She's sleeping while I piss my pants

June 29, 2007 10:52 PM

Just a few hours ago we learned that my SO of 7 years has a brain aneurysm.

I have been googling stuff, but the information is terrifying. It keeps saying how death can come suddenly. If this is so, why did our physician-referred neuro surgeon set a meeting for Monday? Shouldn't she be in the hospital now?

This all started a week ago, on Friday around 4:30pm. While driving she had a sudden. severe headache, and a "weird" feeling of being "out of it". She drove to our doctor who sent her to the ER where they did a CT scan and a lumbar puncture, both of which came back clear. The doctor wasn't satisfied, (thank god), and he sent her for an MRI and MRA. Something on one of those tests had him order a CT angiogram for this morning. The results from that show she has an aneurysm in her brain.

It's now late Friday and she's happily asleep while everything I read makes me anxious. I don't understand what the headache was. Was it the anerurysm rupturing? And if it ruptured, how could he say her CT showed" an aneurysm. And, also, I read that, if it did rupture, there could very likely be a "vasospasm" within 2 weeks, which could cause a stroke.

Our doctor is awesome. He kept sending her for tests even though the CT and the lumbar puncture showed nothing. So, I know he would NOT put her life at risk in any way, but I just don't understand what I'm reading.

It seems like she must not have a BAD aneurysm, or they would be more alarmed and doing the surgery right away.

Also, the description of recovery from the surgery is also terrifying. There is minimally invasive surgery which seems more succcessful with less side effects called Coil Embolization or Endovascular Coiling. With a shorter recovery of 27 days. BUT HOW DIFFICULT IS THE RECOVERY? Will she have speech and memory problems? I know I should wait and ask the Neurosurgeon, but I want to know now. I need more information, and the stuff I'm getting off the net just keeps scaring the shit out of me. I am worried.

Anyone who has had this surgery or an aneurysm, or has any knowledge or experience of this, can you provide me with some info? Can some aneurysms be "milder" and less deadly?

posted by generic230 to health & fitness (18 comments total)

oh darlin', you poor poor thing.
i can imagine how terrified you are.
i'll start off by telling you that my mum had one rupture when she was pregnant with me, 38 years ago. and she survived.
she had the coil, and all went well. she lost her second language, and that was pretty much it.

hers also started with a blinding headache.

she was told she was at risk of having others, and decided to live her life to her absolute fullest. which she did for another 35 years.

another one came and took her away, but she was an idiot with her blood pressure... drinking like a camel and smoking like a crematorium... long after she was warned not to.

so... .even with her idiotic lifestyle choices... she lasted a very long time after her orignal bleed/diagnosis. and in the mean time, had a long, intelligent and very fast life.

don't freak too much, so long as your beautiful partner doesn't do stupid things with her blood pressure in the next few days, she'll be fine.

of course, they can blow, but it's unlikely to happen before monday, if she's well. and if it did, by some unfortunate quirk of hideous luck... well, you'd just call an ambulance and she'd be in hospital in a jiffy and they'd give her the super duper whizzo drugs that reduce brain swelling and she' be cool.

that's the one change since my mother had her original bleed... the drugs. and some of the angio/neuro dyes, i think.

anyhoo... hope that's sort of reassured you.
if it wasn't possible to survive a brain bleed, i wouldn't be here. but your darling is NOT going to have one before monday. and the procedure will go splendidly.

i'm so sorry you're both going through this, but she'll be fine.

have a hug... and let us know how she goes. she's probably pretty freaked too. take care.
posted by taff at 11:06 PM on June 29, 2007 [1 favorite]

ooooh... missed something... i'd hazard a guess that it hasn't ruptured, or there'd likely be blood in the lumbar fluid... and more symptoms. but that's my guess, and i'm not a doctor, vet, lawyer, plumber or anything else.
and of course... your kilometreage may vary.
again, take care possum.
posted by taff at 11:12 PM on June 29, 2007

Well, I can't pretend to know what you're going through, but Bill Berry is still alive an well, despite collapsing from a brain aneurysm 12 years ago.
posted by dirigibleman at 11:13 PM on June 29, 2007

So sorry you're going through this.

A colleague of mine back in Chicago is alive and well about 9 or 10 years after the same thing happened to him (sudden severe headache and the "out of it" sensation). The thing I recall most about his recovery is that he had some minor speech difficulties for the first few years afterwards, but remained as sharp and capable as ever otherwise. I wish I recalled more details of his treatment, but your reference to the coil embolization definitely rings a bell for me.

I'm sure some of our great mefite docs will be along to give you much more detailed info (paging ikkyu2, et al.!), but I did want to chime in with a story with a very positive outcome.

For you, I'd say you should try, as much as possible, to stop reading the internet right now if all it's doing is making you anxious (I know, the temptation is mighty!). Think of it this way: there's nothing you can do except worry till you talk to the neurosurgeon, and worrying -- in and of itself -- won't actually accomplish anything positive.

I wish you and your partner all the best.
posted by scody at 11:44 PM on June 29, 2007

IANAD, but the location and size of the aneurysm also contribute to its overall risk, from what I understand. And those factors alone can also greatly influence the course of treatment, and the studies necessary to plan treatment. Monday may well be the earliest that the medical personnel and resources needed to treat her can be scheduled. I suspect you'll probably have additional imaging studies, and consultations with doctors, over several days next week, to develop an appropriate treatment plan, much less implement it.

For the next 48-72 hours, if she doesn't do anything strenuous, her risks at home or in hospital would both be low, I think. But she's probably much more comfortable at home, and feels less stress than she would if she were in a hospital, waiting for something to happen. To the extent that she can relax better at home, and be under less stress, and not exposed to hospital atmosphere, she's probably better off at home, until next week.

One step at time, and each step a measured one, in coming days. Your anxiety will not help her situation. Your calm concern, strength, and attention to details will. You can drive yourself nuts looking for the worst case scenario on Web sites, or you can conserve your mental and emotional energy, and harness it to the tasks of supporting your SO through the diagnosis and treatment to come.

Learning with her, as she does, at the same time and pace, can even be beneficial in facilitating understanding. There is little point in trying to become an expert, before the experts have fully presented a treatment plan, which will screen out many factors not germaine to the specifics of your SO's case, and present those that do, for thought and decision. If I were in your situation, I'd probably shut off the computer for a few days, and do a lot of listening to your SO. People faced with sudden major medical issues may have a lot of ground they feel they need to cover, emotionally and mentally, as they prepare to face treatment.

Good luck.
posted by paulsc at 11:52 PM on June 29, 2007 [3 favorites]

An aneurysm can cause a headache without rupturing.

Did you take high school chemistry? Remember those strange faucets with the conical nozzle, and remember rubber hose? Remember how you could clamp one end of a rubber hose, hook the other end up to the faucet, and run water into it and it would expand like a sausage, and then you could clamp the other end and have the world's best squirt gun for really soaking someone rapidly?

That hose had two inflation modes: really small, and really big. The "really big" mode was an aneurysm. The long thin balloons that balloon-clowns use to make head pieces for little kids are the same way. When you blow air into them, part of the balloon expands to full diameter and the rest remains narrow. How much of each you see is a function of how much air has been blown into the balloon.

Blood vessels can occasionally do exactly the same thing, with a section suddenly expanding to many times normal diameter, filled with blood. When that happens in the brain, it presses against other tissue and you can feel pain from it. That's the headache part.

If it bursts, you get a stroke. That's one way strokes happen. But it isn't necessarily inevitable, and it isn't necessarily all that fragile. I think the doctor in this case has judged that the danger is low. (I hope he's right.)
posted by Steven C. Den Beste at 12:02 AM on June 30, 2007

I think scody is right that the internet is probably just anxiety-inducing at this point (of course it is very hard to resist--I know!). However, in case you are still reading, I thought I'd add another story with a positive outcome: my friend's father had an aneurysm a couple of months before her wedding. It was fairly serious (med-evac to big city, etc.). He survived surgery, recovered very well, and even attended her wedding. He was a little shaky at that time, as one would be after a major health event, but he is still doing just fine nearly ten years later.

I hope it helps to hear some positive stories. I wish you and your partner the best and a speedy recovery for her.
posted by hurdy gurdy girl at 2:39 AM on June 30, 2007

I can only imagine how trying this must be for you...
Just let her relax this weekend. Have her stay away from high sodium intake as well as alcohol or tobacco. The doctors would have admitted her if her condition were likely to worsen.
Don't let her lift a finger and let her pets/children/and you spend some quality time with her.
You will remain in my, as well as numerous other MeFites, thoughts
...If you really pissed your pants...it's your turn to do the laundry.

Looking forward to hearing good news from you soon.
posted by bidrattler at 2:54 AM on June 30, 2007

You may already have seen this but, this sounds like what happened with Neil Young a couple of years ago. In his case too it was apparently a few weeks between detection and treatment.
posted by DarkForest at 4:33 AM on June 30, 2007

yes, please try to enjoy your weekend. take it easy, cook a wonderful dinner, rent some great movies, work in the garden or take a walk in the sun, make love, sleep late. and turn off the computer. this is one of those situations where you are trying to sip from a firehose.

there's a difference between urgency and emergency, and it sounds like your girlfriend falls into the first category. have a great weekend, so you'll go into the surgery on a high note. brain surgery is pretty sophisticated these days: my cousin had two brain tumors removed and went home a week later. she did have some temporary neurological problems due to the swelling, but they went away as it went down.

enjoy your weekend. try to relax, if you can. i wish you all the best. she is lucky to have you.
posted by thinkingwoman at 5:43 AM on June 30, 2007

Pretty much exactly this happened to the girlfriend of a very close friend of mine about two and a half years ago (she was 24 at the time). She had the coil inserted, but the aneurysm burst during (or shortly after) the surgery, and she immediately had to go back in for open surgery to remove a large clot. The next six months were hell for everyone involved, myself included. Her recovery since then has been long, incomplete, and difficult. She still has not regained most of her speech, and her motor function is severely impaired on the right side. But she is alive, thanks to having excellent doctors and being very very lucky to be in the NSICU when the aneurysm actually burst. My understanding is that if the coil had worked, should would have been largely fine.

It is of vital importance that you sort out your her health care proxy if you haven't done so already. Have no confusion about who gets to make medical decisions for her in the event that she cannot, make sure that person knows her wishes, and make sure that you have actually executed the piece of paper that certifies this. I hope you don't need it, but recognize the possibility that you might, and this is not the time for you and her family members to be arguing over who gets to make the call between two difficult choices of action.

There's a good probabilty that this will turn out fine, but you also need to be prepared for the small but real possibility that this will change your life forever in ways you can't imagine.

I know you're looking for assurances, but in this situation, there is no way to know what's going to happen, and even though a certain outcome is unlikely, it may happen anyway, with very little warning. Enjoy your weekend, sure, but don't let that stop you from being prepared to take action if the situation warrants. Go to the ER immediately if, for example, her headaches get worse. Be informed about all of the possibilities, and what you're going to do about them if they happen. Every case is different, and the experiences of others don't give you any definite information about what will happen in yours. Also, know which ER you're going to if you need to, and know how to get there.

Regardless, to answer your other question - she will certainly need some rehab therapy afterwards, but how much depends on what actually happened before/during/after the surgery.
posted by Caviar at 6:23 AM on June 30, 2007

My father has been aware that he has had one since before I was born. He is not allowed to lift heavy objects. He does get very severe headaches pretty often but he has been doing well for over twenty years. It's important to take very good care of it and not to overexert yourself. I hope things work out well for you two. Good luck.
posted by austinlee at 6:59 AM on June 30, 2007

Just don't let your anxiety and freaking out about it lead to a fight or anything over the weekend—you don't sound like the type to let that happen, but just saying. Anxiety freak-outs help no one.
posted by limeonaire at 8:42 AM on June 30, 2007

Stop making yourself crazy with internet research. Unfortunately, even if the information is correct you don't have enough experience in the field to interpret the information in the context of your SOs diagnosis. You want to do enough research so that you can understand the doctors and ask intelligent questions.

One thing that may make this easier for you it to get a notebook and keep detailed notes. You can also include printouts of research and ask your doctors to help you interpret it. The notebook becomes especially important at the hospital. Whenever the doctors / nurses come in the room you take notes on what they say. When one person gives you an answer that doesn't match another answer you can simply refer back to who said what when. It's hugely helpful. Also, when friends and family come to visit, you don't have to recite what's happened, they can just read the notebook.

If you want to do something useful this weekend - and I understand that you do - get your insurance information together. Get copies of your health coverage explanation of benefits (EOB). Pull together a list of all the insurer phone numbers you may need, including the HR person at your SOs company who manages the insurance plans. Also, if your health insurance can also cover your SO, put together your insurance information (co-insurance). Make copies of all those documents and put them in your notebook.

Then relax and enjoy the weekend. Some normalcy is probably going to be a comfort to her. If the doctors were worried that it would rupture this weekend, then would have kept her in the hospital.

Take care and good luck!
posted by 26.2 at 8:46 AM on June 30, 2007

Thank you, everyone, very much. I had a great night's sleep, most likely from sheer exhaustion, but, I woke up fresh and calm and ready to be a rock for my partner. All of your answers were vital to me, not just the favorted ones (which calmed and educated me) but everyone's thoughts and support are something I needed. I have loving friends and family, but at night, I'm alone, and everyone else is asleep. It's the worst time of all. To be able to reach out and find comfort on askmefi when I'm feeling most alone, REALLY soothes my soul. Thank you all of you.
posted by generic230 at 9:46 AM on June 30, 2007 [3 favorites]

My neighbour at home just had the coil embolization surgery. He was nearly blind before this for several months--I guess the thing was in his primary visual cortex, fucking things up. He was so excited after the surgery was successful because he could see his wife for the first time in that long. It was really successful for him, though he's still recovering, and I think--since nothing motor was involved--he doesn't need any kind of therapy.

Good luck, way to be there for her, and definitely follow the good common-sense advice of the above posters.
posted by rhoticity at 11:02 AM on June 30, 2007

A friend of mine had one burst, she is VERY lucky to still be alive and to be 99% the same as she was before hand.

No one beleived she had something wrong with her, the doctors thought she was just having panic attacks. She had a couple cat scans that were read wrong which contributed to that as well. Finally she drove herself to the emergency room after months of this with the "worse headache of her life" which is the buzzword that hopefully even the greenest emergency room worker knows means that an aneurysm is likely.

Spinal tap was positive for blood, and they shipped her to a bigger hospital for open skull brain surgery (the coil was no longer possible).

She had some side effects from the surgery, most notably she lost sight in one eye. If after surgery anything like that seems like it is going on, get the team of doctors in their ASAP.

I hear that people who get the coil for the most part are fine right afterward. My friend was in the ICU for a couple weeks since she had more serious surgery.

Insurance was okay, but the paperwork came for years.

Good luck.
posted by bottlebrushtree at 1:09 PM on June 30, 2007

There's a happy update to this thread in MeTa.
posted by jessamyn at 7:00 AM on July 8, 2007