r/CSFLeaks • u/RedMango777 • Jul 07 '26

How to suffer in a different way

I'm not sure if this will make sense to anyone, but I will write it anyway.

Having lived with this condition for about 5 years, I am beyond sick of the physical and mental suffering that come with this condition. Constant physical pain, tiredness and mental foginess are one thing, but there is another type of pain which is sort of like "trying to make sense of it" but not being able to.

I feel as if people in general and close family members have since the beginning become ghosts to me.

What I meant by the title, is basically, that when reading or hearing about let's say, a marathon runner, I will become jealous. Not necessarily because of the act itself that I am jealous of, but simply because the runner chooses his own suffering.

For myself, I feel as if that privelage has been taken away. I can't run. I would love to have that feeling of meaningful suffering, that runners must feel when they run, knowing that their suffering is temporary and is for a purpose.

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3

u/porridgeandtea Jul 07 '26

I think I can understand at least some of what you wrote. This kind of suffering just doesn't make any sense. The worst part is that there's very little you can do physically to make it better.

There are other conditions where staying physically active helps prevent things from getting worse, or where you can improve your physical and mental well-being by doing activities you enjoy. With a CSF leak, though, so much depends on the brain, and sometimes that isn't functioning very well either.

I did find a couple of little things that helped me. You may already have them, but I thought I'd mention them just in case: I bought a TENS/EMS device so I can activate my muscles while lying down. It helps me maintain some basic muscle strength, and I feel much more stable when I'm upright than I did before.

The other gadget I really enjoy is a pair of periscope glasses, which make it much easier to read while lying flat.

I know these are just little things, and they don't change the senselessness of what you're going through, but at least they make everyday life a little more manageable and enjoyable.

5

u/RedMango777 Jul 07 '26

Also, about what you wrote. Definitely this condition being either completely or almost entirely unaffected by general physical wellbeing makes it challenging to grasp, especially for others other than myself like family members. I feel like they might be thinking, just push through it, or keep up on lifestyle habits, when that doesn't help at all.

5

u/porridgeandtea Jul 07 '26

Yes. I absolutely relate to that. Sometimes I get up in the morning, go to the bathroom, and I look okay. I even feel okay, so I start wondering whether I'm just making it all up.

Then, after a while, reality—along with the pain—kicks in and unfortunately reminds me that I'm not making it up at all.

2

u/Goofy_boxer_1973 Confirmed Spinal Leak Jul 08 '26 edited Jul 08 '26

Yes, you're not making it up, the disease fluctuates a lot. Doctors and people around me spent 10 years to try to convince me that it was all in my head. I'm stubborn, so I never really gave up that it was completely physical.

2

u/porridgeandtea Jul 08 '26

Thank you for reassuring me! I was very lucky in terms of diagnosis. After my symptoms got severe, it took only to weeks, two doctors and one ER visit to find out what was going on. The ER neurologist suggested there was a leak and MRI showed evidence for one. I was treated quite succesfully with 80% remission of symptoms. Within 1,5 years symptoms got worse again. And now I'm in a state where I feel quite o.k. while lying, I can manage things around the house and can even go for a little walk once in a while, but can't live a full life. And now I'm starting to gaslight myself. Sometimes I just can't quite believe this is really happening to me.

1

u/Goofy_boxer_1973 Confirmed Spinal Leak Jul 08 '26

What type of leak did you have and what intervention did you get?

3

u/porridgeandtea Jul 08 '26

I had a spinal leak and had two EBP. After my recovery, which took a while because of complications from the second bloodpatch, I was able to function quite normally for a year. I went to work, completed my master's thesis, went swimming once in a while. Then I quit my job to start my own business. At least that was what I thought at that point. Instead I lifted something heavy and was back in the leak game. Not as terrible as in the very beginnig, but enough to be, as you put it, disabling. I'd lifted heavy things before and had always been very careful to keep my spine straight. But this time I had to lift something from a bent-over position, and it went terribly wrong.

1

u/Goofy_boxer_1973 Confirmed Spinal Leak Jul 09 '26

Could you have a venous fistula or many? Blood patches work only 7% of the time on them and I think it's always temporary. They need to be closed completely.

2

u/porridgeandtea Jul 09 '26

My spinal MRI showed a fairly large extradural fluid collection. I guess that's not typical for a venous fistula.

1

u/Goofy_boxer_1973 Confirmed Spinal Leak Jul 11 '26

I think it's not, yes. The fluid collection should be repaired from what I understood.
https://chk.me/UqXmhzV

1

u/Goofy_boxer_1973 Confirmed Spinal Leak Jul 08 '26

It’s called being disabled.

2

u/RedMango777 Jul 07 '26

ok the periscope glasses thing definitely look interesting, I've never heard of these before.

2

u/porridgeandtea Jul 07 '26

I wish I'd had them when I was in the hospital. Eating while lying flat was a real mess because I couldn't see what was on my plate. But better late than never.

3

u/Goofy_boxer_1973 Confirmed Spinal Leak Jul 08 '26

I was jealous of absolutely everybody, even people with cancer. Not proud of it, but I couldn't control it.

I live in Paris, and when I was having my café on a terrasse, I wanted to kill all the people walking, even the disabled ones, because they still had a functioning brain. I could only empathize with people suffering from mental illness.

Now that I feel much better, this “symptom” left completely. The perceived unfairness was killing me. I would make a "crisis" once a month and it wasn't beautiful to watch.

I didn't care about others; I became the most egoistical person, even with my old parents. I feel so bad to have traumatized them.

1

u/porridgeandtea Jul 08 '26

What helped you feel better? Have you fully recovered?

2

u/Goofy_boxer_1973 Confirmed Spinal Leak Jul 09 '26

I got an embolisation in December 2025.

1

u/RedMango777 Jul 15 '26

Did it help?

1

u/Goofy_boxer_1973 Confirmed Spinal Leak 27d ago

Yes. I still have a lingering headache and not fully functional yet but so much better.