Hi, All! I'd like to get your opinions. As AVM survivors, we have all known the panic that grips you the first time "brain surgery" and "MY brain" are in the same sentence. We've all had questions and concerns that we can't even share with spouses or parents or friends. We've all been grateful for the AVM Survivors Network and Ben's vision.
After two unsuccessful embolizations and a completely successful surgery, I felt a compusion to help others at the beginning of this journey. The piece that was missing for me was the ability to talk with someone, to have someone hold my hand and understand what I'm feeling because they had felt it. Blogs and chats and online discussions are great, but I would have liked to sit down with someone who could say, "This is what that means... Here's what happened to me... You won't believe how good the grass smells on your first shakey walk after you get home..."
So...I'm thinking of starting a non-profit called Patients for Patients. I'm still formulating the specifics, but the idea is to connect patients who have been through a situation with new patients and their families to provide support, experience, resources/referrals, friendship, a listening ear, a shoulder. I'm not sure yet what forms that support will take, whether it should just be one-on-one or include group meetings. If the idea were to take off, there would have to be legal disclaimers of all sorts, we'd have to screen people on both sides, etc.
Do you think there's a need for this type of organization? Is it something you would be interested in being a part of?
What should its role be?
What considerations need to be addressed?
What are the downsides?
Thanks for your input! If you think I'm crazy, tell me that, too. I've already got one in that camp :-)
I think it's a great idea and I would absolutely love to be a part of it. For me, being able to share my experience and offer support makes me feel so much better. Since I can't work any longer, it gives me a sense of purpose.
I think you Idea is fantastic!!! I just found out this week that I am starting a very long scary journey and I would love to be able to sit down with someone and ask all of my "stupid" questions! My Dr is supportive but I know he is busy and I don't want to continuously bother him about silly little things that probably do not matter. I am so thankful that I found this site and have a place to put my "stupid" questions but I would love a hug and pat on the back from someone who has been there done that!!! Best of luck to you in organizing and thanks for thinking of all of us "newbees" who are scared out of our minds!!! Prayers for you and all those you touch with your incredible heart!
JessAnn, you are exactly where I was eight months ago and why I am starting Patients for Patients. Your doctor and the AVM Survivors Network are fantastic resources, but I, like you, would have really liked to have had someone to hug me who had been through it. Contact me and let's see if we can't get you connected to someone near you. The AVM group is a wonderful, caring group of people. I don't think I'd be here without them.
Thank you,Trish! I've got to get the details and process figured out. Would love to have you involved! I'm able to work and love what I do, but, having survived this, I feel there's something more that I'm meant to do - something helping others. So here we are :-)
what a wonderful idea! I was love to be included. I often see so many people alone at their appts in Neuro and wonder where is their family or a friend. I would love to help people with my experiences and even take people to their appts take notes etc. Angela
Great idea! as you say this is a great site and no doubt tge only sense of comfort i have had through my journey! it would be great to have somewhere to go in the uk also! Maybe you could branch out to uk! xxx good luck and keep me posted xx
That sounds like a great idea. You must understand that not everyone is "gripped with fear" with their surgeries/experience. When I was getting ready for my procedures, I was able to speak to former patients and ask them questions and had a lot of faith in my doctors at Duke Hospital. When you say "surgery" you could be talking about a craniotomy or radiation for example....my point being everyone's AVM surgeries are so complex and individualized. It is rarely the same experience from patient to patient, but all patients could use the experience of talking to a former patient. You have to also be very careful with the "This is what that means...here's what happened to me" part. Again, 2 people can have SRS and have completely different outcomes. It is not black and white, but sharing experiences and information is good as long as people understand the premise. It should not be treated as a white knuckle - get ready for disaster event. The more positivity you can create, the better. I had radiation for my AVM, it was outpatient, quiet and i was calm and confident in my docs. I had complications one year later, but consider myself lucky compared to most AVM Surgical patients. One additional consideration, the life-cycle of one patients journey can last many years or decades with multiple surgeries sprinkled thoughout in addition to other procedures. How will you incorporate your model with that type of scenario? I was diagnosed when I was 13 and I am 41 now and will be dealing with this the rest of my life according to docs. I think you are on to something, but I would be interested in hearing how this would work. Answers to your questions 1 -Maybe 2-Yes 3-support one-on-one 4-see above for considerations 5 - see above for downsides Good luck!
Susan, I love your idea. I wish there was someone I could have talked to, in person, that understood about my AVM journey. There is a support group at MGH, which I haven't been able to attend, because of distance. Since I would have to have someone drive me there..it's been difficult...Let me know if there is anything I can do to help.
Hi Susan, I think it's a great idea & it would be very helpful!
An eternity ago I was very involved w/ an AVM/SG that held quarterly meetings @ the home of the person who started it & we would sometimes go to the University hospital & visit pts. In time the group became incorporated & we created brochures, newsletters, etc. Personally, I LOVED it & I'd found my passion!!!
The down-side is, you can only do so much & if you don't find a balance of participation/involvement, you can easily burn out. Also, funding is a necessity (phonecalls, postage, brochures, etc).
For starters, I'd encourage you to let your neurologist, neurosurgeon & HCP's know what you're planning & also network with your local stroke & head injury support groups (often assoc. w/hospitals & rehab units). The more support you have from your medical community, the better! :)
The sky is the limit & I wish you great success! :)
Thank you everyone for your thoughtful and helpful input. Please "keep the cards and letters coming!" I am putting together a web site (if anyone loves designing web sites, I'd love to hear from you:-) and a brochure. My neurosurgeon has volunteered to share the information with his patients when we're ready. I'll start there to get the process down. I'm also just getting back to work after surgery, so have to focus attention there for a bit.