So after the discussion at National meeting the neurology team sat down together to tell us the results today. They unanimously agree that she has Rasmussen’s Encephalitis https://www.ninds.nih.gov/Disorders/All-Disorders/Rasmussens-Encephalitis-Information-Page
And advised a left hemispherotomy.
Whoa. Punch to the gut. Fight back the tears. Come on Karen, get a grip. Listen now. Take it all in. You need to hear this. You need this information....
Therein followed quite a long appointment where they went through everything.
So the headlines:
-RE is a progressive, degenerative disease and has no cure. They showed us her mris from 2009, 2014 and 2018 and you can see the progression. It is slow but clear and mirrors the very slow but steady progression of seizures.
- It has 3 aspects: uncontrolled Epilepsy, hemiplegia and cognitive loss. Which fits Immis history exactly.
- The biopsy confirmed their thoughts.
- Her SEEG showed some activity on the right as well as left so the odds of complete seizure control are slightly lower than most but as the disease is progressive there are better chances now than later.
The op:
Completely detaching the left hemisphere.
Impact:
Loss of movement on right. To Immi this won’t make any difference to her arm as she has bone, but she will be in a wheel chair initially. The surgeon believes she will walk again though.
Eyes; she will lose right peripheral vision for good.
Speech: from past MEG scan results they believe her speech centre to be bilateral (both sides) so she should retain speech.
She would be in hospital for a month and then rehab centre if needed. And LOTS of physio.
Hopefully after a year she would be able to wean off meds which may help her cognitively and behaviourally as it has never been clear what of her behaviour is her and what is meds. It could improve her cognition, though this would be a side advantage rather than the aim.
The team were unanimous about the way forward with the UK expert in RE apparently telling the team to ‘stop faffing’. They were clear and compassionate and it was pretty definitive. Immi asked some questions about memories - she doesn’t want to lose some memories and she is presently holding things up trying to work out what it would be like to lose peripheral vision.
Obviously this is a massive decision to make, and one quite frankly I didn’t think we were going to face as I thought deep down they were going to say it was too generalised and maybe offer VNS. The fact the progression is so slow makes it hard as we have to weigh up quality of life along side progression and future implications. We need real wisdom.
So I guess that is what I would ask for from any of you reading this. If you have a faith, please pray for wisdom for us and Immi in this. We need to make the right decision for her which will have life long implications either way.
Thank you for journeying with us in this.
K x
