In need of some inspiration

Hello, my name is kim I’m 45 years old and on February 14th 2021 my life changed, here is my story one week before 02/14/21 i had savere headaches just assumed it was a migrane but come to find out it was an anyarism that had ruptured and bled in my brain, then on 02/14/21 i was at a flea market walking around felt fine no issue except a slight headache then all of a sudden my head made a popping sound, i lost my hearing in my right ear and my head had so much pressure i felt like it would explode and my eyes would pop out. about 15 mins later my nose started to bleed and wouldn’t stop. I got to the hospital had a ct scan and was told i had a bleed in my brain, and that i had alot of extra spinal fluid in my head, I was very scared when i was told and was not sure if i would live, i don’t remember too much after that but i do know i met with the neurosurgeon right after being told about the bleed, i went in right away for a angograhm to see what was going on in my brain while in surgery the neurosurgeon did a clipping on the left of my head and a drain on the right side of my head i was then put in a medical coma after my surgery while in the coma i had a stroke which made my brain bleed again and i had to go in for another surgery. I was in a coma for 4 days and then spent 12 days in the Icu, now i have anxiety about every pain in my head my family tells me I’m over reacting that it hasn’t been that long but i feel like no one understands. My Dr told me i will never have another anyarism but i panic at every pain, I’m afraid i will have another stroke. I think to myself why me, i have a horrible time remembering things my balance is off i have a headache everyday. I am a smart woman but simple things that i should know i dont know anymore, i can be in the middle of a sentence and forget what i was saying its so frustrating and i feel like it will never get better. I thank god i wake up everyday but i feel like its a constant battle for me to get even the simplest of tasks complete. In my mind even though this happened I feel like i should be able to do the things i did before this happened and i can’t, its just so frustrating to me. Will i ever be the same again? What should i expect during recovery. Is all this I’m feeling normal? Im very confused and i feel very damaged at this point in my recovery. I keep trying to tell myself its only been two months i shouldn’t expect so much but it doesn’t help, so i figured i needed to talk to people who know what this is like maybe i wont feel so alone anymore. I just hope and pray this gets better and don’t feel like this forever. I have just had a MRI done which found a cyst in my neck and I have had another CT done which has noted that i have significant fluid in my brain again at this point I may have to have a drain put in which will be permanent and to be honest I’m freaking out about it. Just curious if anyone can help me not have so much anxiety about this situation. Thank you for letting me get this out I’ve been holding this in since it happened.

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@Kim2 I am not an expert, but I experienced a ruptured subarachnoid aneurysm myself in late October last year. I am 20 years older than you. I had a drain put in during my two week long hospital stay but I didn’t need any permanent drain. I also had vasospasm, I don’t remember much of the time in the hospital. It seems to me that two months of recovery time is too short. I think other members can agree on that. I experienced fatigue and had to take naps. I found it difficult to get anything done, I had a plan but not much happened. I started to go for walks and I gradually gained strength and energy. Around four/ five months after the rupture I started to feel like my old self, maybe I could say the “new me”. I can’t explain what is different, maybe it’s just the way I feel inside. My husband says I’m back to where I was. We are all different but hopefully this could help you to hear. I’m now two weeks post my second surgery, I had to go back for a stent and more coils. The surgery went well and I feel fine. Maybe just a little bit tired.
We have been through a major health issue and it doesn’t always show on the outside. It doesn’t reflect how we might feel inside. Have you talked with your doctor about this? I hope you will find stories in this forum that helps you going forward. It helped me a lot to read about what others have been through. For medical advice I would say talk to your doctor. For emotional support from people that has gone through similar events, this is the place to be. I wish you all the best, you are not alone, stay strong.

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@oct20 thank you so much for your reply it helps me to know I’m not all alone in this process, and i just need to convince myself that this is going to be a long road but having this group to share my thoughts with i should be just fine.

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Hey Kim,
My name is Merl. I’m a member of the moderator support team here on Ben’s Friends and I too am a neuro patient. I can assure you everything you are feeling is normal, well, it was the same for me. Post surgery every ache, every twinge and I was questioning ‘Is this it?’ Now, I look for a progression of symptoms. A headache, that’s normal for me. But if that headache progresses to numbness and then progresses to nausea and then vomiting I need to act. These are my signs there’s an issue and overtime you too will learn your signs of what is ‘Normal’ (as if any of it is normal) and what is a sign of ‘Act NOW’. But I can assure you ALL of those post surgery side effects you explain are not out of the ordinary.

That ‘Why me?’ question is normal too. ‘What caused this?’ ‘Was it me?’ and these are questions that nobody can give a direct answer to. I use to beat myself up something terrible about it all. Let’s just say I certainly wasn’t exactly a clean living, healthy saint, so it could all easily have been self inflicted, but going around and around in a pit of self blame can be self destructive. I had to make a conscience decision to concentrate on what I can do, not what I can’t.

I had this idea post surgery that I’d recover, back to normal and life would simply continue on. This was not the case. So I pushed myself. Somehow, for some reason I’d convinced myself I was just being lazy, so pushed harder but the more I pushed the more my body pushed back. My body was telling me “Laydown or I’ll put you down” but I did not want to accept ‘This’ so I kept pushing and it put me down HARD and I ended up back in hospital requiring further neurosurgery. Ahhh don’t do that. This thing called Recovery can take a long time, no, I mean A. L.O.N.G. T.I.M.E. Some people have the idea that neurosurgery is like any other surgery and 6-8weeks later all is healed and life continues on. But this is far, far from my reality. My last major neurosurgery was in 2013 and I still have symptoms today. I’ve often explained it like this:

  Some days I can leap a tall building in a single bound 
  (OK, so a bit of an exaggeration)
  But some days I'm lucky if I can even crawl out of bed.

Brain surgery does not just affect the brain, it can affect the whole body and that frustration can be HUGE. Acceptance of the reality of it all is key, I may make that sound easy. It is NOT. Nobody wants to accept this, but the reality of it is we have no choice. All of my ‘normal’ limits have evaporated, things that I used to do without even thinking about I now have to plan. My memory, once one of my better assets, has evaporated. I jokingly tell my wife ‘There’s nothing wrong with my memory… …Who are you again?’ and it is said as a joke but the reality of it all is VERY real. AND I HATE IT!!!

I’ve had the ‘joy’ (NOT) of requiring a few neurosurgeries, one of which was the insertion of a ‘Shunt’, a drain tube to remove the fluid from my skull. When they first told me I too freaked out “You want to do WHAT???” but, again, the reality was if the shunt wasn’t put in the pressure would have built up to the point that it sent me into a coma. I’ve had a few issues with the shunt like blockages and problems with the flow of fluid, but I’m still here, so that’s a plus.

If anybody ever tells you this is a simple journey they have NEVER been here. We know this because we live it too, so come talk to us.

Merl from the Modsupport Team

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@ModSupport thank you for sending me this it has helped me so much. I have ok days and not so ok days today is one of my not ok days I’m just worried that this will happen again, even though the Dr says it won’t i just can’t help but think it will. This group had helped me alot i don’t feel so alone anymore. I have no family history of this I’m the only one who has ever had them. I know this is going to be a tough long journey i just have to make myself get used to this whole new world i now live in, i have been a srong self-sufficient woman for a long time, i used to be able to do anything and now i can’t its very hard right now. Finding this community here has been the best thing for me. Thank you

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And that is exactly what we are here for because this can all be so isolating.
Thankfully, not everybody goes through anything like this, so how would they know? They don’t. I had sympathy by the truck load but that ‘Ohh you poor thing’ attitude gets really old, really quick. Nobody understood the realities of it all, not even me.

For many years, prior to my own situation, I worked in the disability sector, teaching people with disabilities independent living skills, so I had a good knowledge base and, honestly, thought I knew all about it. What I knew was the theory of it all. The reality is far more shocking, far more challenging than I imagined.

Merl from the Modsupport Team.

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@Kim2 welcome to our group and at the same time, I’m always sorry someone has to join. We are here for you. I ruptured back in Nov 2013 and your story on recovery struck a cord. Please give yourself time to heal. Think years, not days or months. Some folks just want the problem to not be so they minimize it, we can’t. Eat a lot of protein, stay hydrated and rest when you need to. Give yourself permission to start this long journey. A once strong, independent woman myself, it took several years for me to be able to attempt to do what I once did. And as Merl said, you will have good days. It feels like one step forward and three back but you will find yourself stepping forward more often. @oct20 put it in a nutshell, listen to her!

We are here for you,
Moltroub

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Hi Kim and welcome! What is happening to you is quite similar to me in some ways…I too was in hospital 2 weeks, in a coma 4 days and found myself not being able to do things I use to…meaning as simple as walking straight! After 2 months, I thought I was ready to go back to work and did…that lasted 2 days!:joy:…when I got back on the computer to actually work and use my brain, I was a disaster…not only was I not ready, I took the whole year off…well, I tried again in August but same old thing! I also struggled with remembering what I was saying, literally stop speaking because I had no clue where I was going with my idea, none. I remember this well and it lasted a good while, I’m WAY better now and this rarely happens these days…please don’t be hard on yourself and more importantly, don’t be hard on your brain! Give it time to find its way…its been programmed to work a certain way for 45 years and now, just like that, it has to work in a different way…headaches come and go, I still get them but nothing Tylenol can’t take care of…I still get weird pains now and then and we are human, we wonder and even panic but as you will see, you’ll get a pain or headache and you get through it, next day on and on then you come to realize that it’s just part of healing, you learn to expect them and move on…I finally can do things I couldn’t so well last year like playing drums…my sense of rhythm is back, it was absolutely terrible for about 8 months then just like that, I sat behind the kit one day and it felt right…started with a basic beat and nailed it, got fancier and kept nailing it…I felt solid, I felt like me again…I put my sticks down and cried…this was my true sign that I had found myself again, sure felt good! All I can tell you Kim is PLEASE be patient, that’s all your brain is asking for, you’ll get through this, like @ModSupport @oct20 @Moltroub all said, you are not alone, we are all here with you and still living out our own journeys to the best new life we can give ourselves. Remember that deep inside, you are still there, you are still YOU! Who else can you you be?:laughing: I look in the mirror now, and 14 months later I see ME…you will too someday, chin up Kim, you got this! xo

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@Al.C thank you for your words of encouragement I sure can use them, and very well said i might add. I am learning thru everyone here that because of what happened I am not the same person right now, some day i hope to be but for now i am learning just roll with the punches. Someone just told me ( and I can’t remember who it was lol) that God doesn’t give us more than we can handle this happened for a reason. They were words well said. I’m alive still for a reason and i thank god everyday I am. It’s really great to come on here and talk to people who know exactly what its like. Thank you again for your words of encouragement.

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You’re welcome Kim and take care, one day at a time xo

Hi and welcome Kim. I also experienced a ruptured aneurysm, induced coma and then all the confusion that comes with the recovery. My neurosurgeon told me the healing time is a year, so luckily I didn’t think I was anywhere near done at 2 months. The reality is that the brain continues to rewire things for well beyond that year even, so that was an even bigger bonus.
So despite the fact that there is no cast or other reminders, you are still in recovery mode. Be patient and take the advice of our moderators stay hydrated, lots of protein and this is only the beginning of a L.O.N.G (Love how he did that) journey.

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Hi My Name is Rob, about 8 years ago I was giving a presentation at workman’s forgot a sentence. No headache no nothing 2 weeks later I was having an 8 hr surgery on my brain for a 14mm aneurysm. I constantly ask why me. My surgery was filmed for a major tv station in Ny. My son was getting married that summer and was asked how he felt I may not be at his wedding, well I made it and look back and say why me. God Bless everyone who had made it thru. I have some memory loss about 20 percent but I am here to watch my grandchildren grow up

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Kim ~
We’re all lucky to still be here after what we’ve been through. My first rupture was Oct 2011. My husband & I were watching tv & I got a massive headache to the point I didn’t want to move. He called my Dr, she said go to ER, he then called our24 hr nurse hotline, they said the same thing. So we headed over to the hospital, I walked in & triage took my vitals. They immediately sent me in for a CT where they found the bleed. Fortunately the ER Dr knew of a specialist about 30 min from here that does the coiling procedure so they put me in an ambulance & we headed up there. The bleeding had stopped so my surgery was the following morning. He put in 9 coils to fill the rupture. I have been faithful in all my follow up angiograms since. During these we found an artery in my neck that was 85% blocked, during another check something showed up behind my original rupture, this was 2 years ago. We scheduled surgery, as soon as he got in there the second one burst. If anyone tells you that you won’t have anymore, I’d find a new Dr. My dad had 4 ruptures, his last was a double rupture, he passed away 2 weeks later. I can’t stress enough the importance of follow ups. During the second surgery he put in 6 additional coils & a stent, I also have a stent in my neck.
Please be nice to yourself, your brain has suffered tremendous trauma,it’s going to take time to heal. I was 57 when I had my first one. I continued to work for 2 years but had to retire early, I don’t have the energy, stamina or confidence I used to, but it’s ok, I’m still here doing what I can every day. Please give yourself plenty of time to heal. :two_hearts:

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@Ginger_E my worst fear is having another it gives me a lot of anxiety to even think of it, so i dont i follow everything im supposed to do i dont want to miss any appointments at all. I’m still not able to work right now and i get extremely tired about halfway thru the day. I have talked to lots of people on here who have helped me get thru this and have given me some fantastic advice I have learned that I’m not going to worrie till I have to, I’m alive for a reason when its my time then its my time, but for now I’m gona take it one day at a time. I hope all goes well with you.

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In 2007 I was 49 years old and had a brain aneurysm burst at work. I worked at a Fortune 500 company. I don’t remember that day at all, along with 2 weeks after. 23 days in ICU and 10 coils. Discharged from the hospital and I couldn’t sit up let alone walk, plus Terson Syndrome (blind in my right eye). Eye surgery at 4 months to get my vision back. Then back to work which was too soon. 4 years later it grew back so another brain surgery. Incision from the base of my neck, up the back of my head and a hook to the left. My last CT scan shows everything is fine. Oh and in the middle of this mess I got breast cancer. Only took 2 days off. I am forever changed but our brain is a tremendous thing and can repair itself. I am not perfect or back to my “photographic memory”, but this is my “NEW NORMAL” and cherish each and everyday. I used to freak out when I got a headache and never wanted to leave the house in case it happened again. You will get past this. Just stay on top of all your testing and follow ups.

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Kim,
Welcome to the club that everyone would rather not be in but it is a club for survivors. I don’t think anyone can put a limit on how long the brain continues to heal. I am 18 years after my rupture and clipping and I hope to continue to get better in some ways. Initially, I needed a lot of naps. Fatigue is not really the right word for it, it is tired in your very center. So take naps and be kind to yourself. There is life after brain surgery but it looks different than the life I had before surgery. I was a type A, worked full time and took things for granted. I have mellowed and have a new life. It is not better or worse, just different. You are also having this health crisis in the middle of a global health crisis so it harder for you than it was for me. I would not bet against you, you are a fighter. You have just begun. J Draz in Minnesota

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hi Kim

I am so sorry. you were experiencing hard time.
Apr 4 2021, it was my third anniversary for being survivor (life).
I was loosing all: hand, feet, not eat, vision etc .

My doc put me on anxiety pills since I am easy to get panic attack and they preferred me not to see what you see, but think what you could do.

I started to exercise, speak, read etc without worrying about my situation.

Of course, I am trying to attach with community group (bible class).
You need to find the right one,

My doc told me , the hard one passed.
Keeping positive helps us to move
Be patient to ourselves.

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Kim2,

I had a ruptured brain aneurysm, and like you, I spent weeks in the hospital and had a very long road to recovery. That was 11 years ago, and I am happy to say that I have fully recovered, but it wasn’t always easy. The first year or so, I had terrible headaches and the anxieties that went with them. My balance was so bad that I held onto walls when I walked and had to be helped in the shower. Walking into a doctor’s office created extreme panic, and I am someone who never had an anxiety issue in my life.

The good news is that with the passage of time and a lot of help from friends and family, I got back to normal, or whatever my normal is. The bad news is that it will take time, and as unbearable as it can be, you will have to trust you will recover. The fact that you were able to write this very articulate post shows you are well on your way. There are many people who aren’t so fortunate.

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Welcome Kim!
Grateful you are with us! I was 41yrs of age at the time of my surgeries. I now am 62! So very Blessed to be here. I share that writing helped me a great deal, as my cognitive abilities were not good. I would get confused, not able to find my words. Felt like what would go in, didn’t attach to whatever makes us understand what’s being said. I guess what I’m saying is my processing took longer for me. Time really helps, patience, not easy, but needed…
please be gentle with yourself. Healing happens every second. We ALL are here to support you on this path you’re on. Praying for you and sending my wishes for a Complete Recovery💜

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@Blessed1 thank you this community is what i really need right now. I am still fighting everyday been dealing with some awful headaches had a lumbar puncture the other day then an emergency ct scan yesterday and on tuesday i will be going in for a surgery to have a permanent shunt put it i have alot of spinal fluid in the ventricles and i have aspetic meningitis too, hopefully this surgery will help with all of these issues. I’m not looking forward to another surgery but I will do anything I have to, to survive. My prayers ant thoughts are with everyone here.

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