My aneurysm ruptured in Sept 2024 and I was lucky to survive the SAH and hydrocephalus. I have been making good progress in my recovery but…
An MRI in August showed that the coils had compacted and the aneurysm is growing again. I was told this in January and I am waiting for a stent to be put in. However I still have no date for this and saw media reports in the UK about the length of time people are waiting in the UK for surgery.
I am trying to be calm about it all but today I am feeling overwhelmed and stressed by just waiting. I know this is not good for me but unable to get a grip. Just having a bad day
We all have bad days Sue, but boy can they suck! Whilst coil compaction is a common occurrence one would think the surgeons would put us nearer the top of the list than at the end of the list. Unsure what your media is specifically referring to what type of surgeries. Is it all types or perhaps just some types? Why is there a long waiting list? Can you email your people in Parliament and suggest they try to do something about it? Seems your taxes are paying for your healthcare, nothing is free. I hold a personal opinion on our news reports as they don’t always report in accurate detail like they used to for the last ten or twelve years. It’s gotten so bad, I rarely watch our news anymore as it just makes me frustrated and BH laughs at me for arguing with someone who can’t hear me.
I’m very ignorant about health care in any other country. I’ve learned from members here that Canada and the UK can be nerve wracking to say the least, so please excuse my ignorance. When you got your MRI in August was it your surgeon or your PCP who ordered it? Do folks always need to go back through their PCP to get to the surgeon? Are you able to reach out to your surgeon via your portal and ask when the stent will be placed?
As someone who has repeated attempts to occlude an aneurysm, I’ve found a couple things help. I allow myself but a few minutes to think about it once a day. For me, I do 15 minutes or so usually in the mornings. Headaches don’t scare us as much as they did when I first ruptured, in the first few years they did. But now we’ve learned all the signs that could cause concern and since my stent was installed, I just let my neurologist deal with them. My stent did not fully occlude my aneurysm as hoped, the neck still has a small amount of residual blood flow which was a disappointment to be sure, but for me to waste my life pondering on things out of my control is a waste of whatever time I have left on this planet. I truly have more important things to do.
To be honest, I probably do too many things I shouldn’t like not watching the weight I pick up. I do try very hard to keep hydrated, it does me good. Another thing I’d suggest is long walks with your pup. They take our full focus and get our hearts feeling good. If you have a hobby, focus on it for a bit of time. If you don’t have one, find something you’re interested in and try it. Yes, I get I’m suggesting planned ignoring, sometimes we need to do just that. Of course there’s always relaxation breathing that I promise if you do religiously it will decrease the stress you feel and lower your BP. When we’re stressed, our BP goes up which is not a good thing for us.
The last suggestion is vent all you need here with us. We do understand and we all need to vent.
Hi there Bordercolliemum - I’m a North American Bulldog mom.
I’m ignorant of how your health system works too. FYI I had a SAH on one side and an unruptured annie on the other. They coiled both back in 2018. One stent was placed a few months later and a second stent was placed on the other side 2-3 years ago. My surgeon delayed placing one of the stents until he got back from vacation. Although it’s not a perfect seal on one side, I’ve been told it’s minimal. I choose not to think about it. Absolutely refuse to ruin my day/week over something I can’t control.
I don’t know about you but when I get stressed, I get little ice pick headaches and it just makes everything worse. Keeping you in my prayers.
I am sorry for the delay (minor tech drama) but I have been thinking of you! How are you doing today? How is our friend Ms. Pippa?
Of course, like the others, I only have a surficial knowledge of what health care systems are like in other countries, but I am sure this extended waiting is anxiety-ridden especially as you have no clue (I am guessing!) how long this is going to take! That must be incredibly frustrating!!
I just had an extended thought to tack on to @Moltroub’s idea of hobbies, and perhaps you could find a charity or someone that needs help and use that to help fill your time? This Kindness Matters Guide from the Mental Health Foundation (UK) not only talks about the benefits that you will reap from it, but also offers up some ideas you can do. Take it for the $.02 this idea is worth, and do what is right for you, but it may be a way of filling up the time you are waiting.
Sending very good thoughts across the Pond to you and Pippa! Off to work!
Thank you for replying everyone. Health service here is difficult to navigate. Should be my GP who is my first contact but he knows nothing and always just tells me to contact my consultant directly or go to A &E. Tried ringing the booking secretary yesterday but no answer so I guess I am just going to have to keep trying until I get an answer.
We had a glorious spring day here yesterday so enjoyed a walk with Pip my dog.
Have joined rehab art therapy class a while ago and I really enjoy it and all the people there have had a stroke or serious head injury. I do some stuff at home now to distract myself.
I think you’ve got exactly the right approach. I have something called a brain AVM and I belong to a different support forum but a brain AVM presents much the same risks and worries as a brain aneurysm.
When I was going through the same as you, I found that my main GP was exactly the same as yours: didn’t really know anything about AVMs and blindly referred me to hospital. I eventually found one of the other GPs in the practice was much more interested in my AVM – its rare – and was far more interested to try to get me moving forwards. So if there are other GPs in the practice, try then each out to see if one is more on-side than the others.
I absolutely agree with your other advice and approach, which is that self advocacy is key and also if you can find out the secretary for the neurosurgery department at your hospital or for your consultant or who the specialist radiology nurses are, you may be able to talk to them about how you are and where you are in the queue.
I had my referral to neurosurgery in October 2016, I got to see the consultant interventional radiologist a month after the referral but then had to wait all the way to April 2017 to get to the front of his “elective” surgery queue. It was just as hard as you having to wait. I took up a project in much the same way as you describe: you do have to try to stop yourself thinking too much.
I did a couple of trips to A&E while waiting but essentially nobody was interested unless i was already lying on the floor eyes rolling: essentially we are elective patients up to that point.
I had a ruptured aneurysm and then a few years later it formed another below that required a stent and coils. Unfortunately Covid came along right about the same time and pushed my surgery date further and further down the line. The wait was nasty, the unknown about whether or not my recovery progress would be undone was in my thoughts far more than I wish I had allowed. I even ended up with stress induced alopecia, good grief. Finally the date came much to my relief as I could hardly stand the tick tick tick I imagined in my head. Well fortunately I can assure you that having and recovering from a ruptured aneurysm vs a scheduled repair are nothing alike. It was not pleasant, no surgery is, but in my case it was a far different experience and recovery. I have another one forming now but feel fairly assured that if you control blood pressure and such they are fairly slow forming, another MRI wasn’t scheduled for 2 years even. I hope you get in soon and also have a smooth recovery.
Hi Kelly thanks from r replying to me. It is reassuring to know that recovery from your repair was easier than the rupture. It has been playing on my mind that I have got so far with my recovery, still a long way to go but… I have been worried that I would be back to square one and feel I lack the energy to do it all again. So thank you for that. I hope that you continue to be watched and you do not need any more surgery xxxx
I second what @Kellie2 just wrote. I suffered a ruptured aneurysm 5 1/2 years ago and six months later I was on the OR table for additional coils and a stent. I was anxious when I learned about this and the months before it was done. I just wanted it to be over so I could put this behind me. My neurosurgeon told me that it would be a walk in the park compared with the rupture. I have to say that it wasn’t a walk in the park….but so much easier and the recovery didn’t take long. Some visual disturbances and fatigue were present but most of it has vanished. You will be fine and it is ok to have a bad day and be anxious. Keep on writing to us whenever you want. We have “been there done that “
Thank you for the message, it is really helpful to hear from people who have been through this. I really appreciate this site and everyone who writes here xxxx
you do not need any more surgery xxxx