Neurotoxicity
My husband had his stem cell transplant for MDS at the end of March. He caught para flu whilst in the hospital which delayed his recovery. He was sent to a cottage hospital for rehab (this was a wrong move) only there for a week and suddenly developed blurred vision and loss of co-ordination. Fearing a stroke he was given. CT and then an MRI scan. These were clear. He is back on his SCT ward and they have been performing various tests ie lumbar puncture/pet scan etc and again they have not thrown up anything. Neurotoxicity and cyclosporine were talked about plus the amount of treatment my husband has had in the last 4 years (previous SCT and Car-t for lymphoma). They pulled the cyclosporine, he has been off it for a week or more and there are no significant changes. He is day 63, and 72 years of age. He is basically bedridden and has to be fed. He can only move one arm. His bloods are doing really well so from this aspect the SCT has gone well. His morale is getting really low as he has to have everything done for him. Neurology were involved and did some tests and I was told it showed slight abnormality and I am trying to get them to give me more info. I just kept getting told they are doing more tests but to find what ? I am hoping you may have had members experiencing this and can give me some information. Many thanks Gill Pinch
Comments
Hi Gill,
I'm Rachel- Lead Nurse here at Anthony Nolan. I'm pleased you've reached out to forum for some support, it sounds like you and your husband are going through a very difficult time at the moment. I'm sorry to hear he's so poorly.
As you've outlined in your description of the situation, the reasons for some complications after transplant can be a slight mystery, there are a number of treatments, medications and infections that may cause neuro problems and it sounds like the team caring for your husband are trying to work through this mystery. Unfortunately this can mean waiting for results from the stopping or starting of different medications, obviously changing too many things at once limits knowing what has made a difference. I'm sorry not to offer any more reassurance than that at the moment, I can't imagine how hard it is to see your husband so unwell and low in mood.
If you'd like to talk to someone on our helpline please do call, we also have the Telephone Emotional Support Service which you and your husband may benefit from, details for this can be found via this link:
https://www.anthonynolan.org/patients-and-families/get-support-us/telephone-emotional-support
I hope you're able to get some answers soon and that your husbands health starts to improve.
Kind regards
Rachel