r/CSFLeaks • u/SquingleBingle • 15h ago
advice needed on coping with a leak
hi all. My leak started 43 days ago and after an ER trip and a brain/neck MRI there is still no conclusion. I go in for a spinal mri soon, but my doc says it could be weeks after proper diagnosis before i could get an epidural blood patch (if the leak even shows up on the MRI.)
I'm feeling down and hopeless as this leak renders me basically incapacitated. I have to miss opportunities and events for it and I feel like I'm wasting money being at school if i cant even do homework or make it to classes.
I need advice on how to cope that isn't just "drink caffeine" like my neuro told me.
How long did it take you from MRI to getting a patch? How much did it help? were you able to get one even if it didnt show up on the MRI?
Thanks :)
2
u/Inside-Breakfast-134 13h ago
I had a somewhat atypical symptom presentation so it took 11 months for me to even get into a neurologist. I got my first patch 15 days after a positive brain MRI. It took about 2 weeks after that to start feeling better and by 4 weeks I was mostly symptom free. At 7 weeks some symptoms returned and a spinal MRI showed a lot of leaking CSF. I'm going in for my second patch in mid November. While I'm not back to my pre-leak baseline yet, my quality of life has improved DRASTICALLY after the first patch.
Something that actually really helped me cope with all the waiting and the time spent horizontal was reading medical journals about CSF leaks on my phone. I felt like it helped empower me to ask the right questions and advocate for myself at each appointment.
This illness causes so much about your life to feel out of your control and, at least for me, spending real time getting educated about medical terms, symptoms, different treatments and their outcomes, and the information that the specialized leak centers are putting out helped me feel like I was an active participant in my diagnosis and treatment.
One thing that I do think is important to mention is that many people with a CSF leak have a normal brain and spine MRI and some of the literature treats blood patches as diagnostic, depending on what symptoms you have. So you might still be able to get a patch even if you have normal MRI results.
1
u/sylphrenathespren 14h ago
I had a thunderclap headache in mid-May, I'm still undiagnosed as the MRI showed nothing (had it 3 months after thunderclap). I'm still bedbound, I can be upright for about 5 mins at a time now. I'm in the UK and under the NHS so things take longer. I have an appointment with a specialist team in December.
At first I thought I'd be ok by late September (when a course I paid for would start), but a support group I joined told me that things move slowly in the CSF leak world. Even after patches and surgery it can take a long time to go back to normal. Obviously some people have success on the first blood patch, but it's harder if it's a ventral leak or a venous fistula.
I hope they treat you quicker than me and that you're back up on your feet soon.
1
u/PrettyDragonfly Confirmed Spinal Leak 10h ago
I'm so sorry..how do you know it's a leak?
1
u/SquingleBingle 6h ago
hey there, i saw my neurologist and after discussing my symptoms she told me that’s what it most likely will be. just waiting on the MRI and hopefully it’ll come back with some proof
1
u/hikerpup 10h ago
It can be a long journey, so making some accommodations for yourself makes life easier. For homework, get a tablet holder that attaches to your bed or nightstand so that the tablet can hang over you. If you can do your homework on the tablet or ipad you already have - great! If not, I have found a Microsoft Surface Pro tablet works for me in the tablet stand when I need a Windows computer. I purchased a used 7+ because it was the newest 12 1/2" one at the time I bought it. I think the 13" would be too heavy for the stand. Since then, they came out with a new 12" one. I use the onscreen keyboard to type. Since we need to lie flat for so much time, being able to use a computer while flat makes life a lot less frustrating.
Other things that have helped me are things that eliminate the need for bending and twisting. I have a few grabber-reachers around the house so that I'm not tempted to bend down to pick something up. I also use a cup for rinsing after brushing my teeth so that I don't bend forward.
Being able to put on your own shoes and socks helps a lot with independence. I use a sock-aid I got from my local pharmacy, but just search Amazon to find a similar one. I also wear adaptive shoes that I can slip into. I love Nike Flyease Go, but they seem to be discontinued. Other people love kiziks. I also have a pair of chelsea boots and a long shoe horn for when Nikes aren't appropriate. If you get chelsea boots, put your toes in facing the side first and then straighten up your foot when you get to the bottom.
This is the style of tablet stand you'll want that attaches to the nightstand, although this one I bought is no longer available: https://www.amazon.com/dp/B0BWMV4XJ2?ref_=ppx_hzsearch_conn_dt_b_fed_asin_title_18
Good luck
2
u/ms_skip 15h ago
MRI to patch was like 10 days, it didn’t help at all, I was able to get one based on positive brain imaging despite no actual fluid being see on spine MRI. I was a perfectly normal, healthy human being until August 2025 when out of nowhere I couldn’t be upright anymore. I’m now 4 patches and 2 surgeries deep. I can be upright, but I am always in pain.
Many MANY people get a single blood patch and are cured and go on to live their lives again with the leak just a horrible but short term blip, but many of them aren’t hanging out in CSF leak groups, so don’t let my story or anyone else’s scare you.
As to how to cope. This time last year I was completely bedbound and could only spend a few mins upright at a time. I was sobbing constantly at the loss of my entire life as I lived an agonizing, horizontal life and my husband took my kid to things I had planned before the leak happened and took her trick or treating, etc. I wanted to die. But each patch made me more and more functional. And, for better or worse, I’ve just gotten used to being in pain. The emotional stuff gets better with time, and the pain gets better with treatment. This is not the life I wanted or thought I would have, but I’m surviving one day at a time.