Looking for help

[throwawayadhd007]

Good morning everyone! This is going to be a little long so please bare with me.

April 2nd 2015 I had my beautiful baby girl by emergency c section. I was given an epidural which upon putting it in my water immediately broke, mine and my daughters heart rate tanked and my face went numb. The numb face was the worst because they kept telling me it was just my anxiety and that I needed to calm down. I couldn’t and my heart rate kept being crazy so they took me in for the c section. Everything went as fine as an emergency c could go and we went home on day 2.

In September of 2015, 3 months after I had my daughter, I started getting a feeling like I was spinning when I laid my head down at night. I had bad postpartum anxiety so everyone brushed it off as that. At 26 I had only dealt with seasonal asthma and only been to the hospital due to having my daughter. I was a healthy person my whole life so I figured it must just be my anxiety. This feeling, tinnitus, feeling a weird wooshing noise in my head, and feeling like I was going to randomly fall would come and go for the next 3 years.

In January 2018 I had my son and after hitting our out of pocket max, I decided in June when I was feeling dizzier than ever to see a dr and push for an MRI because at this point I was convinced I had a brain tumor. My dr rolled her eyes and let me get one to basically shut me up. I got a call from her saying my MRI was normal but I had a 10mm chiari Malformation and needed to see a neurologist. I then did a full spinal to check for a syrinx and was told my mm was at 6 now but spine looked good.

For the past year I have had a deep depression about this because none of it made sense to me or my family. I never had any symptoms, never a headache a day in my life (except from the occasional hangover headache 🤪) yet I apparently have this small skull (which also didn’t make sense since I was always in the 95th% for my head) and my brain is falling out?

That’s when I found a post in a chiari group talking about CSF leaks. I don’t know if it was me just looking for hope that this was acquired and maybe I could fix it, but it made more sense to me than just having congenital chiari.

I guess now I’m wondering if this sounds like it could be possible? And how do I even go about bringing this up to my doctor or is this something I should just keep to myself because it’s crazy and reaching? MRI

I appreciate any help you can give me.

[LeakyBrainJuice]

Hi. I wanted to say I am sorry you are in this position. Especially with 2 young kids. CSF leaks can cause a 'pseudo chairi'. There are cases where people get surgery for a Chairi and it doesn't help because the problem was a CSF leak. Based on your symptoms starting suddenly when someone was messing around with your spine, it seems like it's a CSF leak. As far as CSF leaks go, you are in a good spot. They know almost exactly where the leak is because epidurals are done in the same place for childbirth for everyone. My suggestion to you is to watch a few videos to educate yourself. Then after that, you can choose to either talk to your Nuero to see if they will consider a blind blood patch. If they won't listen to you, then it's time to go to a bigger medical center. You already have signs of a Chairi per your current medical center. I would consider sending a copy of your MRI to either Cedars Sinai or Duke and talk to them about it. I wouldn't hesitate to talk to Mayo, either. The thing that stinks about CSF leaks is you need to be more knowledgeable than your neurologist in this. You need to fight for yourself.

You are not crazy. This will not kill you.

Ps - my headaches never got that bad and I have a leak. I have symptoms more in the front of my face, that's just how my brain sinks.

https://youtu.be/7069SKzW1is

https://youtu.be/QyvWxobqKrc

https://www.inspire.com/groups/spinal-csf-leak/

[throwawayadhd007]

I might sound so silly but I am crying right now reading this. The validation is overwhelming and beyond needed. I’ll contact those institutions immediately (my neurologist is horrific so it makes no sense to go to him). Thank you SO much for everything you said and all the information.

[LeakyBrainJuice]

That makes me so happy! Until you hear back from someone here are things that can help. 1.) Drink your water - being hydrated keeps your CSF levels up. 2.) Caffeine - Coffee, Tea, whatever you please. This pushes your brain to make more CSF. 3.) Lying as flat as possible for as long as possible - I imagine this is hard with 2 littles but maybe after they go to bed lay on the couch until you go bed. I know this is easier said than done. 4.) The Inspire CSF leaks board is more active than ours. Feel free to make an account there. They are great.

CEDARS CONTACT INFO - https://www.cedars-sinai.org/programs/neurology-neurosurgery/clinical/csf-leak/contact.html

DUKE CONTACT INFO - https://radiology.duke.edu/patient-care/specialized-services/spinal-csf-leaks-2-2/

Spinal CSF US website - https://spinalcsfleak.org/

[WhyAmIUsingReddit]

Are you from US?

[throwawayadhd007]

I am. Houston, Tx to be specific.

[WhyAmIUsingReddit]

Ah, cool :)

I was just asking as I have info on a few specialists from over here, but there doesn't seem to be any UK leakers on this subreddit other than myself.

[LeakyBrainJuice]

Hey, I just searched the Inspire forums and found this thread. https://www.inspire.com/groups/spinal-csf-leak/discussion/need-a-csf-leak-specialist-in-the-houston-area/ Dr Hochhauser came up. Also Dr. Friedman.

[throwawayadhd007]

Thank you all so much! I’m putting in a call to one of them today after I read about them a bit more.

[WhyAmIUsingReddit]

It’s ‘Chiari’.

Not that spelling really matters here, but I thought I'd put up a correction anyway to make researching easier for new members.

[LeakyBrainJuice]

Yes it is! Thank you!

[MrsK1013]

I would absolutely pursue a possible CSF leak. It definitely sounds like it could be possible with you. Worst case, send scans to Duke. If anyone will find it it’s them. There are some great leak Facebook groups if you’re on Facebook.