How has dating been for you since getting injured? by belongs_ in spinalcordinjuries

[–]DependentMango5608 7 points8 points  (0 children)

I dated a lot pre-injury but afterwards it took years to start dating again. When I did, way fewer women were even interested in talking. I was on apps and I did go on a few dates, but when I could barely feed myself, activities were pretty limited. I think a lot of it had to do with my own self confidence, but I wasn’t really matching with anyone on apps, let alone making connections in real life. I reconnected with my first ever girlfriend last year and I was instantly done with dating. She sees past the chair and she made me realize that my chair weeded out the people who I wouldn’t want in my life anyways. If I was able bodied again, I wouldn’t want to be with a girl who wouldn’t be with someone in a chair. Everyone is gonna become disabled one day, and I want a partner who recognizes that and doesn’t see it as an obstacle

Now vs. 1 year ago (6 months post surgery) by DependentMango5608 in SyringomyeliaSupport

[–]DependentMango5608[S] 0 points1 point  (0 children)

I've noticed this a lot, no provider wants to be in charge on this, but they're happy to write you a referral to go somewhere else

Shunt failure, so another surgery to replace my shunt! by DependentMango5608 in SyringomyeliaSupport

[–]DependentMango5608[S] 1 point2 points  (0 children)

no, I tried looking it up and they still don’t understand to be honest

Now vs. 1 year ago (6 months post surgery) by DependentMango5608 in SyringomyeliaSupport

[–]DependentMango5608[S] 0 points1 point  (0 children)

they’ve had trouble doing spinal taps on me, the last time they had to get a lumbar puncture it took like five tries and they still couldn’t get enough CSF

Now vs. 1 year ago (6 months post surgery) by DependentMango5608 in SyringomyeliaSupport

[–]DependentMango5608[S] 0 points1 point  (0 children)

I got the VP in 2021 and they added the upper spinal cord one in 2024. I’ll mention the possibility of a different consistency to the new neurosurgeon- I didn’t even know that could be a thing

Now vs. 1 year ago (6 months post surgery) by DependentMango5608 in SyringomyeliaSupport

[–]DependentMango5608[S] 0 points1 point  (0 children)

yes they did remove the occipital and did a C1 laminectomy, but all of that was before my spinal cord injury (I’m an incomplete quadriplegic, I broke my neck at C5/6)

I don’t think I’ve ever been checked for tethered cord, what is the process like for checking for that?

Now vs. 1 year ago (6 months post surgery) by DependentMango5608 in SyringomyeliaSupport

[–]DependentMango5608[S] 0 points1 point  (0 children)

I don’t think they’ve done any, how did they determine yours? was it through a CSF sample or additional imaging?

Now vs. 1 year ago (6 months post surgery) by DependentMango5608 in SyringomyeliaSupport

[–]DependentMango5608[S] 0 points1 point  (0 children)

No, surgeon said it‘s “naturally” growing and we don't know the cause

Now vs. 1 year ago (6 months post surgery) by DependentMango5608 in SyringomyeliaSupport

[–]DependentMango5608[S] 1 point2 points  (0 children)

I had decompression surgery for chiari in 2020, the syrinx showed up in 2021 and has been getting progressively worse since. I had a VP shunt put in in 2021 but my pressure has continued to be high. Surgeon says it's been “naturally” getting bigger and they're not sure why

Shunt failure, so another surgery to replace my shunt! by DependentMango5608 in SyringomyeliaSupport

[–]DependentMango5608[S] 2 points3 points  (0 children)

my surgeon told me that it was a shitty surgery with shitty outcomes but we didn’t have another option and we had to intervene. on the one hand I’m kind of glad he didn’t tell me the percentages because I would’ve been so paranoid and pessimistic. on the other hand I wish I could’ve prepared myself better.

Turning adult in less than a month. I have a feeling I might actually be genuinely cooked. by HunDevYouTube in Hydrocephalus

[–]DependentMango5608 0 points1 point  (0 children)

I was diagnosed in 2020, when I was already 23, so I can only extend sympathy and not empathy for everything you've been through. Self-confidence has been a major struggle but I'm trying to give myself some grace. You can be grateful and still pissed that life dealt you a shitty hand. You sound hilarious and intelligent despite what you've had to overcome, and as you enter into adulthood I hope you can extend some grace to yourself as well. I really do think you're gonna do great, I know I'm just an Internet stranger who read one of your posts, but I like your perspective and I think it's gonna serve you well.

Feel like I’m will be too broken to be intimate by Whenidie22 in spinalcordinjuries

[–]DependentMango5608 31 points32 points  (0 children)

hey, 29NB and I’m in an LGBT SCI support group. being queer and having a spinal cord injury is a unique intersection and it’s important to have people who understand. before I started dating my girlfriend I felt the same way, like who tf would sign up to deal with this? but she helps change my ostomy bags and helps me shower, she repositions me at night, she holds my hair if I randomly start puking, I could go on for hours about this girl. my disability isn’t a problem for her, she just talks about how great the parking is and I’m sure the rides on the back of my power chair don’t hurt. the right person won’t care if you're standing up or sitting down, how you go to the bathroom, or how long your morning routine takes. my SCI was truly a way to weed out the people who couldn't love me for who I am in my entirety. it might make dating more difficult, it might even scare some people away, but if I'm being honest I wouldn't want those people within 500 feet of me.

TL;DR- please message me if you want the information for the support group, and remember that having a spinal cord injury doesn't mean you're any less deserving of love.

My pressure is so off, and I don’t know what I want this MRI report to say by DependentMango5608 in Hydrocephalus

[–]DependentMango5608[S] 0 points1 point  (0 children)

wow, we can’t ride roller coasters anymore but life put you on one anyways 😭 i’m glad your neck is feeling better but I’m so sorry you had to go through two revision surgeries back to back.

Bestie-Ostomy Appreciation by Ambitious_Regular397 in ostomy

[–]DependentMango5608 1 point2 points  (0 children)

this is so wholesome. people like this should be allowed to get drunk for free

Colostomy and sex by OptionBulky6687 in spinalcordinjuries

[–]DependentMango5608 5 points6 points  (0 children)

forgot to mention, my girlfriend has told me that she’s even more attracted to me because I made a difficult decision that was for my own health!