New to being a survivor

General personal-stories
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Hi I’m new to the support page and new to being an aneurysm survivor. On November 20th, 2023 I had an episode where I was vomiting, lost hearing in my left ear and the world was spinning, we went to the hospital and was told you have vertigo. It took three days but I was sent to a physio therapist to try a few maneuvers to unblock my ear and stop the spinning. I was thrown around on a table a few times and when nothing was working the therapist sent me back to the hospital.

This time different doctor did a CT scan and came back with the news that I had an aneurysm and needed to go to the big fancy hospital ASAP. An ambulance whisked me there in an hr. A day later I was on an operating table being told that I needed coils inserted through my right wrist. I was told that the repair may cause a stroke and it did. I had a 1.5X1.4 cm aneurysm on the left cerebellopontine that took 8 coils to repair. I was in the hospital for 4 days recovering. I was told I was very lucky to have survived. We all are.

Its still very new. Its been 57 days since the procedure. I am deaf in the left ear and have some blurriness in the left eye and so tired all of the time. I’m still waiting for my follow up MRI and a subsequent chat with the neurosurgeon. I can walk but it looks like a had a few drinks. I use a rollator to traverse the neighborhood.

I was told the cerebellum controls balance and movement and plays a role in language processing and memory as well. So far the language is ok but sometimes I will point at say a dresser but it will take several tries before I can say the word. I do a lot of pointing at things. My memory is ok but balance is not 100% yet.

What is anyone’s advice on how to move forward in my healing journey. So far I nap a lot and go for walks as often as I am able. I miss old me and want her back. A few of my friends have stopped returning my texts or calls. I guess they are scared of me like I might shatter into a million pieces or stroke out at any moment. I know I should be gentle with myself but its hard. I’m angry I can’t drive yet. I miss my freedom. Is this all normal and a part of getting better?

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@Wendybeans
Welcome to the club that no one would like to be a member of. But here we are, trying to lift each other up. I’m a survivor myself from a ruptured aneurysm in October 2020 and I got a stent and more coils six months later. The only thing I would like to tell you is that it takes A LONG TIME TO RECOVER. Longer than you think. Your old self is still there but as for now, this is your new reality. I believe that you will get better but your brain needs more time, if you need to take a nap, just do it. The recovery is not linear, one day you will feel fine, the next day you have to pay for doing to much. Most of us have been there, done that. You are only 57 days away from your surgery and you will be better with time. I know that this is not what you want to hear but your brain needs more time. We are here for you when you need to talk.

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Hey Wendy,
Ouch!! Lots of that sounds very familiar ‘…the world was spinning’, the misdiagnosis etc. and my initial diagnosis was over 25yrs ago now. Over the years since I’ve had 5 further neurosurgeries and am presently trying to avoid a 7th.

Big, HUGE +1 to @oct20. I couldn’t agree more

I tried to force my recovery, make it happen quicker, push past the pain. I pushed too hard, too soon. Something went POP and I wound up back on the operating table. It was silly of me really. We cannot recover quicker than our body allows. I pushed too hard and my body pushed back. I pay for that each and every day. As I often tell others, “Listen to your own body” it will tell you when you’ve reached ‘YOUR’ limits, but you need to listen. My signs initially were subtle, so I ignored them. They increased. I took the attitude “This things not going to beat me…” so I pushed a bit more, convincing myself I was building stamina. Bad idea, BAD BAD IDEA. Previously I had 2 speeds FULL TILT and stopped, post surgery OMG, I was lucky to get to 1/2 speed without being symptomatic and I hated it. I wanted the ‘Old Me’ back, but that’s long gone now.

Be kind to yourself. We can often be our own worst critic, expecting more from ourselves than we would expect from others in a similar position.

SLOW DOWN. Part of healing is allowing the body to also adjust. Technically, you’ve had a brain injury. You need to allow the changes to normalise, that takes time. Sleep is when the body recharges, so don’t be too worried about the naps. Walking is a good thing for balance, but it can be exhausting, so short walks or lots of rest stops can be useful.

This recovery thing is NOT a straight line of progression, some days I can conquer the world, some days it conquers me. I just never know what today will throw at me. I’ve had to learn my 'Signs of Pending Doom", what triggers those symptoms and learn how to best manage it all for me. I have a few “tools” I use, from medications (Both lesser strength and high dose) to relaxation techniques/hydrotherapy, to a dark, silent room with no stimuli, where I can isolate. These are some of my management tools. You too will learn yours.

Merl from the Modsupport Team

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Oh my, I walked like a drunken sailor for a couple of years or more. Always bearing to port side (left). When I ruptured, I was taken by helicopter to a big hospital and was treated to what I call spa therapy for 26 days.

Both Broca and Wernicke areas were damaged so there was some odd speech going on. Speech therapy helped a lot with stutter and aphasia. I had a PCP who didn’t know what to do with me, and although my wonderful Neurosurgeon wasn’t familiar with services in the county I resided, she would send in the order for anything I wanted. I started with PT and then ST on an outpatient basis. If you can get speech therapy, that will help. Also look to see if there are any stroke support groups you can get to in your area.

Music helps a lot with word finding. Hopefully you have a PCP who knows what’s available where you reside. When I determined my brain wasn’t working correctly, we went to see a Neuro Psychologist who tested me. BH would drive me but Dr. Gary wanted me to try driving myself. His office was in our rural county’s “big city”. I took every side road I knew to get there and I was a blubbering mess by the time I arrived. I was able to use our county’s public transportation services to see him. I took a short bus one time but I was not happy with it. The driver got lost and then dropped me off about a half mile from where I needed to be so I was late. Dr. Gary wasn’t mad at me, he was outside looking for me when I came walking up. First thing he did was call the public transportation company and gave them an earful. He felt much better he said after that call. The driver who picked me up was mad because I was two minutes late getting on the bus and I received an unkind lecture. But she went to pick up another rider who was 20 minutes late and wouldn’t let me get off after the five minutes she was supposed to wait and then leave if the person didn’t board.

Dr Gary encouraged me to try driving again and I did. I’d known the man for several years when I worked and I didn’t want to disappoint him. Odd right? Especially since we had never met in person. It wasn’t easy and it was well after my second procedure six months after my rupture. I could not have the radio on when I drove and I would set the “do not disturb” so I couldn’t get texts or calls. 10 years out, I still don’t drive when it’s raining hard nor at night due to the headlights. I always wear sunglasses when I drive. Sometimes I have to blink a lot with my right eye to keep it working and give my brain information.

You will find yourself but as Merl and @oct20 share it takes time. How much time is why we need to practice kindness and patience with ourselves. It’s a great lesson to learn and will serve you well. But you may be different than you were before your procedure. That’s okay! I am not the same as I was in any previous decade as I look back at my life. We are always changing. However, the core of who we are is still there.

My Neurosurgeon has taught me to hydrate, eat protein, hydrate some more, rest and repeat. Hydration and protein are very important for our brains to heal. I need a minimum of 90 grams a day so I use protein drinks and bars. You may want to reach out to a registered dietitian for the proper amounts. Your Neurosurgeon’s team may know so you can probably start with asking through your portal.

To answer your question, yes it seems pretty normal to me. The anger may really be frustration, either way learn to do relaxation breathing and practice it all the time. It seems after we experience what we have done to our brains, we learn who are really true friends and who are acquaintances. It can be difficult. We try very hard to thank those who have supported us every year since I ruptured. There are a few who have always been there and then there’s some we meet that are added to the group and some who are no longer part of our support system.

Your brain will heal when the neurotransmitters find their new path. Always keep that in mind.

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Greetings, Miss Wendy, and welcome to this virtual neighborhood. I am relatively new here too. The Mods and fellow survivors, who are on their way to becoming thrivers, are some of the most supportive people I have ever met. You are in good company and great hands.

A quick question for clarication, if you don’t mind. You said that the coiling procedure induced a stroke. When the CtScan originally detected a 1.5X1.4 cm aneurysm before the endovascular procedure, was it in ruptured form? You don’t specifically say, and I’d rather not assume important info.

Thanks in advance and welcome again.

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Hello Wendy,

Welcome to the group. Everything you’re saying is familiar, and still occurs for me. Please be patient with yourself and try your best to live in your new normal. Do what you can, when you can, and rest when you need to. We are still who we are, we just have to do things differently, and make adjustments. I don’t remember who, but, music, quiet, and isolation helps with the over stimulation. It can be strange at times because no one truly understands what you are going through. We are all in this together. Praying for your recovery. I am very over stimulated with light and sound, so I find myself comfortable in my aloneness with my pups. Remember! Patience, patience, patience.

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The only advice that I can offer is to be gentle to yourself. I had a ruptured aneurysm in 2020 and I still have lasting effects that will never go away and I have learned to accept this is who I am now. I still think of my old self pre aneurysm and think I miss her. It does get better health wise and mentally. I have been going to counselling sessions to help me with the anxiety and I am on medication as well. I try to remind myself that I can only do what I can each day. I tell myself it is okay on a regular basis.

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Hi wendybears,
Thx for sharing your journey. Yes we are on a new path. In April of 2020 I was in flight training at American Airlines learning a new aircraft. I’ve been with American for over 30 years and was always fine during training. This time however I was struggling. My instructors sent me home for a break and while home I had a deep strong headache….the next day I was very lethargic and slept most of the day. My lovely wife came home and tried to wake me up around 6:30pm. When I awoke I was showing signs of a stroke… my stepson who is a paramedic told my wife call 911. It saved my life. The did n MRI and found a 33mm unruptured aneurysm! The next morning the aneurysm was coiled and my new path had begun. Before aneurysm I was the picture of health 60 years old, still had a 6 pack and very active. 3 years later I struggle to walk down the street. No paralysis just major fatigue… Thank God I can still drive and am striving with the help of my family to be more active again. My doctors have actually cleared me to fly again and I’m just waiting on clearance from the FAA. For me I pray for motivation again. I could lay on the couch all day on my iPad. That’s not good. Want to be active again. I feel God spared my life for a reason because most aneurysms burst much smaller than 33mm. Past 3 years has been a time for reflection and we have moved closer to my grown children and grand kids. I think the think to strive for and I pray for it is perseverance. God bless you Wendy and May he hold you in the palm of his hand as you walk this new path we are on.:pray:t2::pray:t2::pray:t2:

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Hi Wendy, I understand wanting to be your old self and for a while I thought I would never be the same person ever again. It took a lot of time and I’m still trying to better myself but don’t give up, if I have learned anything from this ordeal is that we are all stronger than we give ourselves credit for.

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