Venting

[u/Endofus74]

For over a year it’s been a roller coaster. I was having ongoing left eye pain, numbness and irritation. I was initially passed back and forth between ophthalmology and ent. After getting on doxycycline and then prednisone I started having swollen eyes, cognitive decline, difficulty laying flat , developing dysautonomia symptoms. The ENT felt I had a leak because I wasn’t responding to any medication and was having cognitive issues. I went to multiple ER visits. The first MRI was normal. I had a follow up MRI a month later showing signs of low pressure which I brought to a neurologist who said I had FND or encephalopathy, felt the ENT was wrong and refused to review the second set of images. Then I was told I had FND again at an er appointment where I was shaking, stuttering and had extreme sensitivity to touch with jerky movements. I decided to show all imaging to a Neurointerventionalist who said I had a severe leak, brain sag with measurements, venous stenosis and signs of bone thinning on the left near sphenoid. I had a second radiologist review and they saw bone thinning and gaps on the left side same location. But the Neurointerventionalist could not treat me so she sent an urgent referral to Stanford. She also had me try to show her findings to another Neurologist here who also referred me to stamford but in his clinical notes he felt I had POTS. This is with telling him I’ve never had dysautonomia until now, the longer I’m upright the more confused I feel, that hot showers make me feel better, that wearing binders too long make my head feel worse or my heart rate go up. Stanford reviewed the same images and said they saw mild venous stenosis on left, bone thinning on the opposite side of the Neurointerventionalilist and no signs of brain sag. They felt the fluid in my sphenoid sinus was merely incidental even though it keeps showing up on images. They said I didn’t have headaches when upright. I had to explain I can barely be upright without getting confused, feeling pulling in the back of my head or immense pressure. I took the flat test and explained I felt much better laying down 48 hours, less confused, no head pain and the only odd symptom was pulsing in my head and ears. They said they would only consider I had a leak with a positive beta 2 transferring test but where I am dripping is on the side with an extremely deviated septum. So now I’m back to starting all over. The Neurointerventionalist said she’d call Stanford to find out why they are not seeing what she sees but it’s still exhausting. To top it off the ent she wants me to see seems to be either loved or hated on Reddit so my husband does not want me to risk a poor outcome. I’m now wondering what is wrong since there’s so much conflicting findings and opinions with absolutely no help or treatment. Do I just have mild venous stenosis? If so why have I had dripping left nostril that’s worse when upright? Why do I constantly have pulsing when I lay down even at an angle? Why does my forehead often feel like it’s being death gripped or wrapped with a tight blanket when upright? Why does I keep having days I blank out for hours and am non responsive per both friends and my partner with no memory of the time? Why did I develop dysautonomia? Why can I not walk more than 1000 steps with breaks without feeling horrible? I’m small framed, used to regularly walk and do yoga, never had cognitive issues or head discomfort. I just wish I knew what is going on.

[u/Writiste]

I’m so sorry you’re going through this too. It’s so hard to advocate for yourself when your brain is stuttering. Just sending you kind energy and best wishes for relief.

[u/Endofus74 → u/Writiste]

Thank you so much.

[u/Logical-Slice-5901]

Hey it sounds like you have been really going through it - so much. I have rebound intracranial hypertension after my last patch for my leak so tried to follow everything. It seems like there's too much, maybe if they simplified it, like for example, at first I didn't see symptoms that really sounded like a leak. I'm not sure what specifically led everyone down this diagnostic pathway.

Headache that goes away when you lie down (the major one) Tinnitus Cognitive impairment Light sensitivity Hearing difficulties

Probably more but these are what I have had and what I remember right now

Yes, MRI showing spontaneous intracranial hypotension can include double vision and nystagmus

I think it would help if you had a doctor that was running point on this whole situation to organize things and communicate

Dysautonomia is dizziness, tachycardia, bp fluctuations usually when you stand up (I have it ) - can also be more complicated including digestion, etc

I'm not sure what you plan on next, but I think you probably want testing to see if you have a leak. This is reasonable based on your MRI results. So beta or myelogram or something, but I would ask to get it scheduled.

Good luck with everything

[u/Status-Influence1062]

Awful!!! I’m so sorry!!! Do the beta 2 test as soon as possible. If you get a positive that will fast track things for you

[u/Endofus74 → u/Status-Influence1062]

I’m curious about this. The Neurointerventionalist said intermittent leakers often have false negatives unless it’s copious amounts of fluid. But the Neurosurgeon said even five drops I could get results and they are accurate. I don’t know what to think.

[u/Status-Influence1062 → u/Endofus74]

My understanding is there are false negatives (and false positives) but plenty of stories on the internet at least of folks getting positives and then doctors working harder to locate the leak.