Coiling of unruptured aneurysm scheduled

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Hi everyone,

I have my coiling procedure scheduled for 3rd July. I have to go in the night before, and will stay in for 3 days, providing all goes well.

My aneurysm is 3.5mm (originally thought to be 4.5mm, but they’ve reviewed this) and on the Acom artery.

I’m dreading the day I go in. I can’t help thinking about the risks. Despite them being small, they are real. Does anyone have any tips on how to feel better about all of this?

Also, I’ve never been in the hospital before as an inpatient. What will I do for 3 days? Any advice on what to bring with me (clothes and toiletries I will). Are you allowed out for walks etc?

If you have success stories for coiling, I’d love to hear them. What is follow up like after coiling?

Thank you :slight_smile:

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@Dani224
Hi and welcome to our group that no one wants to be a member of.
First of all, Congratulations to you, you will have the aneurysm treated before it ruptures!
You will find many members that have had this procedure done, I am one of those. My aneurysm was in a different location than yours and it ruptured one morning almost four years ago, I am extremely lucky to be alive!
I got emergency care and the aneurysm was coiled, you can read my story in my profile. After the first follow up appointment with my neurosurgeon, he told me that he recommended a new procedure with a stent and more coils as the aneurysm couldn’t be fully treated when it ruptured. I also had to be on Plavix and Aspirin before the next procedure. This is the standard procedure. I was terrified! I had the option to wait and watch but the recommendation was to take care of it before it would possibly rupture again, he said that if it does, I will not survive . It took me a couple of weeks to digest the information and I decided that it was in my best interest to get it fixed. Once I made my decision, I felt less worried about it. It helped me a lot to read about this in this forum, I was not alone and you are not alone.
My neurosurgeon assured me that the procedure would be a mild breeze compared to my experience when it ruptured. He was right.
I had the angiogram procedure with a stent and more coils in the morning, came to the ICU where I stayed overnight and went home after lunch the next day. Just a mild headache for a few days, and the puncture site in the groin takes a while before it heals properly so you have to be careful and you will get information what to do and not to do.
Sometimes they use the artery in the wrist instead of the groin and the recovery will be faster if they do.
I can understand that you are worried about this, but I think it would be the best thing to do. You will be checked with an angiogram or MRA/MRI after a while to see that everything looks fine.

When I was waiting to get into the operating room, I overheard a phone call from my neurosurgeon and he said “xxxx is my first patient today “ when I heard those words I felt so calm, I remember that I was thinking this is what he does for a living ….day in and day out……he is the expert in fixing blood vessels in peoples brains.
I recommend that you wear some type of jogging pants that are not too tight, especially over your groins when you go to the hospital. Also a pair of sunglasses to use in the car when you go home. Many of us have been sensitive to bright light immediately after the surgery. You are not allowed to drive from the hospital so you need someone to take you home. Depending on when you get home, you might need someone to stay overnight with you for security reasons.
You will not be able to walk around in the hospital, you have to be in your bed for at least 24 hours.
Think about what support system you have around you. The recovery time is usually not very long but depending on the type of work you have you may need some extra time at home. Be prepared to take it easy for at least two or three weeks. You will get discharge information from the hospital.
Get your home in order,wash clothes and tidy up, prepare food and put in the freezer so you don’t have to cook the first days. We cooked a large plate with meatballs the night before the surgery, we cooked them in the oven, and forgot about it I think my husband and I was a bit stressed after all, thankfully we turned off the oven before we got to bed.
This was a long story for you. I wish you all the best with your surgery. Get back to us and ask questions. I hope that more members will join the conversation.
Take care of yourself and relax.

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Hi Dani,

I’m a little different from you guys because I’m an intruder (in a nice way). I’ve got something called an arteriovenous malformation in the back of my head. What it means is that I’ve got a direct connect from an artery into a vein where there should be a capillary bed. The consequence of the AVM is that, untreated, my vein might bag out like an aneurysm and go pop in much the same way.

I had what’s called a catheter embolization procedure that glued up the AVM. Sometimes coils are used as well as glue but I happen to have just glue. It is basically exactly the same procedure that you’re going in for. A similar set of complications, the same worries.

I’m in Leicestershire but was seen in Nottingham.

I can tell you that I was looked after beautifully by the nurses and the consultant. Nobody expects you to be ok with neurovascular surgery, ok?

I’d say make sure you hydrate nicely on the day before you go in. You’ll need to quit food and drink at some point the night before, so just go out of your way to hydrate in the previous day or two that you’re allowed. You’ll set yourself up well.

Once you go in, you’ll just be led through what needs to happen. The nurses will just guide you through the day.

Once out of theatre, I went to recovery and then onto the neuro ICU. My mouth was very dry and the solvent from the glue I was breathing out – a bubblegum kind of smell! Lovely! I had a headache but the drugs are good and basically I was ok. Not exactly “comfortable” but, you know, gettable-throughable.

Following day got moved next door (less critical care) and the day after that moved again, then home.

Honestly, while you’re waiting to go in, having a book is a good idea. While you’re in NICU you probably won’t need a book. Once you get visitors, maybe they can bring a book back in. I don’t think I felt up to much and so I just tried to relax. You get looked after, free food on a regular basis and a bed in the warm. I tried to look upon it as an all inclusive holiday! I did.

Like @oct20 says, once you’re home you’ll want to take it easy. I took three weeks off work and tapered off paracetamol over that time.

Hope that helps. Feel free to ask anything.

Very best wishes,

Richard

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Wow, Dani224. You have never been an inpatient in a hospital before, eh? No wonder you are feeling what you’re feeling. :slight_smile:

I had a stent-assisted coiling procedure performed on an unruptured annie 7 months ago. It is roughly twice as big as yours and the procedure went smoothly. We are both lucky to be experiencing what we are experiencing now; endovascular treatment of intracranial aneurysm has progressed quite a lot during the past few decades. And we are fortunate to be able to be beneficiaries of that progress.

Which is a nice segue to your request for tips on “how to feel better” about your situation. Nothing works better for me, when I find myself in similar circumstances, than the healing ingredient of GRATITUDE. When you place your attention on all the things that you have a legitimate reason to be grateful for, it puts everything in a proper perspective. You have one thing to be especially grateful for, as many who come here will attest to: you were lucky/fortunate/blessed to discover your annie in an unruptured condition. That is a HUGE blessing to be exceedingly grateful for, yes?

Lastly, here’s what worked for me during those times I had to be a resident at a hospital or rehab facility. MOVE around as much as you can and develop friendships with some other patients. As soon as you have permission to move about, become acquainted with the “lay of the land” outside of your own room.

You will also come to discover that hospitals contain many heroes who provide heroic services to you and your fellow patients. Treat them as heroes, and they will respond in kind.

Thank you for joining us here. You found a sanctuary for the adventures that lie ahead of you.

Hugs.

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Hey @Dani224 wishing you all the best on this next stage!

Not there yet but may be soon.

Meanwhile, I have spent time in the ICU/hospital after a car accident and then after subsequent surgeries.

Suggested items to bring:

  • large format book
  • some magazines (I copied recipes onto index cards slowly and meticulously to help keep anxiety at bay and still have some of those recipes 24 years later)
  • your mobile and charging items for it including loooooong cord, power banks if you have them
  • your toilet articles for showering but nothing too strongly scented
  • laxative pills - the care team will try to give you stool softeners but no way start the heavy stuff IMMEDIATELY after you wake up and see drinking and can keep stuff down
  • make sure you ask for antiemetics or stuff to help prevent nausea and vomiting like Zofran
  • soft PJs and crocs or your comfy shoe of choice - bring stuff that feels good to your skin, washed in free and clear detergent (no smell), I also bring an ultralight package down coat because I get the chills
  • lip balm and hand lotion
  • cute bandana to cover your head in case you don’t shower and or a beanie in case you get the chills
  • favorite snacks if you have any but may not eat them - I bring lemon drops and ginger chews
  • alcohol wipes in wrappers sold as lens wipes to clean devices and or to smell if you feel nauseous
  • thank you cards and a pen - writing thank yous to your care team is a nice way to pass the time
  • sunglasses as mentioned and a ball cap or straw hat for outdoor transfers
  • card deck or other easy brain activity
  • earplugs and a soft sleep mask (see point below)

You’ll not get a lot of sleep with checks etc so take naps when you can. Order heart health food or what you can keep down but always order in case you’re hungry later.

Be an active involved patient when you are in there! If something feels wonky get help - feel something, say something.

If you can have someone stay with you as much as possible first 24 hours and write down what happens in a notebook.

Again best wishes. Is it weird to say I’m happy for you and will be thinking about you next month? :slight_smile:

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I was flow diversion rather than coiling, but very similar as it was endovascular. For my first (i am a repeat customer) i took half of my house with me … ipad, book, magazines, bluetooth speaker, and anything else i could stuff in a bag. I used NOTHING. Trip 2 and 3 was phone and charger and the bare minmum of anything else. I knew i was just going to lay around these times. Take whatever you want, or have someone ready to bring what you didn’t anticipate if that’s doable. The only things i ended up actually caring about were my toothbrush and toothpaste, and personal care items (silly stuff like chapstick, my face wash, and yes, i know i could have live without all of it it but it made more comfortable) Having water handy and other little things nearby mattered. I get headaches after but they brought me icepacks and meds when necessary. Another time no headache but i still wasn’t into reading so I downloaded an audible book once but only listened for a bit. I hope you feel like you have time to fill, but I was mostly still processing that it was done and waiting out the clock. People you want nearby are worth more than anything you do or do not bring.

I always take nice soft sleepshorts for femoral access. People are constantly checking the site and they provide easy access and a bit of modesty (though you likely won’t care) as well as coverage when you get in an out of bed. Plus they are comfy, cute, and it’s a good excuse to shop instead of fret.

Coping mechsnisms? Must haves in my opinion…google and pratice 4 7 8 breathing techniques. Youtube has some nice meditation and mindful exercises for calming the nerves. The Calm app does as well.

Right now you are trying to prepare as much as possible, to CONTROL as much as possible, because in reality you are about to give over control to others. There’s no getting around that reality. It’s unsettling. But remind yourself that the people who do this are the best of the best.

All neurosurgeons I’ve encountered seem to be meticulous, detail-oriented control freaks and that’s great by me! Just get there, get it done, and before you know it you will be back at home wondering how to process the fact that it’s finally behind you. You’re going to do great!

Finally, pardon my typos. I’m on a mobile device and do way better on a keyboard!

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Hi,

I had a 6mm unruptured Acom aneurysm that was discovered after an mri because I was having weird blood flow in my arm(which went away immediately after treatment). Plus a family history.

I have 2 stents in a y-configuration plus 9 coils.

I was only in the hospital for the day of the treatment plus the night in neuro icu. I went home that afternoon. Maybe I had bad insurance and that’s all they would spring for. Haha.

I felt like myself after the procedure. A bit freaked out emotionally. This was almost 9 years ago. The worst outcome proved to be femoral/groin pain which has continued on and off until this very day. I encourage you to at least ask about radial access.

I take daily low dose aspirin. Its not too bad so far.

I think the experience can be much different for different people. Another life lesson I suppose.

Best of luck, Susan

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This is where I am.

With regards bedclothes etc, I’m sure I was in an NHS-issue theatre gown for a couple of days but you do want soft clothes, not the harder cool cotton type.

You will get checked on through the night, hence you’re not going to want to do much other than get better.

I think the idea of neurosurgery is frightening but honestly I found my procedure much more doable than I expected. Stuff can go awry and you can spend much more time in hospital (and that would be more challenging – understatement) but two or three nights getting past something like I did, I’d do it again if needed, no worry. I do think the fear of the unknown is a large part of it.

I hope the things we tell you help you a little along the way.

Richard

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Hi @oct20 thank you for telling me your story and sharing your advice. I, like you did, am finding this forum so helpful. I’m so glad I found it! I agree, I am fortunate in many ways that I’m able to have this procudure in non-emergency conditions. Although, the constant reading, fear and thinking that comes with it… I can’t wait for it be behind me! It’s a really good idea to prep for return home. I think I’ll get started on a meal prep recipes list soon!

Hospital bag list:
Soft joggers
Sunglasses

:slightly_smiling_face:

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Hi @DickD thank you for taking the time to reply to me. I had not heard of the AVM. It sounds very complex. It’s amazing how much we can learn when we go though things like this! Thank you for explaining the after care. It’s really helpful to have an idea of what to expect :slightly_smiling_face:

Hospital list
Soft joggers
Sunglasses
Books
Maybe some mints

:slightly_smiling_face:

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Hi @Peter, thank you for your message. I’m glad to hear your coiling procedure went well, and it’s comforting to hear that we are in good hands after the progression in this field. I like to hear things like this as it makes me feel less worried. I keep having thoughts of not waking up after I go to sleep. I can’t bear these thoughts. The more positive things I hear, the less I hope to suffer them.

But you are right, I am lucky, and I should be grateful that I’m able to fix this before it ruptures in the real world. Thank you :pray:

Hospital list
Soft joggers
Sunglasses
Books
Maybe some mints
Thoughts of gratitude :slightly_smiling_face:

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Hi @meaniffer, thank you for this really useful advice on what to take to the hospital! I’m sorry to hear you were in a car accident. I hope you’re doing well after your surgeries :heart:

Hospital list
Soft joggers
Sunglasses
Books
Maybe some mints
Thoughts of gratitude :slightly_smiling_face:
Magazines & books
Phone, long lead charger & power bank
Unscented shower gels, lip balm& hand cream
Laxatives :poop::grimacing:
Anti sickness items
Slippers, comfy warm clothes & bandana
Snacks :yum:
Note pad/ cards and pens
Simple games
Ear plugs & sleep mask

Thank you! :slightly_smiling_face:

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What an amazing shopping list you have! :rofl:

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Hi @Judi, thank you so much for this. I’m honestly so grateful for all the advice and kind words from everyone on here :heart:

I think you’re right about the control aspect. It does make me feel better, for now. The meditating is a really good thought. A good way to relax the body and mind, and lower the heart rate too!

Hospital list
Soft joggers
Sunglasses
Books
Maybe some mints
Thoughts of gratitude :slightly_smiling_face:
Magazines & books
Phone, long lead charger & power bank
Unscented shower gels, lip balm& hand cream
Laxatives :poop::grimacing:
Anti sickness items
Slippers, comfy warm clothes & bandana
Snacks :yum:
Note pad/ cards and pens
Simple games
Ear plugs & sleep mask
Toothpaste and toothbrush
Meditation music/ podcasts
Soft pj shorts

Thank you! :pray:

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Hi @Susan722, fellow Acomer :wave:

I’m so sorry to hear that you’ve suffered with groin pain for all these years. I hope you manage to find a cure for the pain. Or at least it eases as time goes on.

Thank you for the advice, I will ask about radial access during my telephone consultation next week :blush:

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Remember, your neurosurgical team are the ones doing the real work. You are going on a little vacation no one really wants to take. So if you feel up to it, you could always do some fun vacation planning while you’re laid up! So add “plan a REAL vacation” to your list, and I’m mentally adding it to my list if I ever go in again :smiley::joy:.

And once again for emphasis, you are going to do GREAT!!!

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Thank you @Judi. I like this phrase, a holiday that nobody wants to take. I think I’ll re-title my list from this! Maybe I should pack some postcards too, to send out to friends and family from my ‘resort’ :joy:. Planning a real trip away would be lovely.

Thank you xx

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You’ll do great, on your telephone conference ask what you’re allowed to bring from your list, my experience is no otc’s of any kind. I only had to stay overnight so a bit different than three days.

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Thank you @Moltroub , I will ask :slightly_smiling_face:

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5 posts were split to a new topic: Venous Sinus Stenosis