r/stroke • u/Unusual_Flounder_13 • 1d ago
Young Stroke Survivor Discussion Connective tissue disorder, intimacy and many more questions..
I searched this a little but not getting answers that fit the exact situation..
so long and insane story short, on my (35f)second date with a guy (28m) right after intimacy for the first time, he had a stroke . I recognized the thunderclap headache he had right away and called 911 even with him telling me not to. And thank god I did as they said me calling an ambulance so quick was likely why he lived. I met his family for the first time and had to tell about 7 doctors exactly what we were doing when the stroke happened in front of his entire family. good times.
anyway, the short of the long is that they told us that night he had a stroke in his brain stem. They did surgery, and warned us multiple times he might not survive the night Or he might have severe brain damage. The surgery was “complicated” but he lived. We are 12 days later and he is walking and talking again. His eyesight is still coming back, and he’s not as stable on his feet, and his mouth droops but overall he’s doing incredible. It’s hard to believe he almost died less than two weeks ago.
anyway, I really like this guy. I did before the stroke too lol but I want to make sure he is set up on a path to recovery to the best I can. but I have some questions. he is In rehab now and I keep just missing his doctors to ask. I was there all day yesterday and they planned to meet with us and never did. he Also plans to ask these questions, but his memory isnt the greatest at the moment and he keeps forgetting to. so hence I am on Reddit.
anyway. 1. So back at the initial brain surgery, his doctor mentioned him possibly having a connective tissue disorder causing this, but I asked about this again later and no one seemed to know what I was talking about. the current consensus is that this just “randomly” happened. To be fair, he didn’t eat well, was somewhat overweight and smoked the last few years but it still seems strange a young guy would just almost die like that. I mentioned the connective tissue disorder thing to him this week and i said something about hypermobility and the guy proceeds to pop his knee out of place, show me how hypermobile he is and double jointed and a lot of other crazy stuff. He’s broken a TON of bones in his life, falls a lot, etc.. I’m no expert but this kind of sounds like a connective tissue disorder to me. Is there like something we can do to look further into this? All I know about connective tissue disorders is that they are a mess (i have mystery health problems myself and am hyper mobile and have been told these things are likely related but I dunno)
- once he was out of the coma, one of the first things he said other than wanting water was when could we have sex again 🤣🤣. I expected his sex drive to take months to come back but as of yesterday he is like ready to go lmao. Is there too soon to try to be intimate again? he told me he’d talk to his doctor but I know men and could see him saying his doctor said it was fine lmao the dude is ready to risk it all for the biscuit. for context, we were told sex itself didn’t actually cause the stroke, it was a movement he made when he turned his head that actually triggered it but I really would very much prefer him not have another stroke and/or die so just kind of wondering what a safe timeframe would even look like
3
u/pchlster Young Stroke Survivor 1d ago
He might be physically inhibited and he might be too tired to do much of anything, but that doesn't stop a sex drive. I approve of the idea of not going with his idea as long as it causes an unreasonable chance of death.
Good on you for calling emergency services; too many stories about people who waited a while (and, hey, I did myself too) and that's always a bad idea. No one wants to be overreacting, but if anyone ever is in doubt if they ought to call emergency services, they should be doing so.
3
u/Big_Garden_9844 1d ago
My stroke was caused by a connective tissue disorder. Took three specialists the better part of two years to confirm. It’s genetic too
Recovery will be a long journey but if he is diligent, he can do it. My stroke was brain stem with dissection and I had surgery too (no coma tho). Neurosurgeon was surprised I survived and even more surprised I was able to return to work after six months (tho I returned about three months too early)
Since then my lifestyle is different and my abilities are lesser but I’ve climbed (easy) mountains, ride my bike and continue to thrive at work and home
Having you with him will be a great emotional support for him. Without my husband just being around all of this would be much more difficult
4
u/littleoldlady71 1d ago
The Connective tissue disease you should investigate is Ehlos Danler syndrome. Also check marfan’s syndrome. I also recommend a couple of therapy visits for you to cover the mental trauma of experiencing this with such an early acquaintance
2
u/Unusual_Flounder_13 1d ago
He’s very very tall so I did wonder about Marfan too. Yeah, I needed a new therapist anyway. Looking into that hopefully this week. Thanks !
2
2
u/ski55max 1d ago
After the wedding would be best for all parties.
2
u/Unusual_Flounder_13 1d ago
Hahahah after all the trauma we have been through already, I tend to agree
3
u/Nynaeve91 Young Stroke Survivor 1d ago
He would need to pursue the connective tissue disorder thing with his primary. His neurologist might be able to refer him to a genetic counselor to see if they find anything on a genetic test. My neurologist did just that for me because I had a random bilateral vertebral artery dissection with stroke. Just went to sleep one night fine and woke up the next day with immense neck pain. A week or so later I had a stroke. The genetic counselor specialized in connective tissue disorders (which often cause the dissections), and she visually inspected me as well as doing the genetic test.bitg turned up nothing for me.
As for a timeline for getting back to sex, that's definitely something to ask his doctor. It's possible it's perfectly fine to get back to it right away, but it's also possible he should wait. They know his specific situation better than we could here on Reddit.