My 87 mum has recently had a TAVI implanted, has had a number of TIAs and has been treated for high blood pressure for a few years. TAVI fitted 10th November. Blood pressure after TAVI very high - 225/60 but had been that high on occasion before TAVI. She has a TIA about 3 weeks ago.
Prior to the TAVI (in the previous few weeks), she had some odd mouth movements periodically. During a TIA or similar episode, she would have loss of memory, slur her words and not always be able to find the right words.
A day or so after the recent TIA, while blood pressure was very high (225/60), she was admitted to hospital with uncontrollable limb and mouth movements. She could not keep her arms still; they would suddenly shoot up above her head, and would be moving all the time. Her legs would also be moving, but not as dramatically. She would have times when she was lucid, and other times when she was talking about things which made no sense. Her mouth also was constantly moving, making speech slow and difficult. She said that her mouth was very sore, found swallowing difficult and sometimes, it looked like she had difficulty catching her breath.
The consultant at the hospital suggested post TAVI chorea, but then suggested that her symptoms were probably related to the medicines given during the TAVI. These were lidocaine, chirocaine and fentanyl - she was awake throughout the procedure.
She was taken off 2 blood pressure medications while in hospital. She was started on procyclidine for the "chorea" and diazepam. The procyclidine was not considered to be effective so was replaced with tetrabenazine. A day or so later, the uncontrollable limb movements were virtually gone; the mouth movements were much better but still present when she tried to speak. When she was alseep, there was no movements.
She was discharged from hospital a few days ago. A day or so after being discharged, the limb movements have started again. The mouth is the same. No evidence of any dementia.
Does anyone here have any experience of what her condition is likely to be, and what can be done.
Does anyone have any information about private neurologists (or doctors of other disciplines) that have dealt with anything like this successfully?
It seems the hospital have sent her home without giving an accurate diagnosis and prognosis!
Any help or advice would be most welcome.
Thank you.
