I can’t seem to get over the fear of something happening still after all these years . I bang my head or if the scar pulls I fear the worst and it becomes obsessive I know I am one of the lucky ones , but I am always in fear. No one in my family gets it so I struggle alone . Just had to finally say it somewhere thank you
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Hi @pattiann
I belong to a different community of patients but the worry about a haemorrhagic bleed is the same. I had a risk of a bleed until I had a catheter embolization procedure done a number of years ago. While I was waiting for an operation, I worried about the same things as you, perhaps. The reason I felt I worried was made up of a few things
- A haemorrhagic stroke is scary. The impact of it is unpredictable and the outcomes can be very poor or even the worst, as we know.
- The unknown is perhaps even worse. Any kind of unknown future of this kind is very destabilising.
- The lack of control over it is even more destabilising.
So while I was waiting for my operation, I did a few things and the purpose of those was to address the last point really, it was for me to do something to make me feel I was doing what I could to make things less impactful perhaps. It was a long time ago and technology has moved on in the meanwhile, so I put my wife’s phone number on the lock screen of my phone, with “ICE” (in the UK, to an ambulanceman, this means In “Case Of Emergency”!) Nowadays, there is a Health or Safety app that you can record your medical and contact details in that can be accessed by anyone who finds us unwell.
I also bought a medical bracelet and had my medical details “engraved” on it, along with my wife’s mobile phone number and a statement, “in case of stroke dial 999” (or in the US, it would be 911).
And I talked to my work colleagues about stroke. I made sure that they didn’t assume that it was an old person’s trouble and they might suspect it if they found me unwell in the office.
Are there any things like this that you’ve done to try to help yourself? For me, I felt like I was doing , something to help myself even if it was small.
Lots of love,
Richard
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Good morning! 18 years of having to feel constant fear can certainly take its toll on one’s self. As I understand it, having a craniotomy doesn’t require the follow up imaging endovascular procedures get. A few of our craniotomy members do get some type but not many, and rarely after so many years. Have you had any follow up visits? Do you see a neurologist?
Different people respond to stressors differently. We have a rule in our home that we do not tell each other how the other feels or what they should be feeling. We do the same with the plethora of the children in our family no matter how old they get. We do ask a few questions to help them with whatever their feelings are. If you’ve been reading the topics you probably already know I’m going to ask if you practice relaxation breathing. The important thing is to practice it all the time, not just when you’re already in the depths of an emotion that is seemingly overwhelming. Once it becomes a part of you, usually several weeks being practiced several times a day, you can then move on to what your body does initially. Everyone has a different “tell” rapid heartbeat, clenched jaw, tummy tightens or gets upset….theres too many to list. When you can identify yours and this may need some help from someone else you start your form of relaxation breathing immediately. You focus on just the breathing and no other thoughts. It keeps everything from BP to heart rate, to muscles relaxed because of the oxygen you’re putting in. Many time when we feel a strong emotion our breathing gets shallow and rapid which doesn’t give us the oxygen we desperately need. When we learn our “tell”, we can learn our triggers. I won’t get in to any of those. Decades ago a friend and I were in their vehicle during heavy, fast moving traffic when a trigger caused a panic attack. Definitely not a good thing. But she wasn’t responding to what I was saying so I got her to start breathing deep and slow. She says to this day it saved us, I’m not sure about that but she sure did regain control which was a relief nonetheless. Her trigger was something on a sign on one of the billboards we had passed.
Relaxation breathing is just a tool in a tool kit. It’s a very important tool. We certainly want to control our lives and not be controlled by our aneurysms. There’s a lot of us who blame our aneurysms for a lot of stuff when it may not be the cause. It’s just so darn easy to lay blame to. A therapist is someone who can help you understand better and become a stronger survivor and not a victim of your aneurysm. They can teach you a lot more tools for you to use. Hopefully you can find a good therapist. A good therapist is priceless as they not only use talking, but they actually teach us skills to move forward in our lives.
We do understand the fear of the unknown many of us feel it at one time or another when dealing with our aneurysms. Keep talking to us, realizing we can’t replace a good therapist, just folks who have experience. We are always here.
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I completely understand. You are not alone. I had my surgery two months ago and have been feeling constant fear and anxiety. You need to be kinder to yourself and understand that you have been through a traumatic event, mentally and physically and that will take some processing and time to recover! If it is possible, maybe you should consider seeking some help, like therapy or emdr. I don’t want to give u advice on what to do since it is your decision, but that is what I have decided to do in my situation! Wishing you all the best.
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After my rupture l wss fearful every time there was a ‘new’ pain in my head. I have a second, unruptured annie. Emdr did wonders. I would suggest you give it some consideration. I had a pain just yesterday that felt different. I just waited to see if it got worse and it was fine. I gave it attention, but not with fear. Hope this helps.
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I’m ten yeasrs post rupture and Clipping, so I understand where you are comming from. I asked my Doctor can it happen again, and re reassured me I am OK. All I can say is I enjoy every day at this second life, and I am gratefull for the love and support of my wife. I feel for you nad hope you can believe the health system where you live and be gratefull for every day.
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This May was my 32nd anniversary past rupture and clipping. I happen to be of the opposite culture where I worry about nothing, which is not necessarily good. In the past 32 years I have had many falls from crazy sports and too many car accidents to count (not my fault and many I was just a passenger, I seem to be a magnet to others), and each time something happened my doctor worried. She immediately sent me in to get an mri to ensure no shift in the clip. Every time I applauded my neurosurgeon for doing such a good job and there had been no shift or concern.
I share this with a couple of thoughts. First, trust your doctors—you are here so they did a good job. Second, trust yourself—you know your limits and your body. Third, the fear is recognizable and understandable, and very much worth discussing with someone. If your family is not lending a healing ear, then reach out for a counselor—preferably one who specifically is training in post-medical trauma.
Good luck. We are here for you, too.
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Glad you had somewhere to share your fears. Just wanted to send you a big hug
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