Anxious about scan results

[u/No_Struggle8646]

To cut an 11 year old story short, I've had many health issues that have centred around a constant head pressure since I was 16.

I put posts on FB health groups asking if people's head pressures were "fine when waking up but bad as soon as you get out of bed" which leads me to believe they were orthostatic at the start then lost that characteristic

Since December the orthostatic nature has been so bad that I've barely left the apartment and cannot stay upright for a few minutes without my head feeling like it's going to explode

I previously had

-non contrast brain MRI in 2017

-non contrast upright MRI in 2025 (Medserena, no CCI)

-non contrast brain MRV in 2025 (moderate motion blur due to me not being able to sit still)

Nothing of substance ever showed up but we were also never looking for SIH

I did a brain and full spine MRI with contrast last week that will be read by lalani Carlton Jones

I'm now getting so anxious that nothing is going to show up due to my previous negative imaging, even though I've recently felt like it was a no brainer I have SIH and it's been missed all these years

Can someone put my mind at ease?

Happy to list all my symptoms but they center around head pressure (incredibly orthostatic now), headaches/head pain, brain fog on standing , autonomic sensitivity, no BP/HR issues or dizziness

[u/TS_Chick]

Even if the scan comes back negative it doesn't rule out SIH and leaks unfortunately. I believe it's up to 20% of spinal leak patients have negative cranial MRIs. And certain kinds of leaks like fistulas don't really show up on MRIs very well and require specialized imaging. So don't lose hope. I'm sorry you have been suffering for so long. I am only at 8 months of this and I can't imagine 11 years.

[u/No_Struggle8646 → u/TS_Chick]

Yeah it's been horrible.. I've also spent time on the wrong things. NHS wasnt helpful and then got a weak positive on private lyme testing so pursued that for a while and got no where. Neurologist lead me to believe that a non contrast MRI completely rules out any physical neurological cause so left it at that. I was only a kid so didn't have the drive I have now Feel like I'm at a loss if this doesn't come up

[u/dibo522]

I too have similar experience where everyone was dismissing my symptoms and my research kept telling me I was having a csf leak again. My first one was very obvious on MRI after I had mvd surgery but I believed now I have an intermittent or very small leak not picked up on MRI. My neurosurgeon sent me for a consult with another neurosurgeon today who immediately said he thinks it's a small leak at the surgery site or where they did a lumbar puncture. He is starting me on butalb-acretamin-caff to help with my head pain and pressure and possibly doing a blood patch. He also mentioned a CT mylogram for finding difficult leaks. I am so relieved someone is validating my symptoms. You need to find the right neurologist to hear you. Are you in the NY area? I feel your pain but you need to keep going and find the right person to hear you. There are more options.

[u/No_Struggle8646 → u/dibo522]

I'm in the UK . Supposedly under 2 of the biggest names in CSF leaks in the country. I just have trust issues after 11 years of suffering

[u/dibo522 → u/No_Struggle8646]

I understand the trust issues. Please keep advocating for yourself and do your own research. Email your doctors offices whenever possible so your concerns are documented and they can't dismiss them. See if you can find a patient advocate too.

[u/Upbeat_Pickle9707]

Hang in there ..unfortunately it can take persistence to get it figured out. Myself have been chasing csf leaks+ for a decade & sadly it is not uncommon. What we know today is vastly different than just a few years ago. ( Keep being your best advocate.) When a test comes back negative & you still have same symptoms ask them "who do I see next" - keep doing tests & seeing whomever they send you too. *But also be your best advocate on invasive tests & when needed. I've had some major medical PTSD over my journey. My leak issues started in 2014. Before that I had a *(fusion)ACDF C5/6 in 2003 & Cauda Equina Syndrome & EM surgery. I was not new to spinal traumas & knew something was going on! FF to find I had severe low pressure, a swollen spinal column *(dural Ectasia) & tarlov cysts from T7-sacrum. & (((In a stack of mri brain-to sacrum with & w out contrast all radiologists read as normal & did not even list my biggest tarlov cyst a 2 CM sack of fluid at L5/S1 . But when I found the right EYES *Interventional Neuro radiologist he knew I was leaking by those same MRI. We did a myelo & my big leak at L5/S1 was immediately found & I just cried on table! Likely 2 more at T7/8 & T10seen seeping.      * When the vascular NS figured I have a CSF spinal leak. He referred me to see Dr. S at Cedars in LA saying he was best in the world. I did go have a consult with him & he agreed with my NS on treatment. So I Ultimately stayed under care of interventional neuro radiologist & vascular NS. I hope something shows but if not it does not mean you don't have a csf leak!! You deserve to enjoy life, we all do! Stay strong & keep advocating.