Trying to cope

Hello everyone, my name is Gina, i am 50 yrs old. I would like to share my story with you, this is very hard, but its a start to recovery i hope. This summer on July 16, 2011, my husband and I were out celebrating his birthday, when all of a sudden i got a very bad pain in my head. I felt very sick, and not able to see well. We got very scared, my husband arranged to get me to a local hosital. There I felt very confussed and the pain was worse. They arranged for a CT scan, and within minutes of the results, there was panic. They were arranging for air transportation to a Toronto hospital. We were told I had blood in my brain, and needed to be seen by a neurologist immediately. At this point I do not remember much. My family and I have since talked about it, and they told me that I had surgery within the first 12 hours I was there. I had a ruptured brain aneurysm, and it was repaired with coils. When I woke up I didn’t even realize that I had the surgery. I had a lot of pain, and I was on lots of medication. I was very upset and confussed. I was in the critical care unit for 14 days. This felt like a nightmare to me. I have had time now to do a lot of thinking, and I know that I am very lucky to have survived this ordeal, but I am having a hard time with wanting to be my old self again. I use to be very active, busy and very happy. Just enjoying my life with my new grandsons (twins 1 1/2 yrs old) and enjoying my life with my husband, we have just become empty nesters. Our two children have both gotten married within the last 2 years, and both have their our homes. My husband and I were in a new stage in our lives, and enjoying it. Now all this has happened to us. I am confussed, have poor vision, low energy and sometimes feel very sad and lonely. I feel guilty sometimes saying “Why me”,
but I do feel very lucky to have survived it all, just having a hard time now coping with it. I hate the fear that my family went though, the set backs I have with not being able to take my grandkids to the park, or just play with them, or even picking them up some times. People are all telling me, that everything is going to get better in time, I do trust that will happen, but why do I feel like this now? I would love to talk to anyone who can relate.
Thanks
Gina

Hi Gina,

My annie did not rupture, but, I am 3 months post op with liquid embolization surgery. I can assure you that I have many of the same feelings, lack of energy, short term memory loss and fear of the unknown. Everything is getting better with time, for me, learning to slow down and listen to my brain and rest has been very hard to do. Rest, naps, and don't over exert yourself will encourage the healing process.

This support family is great and has helped me in the short time that I have been a member (just a few weeks ago that I joined). I too was feeling lonely, sad, wondering if I will ever be myself again. The "after annie" life will probably always be different, but, I think that it will be for the better. I am truly blessed to have the annie discovered early. It began as a wait'n see annie, but, grew very rapidly over a 14 week time period. Keep posting and reading the positive stories that come from this group. I find that it has been full of positive energy and encouragement!

My thoughts and prayers with you!

Blessed with Life,

Karen

Hi Gina,

My aneurysm ruptured at 11:00 pm July 15, 2011. I too was life flighted to a better hospital, had coiling surgery, and spent 14 days in the icu. I have the some of the same feelings as you do - especially the low energy and sadness. My vision is ok, but the doctor said one wrong move on his part and I would have been blind. I am 44 now, but was 43 when the anuerysm struck. I still think about this event every day and I also still have headaches every day. Sometimes they start early in the day, sometimes in the afternoon. Sometimes the headaches are strong, sometimes mild. I am trying to move on with life, but it is difficult. I go back to work in a few weeks, which makes me a bit scared, but I think it might be what I need to move on with life. Good luck to you. Susie

hi Karen, thanks for the words of encouragement, i will try and post and read other stories. I want to stay positive and listen to my body, it now tells me when or what i can do. Just have to adjust, and keep smiling. I am truly blessed, and so are you. Keep strong, and in touch.

gina

Hi Susie,

Thanks for your reply, it means alot to me. Happy belated birthday, i to had a birthday within all this. We both had this happen to us almost at the same time..crazy isn't it. Do you remember most of it, or did your family have to tell you? I am having a hard time coping with it. I really hope your headaches get better. I don't think what i am getting are headaches, but like neck aches. My neck is so stiff all the time, i am so afraid of taking medication. I hope you feel better soon. You will be the first person i think of when i remember what happened on that day, that way i will remind myself that i'm not the only one. We both were very luckly. Good luck to you and keep in touch. gina

Gina,

Happy belated birthday to you to. Weird how we are in different states and the same thing happens to us pretty much on the same day and we are both so fortunate to be alive. I have read that from 40%-60% of all those who have an aneurysm rupture die. Out of the remaining people, 1/3 have serious deficits, 1/3 have mild deficits, and the remaining 1/3 have no deficits. so, we are in a very large minority. I think of that when I am feeling down and it makes me feel better. I only remember some of the things, the rest my husband had to tell me. I live in a small cow town in southern Ca and the drs here are stupid because they thought I was having a panic attack. I could barely answer any questions. Thank God for my husband or I would be dead now. Finally a more skilled dr. came on duty and listened to my husband. The CT scan clearly showed blood, but he didn't see it! The drs. in San Diego were so mad when they saw the ct scan because the blood was so obvious. It took about 7 hours to finally be life flighted out of here. I only remember opening my eyes, looking around, and thinking "I'm being life flighted this must be really bad and it's going to be expensive." Then I was out again.

I don't have neck pain. My head just hurts on the right side behind my eye where the aneurysm was located. I sure hope your neck pain goes away. As far as the medicine goes, I'm no big fan but I will take it. I take tylenol and ibuprofin pretty much every day. I only sometimes take the stronger stuff like vicodin or percocet. Why are you afraid of taking medicine? It might make you feel better. Just stick to something mild.

Talk to you later, susie

It's very important to listen to your body. I know how you feel, just and adjustment period. Time heals and rest, rest, rest!

Karen

Susie, I suffer from chronic daily headache and so unfortunately know alot about head pain. Please be careful taking analgesics everday as they can cause rebound headaches. Regular use of Tylenol or opiates puts you at greater risk than Ibuprofin which is a NSAID (lower risk). Make sure your doctor is aware of how much you are taking and if necessary he could switch you over to a preventative for the pain.

Best wishes

Wendy

Thank you, Wendy, for your reply. I take on average one tylenol a day. Right now I can't take Ibuprofin because my angiogram is scheduled for next Wednesday. They wanted me to be off of those medicines that thin blood. I hope to be off of meds totally soon. Maybe I need to suffer through some of those headaches? I don't know.

Thanks, Susie

Hi Gina, Things will get better with time. My annie ruptured 6/3/07; I was coiled, then got a shunt 10 days later, 8/9/08 they were going to add more coils, couldn’t get the coils in so used the liquid onyx. My doctor thought the aneurysm was going to rupture again and if it did it would be fatal. He knew that this was going to cause a stroke because he was eliminating the artery with the aneurysm. After the rupture I was in ICU for 2 weeks, in the hosptial an additional 2 weeks after that and then home after a full month in the hospital. After the surgery in 2008 I was in the hospital about 2 weeks. I think that once you get home and start feeling better you start thinking about everything that happened and you start going through an emotional roller coaster. You need more time to heal physcally and emotionally. It is hard, I agree. I guess we all have something to deal with and this is what we were given. I also have a grandson who is 2 and and it is getting easier as he gets older but physcially I can’t do what I used to. I have some coordination and balance issues from the stroke. The fatigue did finally improve but it does take a really long time. Hang in there and don’t fight it, if your body wants rest, listen to it and get your rest. That is how your body heals. Good luck to you and keep coming here it’s a great group of really caring and understanding people who know exactly what you are going through. Take care, Shelly

Hi Gina,

Welcome to BAF! I am just about 4 months post op for the PED (pipeline embolization device) stent repair of a 9mm internal carotid artery at the ophthalmic artery annie on the right side. I also have an ICA annie on the left ophthalmic artery which is 2mm and is on a watch and wait to see what happens with it. I just turned 50 years old in August and am so glad I lived to see my 50th birthday! Both of my annies were found incidentially and I thank GOd every day for the pain down my left arm which made me go to the ER that day.

Let me start by telling you that everything you feel is normal and everyone here will attest that at one point or another they have gone through the same feelings. THe best advice I can give you is to listen to your body and your brain and they will tell you when it's time to rest. Also, there is a great letter posted somewhere here in the forum section about your wounded brain. Read it..... I keep it posted in my office, on my fridge and near my computer to remind me just how lucky I am and how I need to slow it down and "listen" to my brain.

I can also attest that I still have what I call my "bone tired" days where I literally ache all the way into my bones and I just sleep the day away. This is what I call my "after annie" life and adjusting to it has been a challenge. Although I did return to work 3 weeks after my surgery, I did, and still do at times, suffer with depression, fatigue, and just plain tiredness (physically and mentally). I do promise you that it will get better with time, but you really must listen now. I can honestly say that every day things get better, maybe not as fast as I'd like, but I take one day at a time.

I can also tell you that BAF saved my life and the wonderful people I have met here helped me through the toughest time in my life. As I"ve stated many times, even though I have the most wonderful family and friends to support me, no one understand me like my BAF Family.

I will keep you in my thoughts and prayers and hope that you continue in your healing process.

Best wishes,

Linda

Hi Gina and Welcome to our own little word of understanding and support...

I did not have a ruptured annie, mine was found after my mother's doctor recomended that all her children be checked, she has aneurysm's. I was found to have a 6mm annie that could not be coiled so the other option was clipping. Anyhow the rest of my story is too long to get into. All I want you to know is that time and support is what you need. After going throug something like what you went through all the emotions as well as the normal body balance is different for awhile. Take the time you need, get the rest you feel you need. Seek the support and total understanding you need and time will take care of the rest...

Thoughts and prayers..

Kimberley

Hi Again Gina...and Welcome...!

Please keep in mind...this is a long journey...and it has only been about 3 months...!

Gotcha in my prayers...Colleen

Hi Gina.

I am 49. I had two brain surgeries this summer, two 7mm annies that were thankfully caught before rupturing. One was clipped June 6 and the other was July 13. It was one of the worst summers of my life. My short term memory isn't the best now, but I am told it will get better. I am exhausted around mid afternoon every day, so I am sure to nap when I can which helps so much. I don't know if you will agree with me, but I decided to go to the gym and exercise 4 or 5 days per week. I joined with my 24 year old daughter three weeks ago. Exercise is very helpful for our mood I think, it keeps us active and feeling good. I'll admit it wasn't easy at first, I started slow and work my way up to whatever I can handle. My surgeon said it was ok for me to go. Maybe take walks when you feel up to it. I started walking outside too. I look at the bright side, my mother had a ruptured annie when she was 49 and lost her speech and her right side was paralyzed so I feel very lucky and I think you are lucky too. Time heals. I hope you feel better every day. Try to get all the rest that you need.

Take Care,

Lisa

Hi Gina,

My daughter Lana had a rupture a little over 2 years ago. She was six and 3 days away from Kindergarten graduation. As the mom of a child that suffered such a tramatic event I struggle so much with the "why". I try really hard to deal with the 'now' as much as I can. I think it helps to just say that it sucks that things have to be different than they were. I had to grieve the loss of the 'old Lana' and I think you need to give yourself permission to acknowledge that things after a rupture can really suck. It isn't being inappreciative that you survived, it is just being honest. Lana also has vision issues- she suffered at least a couple strokes because she had vasospasms. Just adjusting to seeing differently can really affect every single aspect of your life and get you down. Lana has various problems but right now her vision is what affects her the most.

After a rupture your moods are often all over the place. In the rehab hospital they told us to expect the full gamut of the emotions from her. We were thrilled that she seemed to enjoy the rehab and getting to play with all the new equipment. But when we got home....she was often in tears but couldn't explain why. One moment she was cheerful and the next we couldn't seem to coax a smile from her. And she still has bouts of extreme exhaustion . I think only someone who has seen it or experienced it themselves can understand. When Lana is tired she isn't just sleepy, she's almost like drugged. She is flat out DONE...she slurs her words, gets really sloppy footed and clutzy and it's practically impossible to wake her. For her it takes just knowing when to not push her body. She's a kid so it is easier for her, I think it must be harder for an adult because we seem to always have an agenda to get done. But you need to recogize that your breaking point is going to come sooner so you don't get as exhausted. I hope you are feeling much better soon.

My thoughts and prayers are with you!

Shawna

Hello Shawna

Thank you very much for writting to me. I joined this group last week, and had a very hard time reading everyone stories, it was heart breaking for me. Everyone is so kind and scared, but mostly going through the same as me. I read your story today, about 10 times, i first started to cry, and thought , OMG it happened to a child. I am truly so sorry that this has happened to your little Lana. I am a mom and grandmother now, the thought of this happening to my kids scares me. When my kids were sick, i use to say i can feel their pain. I can not image what you went though during this. I hope and pray that your little girl gets better, 100% better.

Your story has really helped me today, when i see and feel all my set backs that i am experiencing, i will think of your little girl and you. It takes a huge heart and strength to get over major life threathing illlnesses. I have always be the strong one in my family to take care of everything and everyone (my husband is great , but i have always taken that role). I have never been sick before, and to see the look in my family eyes when i did, that was verrrrry hard, i was scared for them. I will never say "Why me" or What if" any more. Your little Lana has inspired me to be good and positive to myself and to accept my " new normal " and help accept improvements when my body is ready.

Thanks for sharing your story, i will pray for Lana and your family. Give Lana a hug for me.

gina

Gina, you are so sweet. I know what you mean about being the strong one for your family. When my mom became sick (not an aneurysm, but she has permanent health issues after becoming sick after an operation) it was not just scary...it knocked us off our feet. I think we all thought she couldn't get sick because she's the rock. It was hard for her to become the patient after being the one who fixed things for so many years. She wasn't allowed to walk for a solid month and she said "this is a blow to my pride!". But we loved her SO much and we wanted her better SO badly we would have done anything to help. I'm sure your family feels the same way about you.

Lana sends a hug back to you. She's home today because she had to have a specialized CT. It was a hot mess- 9 needle sticks and they couldn't get the IV. They need a bigger needle for the CT dye and her little veins just didn't want to cooperate. Brain aneurysms have a way of making you tough though....she told the nurses she was going to tell her classmates that a porcipine attacked her. LOL! We get to go back and have them try again in a couple days. I'm going to make her drink a ton of water and hope for just one needle stick.

Shawna

Like others have said it takes a long time for you to begin to feel better. Even then it’s your “new normal”. My 3 year anniversary for my unruptured aneurysm was September 26th. I really had no complications and only spent 3 days in the hospital. Still I am not the same. No one could be after something like that. Your husband still loves you. Your children still love you. You need to give yourself time. This is not a sprint it’s a marathon. A marathon with no time clocks. One of the things that helps me is I don’t waste time thinking about why I was lucky enough to survive. That question is irrelevent. The important question is what am I supposed to do now. I guess you still have some things you’re supposed to do.

thank you Thomas