Brain Aneurysm Support Community

Hello I’m new, I’m scared and I’m grateful

Hello Everyone,

This past Father’s Day was the best Father’s Day of my life. I am 46 years old and come from a long line of family members that have polycystic kidney disease. It is a hereditary disease as I’m sure some of you know and with it comes hypertension because of the chemical called Renin that doesn’t Shunt through my body which gives me hypertension.

My mother had a mid cerebral aneurysm rupture in 1996 and it destroyed her life as she was a nurse and a neurological institute in Arizona. My wife’s grandpa had an aneurysm he did not know about that killed him, so with my newfound Aneurysm it has caused a great deal of sadness fear in the unknown and my family.

On Father’s Day after it was over we eat sushi we hugged and we kissed it was a great day. Before bed I started getting a crazy headache and my vision started to blur. As a veteran fire fighter paramedic and the captain I knew something was wrong but I denied it and decided to go to bed. All I remember is waking up in the intensive care unit at a hospital nearby our house to days after going to bed.

When I finally awoke I was told that because of my medication not working anymore I had a head injury called PRES that was completely reversible once they controlled movement medication again. I spent about a week in the hospital on a normal floor after I was in the intensive care unit.

I was released on Thursday and spent four days feeling completely normal again enjoying life no problems. On Wednesday before the Fourth of July of this year the same symptoms came back but I did not go unconscious this time, and I was readmitted to the hospital. During my first day they took three MRIs of my brain and studied it very well. On Friday before the Fourth of July of this year, A new neurologist came into the room in the hospital I was in and told me the news I thought I would never here in my life. He told me that I had an aneurysm in my brain and that they needed to repair it with a coil and possibly a stent.

I’ve always been the rescuer in my life as a firefighter and never a patient to this level of emergency so to be honest with you I broke down in tears and then it became anger and I told him I wanted the procedure done immediately after seeing what my mom went through and knowing what happened to my wife’s grandpa. Halfway through him telling me how they were going to repair it my wife came into the room and she heard the news, obviously she broke down hysterically.
I’ve always been the rescuer in my life as a firefighter and never a patient to this level of emergency so to be honest with you I broke down in tears and then it became anger and I told him I wanted the procedure done immediately after seeing what my mom went through and knowing what happened to my wife’s grandpa. Halfway through him telling me how they were going to repair it my wife came into the room and she heard the news, obviously she broke down hysterically.

This coming Friday, July 17 will be one of two surgeries I’ll be having for the repair of my aneurysm. I don’t know why it took me so long to find this wonderful group of people that you are in this wonderful website to be able to talk about how I feel my fears and ask questions about what to expect and how it’s OK to feel the way I feel. Right now I don’t really have any questions I’m just reaching out to all of you Knowing that there is a giant group of wonderful people but have lots of advice possibly or just love to give during my process. I just wanted to introduce myself and say thank you for being here and eventually being there for me. I know that technology has greatly increased since 1996 and I have a great chance At living a great life doing what I do now as a paramedic instructor as I retired in March after just about 27 years of service to humankind. Again thank you for allowing me to share just a small piece of my story and I hope to meet all of you some of you or maybe just a couple of you that could help me see things after my procedure is done.

My goal now is to have the strength to help my family interim to support groups so they can understand some of the things that might occur to me after my procedure so that we can live the best life we can live and be happy and flourish. Thank you all again for listening and I’m glad you’re all still here to talk to me about what we all share.

My goal now is to have the strength to help my family interim to support groups so they can understand some of the things that might occur to me after my procedure so that we can live the best life we can live and be happy and flourish. Thank you all again for listening and I’m glad you’re all still here to talk to me about what we all share.

Much Love,
Rich

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Captain Rich,

Welcome to the group! Thank you so much for your service as a paramedic and making it to Captain, that’s impressive and awe inspiring.

There are several support groups you and your family can join as well as become more educated. The first that comes to mind is here, but I’m biased. There is also the Joe Niekro Foundation and the Brain Aneurysm Foundation. Ben’s Friends started a caregiver support group on Facebook several years ago. There may be support groups for both in your area. Here’s a website for caregivers https://www.edcgov.us/Government/HumanServices/PressReleases/pages/caregiver_support_groups_in_el_dorado_county.aspx

Also talk to your neurosurgeon. They will be able to guide you and your loved ones to specific support groups in the area, especially if you’re having your procedure done in your county.

Some important things to do is have a family meeting and write down all the questions they have. Give or read the questions to the doctor so they can answer them, have someone write them down. Also make sure to go in hydrated, with your medical background, you know why this is important. After your procedure, stay hydrated and eat lots of protein, get a consult with a dietician before you leave hospital so you know how much protein you will need.

Unfortunately, no one can say exactly how someone is going to come out after brain surgery. We are all different. But they way I look at it is get your house in order, have everything you need done, done. This is from yard work, cleaning house, having easy meals for your wife to fix, wills etc. Remember to breathe. Something in me feels strongly that you will come out well. I truly believe that for those of us who have helped others, we get a special Power that encircles us, otherwise we couldn’t have done the jobs we did. One thing I always do before a brain procedure is Hug the ones I love if able, tell them how much you love them and why they’re so important to you.

Keep in touch and let us know how things are going.

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Thank you very much for the kind words, I love to help people, it is my oxygen…

It has been difficult to be a patient and not the rescuer. I have had hard days pushing people away that I truly love knowing it’s the worst thing I can do. My whole family has been very supportive and more miracles have occured than I probably deserve. I’m a nice person but since this has occured I have wanted to run away rather than take the love and support. I realize this and I vowed today to be better and to be available in all ways. I am grateful I have a group that understands the mental side of this and physical side. I have gotten allot done including a LWT that was hard to do. Now I am going to build an amazing Fire Pit for my sweetheart. Thank you for reaching out and letting me feel. I have my first of two surgeries on July 17th, Friday. Once I can I will come back and share with the group. I am Grateful today

Rich

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Wishing you all the best for our upcoming procedure. I had to watch my very fit and active husband (57) go through this only 2 months ago. He had emergency coiling and a stent put in, and a he had more coiling a month later. Both times he came through it all amazingly well!
I think his body and mind are dealing with the aftermath now. The only thing I would like to say as a wife is - take it slow and listen to your body. It will take some time to recover, the road ahead is not straight. There might be a few bumps along the way. Go well!!

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Captain Rich, I’m really glad you figured out the old brain stem was doing the flight or fight routine and you’ve actively taken the fight side of things. This is probably one of the most important steps you will ever take. While it’s not easy to ask for help, you may need to learn this lesson as I did. It will be okay. In fact better than okay, you will find the people in your life will be able to adapt more quickly if you ask. Just remember to keep the lines of communication open. Talk to your wife over the new fire pit and tell her your fears and hopes. She is probably much stronger than you realize. Remember to breathe to control the adrenaline rush we get addicted to, and when your in doubt, tell yourself what you would have told your patients or the folks under you. Best of luck!

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Wishing you good heath and a speedy recovery Cap! Thank you for everything you do for your community!
Bertie

Thank you so much for being honest and so kind. I know that there will be some adjustments in different ways of looking at things and I’m OK with that. It seems my whole life I’ve been adapting to good and not so good things and being able to adapt has really served me and everyone around me well. The advice given is so valuable and so needed I just appreciate you and our entire group more than you’ll ever know. I’m going to have most likely the same exact procedure as your husband and I know that I can come out of this very healthy happy and just as functional as I was before the procedure. I am keeping it real though knowing I’m probably going to have some physical issues pop up but I was told would reduce or disappear after time which is on here with me. The love we get here coupled with all the support and knowledge is amazing so thank you I will go well I understand the road is not straight, but, when has the road ever been straight for anybody you know, LOL? Much love much respect and much gratitude to you thank you.

Rich

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Thank you very much for your kind words I’m excited that they caught this early and then I’m able to be cared for not only through my surgery but by my new friends here it sure is nice to have the support and love and kind words. Much love much care and much gratitude to you as well, thank you.
Thank you very much for your kind words I’m excited that they caught this early and then able to be cared for not only through my surgery but by my new friends here it sure is nice to have the support and love and kind words. Much love much care and much gratitude to you as well, thank you.

Rich

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Thank you for such kind words and most importantly thank you for being here to help me learn about my illness and recovery and this wonderful group that cares about all of us which is so amazing. I am grateful today and I will continue to hold on to gratitude because life as we know it is precious and so are the relationships with me we were put on this earth to be great to each other not good not OK but great to each other. The relationships with me here during this precious life and communication with other people so important I am so grateful we have that here thank you for reaching out to me I appreciate it I will let all of you know how tomorrow goes once I am able.

Rich

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Thank you very much! Today is a Chill day before we head out at 0430 for the hospital tomorrow. It will be ok!

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Hi! I’m new too. Survived 4 Thunderclap headaches in one day. Next day went to Dr. (I live on an island with no hospital or ER) immediately helicoptered to a hospital for a CT scan. That hospital didn’t do aneurysms. Helicoptered to another hospital. MRI, angiogram, immediate surgery.
Found 3 aneurysms! One had leaked causing a stroke, they clipped that one and another. Still have one they intend to cool through an angiogram at a later date.
I am so very lucky and have all my faculties and no paralysis.
I have a 9"incision from top of my head to bottom of my right ear.
3 weeks since surgery.
Scary stuff but the medics and surgeons did what they train for.
I was too sick to be scared at the time but am very thankful.
Please be positive! You can do this!
I am an active 60 year old woman and never expected this.
I understand and my blessings are with you.
The hardest thing is I do have weird anger and tearful emotions. Hoping my neurologist will recommend a good therapist. I think that’s important for both the patient and categivers.
Best luck!

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Welcome Chestnutsmom! Glad you found us. If I may suggest, try starting a new topic on the anger and emotions. Many of us can help suggest some things, have gone through it, or can offer support. Just click on the “+ New Topic “ at the top right of the home page

Hope we hear from the Captain soon…yesterday was his surgery?
Captain if your there we are all wishing you well :+1:

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Yes it was on Friday. Hopefully Captain Rich will be back soon and enjoying some campfires with his wife.

You know, if you click on Captain 365’s avatar, and then on “Message” you can send him a private get well message.

There are many features here that work really well, but they don’t “display themselves”. Don’t be shy, if you’re wondering, just ask! You can post, or PM someone like a moderator, an admin or an intern. How do you find them? Click on
image
tab just below the banner, and then click on the avatar of the person you want to message.
Easy peasy.

Seenie from ModSupport

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Hi Captain,
I hope you came through the surgery well. I was very tired the first couple of weeks after, but so very glad that it was over. Hope to hear from you soon after you get some rest. Hopefully all of the stress you have been carrying that comes along with this has lifted too.

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Welcome Rich and Karen!

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Rich - I can tell you that two years ago, my rupture happened right before Father’s Day as well. The best present I received was coming off the ventilator. While my surgery was emergent versus scheduled, I imagine that the process is quite similar. My advise is to put this into perspective, which it sounds like you have started to do. Breathe more, before reacting. Know that you are loved and cared for. Be patient. Tell people, doctors, caregivers, loved ones, how you are feeling. If you can’t remember, write it down. Best of luck.

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Karen - Sounds like it has been quite a ride. I can tell you that my emotions were a rollercoaster as well. I wasn’t so much angry as I was overwhelmed. It seemed like I was crying at the drop of a hat. Somewhere along the way, my wife advised me to change the way I was looking at things. She figured out I was crying because I kept thinking about what almost happened, almost dying or having a significant change in my quality of life. She suggested to evaluate things from the perspective of being grateful/thankful for what I still have. I still have my family and nearly a full recovery. Yes there are remnants from the event, but in comparison to where I almost landed, I can live with the deficits. You are very correct that therapy will help. I would recommend PT, OT and Speech before psychotherapy. That is not to say that psychotherapy won’t be needed, but I think a lot of things get flushed out as you health improves. That said, the counselling helps to process the near death experience. Best of luck!

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Hello,
Rich thank you for your service and all you do
To protect the community.
I am seven years post op and doing great, this
Group is what got me thru the first year. No one understood my recovery except my friends
On this site.
It’s been a long time since I’ve been back but never forgot the words of encouragement from all the wonderful people in this room.
For all the new comers continue to reach out.
Rich

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