u/Intelligent-War-564

We all have to advocate our butts off for ourselves to get care with this condition. So I wanted to share how I navigated my way to surgery with Schievink.

****Disclaimer*****
I work for a large corporation with expensive but good health insurance. I also am afforded up to four months paid leave for medical care. I had a successful gofundme to pay my way to LA. In the US not everyone has these resources so I want to make it clear that the only way I was able to navigate this way is because of those factors. ****

I had sudden onset migraine that was 10/10 intense 3 years ago. I lived with it getting progressively worse. This headache would become paralyzing by end of day. The pain was so bad I can’t even begin to explain.

Went to gp. Go said lose weight. It’s your blood pressure. Lost 70lbs, it helped my blood pressure, but it did not help my migraine. It was worsening. We tried gabapentin. Imitrex etc. lab work you name it. Then I started getting these scary thunderclap migraines. They sent me to the ER for fear of aneurism.

There they gave me an MRI. There I showed mild signs of brain sag. It was visible. This was before I started to really deteriorate. They wanted to do a spinal puncture then and there. I refused, wanting to see a neuro first. Thank god too because he was like “uhm. Yeah let’s just poke holes in someone’s spine that may already have low pressure”

Anywho- my neuro is amazing. I feel so lucky I found him. He said look. It could be Hypotensive headache BUT that’s a pain to fix and to work through the channel of approvals (and he was very transparent about that. Laid out what we had to try first in order to climb through approvals). We decided to throw everything we can at it and if nothing works insurance will have no choice but to approve surgery or patch.

I had already tried all the typical first lines and they all failed. So we started Botox. Botox to this day is the only thing that has taken my migraine from an 11/10 to a 6/10 with much less episodes. Then we tried Nurtec: fail. Ubrelvy: fail. Vyepti: fail. Ajovy: fail. Fail fail fail.

In October November of 25 I started to rapidly decline. Fast. Suddenly I was forgetting friends names. Needing to YouTube how to tie my shoes. Getting lost and coming to in a hotel next door from mine. My eyesight was going. My ears OMG. It felt like someone was trying to pull them out of the back of my head. I had episodes so bad all I could do was vomit and lay and cry. I ended up in the er in my hometown. I was having intense visual agnosia.

My neuro and I decided it was time to rescan. The moment of truth. And the slight signs I had of brain sag were much much more prominent. It was go time. They wanted me to do a blood patch and I waited until I heard from dr. Schivink after sending my packet in.

Dr Schievink called me less than a week after receiving my packet and said he saw what was likely the location ballpark of a leak. As my leak was a literal waterfall it was hard to tell. Being he suspected it was in my high thoracic he said not to do the blood patch because it won’t be a durable repair. Let’s just do surgery.

A month and a half later I was in LA. I started with a quad series MRI and non invasive myelogram. Then for the next three days I had to do the invasive myelograms until they found the leak. It took three separate days under total anesthesia to find “Leak-Keisha”. An hour after we found it, I was wheeled into surgery.

Turns out my leak was weird even by dr. Schievinks standard. It was flowing out of a wrapped nodule of nerves and nerve endings. So uhm yeah. That explains the insane pain.

I’m five weeks out of surgery now. I really thought a month out I would be mostly recovered.
HAH!!!!
Nothing has humbled me quite as completely as this recovery 😅

I do have scans of my head, and the exact leak location shot if that helps.

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Hey there!

I recently had specialized spine surgery in Los Angeles. I’m at a point in my recovery where I can start moving my body some.

However my surgeon made it clear I needed to find someone versed in hypermobile Ehlers Danlos as things are complicated enough with surgical recovery, then add in hEDS? Woof.

So anywho if anyone has any hEDS support physicians etc in the MKE area let me know!

I had my spinal surgery 5 weeks ago.

When tf do I start feeling better 😭

I just feel sick alllllll the time. The nausea is unbearable. I started diamox but the full dose was way too much so I’m doing a half. I can’t really tell a difference.

I’m feeling so discouraged. I just want to be pain free. I want to be normal and play with my child and I can barely get up or eat without vomiting.

Did you know that almost ALL spontaneous (meaning there was no direct trauma or puncture that caused the leak- it just happened) are caused by connective tissue disorders?

Have you ever heard of cerebral spinal fluid leaks?

If you have Ehlers Danlos and have constant, crippling migraine, you should know about CSF leaks and intracranial hypotension.

I recently went on a three year migraine journey where for most of it, they didn’t take me seriously. I also didn’t know I had hEds. My sister was diagnosed, but I was not. Like many of you I was given the run around by doctors. After a year of brain splitting pain I went to a neuro. That neuro gave me scans and suspected a leak but wasn’t convinced.

We tried EVERYTHING. The only thing that helped was Botox. Every other pill, injectable etc failed.

My MRIs showed significant brain sag which was causing a whole ton of symptoms, but pain and “saggy brain dementia” was unbearable.

I sent my packet to a specialist in LA. He spotted a likely leak in my thoracic everyone missed. He accepted me as a patient immediately. We discovered I had a waterfall of excess fluid streaming from my suboccipital to my lumbar spine.

After four spinal tap myelograms we found my leak. It was entwined into a large bundle of nerves. Hence the extreme pain.

I’m five weeks out of surgery and recovery has been… more humbling than I could have imagined. Especially as I only really learned five weeks ago I had hEds and apparently that affects healing.

I say all of this because most people, even in our hEds community don’t know about it. The most recent study suggests that spontaneous csf leaks are very undiagnosed due to their difficult nature to find.

It is also suggested that those of us with Ehlers Danlos strengthen our supporting muscles to support the spine so this doesn’t happen again!

I 33F had surgery to patch a hole in my spinal cord. Recovery thus far has been more humbling than expected. I am very new to this Ehlers Danlos life. I don’t know what spoons mean and I have no idea what an average threshold is for activity.
I have been cleared for PT and have no idea what to look for in a physical therapist. My surgeon gives them a brief but other than that? No idea.

My sister was formally diagnosed with it for a case study years back as she presents VERY classically. Mucho bendy etc.

Not Until I started struggling with a nonstop headache did I start to consider an Ehlers Danlos driven CSF leak. I went to a rheumatologist. He did preliminary tests: how bendy am I, skin etc and said with my sister’s diagnosis, and my symptoms with a suspected leak, it’s all but sure I have eds but getting an official diagnosis will cost thousands.

I just had a Cerebral spinal fluid leak repaired surgically four weeks ago. The surgeon who performed the surgery is known for being the top guy in the world on the subject matter. However, the first day when they tried to puncture my spine, the connective tissue was so poor there was no tension to push the needle through. This is exclusively seen in eds patients so I’m just going to say that is good enough of a diagnosis for me 😅

If anyone else has gone through this, please let me know. I’m having a hard time understanding my how long recovery will be.