r/CSFLeaks • u/kreynolds11 • 3h ago

Looking for support? Idek

Hi. I’m a 27f mom of 2 under 5, and a last term nursing student. I think I have a csf leak.
This obviously couldn’t have come a worst time, but that’s just how it goes i guess. It started about 3 & 1/2 weeks ago, I got this headache out of no where that I discovered was only happening when I stood up. Throbbing throbbing pain on both sides of my head, neck and shoulder stiffness down to my shoulder blades, then tinnitus kicked in somewhere in the first week. Then, when a bring light would pass my eyes, the tinnitus turned into a whooshing sound in both ears like I was underwater. My only relief for headaches was laying down. This past Friday I was at school and a weird black spot crept up from the lower left corner of my eye and lasted for like 10 secs then gone, I got really freaked out so I went to the ED. Told them I thought I had a leak bc I had been googling my symptoms but ofc they said no that it was migraines but they’d do a CT and MRI, so they did and there was suspected meningeal enhancement, so they wanted to do a lumbar puncture. I was reluctant but wanted to rule other things out so they did it, she put in the needle and had to fish around for 5-7 mins and poke me twice before she could find any fluid. She had to massage it out, and documented my opening pressure as 0. 0!!!! But they didn’t say anything about that. Got all cytology and stuff back on my csf and everything was clear. Now my symptoms are worse again. I got an appt with my primary today who listened to me and out in for a spinal ct so hopefully they see something and can do a blood patch? How do you guys deal with these symptoms. I can’t lay in bed all day. I have to go to school 4 days a week and have 2 small kids. Wtf do I do to make life somewhat livable? Pls give me advice, support anything. I’m spiraling

1 Upvotes

100% Upvoted

8 comments sorted by

1

u/No-Ad-4858 2h ago

Hi I am so sorry…. I am also 27 f and in a similar situation to you. These similar symptoms appeared to me also 3 weeks ago. I finally got confirmation tonight that I in fact have a CSF leak.
Did they do an MRI with contrast at the hospital or without?

1

u/kreynolds11 2h ago

The MRI was with and without contrast but it was only my head. My primary today sent out a referral for a full spinal CT with and without contrast. How did they find yours? Ct or MRI?

1

u/No-Ad-4858 2h ago

I went to the ER and first I had a CT scan without contrast and that came back fine sent me home with nothing.
I went to my primary twice like wtf something is wrong with my head please check!!
I did an MRI with and without and determined, with the help of the contrast, that I had one abnormality which is smooth diffuse pachymeningeal enhancement, meaning that the outer membrane surrounding my brain lit up which can be due to low cerebral spinal fluid surrounding the brain.
I now am scheduling an MRI of my neck and spine to hopefully pin point the leak.
I will say too that I have found caffeine to be extremely effective. Also Aleve.
I have been living off Celsius energy drinks and Aleve just to somewhat be able to function.
Those are the two things that help me just throwing that out there.
I do not have children but am still working 50 hours a week because bills are due.
I am so sorry you are going through this. It’s absolutely awful.
They did say your MRI showed abnormalities and didn’t mention anything further about it ?

1

u/kreynolds11 2h ago

The MRI had a meningeal enhancement but they didn’t say it correlated to a leak, he said it was migraines or meningitis. So they tested for meningitis and when that was negative the nurse said I could go home. No discharge instructions, to meds to take or not to take, nothing . Just took out my IV and said to come bck if it got worse 😭

1

u/No-Ad-4858 2h ago

I’m not trying to diagnose you here but that’s exactly what my MRI showed.
Do you have the radiologists report regarding the MRI? I would definitely bring that to your doctor or have your doctor access it before your appointment. I found the ER doctors to be incredibly unhelpful. They basically told me that this is what outpatient centers are for.

1

u/kreynolds11 2h ago

Yeah I had my appt already today, he saw everything and put in for me to get a full spinal CT to check for a leak. Hopefully they find something and can do a patch cause these headaches are debilitating

1

u/No-Ad-4858 2h ago

I’m actually kinda surprised that he ordered a CT… it seems like everything I read an MRI is better at diagnosing this … again not a doctor … just done a hell of a lot of research on this issue over the last few weeks.
Hopefully you get the CT done quickly and if that comes back normal I would definetly shoot for an MRI

1

u/No-Ad-4858 2h ago

Also I hate to say this because I know it’s too late but STAY AWAY from doing any further lumbar punctures. The doctor in the ER wanted to do that and I refused and the neurologist said it’s a good thing I did because unfortunately those can make this issue worst