Sounds like good news Matt! I’m really glad to read your update. For me, compaction is pretty much the norm and the reason I had several fix it attempts. From what I’ve read here and in doing my research, it’s fairly common and not surprising,
Most of us get told headaches aren’t from the aneurysms. I asked one of the neurologists I’ve seen along the way and was told there are so many different types of headaches and more people without aneurysms that except for the thunderclap headache, aneurysms can’t be blamed. For me, my Neurosurgeon is only concerned if I get a headache in a very specific spot as is the current Neurology NP I see. The Neurology NP is always beating my Neurosurgeon to ordering a MRI/A except this year, she’s already ordered it.
. I was supposed to be on a 5 year imaging schedule, which turned into a 3 year but seems I still get them yearly. I do like the new machines since they’re about 15 minutes long, easy smeasy! What I’ve been told is they’re looking at the neck to see how much blood is flowing into the aneurysm. Seems it’s been an acceptable amount since the stent was installed.
Totally agree we need more awareness. Which means we need to not only support brain aneurysm groups like Joe Niekro Foundation, The Bee Foundation, BAF, TAAF, and the Lisa Foundation to just name a few. We also need to contact those in power that can fund taxpayers money to research in every country. A little pressure from the constituents who vote them into power positions, needs to be a lot of pressure. The way I see it if one doesn’t have a very full wallet, then the vast majority in the area of coverage for that politician needs to bombard them with emails.
We have been to Lobby Day several times in the past. It’s exhausting and can be expensive as DC is no in way cheap. Heck, it’s not even reasonable so vacation money needs to be allocated especially if one has to fly. Not all the groups Lobby on the same day. Seems there may be a bit of politics and money at play there as well, but I wouldn’t swear to it in court. If I had a magic wand I’d sure wave it over the groups and the fools on the Hill here in the States. We met several politicians (yes. In fact I do know they don’t like that word, it is what it is) who’ve had family members or friends who have ruptured, many have passed away. Yet they still don’t support the bill called “Ellie’s Law”.
You can read about Ellie on the website “Live Like Ellie”. Her family is wonderful and have really worked hard at procuring donations for both the BAF and The Bee Foundation by having a walk run Marathon. We have been a few times before the pandemic hit and they went to virtual marathon for those years. Todd Helton’s wonderful college friend, Kevin happens to be an attorney up there and he donates his time along with his team of lawyers to get Lobby Day well organized and working correctly on the bill. The first time I met Todd was the first time we both went. I remember he was still reeling from the loss of Ellie. Her story was the first time I had tears after my rupture, so she helped me in regaining my affect. The next year, Kevin had stepped in to help and trust me, it was sorely needed.
Ellie’s Law not only asks for an acknowledged Brain Aneurysm Day in September, but allocated funding for the NIH to do research. Since I’ve only been up with the BAF and The Bee Foundation, I don’t know what the other groups are doing or asking for. I do have a strong suspicion that egos may be at play as well as the politics/money thing. I wish everyone, including the Fools on the Hill would just grow up and play nice together. Alas, I really don’t have a magic wand… I’ve never had a politician have the cajones to tell me what it takes for them to sign a dang piece of paper to support Ellie’s Law, not even Patrick McHenry my Representative (they prefer Congressman or Congresswoman but one needs to be careful as some women in the House prefer to be called Congressman. Whomever is assigned to the small group you’re in will let you know before you step foot in their offices. It truly is befuddling as to what the key is to get them to put their signature down. Not enough support on the bill, it lingers in the Oosphere somewhere never to have the entire House or Senate to vote on it. If everyone who has an aneurysm ruptured or not and every friend and family member who knew or knows someone with an aneurysm who survived or not sent an email imploring their politicians to support the bill that would help. I also think that there needs to be stronger involvement from the media. If the media in all its forms would get the message out, it would be like the squeaky wheel getting oiled when you add all those people who have sent emails to their politicians. Maybe it takes folks to go door to door asking for signatures to encourage their politicians to support the bill, get enough countrywide, even the sitting President would have to take a gander. I think it’s in the neighborhood of 250,000 but don’t quote me on that as there’s been a plethora of changes and I can’t keep up with them. Grassroots efforts have been effective for many things in our country over the 250 years we are coming up on, so maybe it can still work.
I do encourage everyone to go to one Lobby Day if they can. It’s amazing to see all the different folks who have had aneurysms repaired, to meet those who lost a loved one. It’s truly a big melting pot covering all walks of life. Be warned it can be very tiring, emotionally and physically so be prepared. Usually whose ever office you’re in, will offer a bottle of water. You just won’t be able to carry any food into the building.
So I’m looking forward to reading how you’re able to get a grassroots campaign going in your neck of the woods, perhaps you’ll have that wand! Maybe you’ll attend Lobby Day next year, just look on the BAF website for the information. I believe it’s in March.
