Brain Aneurysm Support Community

Feeling like it never ends

My rupture was almost 2 years ago – October 12, 2017. I underwent a successful coil and stent and in February 2018 my followup angiogram showed that the aneurysm was gone. I realize that it takes some time to find out what your “new normal” is and to adjust to it, but where do you draw the line with what is new and what is a lingering effect?

When I returned home 3 weeks after my rupture and treatment, I experienced some trouble with urinary incontinence which I chalked up to moving slower and still experiencing some lack of control on my left side. Things seemed to get better after awhile, but the past 6 months I am having a lot of problems in this area again. It is like there is no muscle control on my bladder.

I mentioned this to my primary care provider a few months ago and she brushed it off as aging (I am 56). However, it has been steadily getting worse to the point where even using pads, etc., I am changing clothing once or twice a day and last night I soaked my bed – even though I drank nothing other than a small sip of water after 5 pm, and that was to swallow my meds at bedtime.

I read a post on a FB group recently where a patient’s neuro told him or her that there is not enough study on survivors of aneurysm ruptures to know what is a result and what is not. Has anyone else been told this? And has anyone else experienced something like this?

Thanks!

So let’s do the math…no longer my strong point so someone check it for me…

Here’s where I got the stats

So if we take the 30,000/yr that rupture, we can hypothetically reduce to 15,000 that survive (4500 never make it to hospital in US) so that’s the approx 50%.

For the 15,000 that survive 66% or 9900 have some neurological issue. These are all just numbers and I’m not sure they’re realistic as despite how much I like the BAF and the folks who do a lot of the work, no one is citing the studies, nor how they came about their numbers. My professors would have reamed me one!

So for you and me, and others in the same boat, we are lucky to be here. When I ruptured, the team told my better half they didn’t know what to expect if I woke up and it was a big if. So, though I don’t have any bladder issues, it’s pretty feasible that a portion of us do. The brain is like the main computer for our bodies and if something has stopped the pathway for information, stuff will happen.

Because no two brains are exactly alike, the medical field just can’t forecast what will be wrong with an individual. I haven’t read many studies at all about following those of us who rupture. I have been asked to participate in two since I ruptured in 2013. But I was never sent any information on their findings.

I did a search and came across this article https://www.urologyhealth.org/urologic-conditions/neurogenic-bladder

Seems like you either need to push your PCP to do the appropriate tests or to send you to an urologist. Perhaps if you have a neurologist, they can do the tests. Remember to check your medication and see if incontinence is listed as a side effect. Ask your pharmacist, they know medication better than most doctors. Make sure to tell them about any supplements, vitamins, otc medication you use as they can have strange side effects.

I was on heart meds for years and discovered quite by fate (ruptured) that it was the wrong drug for my heart condition and was even contraindicated for it, it caused me to always be almost diabetic on most days and sometimes diabetic on other days, it messed my toenails up which really made me mad after I ruptured. I quit taking it and sugars are now always in the “great” range.

My mom used adult pull ups for her bladder control issues. She bought them at Sam’s Club. She used to wear them at night or if she went somewhere, then wore them everyday, all day. The year before I ruptured I was diagnosed with spondylolisthesis and cauda equina Syndrome The Cauda Equina Syndrome it is a loss of control of bladder and/or bowels along with no reflexes from the waist down. It was surgically repaired with pins and screws, for me, there was no room to cage my spinal cord which was the initial plan - pin, screw, cage and keep me in the bed for five days…I got up and out on day 3. How they kept me in NeuroICU for 26 days is beyond me lol (it was the vasospasms)

Hang in there, be your own advocate, don’t believe everything on FB, ask your Neurosurgeon.

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Kegels! This is an exercise to strengthen the control around the bladder. Every time I am at a stoplight, I do a few Kegels. It’s basically trying to pull your bladder up into your abdomen. It tightens things up for me after having 2 9-lb babies. The aneurysm didn’t produce this in me, but every aneurysm is different in the area of the brain affected and the size of the rupture. Your brain area might have controlled bladder muscles. You are not alone among 50+ women (and men) or there wouldn’t be an entire aisle devoted to incontinence products at Walmart. My mother was told by a wise older woman that it was actually counterproductive to drink tiny amounts of water, since concentrated urine is irritating to the bladder. Neurologists probably know less about this than gynecologists or nephrologists. There is a surgery for weak bladder muscles that you might want to ask about. Thank you for asking about it. How frustrating it must be!

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Yes, I have always been a big advocate of the Kegels! But they seem to not be helping any longer. I did see my PCP today, and she took a urine sample to be sure there is no infection and we discussed a couple of treatment options.

I do not have insurance right now, but I did see my PCP today. In looking back at my file, she looked at some of the other things that I have been to her for and said, “It is almost like your aneurysm rupture accelerated your aging process!” In other words, all of my complaints are typical things that happen as we age, but in my case they seem to be happening at a more rapid pace. As I have thought about it, it is definitely how I feel!

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That’s so interesting that we have aged faster because of the aneurysm. I know cognitively I have word finding problems and short term memory loss, like my friends that are in their 70s. I’m in my 60s. The brain controls all the systems in the body, so it makes sense any problem in the brain would show up elsewhere in other organs. So sorry about the health insurance problem. That adds to the stress.

It’s really hard to not have insurance, but the cost has skyrocketed in the last three years or so that I’m not sure how anyone can afford insurance. I’m on disability and it takes a little over ⅓ of my check after they take out the taxes. COBRA was a little more, but it covered more so less out of pocket for visits and meds. How did the urine test go?

I am fighting for my disability right now – have an administrative hearing on December 2. The UA was clear, so yesterday I picked up the prescription for the incontinence. Last night, after just 1 dose, I made it through the entire night without having to get up to change wet pads and pajamas. I am just so tired of fighting one thing after another all the time! But yet, SS tells me that I should be able to work!

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Hi, I’m happy you survived. There are a lot of people having bladder issues as you can tell from all the commercials. A lot of that is due to medications. As Moltraub suggested, you may want to see if medication is the cause.
If you are able to do kegals and maybe try interrupting your flow while urinating, then you have control over those muscles. I don’t agree that it’s a result of aging. 56 is quite young. Try to find a doctor who’s a bit more pro active. Good Luck!

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I learned that if I had never received my degree, had stayed in factory or construction, I would have gotten disability right away. There is something in the formula that equates a college education as being a detriment for receiving disability. I personally think it’s how the admin person who writes it up at the doctors office as well, mine had me released to go back to work while I was still in ICU. Then there’s how they name it. There’s three ways to call a ruptured brain aneurysm, I think SS doesn’t have any in their list. That’s what the lawyer said. Then there’s the paralegal who picked the second or third coiling and not the first. The lawyer had her call me and tell me it would be another 20 months or so because of the back log, just to get to see a judge. I ended up contacting one of my Senators aides, the one that deals with Health issues. After that call, I received it in two weeks! This was after my assessment with the psychologist who said he didn’t think that I would ever be able to work. I was lucky though, I receive two disability checks, one from the state because of my job and one from SS. I also think the way the Occupational PT for the state wrote up my test for the back surgery the year before I ruptured had a lot to do with receiving it. She said my job description the county had sent in was the worse she’d ever read, lol. Oh and my lawyer said not to wear my sunglasses in court so the judge could see how much the photophobia affected my speech and tremor. My understanding is I was called to testify 3 or 4 times for cases I held as a SW and the agency said no. Finally I happened to see one of the pro bono lawyers at the PCPs office and I’ve never been called again. ROFLOL

Look into bladder therapy…yes there is such a place.
I did it a few years after my hysterectomy and it was helpful. Most people do kegels incorrectly not using the correct muscles . There are actually floor exercises you learn to do that helps. I was very surprised by the whole therapy.