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Thread: After care, Suport Groups and Awarness, for Aneurysm's

  1. #1

    Default After care, Suport Groups and Awarness, for Aneurysm's

    I am just trying to get some feed back from you of all of you whohave been there done that. I know I got no after care at allafter leaving the hospital it was like we did the surgery now go...you deal with the other stuff by your self with no tools, not to mention my poor care giver...This should never happen like this! It is inexcusable! This needs to change with all the other oranizations out there that pull together for causes its time the the Aneurysm cause stops getting looked over! So I start here find out who got after care and who didnt.. Thats a start!
    Thanks (((((((( ))))))

  2. #2

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    Hi Deevine,

    I'm sooo sorry you didn't receive better care after your release from the hospital. It IS a problem and I think you'll find a variety of responses to your question on this board. Each person's situation is different with regards to the severity of their medical needs, the physical location they live in and the people around them. It IS a problem.

    In my case, the hospital wasn't extremely helpful when I left after 21 days in 2006. Unless I asked pointed questions, and I had no idea WHICH pointed questions to ask, they didn't really volunteer any info. I was sent away with a book about Traumatic Brain Injuries, which didn't really deal with aneurysms at all and I couldn't even read very well at that point. That's not to say the staff in the neuro ward and the Dr's weren't fantastic, they were, but like you said....the "aftercare" package was lacking. I believe it's getting better at the hospital I was at, but there needs to be more.

    I was very lucky in that my husband works from home, so he was able to do the dishes, feed the cats, get the groceries, do the laundry and drive me places. I had no other close friends or family around me to offer HIM relief...it was just HIM. He's my angel and I don't know what I would have done without him during the period. I know other's aren't so lucky and have no place to go for support.

    I found the wonderful people on THIS message board while I was still in the hospital and they were a godsend. It was such a relief to know I wasn't alone and there were other people out there going through the same thing, or who had experienced similar things. Also, this board was extremely easy to navigate and understand. If it had been confusing and difficult to understand, I probably would have left. They also allowed me to misspell words left and right and didn't give a damn. There were no support groups for aneurysms in my area, and still aren't, but we're trying to get a group start. Unfortunately, it's the medical community, and their involvement, that is holding things up.

    Thank you for asking the question though. Simply by bringing more light to it, you're raising awareness and we need to continue to do that!

    Stay strong, take care of yourself, and keep on LIVING!
    Heidi
    Ruptured 11mm annie on 10/5/06. Left internal carotid artery. Coiled at Maine Med. Portland, ME. 16 coils. Coils compacting Dec. 2010. Stent implanted 3/16/2011 and 4 more new coils added 4/27/2011 by Dr. Ecker. Another 4mm annie discovered Dec. 2010. Older sister died from rupture 5/29/12. Smaller annie grew & was clipped in Jan. 2014. Orig. annie getting new remnant. Possible flow diversion needed now. Check out my Brain Blog: Brain Blog

  3. #3
    Distinguished Community Member Ging's Avatar
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    Deevine,
    Ging here, I know what you mean about being just put out in the world and nothing but your discharge papers in hand. when I had my first surgery in PA. I was sent home with a Plavix prescription and told to take aspirin for the rest of my life. they would call for an angio in six months .That was it ! I had to fly back to Fl to my home....nothing about fly or not to fly...no card saying if it was safe to MRI me, because I had a coiling it was as if I had no brain surgery....wrong , they dissected my right ventricle artery....blood clot formed and no blood flow for almost a year until they did a retrieval angio to get the clot and open up that artery...but like I said No one to help me ...I flew home, still have issues with vision spelling and Headaches. Five years later had the surgery again...coils successfully put in place...but had three strokes ...one in my left eye. bled from the femoral artery for 19 days...

    yes support is needed for the care givers if you have a care giver...in my case I had a reluctant care give and now we are just divorced. we don't have a support group where I live , but wish we did...I think it is important to have people that can understand your frustrations. I am so very thankful for a daughter in law that helped me with my words when I got stuck. and a dear friend in my neighborhood that insisted I be on the HOA board as secretary....she always checked my spelling and wording and it was like therapy for me...I am along way from being me ...but I am so blessed. I think the helpers and care givers need respite and they need more information on what to expect and what they can do to help with deficit's as well as the normal House keeping . Care givers are Angels for sure , been there twice ! I hope you get many responses, Ging

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