I hope that this web site is helping in a small way to make the AVM experience less scary, less stressful, and less traumatic for you all.
The web site has been up for 3 months and there are approximately 150 members to the site. In the United States, there are about 12,000 AVM hemorrhages per year, so there are thousands more people out there who could use the support.
Will you take 5 minutes and fill out this 4 question survey on how to improve the site for current and future visitors to the site?
Someone suggested adding “Not Treatable” to the treatment options alongside crainiotomy, proton, gamma, other. You are correct, not all AVMs are treatable so this is now one of the options. Thanks for pointing it out.
Done, I did not realize that this had only been here for three months. God must have led me to look at AVM info to find all of you!! I really do not feel alone any more!! Thank you from the bottom of my heart Ben. One addition, has anyone else gotten something in their email that was not actually from this site? I have gotten one thing that said it was from here, it wanted me to confirm my info like user name, password and the thing that got me was something personal but can’t remember now what it was. My good software caught it and told me it was unsafe. I opened it thinking my software was wrong but when I opened it, it was asking for info I had not used to get on this forum. I tried to report it to hotmail as a fishing scam but it disappeared when I did not enter the info it was asking for. Ben, I just thought I would let you know. It is the only email I have gotten with this title in my email like that but wanted to warn everyone about it. Something in the address bar did not match what normally comes from here.
You should never get an email from avmsurvivors.org OR ning.com asking you for your username and password! In fact, ignore 100% of such emails in general. Banks, ecommerce sites, financial sites NEVER do you to update your username/password through an email.
Always go directly to the web site (don’t click through an email) and check the url in the browser window before entering your username and password.
Hi Ben
I filled your survey.You mentioned only 150 people while our staststics shows near 250 ! Anyway,Thank you very much for your support.This site makes the life easier for the members.The mechanism might be invisible but the result is tangible.
I suggested 3 items to improve the efficiency of your questionaire( to mention relationship for the nonsurvivor members, to mention the birth date of patient instead of member and to mention the name of Doctor, Hospital and Country because in some cases, recommended doctor might be different with the doctor involved the case).But more suggestions:
Is possible to have some statistics about the patients and the treatments and the results?For instance: X% treated by Embolization alone, Y% not treatable, Z% treated by open surgery,J% operated by Dr.Spetzler, the result for W% fantastic or voting about the best Neurosurgeon expert on AVM, best Neuroradiologist, best place for Gamma Knife, common complication after Embo after surgery after Gamma Knife or Cyber Knife…
