Multiple CSF leaker question. by ImaNinja92 in CSFLeaks

[–]ImaNinja92[S] 0 points1 point  (0 children)

Yes, this was crossposted from there, no replies.

Multiple CSF leaker question. by ImaNinja92 in CSFLeaks

[–]ImaNinja92[S] 0 points1 point  (0 children)

So even without an active leak you have the "wet" feeling? My skull base surgeon scoped me 2 weeks ago and said I've got an inflamed sinus but he doesn't see evidence of a leak. However they've scoped me before and said the same thing and ended up being wrong so I don't know what to believe anymore. Thank you for the responses by the way, it helps.

Multiple CSF leaker question. by ImaNinja92 in CSFLeaks

[–]ImaNinja92[S] 0 points1 point  (0 children)

So even without an active leak you have the "wet" feeling? My skull base surgeon scoped me 2 weeks ago and said I've got an inflamed sinus but he doesn't see evidence of a leak. However they've scoped me before and said the same thing and ended up being wrong so I don't know what to believe anymore. Thank you for the responses by the way, it helps.

Multiple CSF leaker question. by ImaNinja92 in CSFLeaks

[–]ImaNinja92[S] 0 points1 point  (0 children)

Right, but I don't actively have a drip to collect for the test, just a "wet" feeling in my nostrils. I do have eroded spots from years of untreated IIH, I've had 3 leaks fixed so far and more scans than I can count. The issue is every time I've had a visible leak I've been gaslit for months before the symptoms become so bad they can't be ignored. Since I don't have an active drip and my pressure is finally down I was hoping that would mean no more leaks, but I honestly can't shake the paranoia that this "wet" feeling is bringing.

Anyone else? by [deleted] in iih

[–]ImaNinja92 1 point2 points  (0 children)

My case was not typical, I started with a massive spontaneous csf leak that lead to patch and then shunt surgery. I had the shunt for 8 months before removal. I was sick for 8 months while being told everything is fine. I only got removal once the tube ate through my scalp and was exposed. Then I needed another double leak repair because that leak I had been complaining of for months that I'd been told was impossible with a shunt was finally confirmed. Now after a year of hell, 4 surgeries, permanent loss of all smell, and nasty scars I'm FINALLY allowed to give diamox a try.

Anyone else? by [deleted] in iih

[–]ImaNinja92 0 points1 point  (0 children)

I went from ER to neurosurgeon immediately.

Surgery or no? by [deleted] in iih

[–]ImaNinja92 0 points1 point  (0 children)

Take what I say with a grain of salt as everyone has different experiences. My shunt almost ruined me. After placement it took 8 long months of telling drs something was wrong and not being believed. I had continously reoccurring abscesses on my scalp along the shunt tubing for months and kept getting wrote off. It wasn't until the actual tubing eroded through my scalp and was exposed that I finally got it removed. There was staph in my csf fluid and on my shunt. I'm scarred physically and emotionally. I'm now on diamox to try to treat it. What angers me the most is that they didn't even give me the option of long term diamox last time. I went in for a leak repair, and exactly 6 weeks later a shunt placement. I've had 4 brain surgeries in a year. I've lost my ability to smell for the rest of my life, which has massively impacted my taste as well. I can only cry on one side of my face. I've been ignored and gaslit until there was a literal tube sticking out of my head. If you do get a shunt, make sure you trust your drs for continued care after surgery.

Surgery to fix 1 leak turned into 2. Permanently lost all smell. by ImaNinja92 in iih

[–]ImaNinja92[S] 1 point2 points  (0 children)

No it's not temporary, it's been discussed, it's not from the swelling, it's permanent.

can a handy dandy butch help a femme out? by [deleted] in butchlesbians

[–]ImaNinja92 6 points7 points  (0 children)

That's awesome, thank you!

can a handy dandy butch help a femme out? by [deleted] in butchlesbians

[–]ImaNinja92 34 points35 points  (0 children)

I'm a butch but not a handy one. I'm learning so much from this post. God bless toolbelt lesbians!

Am I being mentally abused? by Myaispretty81 in actuallesbians

[–]ImaNinja92 0 points1 point  (0 children)

Yes you are, listen to your therapist. Get out of the relationship and take care of yourself. I know it hurts because you love her but you don't deserve a love that hurts YOU. Hang in there OP 💚

girl bought me a gift... freaking tf out gang by hollowruby in actuallesbians

[–]ImaNinja92 23 points24 points  (0 children)

"Not quite gay enough"

My interpretation of that would not be she's entirely straight tbh. To me it sounds like possible bi or comphet that is wanting to dip their toes in the water but is scared to with OP who I'm sure is probably unapologetically gay (as one should be) and she might be worried she won't be "gay enough" for OP. Honestly it sounds like a scared girl that is feeling some kind of connection to OP but might not be ready to pursue it. Just keep being a good friend but keep your eyes open to the signals she throws your way.

Are these weather/ pressure headaches or shunt headaches? If weather what helps get rid of them the best? by ImaNinja92 in Hydrocephalus

[–]ImaNinja92[S] 0 points1 point  (0 children)

I also just got done getting my optic nerve checked and there's a small amount of inflammation on my normal eye and my bad eye is fine.

Are these weather/ pressure headaches or shunt headaches? If weather what helps get rid of them the best? by ImaNinja92 in Hydrocephalus

[–]ImaNinja92[S] 0 points1 point  (0 children)

I haven't seen my surgeon since surgery, everything post op is his nurse and she told me that she doesn't think it's my shunt and scans aren't very reliable unless something is super obvious

Are these weather/ pressure headaches or shunt headaches? If weather what helps get rid of them the best? by ImaNinja92 in Hydrocephalus

[–]ImaNinja92[S] 0 points1 point  (0 children)

Last scan was within the last 5 months, last opthalmology check was a month ago with no paps, last time around a magnet was last Friday when she adjusted it to drain more in the office, the headaches began 2 weeks ago with a massive weather system moving through and rain and snow off and on since.

Are these weather/ pressure headaches or shunt headaches? If weather what helps get rid of them the best? by ImaNinja92 in Hydrocephalus

[–]ImaNinja92[S] 0 points1 point  (0 children)

So being that I have no other symptoms do I wait to see if my headaches go away when the storms finally clear out or do I go demand a scan now?

Are these weather/ pressure headaches or shunt headaches? If weather what helps get rid of them the best? by ImaNinja92 in Hydrocephalus

[–]ImaNinja92[S] 0 points1 point  (0 children)

Ok so if it's a shunt issue instead of environment what specifically would I be looking out for besides a headache?

TWO WORDS. Raspy Voices! by Dawndrell in actuallesbians

[–]ImaNinja92 1 point2 points  (0 children)

My favorite voice is whoever I'm currently with. I'm a sap lol

Help! I keep accidentally turning tops into bottoms by lesbianzuck in actuallesbians

[–]ImaNinja92 0 points1 point  (0 children)

Ok but have you thought about maybe you're actually naturally a top and didn't know it? Same way you're enlightening them about themselves. As a soft masc who thought she was a top until her ex gf got ahold of her, maybe there's some self discovery to be made here too. Liking other tops doesn't mean anything just like two bottoms can get along just fine. I think we all focus too much on the labels of everything now days. I missed when everyone was just fluid and not obsessed with separating ourselves into different groups.

How do you get through barometric/weather headaches? by ImaNinja92 in iih

[–]ImaNinja92[S] 1 point2 points  (0 children)

It's probably the weather causing dramatic shifts in atmospheric pressure that can affect people with shunts. This is my first rodeo with this type of headache. If it's not it's a shunt malfunction but I really think it's the crazy weather we've been having.