Gemma B-B Posted November 11, 2015 Share Posted November 11, 2015 I was wondering if anyone had any advice or personal experience to offer in this area…. As a quick recap – I had an NASAH at the end of January this year either during or immediately after heart surgery. I have no memory from this time as I went into a coma and was put in life support. I was transferred to another hospital to have an EVD fitted and then later on a VP shunt when my hydrocephalus did not right itself. I have no memory from this time and didn’t start to retain any memories until the very end of my hospital stay. I came out of hospital at the end of February into full-time care and began my road to recovery. From subsequent appointments and discussions with my specialist I have found out that my SAH was a grade 4/5 due to the amount of bleeding and my presentation at the hospital. As a result of this I have been left with a few on-going issues – this includes cognitive issues (reduced speed of thought processing, executive dysfunction and attentional memory issues), fatigue and also some mobility issues (mainly balance, precise movement with my lower limbs and processing where objects are in relation to myself – I walk into things most days and walking in crowds is a disaster!). From what I understand these are all fairly standard post-SAH and are not unexpected given the severity of the bleed I had. I am fortunate enough to live near to a specialist brain injury rehabilitation service. I was referred to this when I was discharged from hospital and assessed by them in May. I began my programme of rehab with them in June and am still going to it now. I see an occupational therapist and have also had sessions with a physiotherapist. My physiotherapist has assessed my movement and determined that I have issues with movement in my legs (upper body movement is fine). This makes walking long distances difficult and precise movements hard. Generally speaking I have made quite a good recovery. With my rehab support I have started going back into work, not actually teaching but doing admin and other tasks in order to build up my stamina. The plan is to start a phased return in January where I will begin teaching again and building up my hours and duties. At the moment I am going into work two half-days a week and then doing rehab on one day. I usually try to do something else on one of my ‘days off’ as per my OT advice – such as getting a bus to see a friend. I am also doing more around the house in terms of cleaning/cooking etc. The thing is that my physical movement and balance actually seems to be getting worse. I am limping most days now and my balance is often off. Friends/relatives have also noticed this as well. I am not quite sure what the reason is for this. It could be a physical manifestation of fatigue as I have noticed that it is worse the more fatigued I am (when I am very fatigued I even putting on my shoes is a struggle). My OT has also suggested that as I make gains cognitively I may get worse physically as my brain simply doesn’t do everything it used to. It is also possible that it is connected to my hydrocephalus – potentially my shunt could need adjusting, though I would imagine the symptoms would be more severe if that was the case. I have spoken to my specialist and have an appointment to see them in the coming weeks so am covered from the medical point of view. I am not looking for any medical advice but more wondering if anyone else had experienced anything similar in their recovery. I know every recovery is different but had anyone had their balance/movement etc. get worse or noticed it varying in connection to their fatigue? Any advice or shared experiences would be appreciated! Quote Link to comment Share on other sites More sharing options...
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