Help Me Find My Brain Fluid Leak

Hello, my name is Kara. I am 29 years old, and have been struggling with unexplained health issues for years now. After tens of thousands of dollars of tests to find out why someone so young and healthy looking was struggling so much, doctor after doctor gave up. They each determined that I was either faking my symptoms because they are invisible, or I’m disabled with no treatment available because we don’t know why.

 

After struggling with the worry that maybe I’m a hypochondriac who “wants something to be wrong” as the doctors suggested, I stumbled upon the YouTube channel Momming With Migraine. I saw so many similarities between myself and the content creator who suffered from POTS and Complex Migraines. I felt like I finally had a community I fit in with, who understood what I was going through as I was in pain every second of every day. It wasn’t long after I found this channel that another fan suggested to the creator that she look into CSF leak (cerebrospinal fluid leak).

 

This is where my life changed. Since the symptoms that made the creator of that channel delve into this hard to diagnose condition were the same things I was experiencing, I also jumped down a rabbit hole of research studies, anecdotes, and support groups for it. I didn’t WANT to have a CSF leak as my neurologist at the time suggested; I simply fit every bit of the criteria. When the neurologist belittled me for asking additional questions about scans that she deemed “normal” I decided to fire her from my care team.

 

With the help of a CSF leak support group I found a specialist just a couple of hours away, and requested a second opinion on my “normal” scans. To my surprise, the five month wait for my appointment didn’t end in another doctor telling me it’s all in my head. Instead he told me it’s not in my head; the csf that should be that is (pardon me as I laugh at my own joke). He told me it was great news that he could see dehydration in the brain because that meant it was very likely a leak and he could fix it! All we would need was to find the exact leak site.

 

So within two days I went in for a CT scan to narrow down where I could be losing brain fluid from. Unfortunately we didn’t find the site that way, but we did find a plethora of other problems that my high intracranial pressure had caused. You see, when the pressure got too high around my brain due to a minor skull fracture I got in 2014, my sinuses were shoved around to make room. To spare you the long details, it’s all a mess in there and my pituitary gland was pushed out of its cozy spot within my brain and down into my sinuses with hardly any membrane left to shield it from the (almost) outside world. That at least gave us the opportunity to schedule surgery, even if we weren’t positive we could find my leak site in time to get me in before the end of the year (you know, that dreaded time when American health insurance companies reset your deductible and co insurance).

 

Luckily there was time for me to be scheduled for a pledget study before the surgery as a last ditch effort to find my leak sites so they can be sealed during surgery. I went in on October 4, 2021 for this study where performed a lumbar puncture to inject radioactive dye into my spinal column. From there I had to sit in a way that the dye could enter my brain, which causes a terrible headache like most people have never felt before (I’d had this part done before and it’s indescribable). Once that process was complete I had loads of cotton shoved deep into my sinuses where it stayed for several days, turning me into a dreaded mouth breather (one moment while I laugh at my jokes again, someone has to). I then pushed myself to do every single activity that makes my symptoms worse in an effort to keep my brain fluid leaking at as fast a pace as I could. The whole goal of the test is that the dye tinged csf will soak into the cotton and show the specialist exactly where the tears in the dura are so they can seal them closed.

EDIT PARAGRAPH: After the exhausting process of the pledget study it was determined there was more than a 30% elevation in dye right where my doctor suspected a leak site. Unfortunately the imaging didn't actually identify the leak site for reasons unknown to me. This left us waiting for surgery to do another lumbar puncture with colored dye so my doctor could hopefully see first hand where the dye came back out. It is now 11/29/2021 as I update this, and surgery was on 11/26. I am awaiting my surgical notes as well as follow-up in a few more days, but they were sadly unable to find the leak site during surgery as well. This does not by any means determine there is no leak site; if it did my doctor would not be ordering more tests. I will be getting a spinal MRI to explore more area, and I still must discuss implications of certain developments found during surgery. There were several additional congenital issues found and corrected, one being that my septum was pressing hard on a nerve bundle. Another issue was that my csf pressure during the lumbar puncture was extremely low and made retrieving samples of csf next to impossible (I have many puncture marks on my back from the several attempts). I plan to discuss how the low csf may have impacted the ability of the dye to seep from any leak sites at my follow-up this week. 

 

So now for all of you who skipped my health story (don’t worry, I won’t hold it against you since I’m a long winded person), here is the TLDR. After having my three day admittance for my pledget study my bill came to $2,500. This is only my 30% co insurance, so I can’t imagine the cost that insurance is paying. This isn’t the cumulative cost with the surgery, so I may be back here to update for help to actually fix my problem once they bill me if I haven’t hit my $15,000 individual out of pocket max yet (but I think I’m close after all the tests and visits to find out the problem).

 

I have set up a payment plan for the past due bill from the pledget study, however it is too high for me to make payments on while I am out of work for recovery.

I appreciate everything and anything you can offer, and if you’d rather contact me directly to help out I am open to that as well. This is my first go fund me ever so I’m not sure if I'm allowed to post other payment options, but I can absolutely send them if you contact me. Again, thank you so much for all of your help and well wishes.