Hi all

Not sure if I belong here. I just kind of wander around finding no answers and feeling like I don’t belong anywhere. I had a ruptured brain aneurysm/SAH stroke. No symptoms, no warning, no family history. I got up one night to go to bed. The last thing I remember was “the” headache hit me and I hit the floor. I managed to crawl up on the couch then rolled right back off. The next thing I remember was about 3 weeks later. I knew I was in a hospital. I didn’t know I had been life-lined from my local hospital to a neuro-institute. I didn’t know I was still in ICU. I had numerous surgeries, tests and knew nothing about any of it. I was released to a rehab center and nobody said anything about a stroke or maybe they did and I just didn’t remember. I finally found my patient portals and I asked if I had a stroke. My neurosurgeon said yes but never said anything else about it. I have had some residual problems I think might be stroke related but my neurosurgeon says the aneurysm was completely obliterated so I shouldn’t have any problems. I have a new primary care physician and he’s pretty clueless, like most people who know what happened the silence is deafening. That’s good because I don’t know what to say about it. I’m not even sure what kind of doctor to talk to about a stroke. I think of stroke as related to my heart but this stroke was my brain and my neurosurgeon says move on, there’s nothing to see here.

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Hi @Mugsy

You belong :slight_smile:
We - the community members- don’t turn people away :slight_smile:

Warm Welcome

Are you left with any deficits or challenges?
If so how do they affect you?
Ciao
Simon

Hi Mugsy and welcome to this forum where everyone is welcome. We are a merry band of stroke survivors and their carers and families. We have all suffered different types of strokes and are all on very different stages of recovery.

There is always someone here to offer help and advice or to lend an ear when things get tough, so feel free to ask any questions you might have. Although we are not medical professionals, we have a wealth of experience between us. Nothing beats speaking to someone who knows exactly what you are going through.

Best wishes and I wish you well in your recovery.

Regards Sue

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Well said
:slight_smile:

(And this to make 20 chars)

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@Mugsy you’re definitely welcome here & there’s many of us around to try & offer advice & support.

It must be strange not having any memory of what happened & all the tests that took place.

It’s good that they have managed to sort the cause of your stroke but for those of us who have had a stroke it’s not as easy as “just moving on”.

Stroke isn’t always heart related as you’ve found out. Maybe try your GP for some answers. Write down what you want to know & all being well they can help put your mind at rest.

Best wishes

Ann

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Thanks, nice to find a home. It’s been a rollercoaster ride. It’s been one thing after another and it just keeps on. Right now I am dealing with my eyes. I got wet macular degeneration in my left eye in 2006. I had laser surgery and then the rounds of shots. All was fine then I got dry macular in my left eye. And then my retina specialist told me I had cataracts and recommended I have them removed. I know what it feels like to lose sight and it’s an inconvenience but it’s not painful. Now it is. I had the surgery in March. They have already cleaned the lens and I see worse than I did before. My eyes always hurt, itch, burn, feel like they are swollen and feel like they are tearing up. The last time I went to see my retina specialist his assistant did an exam then gave me a Kleenex. I was dabbing under my eyes and she asked me why I was doing that. I told her because they were tearing and she said no, they’re not. I said well, they feel like they are. She also asked me why the opthalmologist took a cataract out of my left eye and put in an implant. I said I don’t know, he’s the doctor. That cost me $3,000 over what Medicare paid but I was only supposed to need reading glasses. I have to wear glasses all the time. The retina specialist said my vision is worse because I have dry macular degeneration in my right eye. It didn’t hurt before, my vision has gotten considerably worse and didn’t one of the two would have told me this was going to happen? I would never have had it done if I knew.

I’m not expert on this but I asked the neurosurgeon if the vision problem could be residual damage from the stroke and they just keep saying the aneurysm was completely obliterated so I wouldn’t have any problems from it. I know the aneurysm is gone. I also know they drilled a hole in my skull, put in a shunt and drained out the blood and cerebral fluid that was accumulating. I know coiling the aneurysm twice didn’t work and they put a flow diverter stent in my head to redirect the blood.

I don’t know and apparently nobody else knows if this problem could be from the stroke. I had 6 rounds of rehab trying to improve my balance. I staggered around like a drunken sailor. They finally decided that I am as good as I am going to get. But during one of the exercises I was doing the instructor told me my problem with that exercise was my eyes.

I did talk to my primary care physician and he told me to talk to my opthalmologist. My primary care physician’s specialty is referring me to somebody else.

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Gosh you’ve been through it!
I hope things may be better from now :slight_smile:
Ask, rant, celebrate, congratule & comment as you feel helps :slight_smile:

Ciao
Simon

Ps which state or town are you in?

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I don’t think my eyes will get better, I only hope they don’t get worse. The only two involved were the retina specialist and opthalmologist and neither of them are going to step out on a limb.

I am “riding a horse” as my vascular surgeon calls it. I also have 100% blockage in my entire right femoral artery. He won’t try angioplasty unless he thinks he has a 10% of breaking through the blockage. He doesn’t think he has any chance of breaking through so my only option is a cute named surgery Fem-Pop. Absolute horrible major surgery and chances of finding open arteries below my femoral artery to attach are slim to none. I go have the pressure in my leg checked but if I get a cut that gets infected or my pressure drops the other option is amputation. A friend of mine had a Fem-Pop. He cut his foot and it wouldn’t heal so they amputated half his foot then did a Fem-Pop. He had 52 staples. I said holy moly and he said it wouldn’t be as bad for me because he’s taller than me … like 40 staples would be okay???

So when I say I take it one day and one step at a time, I literally mean that. I can’t imagine all of this was the aneurysm, some has to be residual from the stroke.

Then there’s central and obstructive sleep apnea. Including I got one of the recalled Philips BIPAP machines. They discovered 2 nodules on my thyroid gland then they found 2 more with the last ultrasound. They’re slow growing so we are waiting for them to get big enough to do a fine needle biopsy.

I live in a small farming community in Kentucky. I can’t find another primary care physician because I am in Diazepam for anxiety… anxiety what anxiety??? I also take Ambien to help me sleep so in my sleepy little town I feel like a drug addict and they treat me like one. And they just legalized medical marijuana but I can’t get a doctor to treat me. The world has turned upside down and inside out.

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Hi @Mugsy

You do have a lot going on compared to me and most others here.

There are a few fellow Americans here - @DeAnn @Outlander @axnr911 and several more but recall isn’t my strong suit! :slight_smile:

I get that the optics are probably a one way thing. The leg related problems spend nasty from a brief read.

Are you getting the support you need?

It sounds if there is at least involved professionals?

Ciao
Simon

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Like you I had a brain aneurysm. I was more dramatic. I was swimming in the sea in Florida; got caught in a riptide/undertow; started to drown; blood pressure rose; aneurysm burst; now in a coma Someone on the beach saw I was in trouble and got me out. Sometimes these things just happen.

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Hello Mugsy,
Are these guys any good for trying to get a neuro doc.?
Kentucky Neuroscience Institute | UK Healthcare (uky.edu)

KHDSP Task Force – Home - Kentucky Heart Disease & Stroke Prevention Task Force

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Probably. I didn’t have a choice and I was sent to Norton Neuro-institute. I couldn’t have asked for better care and I was a mess.

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Hi Mugsy,
Well that’s something. Having the right help early on is essential to starting rehab. I’ve been so fortunate with carers and therapy.

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There are very many small farming towns in Kentucky. I couldn’t hazard a guess as to which you are near. I am ;your neighbor just north of the Mason Dixon line in Indiana. And before you start, that river may be called the Ohio River, but most of it runs alongside Indiana, so we are going to move that sign that says You are now entering Kentucky just a bit farther south. :laughing: :rofl: :rofl:
I was wondering if you are close enough to Indiana to use Indiana University Health, or Tennessee to use one of the hospitals in Nashville?

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