Well it has been over a year since my rupture and surgery. I have had to self-advocate for the resources to help me. It has been a learning experience but non the less, a very educational one. My calendar has been changed from a monthly to a weekly calendar. I try to get to the gym for my workout and physio (coordination and balance drills) every day. I try to work my dog every day. I have to drive 56 miles for speech therapy once a week. It has taken a lot for me to get to this point of recovery. This week I had to drive 56 miles twice so on the weekend, and all my plans of housework went to the wayside. I was so tired that I slept most of the weekend. I am learning a very available lesson and that is if you are adding to your routine be prepared for a nap or a bit of restfulness and it may take time to get use to. All in all, I am a survivor, a fighter, and, as Deidre says from the Bee Foundation, a hero. We are all heroes for having to have survived and fighting to go on with our lives! My admiration and pride for all of you is what makes me an advocate for better resources in hospital and out.
You are literally miles ahead of where I was at your point in recovery! You always amaze me in what you’re able to accomplish, always!
I loved hearing about the nuts and bolts of getting through your first year. Everything is so exhausting! Right before my rupture I had fortuitously bought a chaise lounge for my screen porch. I ended up napping on it everyday through the rest of the summer and into the fall. I was so grateful that I had it. Anyway, it’s like someone hit a huge reset button on your life and you have to figure it all out again. I found my energy level very gradually improved over a few years, but I still need to have rest and /or quiet time after a lot of errand running or social activity.
I ended up having to go to a daily calendar (actually it was more like an hourly calendar in the beginning) that first year and recently have returned to it. During that first year, just remembering to take my medications was maddening. I’m currently using a Hobanichi tech calendar, which I really like. I find that I still need structure or I forget to do things. Each day is a whole page and I use it as a to-do list, an appointment list and also just a place to be creative.
I spent a lot of time feeling super grateful that I lived and still have that feeling. I liked you saying that we are all heroes. I had a motto, “I showed up!” No matter what was going on, I just kept showing up and trying.
I have a little sign on my desk that says, “Brain injury recovery in progress for life.” It reminds me to smile when my newly developed quirks come out.
Thank you …I have a new goal that I am working towards since I can’t go back to work. I want to advocate for rehabilitation programs to be put in place for each and every person who has a ruptured or unruptured aneurysm. I would like to see a program or plan put in place before a person leaves the hospital. The plan should include a speech therapist, a counsellor, a physiotherapist, an occupational therapist, and a neuropsychologist. I am becoming more passionate about this as I go to the webinars and listen to peoples’ stories. I am going to contact the Canadian Foundation and see what I can do besides write letters to governments and heads of healthcare systems who make enormous salaries from are taxes we pay which should go toward patient care instead of lining their pockets. Sorry for the tangent, but that burns me through and through.
“It’s all good” as our handyman often says. This is a place we can rant about unfairness in our treatment. Light a fire under them! Perhaps if you can get just one head of Neurosurgery from a teaching hospital to support your efforts it would help. I know here in North Carolina there was a woman who garnered the attention of State government to bring brain aneurysm awareness with the help of a surgeon I believe and a lot of grass roots campaigning via her newspapers and local television stations. I’d guess FB as well but I don’t do FB.
Thank you!! And, before I start my “rant”, let me congratulate you on your One Year Anniversary.
You’ve put into words everything I’ve been frustated about since my life changed almost 22 years ago.
I started writing about what frustrated me. I was on my umpteenth paragraph when I realized I was getting angry!! (And rambling) Now I’m tired!
I’m going to try and sum up what I’d been trying to say. People can’t see our injuries. If I’d broken my leg and then developed a limp anyone who saw me would know something was wrong with my leg and act accordingly. The Dr and/or nurse who are mending your broken something have probably had something broken and can tell you what to expect and where to find help.
Not so with a ruptured or un-ruptured aneurysm.
I agree completely with your list of professionals we need to help us recover properly. I’d add a cranio sacral therapist. That’s probably under physiotherapist. My cranio sacral therapist wishes a plastic surgeon would close us up after a craniotomy. Makes so much sense!!
Good luck on your endeavor and your recovery!!!
Hello, could you please tell me what size was yours and the location. Mine is 2mm and cannot decide about the surgery.
My aneurysm was 7mm when it ruptured. If I would have had the choice of having the surgery before it ruptured I would have taken it.
Hi. Thank you for your response. It’s a tough decision. Doctors say now the surgery carries more risks than the aneurysm itself as it does not grow or create any symptoms. It’s hard to lead a full life i need to monitor it constantly. Thank you. wish you health
@Tamar I just wanted to let you know that my aneurysm started at 2mm and the first neurosurgeon I went to told me it wouldn’t grow and that he would watch it. 5 years later I hadn’t heard from that neurosurgeon at all and it grew to 7mm and ruptured. I am so thankful for my new neurosurgeon, Dr. Haw and his team, for saving my life. I am positive that if your doctor is checking, he will know when to do surgery. You could always get a second opinion.
You’re in a tough spot, that’s for sure. I don’t know how medical insurance is in the country of Georgia. I know where I live in the USA, it’s very different from the UK or Canada where it appears there’s a lot of hurdles to get to a specialist and then can be costly for a second opinion. Here, the specialists often have to get prior approval for things they would like to do from the patient’s insurance company and that can be a hurdle in itself.
I’ve had many angiograms, so many I used to could recite all the risks and there are many, many risks. I would correct both the anesthesiologist resident and the Neuro Resident when they wouldn’t tell me all the risks or minimize them, especially the risks that can kill one. Doctors in any country always have to balance risks with need, age, health, reaction to dye, stroke, rupture the list goes on and on with a lot of it related to the anesthesia. They are weighing what could happen to what they need to see. If your doctors are telling you the risks outdo the need, I would look at it as they had my best interest at heart.
I think one of the things we all need to do is try to find ways, healthy ways to deal with the stressors in our lives. I like to take joy in the smallest of things, do my relaxation breathing all the time (mostly). I’ve also removed myself from those who cause chaos in my life including family. I look at it as a survival method now.
Wishing you the best of luck!
Thank you so much
I agree with everything @Moltroub have said. Sometimes the risk is greater than the benefits and that can be hard to accept. The doctors makes their decisions on when to recommend surgery or not based on modern science and knowledge. There is a saying “ the surgery was successful but the patient died “. This is definitely nothing that anyone would want to happen.
I would like to add a few things, among known risk factors are a high blood pressure and smoking. Please make sure that your blood pressure is within normal limits and if you smoke, the best thing you can do for your health is to quit smoking.
I wish you all the best.