Hi, I’m Linn, a 36 year old Norwegian.

Why I needed surgery

In early 2026, I underwent neck surgery for my craniocervical instability (CCI) in Barcelona after years of severe illness and worsening neurological and physical symptoms.

The surgery (C0-C2 fusion) stabilized my upper cervical spine after a neck injury in 2011 and years of living with hypermobile Ehlers-Danlos Syndrome (hEDS) and severe myalgic encephalomyelitis (ME/CFS), leaving me bedbound since 2023.

Craniocervical instability is a condition where the upper neck lacks normal stability, which can affect neurological function and cause severe disability.

Norwegian public healthcare didn’t offer me treatment or help for this condition, despite MRI findings and progressive disability.

A Norwegian radiologist commented on my injury visible on MRI in 2024:

"There is definite mechanical injury to C0-C1 but it doesn’t mean anything."

After years of deterioration, I reached a point where I could barely hold my head up without a neck brace and was bedbound most of the time.

Unfortunately, Norwegian public healthcare doesn’t have the expertise needed to diagnose and treat hEDS-related craniocervical instability, and I’m far from the first Norwegian to travel to Spain for this surgery.

Before surgery, I had also started developing secondary problems in the rest of my spine and body. My neurosurgeon explained that years of instability and near-complete inactivity had likely contributed to further physical deterioration.

Link to full medical document about my surgery:

https://www.dropbox.com/scl/fi/meksvmx57qkwbgzmq04tt/Medical-report-Teknon-Oliver-2026-redacted.pdf?

I never expected surgery to cure me, only to give me a realistic chance at slowly rebuilding some level of stability and quality of life long-term.

I lost both of my parents as a child and have no immediate family besides my younger sister, who is also chronically ill with hEDS. Surviving severe illness without a family support network has been incredibly difficult, almost impossible.

I originally wanted to make a fundraiser before surgery, but was too ill and unsupported to manage it. All of my energy went toward surviving and getting through the surgery process itself.

How I funded it

I ended up having to fund the surgery fully myself.

The total cost of surgery, travel, medical follow-up and recovery ended up at around 650,000 NOK.

Traveling alone to Barcelona and undergoing major surgery in the condition I was in was an enormous risk. I even had to pay for assistants to help me through parts of the journey and recovery process.

Where I am today

The surgery was successful, and I’m deeply grateful I was able to go through with it.

Some things have improved, especially:

• Balance

• Cognitive function

• Neurological stability

Recovery is still ongoing, and many symptoms remain.

I still struggle heavily with:

• Physical fatigue

• Postural orthostatic tachycardia syndrome (POTS)

• Low blood pressure

I spend almost all of my time at home, and even small practical tasks can completely drain me physically.

However, my long-term prospects are better than they were before surgery, and most importantly, better because of the stabilization.

Why I'm asking for help

What I need the most right now is stability.

I need help recovering financially after paying for surgery abroad while trying to rebuild some level of daily functioning and quality of life.

The surgery may be over, but I'm still paying for it. Although I managed to put the money together, part of the cost was financed through debt that I’m still repaying today.

If you would like to support me financially, every donation helps more than I can express.

I also want to say thank you to everyone who supported my previous fundraisers and helped me get this far.

I would not have been able to undergo this surgery without that support.

Thank you for reading, sharing, caring, and helping me through this period of my life.

With gratitude,

Linn

Linktree: https://linktr.ee/hazylinn

Norwegian version "Spleis" coming soon.

Earlier fundraisers: https://www.gofundme.com/f/help-linn-to-pay-her-medical-bills

I cannot change my location country on my GoFundMe user, that's why it's set to Berlin, Germany, where I used to live several years ago. I live in Norway.

(This editor doesn't allow me to remove this last photo, that's why it's shown twice)