. While many posts here are happy and upbeat, the overall reason people hang out here deals with potentially tragic medical situations. And you never know how just a note of "I'm sorry to hear of your situation" can help a person-it might just be the words that pick them up for the day.

Because of the nature of AVMs, I'm not sure it's always a good idea to hang out on this site 24/7 anyway. We all need breaks from our day to day AVM (or other) issues. I try to visit the site a few minutes a day, but with the volume of posts, I no longer read every post. I tend to read the posts where the title interests me, and I try to read the posts that have zero or only a few replies. As a mod, I feel one of my tasks is to watch out for those posts that are made that are not responded to. I mean who wants to spend the time to write something and it might appear that no one wants to read it (right?). But not all posts require a response either I suppose (like no need to respond to my ramblings here- grin).

I wish you the best in your journey. Hang out when you wish, post when you feel moved, and live life to the fullest.

Ron, KS


#3

Thanks for taking the time to read my post. I've gone for extended peroiods of time, een months, before someone has replied to something I have posted. When I have been on, I've noticed that you have taken the time to respond to many posts on here, and I appreciate that you feel it's your responsibility as a moderator to let someone know that anouther member cares.


#4

Thanks Deb,

It's not just me--all the mods I've known really try hard to make this a welcoming place.

One of the things I've noticed over the years is that short posts tend to get replies, while longer ones don't. Or if the poster asks a question, more folks seem to respond. Not always, just an observation.

I guess we are lazy, huh?

Best wishes,
Ron, KS


#5

I'm sorry to hear about Amy, Debbie -- it makes me very sad to hear tragedies like this one when someone might have been saved if diagnosis had been quicker. I do feel that automation and bureaucracy are hurting doctors' abilities to diagnose sometimes. My chief motivation for being here on the site is to share information, so people can know their treatment options and hopefully get the best care possible. This community is getting stronger by the minute, so keep posting.


#6

Thanks for the responses. I have some extra time right now, so I will use some of it towards responding to posts and welcoming new members.

Take care,
Debbie


#7

Sorry for your loss Deb. You were one of the first friends I met on this site. I'm like William and try to respond to posts that interest me or that I feel I can offer adivce or support to. As a moderator also, I do try to get to as many new members as I can but with the volume of new members every day it's difficult. I'm glad you came on today, even just for a while.


#8

I'm so glad you are back Deb....We certainly could use your help. Even though I am a Moderator, and because I have aphasia, I do the best I can to read and understand what people are trying to say. We certainly need people that can support our members. The site is getting larger and larger by the day...


#9

Thanks, Trish and Louisa. The site was under 1,000 people when I joined. The little activity I've done here yeterday and today has made me feelbetter. I will try to help when I can.

Take care,
Debbie


#10

Hi Deb,
I'm so sorry for the tragic loss of your daughter's boyfriend's sister - that's so sad.
Yes, it does seem like HCP's in ALL E.R.'s ought to pick up on 'common' neurologic symptoms and address them immediately, yet we personally know, or read in our community this isn't so...
Please visit & post when you can & know your contributions DO make a difference.
Take care.


#11

Hi Deb - I'm sorry for your loss.

Also, just my two cents, I think everyone and their perspective adds value to someone else's perspective - no matter if the AVM is located in the leg, neck, brain, or no AVM at all.

I think that you were one of the first people on here to comment on one of my questions. Unfortunately, I have no idea what the topic was =), but I do remember that you were there and could relate - which, in my book, is awesome!

This site is truly the gift that keeps on giving.


#12

Hi Deb!

I'm so very sorry to hear of the loss of your daughter's boyfriend's sister and welcome back too!

When I first found this wonderful site, I too was alot more active, however, now that I am AVM-FREE, I have less time to monitor the postings like I had been doing daily as I am now back to work full-time and they block internet access to most external sites. I try to make it a point to get to the site at some point during the work week to contribute yet feel a bit bad at times, as I know that this site was a lifeline to me when first diagnosed with an AVM and am so very grateful for all of the wonderful friends and information I received from this site and I want to be here as much as I can trying to help in some small way.

/Michele


#13

Thanks, again, everyone, for responding. I now feel as if my responses do matter even though I wonder at times.

Take care,
Debbie


#14

Hi Deb - Thanks for writing such a heartfelt post. As an "extremity survivor" and moderator myself, I understand how you feel about not necessarily being able to contribute as much. That being said, we have all had at least 1 person who has helped us immensely on this site, wherever the AVM may be located. The beauty of the site is we all have the ability to pay it forward,as I have also done for others. What you wrote today resonated with me, so don't be a stranger to this wonderful site....Don't sell yourself short Deb. You helped me today too:)


#15

Just wanted to send a note to say how heart breaking it is to hear of your daughters boyfriends sister.

Thanks for sharing your story and feelings with us as well. We are new to this avm journey as my 3 year old has a facial avm and I have found bits and pieces of many stories that have helped me understand what is going on with my son that doctors were not able to explain. Such as your problems with your lymph nodes. His scan has always shown larger lymph nodes on the side that his avm is located (ear, cheek, lip and tongue) and your story is the first I have seen them mentioned as being effected. Every avm story is so unique, you never know when your information will help others.

I wish you all the best! Keep us posted on how you are doing!


#16

Hi Deb
You replied to a discussion - "Helping Hands" - when I was feeling down and out
Your compassion and spirit was inspirational. Thank you so much for being there for me and so many others. You are always welcome in my house Deb.

Permalink Reply by Deb C. on July 28, 2010 at 6:54pm
Every day I appreciate the wonderful people that I've met through this site. They not only have helped me understand my AVM, they have helped me feel better about myself in general.


#17

Thanks, Tony, Connie, and Debra! Glad to know that I could be of assistance.

Take care,
Debbie


#18


Deb, I understand how you feel. My town, New Castle,PA, used to be a thriving community when I was a child and has shrunken to ghost town status. The best treatment found here now is for a hangnail or a broken leg. Anything serious, like an AVM means an aujtomatic trip to Pittsburgh to have any chance for survival. That's where mine was removed. As a crisis counselor, I invite anyone who needs a shoulder to lean on is welcome to chat with me. Our support board is my destiny and even the slightest help means much. I encourage you to keep on trucking here. You are a needed support!

Rob


#19

Thaks, Rob. I often had thought that my AVM was part of my life journey, but then I thought I was wrong about that. While I feel that the other polaces I have been since not being so active on here also have been part of my life journey, I feel I need to visit and contribute to this site more often than I have been lately.

Take care,
Debbie


#20

Just wanted to let everyone know I'm feeling better concerning Amy's death. I feel she is with God now. Part of that peace came through your responses to this discussion.

Take care,
Debbie