Ruptured Aneurysm/SAH Before 30— Would Love Advice/Stories

Here’s the link The Day It Happened – Heidi's Brain Blog

I just wanted to update you all as you’ve each been so very helpful. Yesterday was my stent procedure and my doctor said everything went well! So far, I am certainly tired and experiencing a small headache that comes and goes, but all in all I am thankful to be feeling good.

Can’t thank you enough for your responses, stories, advice, and support!

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That’s great news Karly, well done! Remember to hydrate, eat protein and rest…

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@karly
YAY :raised_hands:t2: You made it! What a wonderful feeling, it’s done! I’m so glad to read your post. I was thinking of you earlier this week and wondered how you were doing.
Be careful and rest a lot, take naps, eat and hydrate ,let the incision in your groin heal. Remember that slow and steady wins the race.
I must say that we have a wonderful support group. Thank you all !

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So glad you are past your stent procedure. Praying that your headaches subside quickly and that having both things in place helps you feel more at peace about any future risk.

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So glad you are thriving! Did you name it?

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You are kind— so far, so good!

You know, I haven’t yet… I need to think on this! I keep referring to all of the additional pieces floating around up there as my new hardware, though that’s terribly unimaginative, isn’t it? :slight_smile:

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To be honest I was going with a transformer sounding name or something of a high fantasy foe… I would not think there there is a rush- we all get to live with our friends for life, better and worse.

I did think of all my stents though, all that mesh… though its not exactly what I imagine… its close enough.

Make sure you listen to the doc… blood pressure and activity wise for a while. Also keep on the lookout for strokes, they can be small and there are probably mini ones that happen just a result of the procedure… If it doesnt feel right, it isnt right. That is our motto here. Doc would much rather a false alarm stroke call vice you miss it and something major happens.

Keep kicking aneurysm butt!

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Very true! I’m sure an appropriate name will come in time.

I had tremendous anxiety during the few days leading up to the procedure thinking of risks. It’s so difficult and emotional to go through a rupture, be in recovery for that, and then think about adding yet another procedure to recover from. I am keeping an eye out on all my BEFAST symptoms and certainly taking the cautious route! You are so right— being safe and getting checked out for a false alarm is worse than the alternative.

Did you experience stroke after your stents?

Curiously my worst symptoms by far have had nothing to do with my brain— I’ve had a terrible reaction to the contrast dye this go around. I believe I’ve read @Moltroub has experienced something similar. I am on an antihistimate, prednisone, and they administer epinephrine in the hospital to keep symptoms down. Had not had that happen before.

Always something!

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Yes ma’am I’m deathly allergic to all contrast dyes now, went into severe anaphylaxis the last time. No more angiograms for me unless it’s to save my life! My Neurosurgeon did mention that it was really good I was able to do my relaxation breathing and stay calm until the RNA could go get the dexamethasone. She had to be told to give me the Benadryl which she had right there. The surgeon ordered a very fast drip to help flush it out of me and help it did but I still had orders to drink a lot for a month or two. Water and a sports drink ratio.

I agree totally with @JonAndrewA err on the side of caution! I know you asked him, but I haven’t had any ischemic strokes since my stent was installed that I’m aware of.

I haven’t named neither my stent nor my aneurysm, though I do like to say I’m a wired, caged airhead😂

Hello everyone! Glad to be apart of group with others who share my experience. So I had a broken pipe under my trailer, I took off the skirting to send a pic to my dad and I caught the worse headache of my life. I went inside and massaged my neck for like 20 minutes. That is the only reason why I believe I survived. I went 5 days before falling out at work. I woke up 3 days later in the hospital with a tube down my throat. I freaked out and tried to take it out before getting knocked out again. I woke up that Friday to find out that I had 2 aneurysms. My left one was SAH. My neurologist was going on vacation so they sent me 2 hours away to NOLA. I stayed there for 28 days. I was having vasospasms the whole time. They didn’t want to let me leave at first but I had family issues where my kids were staying so they let me leave. I fell out on Oct 17,2022. I been having headaches horribly. The neurosurgeon said my coils look good and that the headaches are normal. I have 3 toes on my right side that are numb. Sometimes I get pain in my feet and all my toes go numb. I have gone back to work but only because I had no income. I am working in an office but I feel I have gone back to soon. I find myself coming home to take naps for lunch. I am tired a lot and it makes it hard taking care of a 10 year old and a 4 year old. I’m thankful I have an amazing boyfriend who helps out as much as he can. These headaches are rough. They have me on gabapentin and fioricet. Which is a mixture of nerve meds, Tylenol, and caffeine. Has anybody had any luck with meds or any other thing with headaches? I hate the gabapentin bc I am breaking out on my face horribly.

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Welcome again Laci! The migraines we get after rupture can be excruciating to say the least. You are definitely a fighter, good for you! When I went to my second neurologist he tried many different meds for seizures though I wasn’t having seizures, just a tremor in my hands. I was already on gabapentin for my spinal issues so maybe they didn’t mix. The tremor didn’t affect my quality of life and doesn’t but I still have to tell new doctors in my life to ignore it. He believed people in the USA didn’t get enough magnesium and put me on magnesium oxide that the pharmacists keeps and needs to know who suggested it as it’s a much higher milligram than what is on the counters. Unfortunately, my body couldn’t tolerate it as bathrooms were never close enough😂. He then suggested an SPG block which I tried and had really good results for many months. Then they came back and I went for a second one but it hurt like the dickens. My neurosurgeon was pleased when I told her I wouldn’t have another, though she had told me to just follow his advice with the treatment plan. What has been successful in holding the migraines at bay is keeping hydrated and eating protein and rest. Even to this day, if I’m having what I call a bad brain day, I follow her rules - hydrate, ingest protein, hydrate some more, rest and hydrate more - repeat. If you find a protein drink you like it’s a bit of hydration and a good bit of protein at one time.

With everything on your plate, what with two young children and working it will be hard to rest I’m sure. Ask your doctor or better yet, go to a RDN and ask how much protein you need, mine is minimum of 90 grams a day. It’s the recommended amount in the USA, but WHO recommends 120 gms last I checked. I also have to drink minimum 96 ounces of fluid a day. You might try that route. I hope others will offer their experiences.

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Thanks, I have a follow up appointment tomorrow with the original neurologist who did the coils. I had an mri done and since the coils looked good the neurosurgeon from NOLA said I was ok and the headaches were not from my aneurysm. Which I find is bs bc I never had headaches that felt like they came from inside my brain. I get temple headaches, behind the eye headaches and complete all over headaches when I wake up sometimes. Guess I will see what happens tomorrow.

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Hey Laci,

I’ve been told a very similar thing “…we opened your skull, removed something, then put it all back together with a couple of plates and a few screws, but your ongoing issues have got nothing to do with anything we did. Uh Uhh, not us…” Now you say ‘bs’, my language was a little more colourful than that, but the idea there is no correlation between the 2 OMG. They’re joking? Right???

You’ve (obviously) already had that response before ie Not Related, but just be prepared for it to be said again. The first time I was angry, the 2nd time frustrated and by the third time I was just resolved to the fact they were just going to blame me. Their approach was the old “We operated, We fixed” theory, which would have been fantastic ‘IF’ it was all fixed, but it wasn’t ‘All Fixed’ at all. They came out with “Well, the brain itself has no pain receptors, so it’s not actually your brain that hurts…” I don’t care. The pressure inside my skull feels like my eyeballs are going to explode and you’re telling me I’m not in pain and it has NOTHING to do with the surgery???

If everything looks OK on the scans, then it’s all OK (according to them). They can’t see your pain. They can’t feel your pain, but they keep telling you they know all about it. Yea, I know, me too. But honestly, they have never been in this situation themselves. They’ve never had to deal with or manage such pain, so how could they know. They don’t. One of their theories was “ohh, you just have a low tolerance to pain…” I have a low tolerance for medicos who have read some books or written a paper and seem to know all about it. It can be VERY frustrating.

All I can really say is that I wish you the very best of luck, but don’t despair if you get more of the same. It happens to many of us with rare conditions, especially with neuro conditions.

Merl from the Modsupport Team

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The brain is a part of the body that should not be interfered with, however, not taking care of an aneurysm, etc is not an option either. For those on the receiving end of an aneurysm, their options are usually very limited as once it ruptures time is critical, and not everyone is guaranteed a successful outcome.

I learned over time to accept that I am alive, my life is no longer the same as it was, and that the future has yet to be determined. Some days I am tired, there but not there, and the following day I am back to normal-ish again.

There are horror stories in relation to the way some people are treated by the medical profession, but then in the midst of all that, there are the good doctors, few and far between. Whether good or not, as Merl has pointed out, they cannot possibly understand what they have not experienced for themselves.

I would not be happy to have coils fitted or a clipping done by a surgeon that has had an aneurysm. :unamused:

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I remember those headaches and they aren’t fun at all to live with. There’s a spot on my left side that when it would hurt bad, it seems it resulted in another procedure. Fortunately the stent she put in has pretty much controlled my headaches, I still get stress headaches and occasional sharp pain on the left side somewhere near above my ear but nothing to the extent I used to get. I hope the neurologist has some insight for you. The way my neurosurgeon explained her lack of knowledge with headaches is that it’s the neurologist’s specialty in the long run. But she even asks her husband when he gets a headache what he has had to drink and eat that day :rofl:. Could you imagine being married to a neurosurgeon and hearing stories, yikes! No wonder he gets concerned with a bad headache…

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Did your neurologist come up with a reason?

You must’ve inspired me this morning as I went on an internet search​:crazy_face::joy:

The Complete Headache Chart | National Headache Foundation (Apparently this isn’t really complete)

Headache chart: Types by symptoms, location, and causes (Which led to the next)

https://ihs-headache.org/wp-content/uploads/2020/05/ICHD-3-Pocket-version.pdf (it’s no wonder doctors have a difficult time diagnosing headaches)

Just out of curiosity— do any of you also wake up feeling like you were hit by a train? These last few mornings have been a doozy

I’m discovering as well how difficult it is at times to bend down…I feel like every ounce of blood comes rushing to my head if I’m even at a slight angle these days!

Oh, the joys of recovery :slight_smile:

If anyone has the magic cure for these major headaches, send them my way.

OHH YEA and this morning is a REAL doozy. Admittedly, there aren’t many mornings where I awake 100% refreshed But today…just WOW. Initially the plan was ‘Just stay in bed’, but laying there all I’m thinking about is the pounding…NOPE…that drives me crazy. I’ve gotta get up and get moving, slowly. Take some meds and hope.

I’ve found that when I get my head lower than my heart I see stars dancing in my peripheral vision and I can feel the blood in my face (sounds odd, I know), I get all woozy and need to sit, NOW. I’ve found a similar issue when standing from sitting. I need to stand and give myself time. If I go to stand and move all in one motion, I see stars, dizzies and on a few occasions, I’ve found the floor with a thud. You only need to go ‘thud’ a couple of times to learn, slow down. I know, for me, I have to give myself time. Time for me head to normalise to the change in position. Time for that weird ‘woozy’ to pass, then move. I used to have 2 speeds, full tilt and stopped. Now, anything like 1/2 speed is too much and I become symptomatic. This has been very frustrating. Some days I can have no issues but then some days it all overwhelms and no 2 days are the same.

I think we all manage the best way we can. If that’s with relaxation, if that’s with time management/activity management, medication management or treatments. If that’s what works for you, then do it. I’ve been on this ‘management journey’ for many years and I’m sorry to say I am yet to find my ‘magic cure’. I’ve had many dr’s, professors, physicians and specialists all with their own theories and treatments, but with no great success. I’ve identified triggers and try to avoid them, but when you wake with a pounder and you haven’t even moved out of bed yet, it’s a little difficult to identify a trigger/cause.

Please, don’t get me wrong here, some people are lucky enough to find their ‘Key’, their ‘Magic Cure’ and I do hope you can find yours, but that ‘key’ can be a very elusive thing for some of us.

Merl from the Modsupport Team

Do you remember having your head at about 30 degrees up in NSICU? That may be a start for you. Another thing I do is something I learned for my back surgery and that’s “bridging”. Instead of bending over, I squat and keep my balance with a forearms on one of my legs. I garden on my hands and knees instead of bending over as well. I learned the hard way to try to keep my spine in alignment that first year though I can’t tell you why that helped.

Most importantly, reach out to your neurosurgeon and ask about the headaches, perhaps they’ll want to do an MRI/A sooner than your six month follow up one. It’s only an experienced guess but sometimes coils get compacted. If your neurosurgeon isn’t game, ask your neurologist. Maybe the neurologist can try something. Seems everyone who ruptures ends up with both the neurosurgeon and neurologist. Be careful about the amount of otc’s you take because rebound headaches aren’t fun either.