mrshankly

Hi all Quick update on Erin's home visit. After we had our hopes built up last week following the OT's visit to measure up - her physion has put the block on any visits home for now. The reason being that the step upto the house is too high (about 6 inches!). Erin is adamant she doesnt want to come back home in a wheelchair, even for a few hours - which I completley understand (especially saying we have a ****** awful nosey neighbour who we dont talk too - I can tell she is wondering were Erin is). Another issue is that the physio doesnt want the kids to be around on her first visit. Im gonna argue this point with the physio - as thats the days the kids are always asking when its going to happen. The kids are part of this house, and I want them there. Chances are, they will go about their usual business after 10 minutes anyhow! We have a review meeting on Thursday with her physio/OT/doctor - I hope its a useful session, and not just another tick in the box like the previous 2 meetings we have had at the rehab centre (Social Workers & Counsellors). Thanks for all the kind words folks. I pass them all on to Erin, and it keeps her going. I have taken the spare laptop into rehab for her - so she will be online soon. Alan

Hi all, its been 2 weeks since i posted regarding Erin (http://www.behindthegray.net/vbulletin/showthread.php?6204-Hello-all-Alan) so I thought its time I posted an update (Thanks for the prompt Sally). Well, we spent a night with the kids in the rehab unit family bungalow (bit like travelodge), which was excellent and Erin really enjoyed it - really hard work and it tired Erin out though. Funnily enough, she hadnt had any pain relief for a couple of weeks but after 4 hours of noisy kids she needed some!! Saying goodbye to us all and pushing Erin back to the word was upsetting for her, back to reality for her I guess. Movement wise, Erin can now take a good few steps with her physio - however, she does find it hard to control her left leg as it tends to swing about when she walks, and he knee buckles in. The physio is concerned about Erins toes, and has now given her a bigger leg brace to wear for a few hours a day. Hand wise, the news is still not that great - she can easily(ish) grip, but ungripping is still very slow. Erin still needs help getting ready etc, and I think its going to be a slow process to get that hand working. Erin doesnt feel she has come on that well in the past few weeks, and is often inpatient with the speed of her recovery - however, when I remind her that she had a 15 hour operation and lost 15 pints of blood and had no movement at all in her left hand side 10 weeks ago, i think she has done ****** marvellous. She then agrees with me - however, I know in a few days again I will have to tell her that again when she next mentions it. I have the OT coming out to our house on Thursday in order to measure up etc, as they think they may let Erin come home for a few hours in a month or so. The kids are looking forward to seeing HV on her timetable so much - if they are back at school on that day, I will be keeping them off. Thanks for you support and thoughts. I tell Erin about this site and how kind/concerned the folk are on it, and I know it means alot to her. Speak Soon. Alan

Hi all! Joined this group in order to take advice to my wife Erin, who is recovering in Walkergate Park rehab unit. After looking around, its gonna be useful to myself too! Erins story is as such.......Last December she was diagnosed with having a 5cm AVM on the bottom right of her brain and our life changed that day. She had her first embolisation procedure in March in order to stop the blood flow thru the veins. She had a total of 4 embolisations is 3 months and then a craniatomy on the 9th June. Due to Professor Mendelow at Newcastle General finding another smaller AVM they expected the operation to last 9 hours. I walked into the anethnitists room with Ez, where they sedated her and put her under. I walked round the hospital for 10 minutes after that not knowing what to do - so I went back to the waiting room at 9.30 in the morning. At 7pm, a sister from HDU came to give me an update - Erin was going straight to ICU in order to recover from the op. I trotted upto ICU expecting to see her, only to be met with the sister from the unit saying to me 'Erin has had a bleed during the op, and isnt expected to be out of theatre for another 5 hours'. I wasnt thinking straight, I just thought oh well - will have to wait longer. Little did I realise....... Ez finally got into ICU at 1139 that night, before I could see her the Professor came into see me, he told me there was a bleed (I was still niave, still not fully understanding the implications of this) which was stemmed, and that she lost 15 pints of blood. I got into see her, and she looked fairly peaceful - all piped and bandaged up. I was told there was no need for a bedside vigil, and that I should go home and sleep as she wouldnt be woken up for another 12 hours. Went back the next day and I was taken aback, Erins head was swollen/lips swollen/ getting water thru a syringe - then I was told about her left hand side. There was no movement there at all, not a thing. Fast forward a touch now - Erin was in HDU a week and then moved onto a ward for a further 3 weeks. Very slight movement had comeback in her arm (not hand), and in her leg. The prof was happy that the AVM had been succesfully removed, and no further surgery is required so Erin moved out of the Hospital onto Walkergate Park rehab unit. She has been there a month now, and progress is slow. She is getting one hour physio per day (holiday leave dependant of staff - sore point! They dont have cover in place if anyone is off!!!!). Erin can now stand for a very short period of time unaided, however is reliant on a wheelchair to get around and cant yet walk. There is still no usage of her left arm, although she can bend it at the elbow and move her wrist/fingers slightly. On top of the movement issues, there is a problem with her left eye and a shadow (prof stated she has lost 20% vision), and now she has told me listening to music now sounds muffled! I visit Erin every day (visiting times are restricted though) and I take the kids in every other day. We are lucky on that we are only 5 miles away from the hospital, and my work is only 2 minutes away. Im kept busy at home with Emilia (5) and Joseph (just turned eight), who seem to be coping OK considering how close they are to Erin. We always talk about her and her recovery. They are looking forward to this weekend, when will be spending a night and day in the rehabs centre bungalow! Ive recently gone back to work after 5 weeks off, so its ****** hard juggling full time work/school holidays/hospital visits/kids activities. At the minute, I dont get any spare time til about 930 at night! Luckily I have good familiy around me, who are a massive help. Usual money worries are now creeping in. Erin hasnt worked since December and is now on half pay - going down to no pay in Nov. Erin works for DWP and myself HMRC (and my sister Job Centre Plus), so we are pretty clued up on what we can claim (at least thats something). Erin has good days and bad days, bad days are usually pretty bad and she is really down. However, I try and be as positive as I can. Its all i can do i guess. I feel terrible guilt doing things without her being around, but I know we have to for the kids normality. It was Joes 8th birthday 2 weeks ago, which she found hard. Its her 34th birthday next week and our 10th anniversary in Sept! Apologies if that was long, incoherent and waffly. Just good to get it all down!! Alan

Hi Lynne Thanks for your updates, and thanks also for pointing me in the direction of this site. I already have my doubts that Erins movement in her left hand side will be as fluid as it was prior to her SAH - and I have already noticed that she seems a touch more forgetful, certainly remebering things people have told her. She is also experiencing a muffled sound in her ear since the SAH - which is different to the wooshing noise she used to have which was a side effect of the AVM. She is going to mention the noise to the Dr in the rehab unit. I will pass on your regards. Many Thanks Alan

Hi all 7 weeks ago my wife had an elective removal of her AVM at Newcastle General. The procedure was due to last a total of 9 hours, but it lasted a 15 all together due to the fact she had a SAH during the operation. The SAH was in the right side of her brain. After the op she was moved onto ICU, where she stayed under anaesthetic for a further 24 hours. When she woke up it was discovered that there was no left sided movement. Fast forwarding 7 weeks she has been discharged from the hospital and is now in Walkergate Park Neuro Rehab in Newcastle, we have been told she will be in there for at least six months. She is unable to walk, or use her left hand / arm. The physios are confident that she will leave the hospital walking, and to have some use of her hand – but to what extent they will not commit too. She has taken this last 7 weeks remarkably positive, but on certain days she does have her frustrations and doubts whether she will ever be ‘normal’ again. It would be great if anyone could share any inspirational stories with me that I could relay to her, in order to let her know that others have had a similar weakness and have made a good recovery. Anything would help!!!! Thanks Alan