Hi
Does anyone have any information/specialist referrals (Ireland or UK possibly mainland Europe) etc on Lance-Adams Syndrome (intractable posthypoxic myoclonus)? As one web resource describes it:

I cannot get a diagnosis (ANY diagnosis. He does not know what is wrong - at $400 an hour, I should add!) from my neurologist. Thus all my information comes from the web (Formal reports and anecdotal descriptions).

My story is:
• Pre 25th November 2016 - physically active and generally healthy. Diabetic (under control), bipolar (also under control) plus minor bits and pieces (they too under control). All was as 'normal' as it cold be. Mid 2015 diagnosed with small kidney tumour. Decision, mid 2016, for surgery (keyhole) to remove 2.2 cm tumour from right kidney.
• November 2016 - Surgery for removal of tumour on kidney (successful)
• possible detected hypoglycaemic episode (during surgery or in recovery room). (I am Type 1 diabetic, 20+ years) Suspected subsequent oxygen starvation of the brain. (Hospital's subsequent lack of concern and treatment of my diabetes lends to this assumption. They were BAD!
• Cardiac arrest (possibly unnoticed)
• Period with heart stopped (and brain starved of oxygen)
• Resuscitation (in recovery room) (timing?)
• Further hypoglycaemic episode (in ICU and after)
• Second cardiac arrest in ICU (reaction time?) Period with heart stopped (and brain starved of oxygen)?
• Resuscitation (ICU) (timing?)
• In ICU/Coma deep sedation for 11 days
• Further 17 days in ward
• Most symptoms of Lance-Adams syndrome present. (Unable to walk, unable to use hands. had to rely on nursing staff for most functions. etc etc)

Initial diagnosis Seratonin Syndrome (since discounted) on the basis of a chemical collision between lithium carbonate (I am bi-polar, diagnosed in 1989) and anaesthetics. (SS goes away by itself within 72 hours, in any case. So I am told.)
• Certain medications withdrawn
• Treated with epilem and other drugs.

Current meds:
• Levathyroxine sodium valproate
• Furosemide/amiloride hydrochloride
• Epilim Chrono
• Rivotril
• Amlodipine (Amlotan)
• Insulin (Toujeo and Novorapid)
• Metformin

Post-hypoxic myoclonus (PHM) (Myoclonus occurring after hypoxic brain damage resulting from a cardiac arrest (me? Yes, twice), with abrupt and irregular contractions of muscles as if they were jumping lightly (me? Yes).

This disease, according to its onset time, may be divided into two types, acute and chronic. Acute PHM is also called post-hypoxic myoclonic status epilepticus and refers to myoclonus in a patient with a coma that occurs within 48 hours after a cardiac arrest (Me?: time-frame possibly (I was in a coma). Symptoms yes).

Chronic PHM, also known as Lance-Adams Syndrome, refers to myoclonus that starts days to weeks after cardiopulmonary resuscitation in patients who regained consciousness. (Me?: possibly, as in Acute PHM) Apparently, LAS patients show varying problems in cognitive function from normal to severe dysfunction.

Reference on web:
In the Student Doctor Network a comment refers (under forum/'confusing patient case') as follows:

Any help/support would be appreciated.

I went from physically mobile and active, active author to wheelchair/walker bound in twenty four hours. No writing since November surgery - except emails and letters to my medical negligence lawyers!

My quality of life (and that of my wife) is rock bottom, as you may imagine. I cannot walk properly (wheelchair, stroller) I fall over usually without warning and in any case about 50-60 times in last 5 or 6 months. 5 months Physio has increased strength in legs but not balance.

I am 64 and my wife is 62. We struggle. Daily and sometimes, hourly. Sometimes a lot.

Thank you

Robert WT
Ashbourne, North of Dublin, Ireland

Hello robert wt: I just noticed your post & the fact that you had received no replies. I do apologize for that. Unfortunately I don't have anything to offer with regard to your concerns. It's been close to a month now since you posted this. Hopefully, since then, you've been able to make some progress. I wish you well...

Hi Robert,
I hope this finds you well. Just wondering how you got on with your Lance Adams query? My partner has been diagnosed with the syndrome after a cardiac arrest, which really impacts his physical and subsequent mental recovery. Would love to hear any tactics or methods you've used to help yourself?
There is so little information out there about it!!
Cheers,
Kirsty

Hi Robert and Kirsty, I was diagnosed with LAS in Oct 2014 after a cardiac arrest causing a hypoxic arrest. Was put into induced coma for 12 days. Tried to bring me round but kept seizing violently so sedated again. Was in hospital a total of 12 weeks. Luckily the neurologist at the time spotted the signs and symptoms and diagnosed LAS. Physio and the right combination of meds in each case is vital. Unfortunately not a lot is known about our rare species and I have found we have to find our own path and fight for what we believe is best and works for us. **

I have LAS and learned about FYCOMPA thru this journal article - contact Berhard J. Steinhoff

The Germans have some of the most experience with FYCOMPA (Peramapanel).
I've been using 2mg/day and it has made a HUGE difference in my life.

Good Luck!
James Casselman



**

Welcome james 826.

Welcome SarahPrior.