🦋 Update by Joany

The first surgery consisted of a tethered cord release and fusion with traction from my skull until T2. It took 14 hours with a bloodtransfusion. The results of the surgery until now:

It saved my life
No more seizures
I can breathe again (no more choking)
I can see again (no more blurred vision and blindness)
I can talk again (no more dysarthria)
I can hear normally again
No more pressure behind my eyes
No more pressure on my ears
No more pressure in my head
No tremors in the left side of my body
Pee like a normal person
Less pain

The second surgery will be tomorrow and will consist of a fusion with traction of T2-T10. Waking up will have to show wether I’m fine then or if there’s also instability below my thoracic spine. In my case the only way to know is taking it one step at a time.

Last week I’ve been regaining some strength, however on Tuesday I fainted into my mothers arms with luckily the best nursing staff around. I thought I’d give her another dramatic moment to remember😆

Then on the ambulance drive to another hospital for tests the severity of the instability became very clear once again when it was basically impossible to stabilize me during the drive. I’m very very happy we did the tests, we’re simultaneously working on science and that makes me incredibly grateful.

There are some other problems and diagnoses that have come to light until now but we take everything one step at a time.

I can already move my neck again even though it is fully screwed and fused which shows the extent of the EDS and hypermobility.

In my left arm I have a torn muscle with bleeding inside the muscle from the bloodpressure machine. Just some time and it will be fine😊

I feel ready for the next surgery and am looking forward to being one step further again.