Curious question

General
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So I have a curious question for all of you. I am doing a presentation to raise awareness on brain aneurysms. I want to share some statements from people that have them, besides me anyway.

So if you could tell someone that has not been living with one or had a rupture and survived, what would you tell them?

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Hi Shayla,

Talking to people about ruptured aneuryms, the best thing is get treatment ASAP. You should go to the hospital if there is what I called the worst headache of my life, which turned very fast to consant throwing up. It is strange because it is like flu systoms but these come on very sudden. You may have a feeling that you are going to pass out. Go to ER.
Recover, will be long and hard work. I had my ruptured aneurysm is 2002 and I still feel that I am recovering. I am back at work full time. I have a lot of side effects.

  1. I get headaches, and at least 2 times a year I wind up in ER. Most of the time I am given pain shots, have a Cat scan and nothing is found. Last year I went in for one of these headaches and it turned out I wasn’t getting enough blood to the right side of my brain and I had another aneurysm. So always be careful once you had one.
  2. Exhaustion, that seems that is a main topic on this site. Exhaustion at the end of the day for me now but during my recoverly within the first year or two, the exhaustion came on at anytime and even if I wasn’t doing anything.
  3. Some light headness, be careful bending and lifting. Dr’s will tell them.
  4. Short term mermory loss is another common topic. I was at a meeting and forgot someones name that I worked with for a year.
  5. There may be some personality change
  6. There is guilt or trying to understand why you survived
    The main thing is that if you have a ruptured aneurysm you are in for a long, hard recovery but don’t give up. Try to do the things the Dr or theraphy tells you to do and work hard.

I am not a good word smith but I hope this will help and you receive a lot of responses. You might want to contact Ginny, she may have some thing prepared.

Good Luck to you, you are doing a wonderful thing.
Ken

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Hi Shayla,
Wow! Where to start.
I would say to people do not take for granted what it is that you have, your health. We take so much for granted until we are faced with the challenge of surviving something like this.
I would say don’t give up, keep fighting and that you can overcome just about anything.
The other words of advice that I would give to people are to listen to your body and question anything that doesn’t seem normal, be aware so that you can be proactive in your health. This recovery process is so hard, physically and mentally but worth it.
By the way, I love your name, it is a really beautiful name that I have never heard before.
Shelly

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Hi Shayla -

Mine never ruptured, mine were found completely by chance while having a CT Scan for Thyroid cells, I am a cancer survivor. When they did a scan they saw something in my brain. I was sent to a neurosurgeon who was recommended by my endocrinologist, but he turned out to be someone who didn’t have enough experience to deal with what I had, which turned out to be Moyamoya, which 1 in 2 million get, it looks like an AVM at first, but it turns out to be something very different. Lucky for me my mother did research and found another neurosurgeon, and they decided to do new angiograms and perform surgery within in 15 days and it turned out that I had 4 aneurysms, 2 which were just about to rupture.

So my advice is to make sure you get multiple opinions (I had 4 in all) and then there are really 2 types of Neurosurgeons, the type that do coiling through angio or the type that do open brain surgery and that you need to know what kind you are seeing and ask many question, why can’t I have coiling, why open brain, etc.

Research as much as you can about the procedures and of course, there is the recovery portion that is so different for everyone, ask your dr. as many questions about what you can and cannot do.

Thanks for raising the awareness.

Sarah

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I, personally would say, Gods not done yet. You are a survivor. Yes, there will be steps and challenges, but the biggest step living and what a huge step. Don’t give up, tell your story to help others.

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helping people to avoid being misdiagnosed would be a good topic, making sure a person goes to all lengths to get the right test done. let them know it is not a death sentence it is a new beginning to your life. i had my anny rupture back in oct 09 and have a new found respect for everything in my life and seem to enjoy it more. take nothing for granted and live and love like theres no tomorrow. God spared our lives for a cetain purpose,we may not know why right now, but day by day we begin to learn as we help others by sharing our stories…i hope this will help…God Bless

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Hi Shayla,
As an eighteen year survivor of a rupture there a many things I could share. I think the most helpful is…the brain is truly a miraculous organ. I was told whatever skills I would regain,would come in the first couple of years. Mind you in the begining I could not make a pb&j sandwhich without effort or fold a towl. Today, most people cannot tell anything happened to me. The secret, I think, to recovery is to recognize your situation,accept it and then to restructure based on your changing abilites. I once did a talk about this approach and could share more if it would be of help. Thanks for getting info out and good luck. warmly, Gail

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Listen to your body. It is telling you to get help when you need it. SLOW DOWN. STOP AND GET THE HELP WHEN REQUIRED. If I didnt listen to my body when I needed it, I would be dead.

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I think I would tell them that you need to listen to your body, it has an internal mechanism intended to alert you to the fact that something is wrong. However, we often chose to ignore it because if would be too inconvenient to our schedules. But in this case, ignoring it could mean death.

For survivors, I would say that you need to be honest and open with others about what you’ve gone through and what your constitutes your new normal. If you have a difficult time remembering names or faces, you need to say so and not be ashamed of it. Your reality is different then that persons. It’s what we call a nonvisible disability and it is protected (in the US) by the Americans with Disabilities Act. But that protection isn’t there if people don’t know about.

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This was very helpful to
Me . I am almost 4 yes post coiling and stenting .

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Hi Shayla,
I’m typing for my husband, Dan,and he wanted to share his input having survived a SAH. First,don’t expect anything to be easy and make sure you have at least one solid support person who you know you can count on to be with you during struggles, coaching you on, and to celebrate each and every “small” milestone.

I know this is late and you likely did your presentation. If so,I hope it went great!

Best,
Kim

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