luke

I do think the Dr's could be better with communication. We were not expecting her condition to go this far backwards, also no one has told us if this is normal or not. . Just got to think positive until we get more information I guess. I've gone though this all before, so I will do what worked for her previously using the info i've got from this wonderful forum & her rehab team.

My Mother who has had 2 bleeds & 3 coiling operations since September 2015 underwent a craniotomy last Friday. The surgeons decided that the nature of her aneurysm was too unpredictable to keep coiling the traditional way, so opted to clip it instead. Before we decided to go with the operation we were given the risks. The main one was a 20-25% chance that the procedure could cause a stroke which would effect the mobility of her legs. As a family we decided to go with it anyway as the only other option was a coiling procedure & a stent together. This carried the same risk of stroke, however may not be permanent like the clipping. The neurosurgeon advised us that the recovery from the clipping would be longer, but the thought of a permanent solution outweighed everything. My Mother was still suffering from extreme fatigue, momentary confabulation, memory problems & balance issues caused by the type 5 re-bleed in April 2016. However, during a meeting the week before surgery, I noticed major improvement. She was in an environment with strangers & commanded the conversation, followed all the points in a complicated setting, objectively weighed up the risks & came to a reasoned conclusion to the meeting by telling the surgeons she would like the weekend to decide which procedure to have. I was really happy when she even remembered the conversation & names of the surgeons days after, as well as the procedure & all the risks. She came to the same conclusion by herself which was the same opinion as mine & my Fathers. Now it has been over a week since the operation & I'm fearing we made the wrong decision. She is in my local hospital in the stroke unit extremely confused. She stares into space when we talk to her & everything she says doesn't make sense. She was in a similar condition after coming out of a coma last year. When the surgeon said the recovery would be longer than the coiling I was not expecting this at all. Feels like she has gone backwards 7 months I'm trying to get a meeting with the neurosurgeon to hear his opinion. In the mean time has anyone been through something similar or knew of anyone in a similar situation?

Thanks guys for all the kind words. I think what I now need to do is really plan how the future is going to work for us. My Mum & Dad don't really have the energy to do much anymore, so I'm going to need to step up for my family & take on pretty much everything. I know I can do it. I'm just going to stay positive everything turns out alright, It always does in the end.

Mum underwent a third coiling operation yesterday evening. They found that the aneurysm had grown rapidly after an angiogram on Thursday. The surgeon was not confident she could even go home for a few weeks. I'm happy they have moved quickly this time, but this coiling won't be a permanent solution. She has a rare type they called a giant aneurysm which keeps on growing irrespective of the coiling. It is in a place that makes other operations more difficult. The surgeon is going to go out & reach out to the community of neurosurgeons for advice as its such a rare case, with the idea she comes back in for another operation in a few months time. At the same time my Dad's heart isn't doing too well. He says it feels like heart failure again & when he says that you know it's not good as he never complains. He is undergoing an angiogram on the 23rd which will clarify the problem.

She is pretty much on a see food diet at the moment. If an advert comes on the TV she wants it! So if I mention flapjack I'm sure she will be up for trying it!

Hahaha I wouldn't say good. Time stops when I have to clean!

I do think that her taste has changed a bit. She seems more into certain foods. Also, I have noticed she says foods are often salty when they taste normal to me. Well the chocolate is down to the last bag, so I won't get any more after this. May be treat her once a week or something if she asks.

She drinks quite a lot. I try to keep her topped up with water, or in her preference coffee! Her diet has gone down hill. She doesn't like a lot of the healthy stuff I make & will often snack on chocolate / crisps / sweets a lot of the day. If there aren't any snacks she really only wants bread, sandwiches, fish fingers, chips etc. She has put on a lot of weight since being in hospital & has gone from a size 8 to a size 14 which she isn't happy about. She doesn't have the energy for exercise & junk food seems to be comforting for her. Going to the pharmacy tomorrow so I'll ask for the creams/bath oil. Thanks Karen

The hospital is moving much more quickly this time around. They have booked her in for an angiogram next week. Also, did anyone suffer from dry skin, especially around the scalp after their coiling? My Mum never used to have dry skin & now her scalp is really dry. Her hair has become really thin as well.

Karen, thank you for the kind words. Two bleeds as well!? You've got that warrior spirit my Mum has! I'll see what she is up for doing & make a plan to go out a couple times a week. We are planning to go for our first family meal with the extended family this weekend. So it will be quite a big thing for her I expect. I'm going to make sure she sits in the corner seat with me next to her as she is most comfortable around me. I can keep her laughing & she won't feel too much pressure to interact with the whole table which might make her anxious. Thank you for all the advice & this forum to interact on xxx

She is doing well. She is up & about a bit more, helping with food & doing bits here and there. She did about 3 hours of cleaning the other day. Went through all the draws & cleaned them out. Got the dirt I seem to always miss! So I think her energy is up. She's still sitting around in her dressing gown though, which is hard to get her out of. I need to start walking with her which will give her a reason to get dressed. We don't know the details of the filling yet. When she had the second operation, after her second bleed, the surgeon told us that due to the location they didn't fill it completely as it could block the artery which is responsibly for supplying blood to her legs. So I guess they were expecting a bit of a 'neck'. However, I'm not sure if it is different for my Mum, as when the second bleed occurred, they said that the coils got pushed to one side in the aneurysm which created a nipple on the top. That point failed which lead to the grade 5 bleed. Just hope they don't faff about this time & act quickly regardless.

Not a great day today. We received a letter from the hospital detailing correspondence between the neurology department after her last check up. We have asked for all letters sent to be copied over to us so we can keep track of everything that's going on. The last part of the letter was worrying, "As expected, there is some residual filling and that it is felt the patient should be offered a repeat angiogram with possible further coiling or treatment as indicated." My Dad spoke to the consultant neurosurgeon who said everything looked good, so this was a bit of a surprise. The last time they picked up the residual filing they didn't tell us & the re-bleed happened. We are going to be hounding them every week for answers until something is sorted. We haven't told Mum yet as we don't know the full picture of what's going on. I don't want to stress her unnecessarily. I'm hoping they get something sorted ASAP. Last time they said they thought they had time, so put off any treatment which turned out to be a major mistake. I don't know how common it is to have the aneurysm re-coiled, has anyone else had to have a re-coiling?

Has anyone had to deal with confabulation after their bleed? My Mother confabulates about certain things regularly. She is adamant that she takes Warfarin on a regular basis after a heart problem. She doesn't, & I explain to her that she used to do my Dad's pills for him every week, so she may be getting muddled up with that. This worries me as I don't want her taking medication from my Dad on the sly. I have taken her to the Doctors & even had the Dr write a signed note saying she has never had a heart condition. She will believe it for a small period but within an hour or so believe she needs warfarin. Its almost become a reason why she is feeling tired & ill. She says "well I should be on blood thinners & then I'll feel better". She also thinks there are two of me. She remembers me when I am younger & her mind tells her there are literally two of me. I question her & she says the other Luke with the exact birthday, then describes me when I was a young boy. Every other day I explain to her how that isn't logical & she accepts it, but reverts back in a short time. Did you or anyone you know confabulate like this? Did it ever get better?

The fatigue is the thing that really gets to her. She can't really do anything for long without feeling like she's run a marathon. Going up the stairs a couple times & shes absolutely done for a few hours. I'm trying to work around that by giving her things to do in which she can sit down. Had her folding the washing yesterday & she was able to do that in her own time. I think the sense of achievement helps her a lot. Thank you. My Dad is doing OK. He is really happy that she is doing really well, although he is ill himself so is suffering in that regard. He is in a lot of pain from being in a motorcycle accident 8 years ago - he broke his back & had spinal surgery. Then the following year he had heart failure & a valve replacement. After it all he got severe scarring on the lungs, so along with the pain from his back he can have some pretty rough times which comes in cycles. He's having a bit of a rough time now so finds things pretty difficult. He's been ill pretty much his whole life so has his ways of dealing with it, so I let him have his space & help him out where I can.

Quick update: I've taken the advice from your lovely people & gone with some more visual reminders over the watch. I've put up 3 chalk strips & a notice board. One chalk board is used for anything we run out of that needs picking up from a quick shop. The second is called "Mum's Memory Bank". She writes tasks she has to commit to short term memory. For example, she has had enough energy to start doing a few things like preparing lunch. She will write the sandwich fillings on the board with our names & can do everything without having to ask over & over again. It works a treat for short term stuff. The final chalk board is for longer term things she wants to remember which she glances up at which refreshes her mind. I've then put up a notice board with all the chores that need to be done within the week. I've blitzed the house from top to bottom so its spotless now then set up a time table with each room that needs to be cleaned each day. I've split the tasks up so there is only a few things to do each day so she won't feel overwhelmed. I then help her when she has the most energy to get it done & she's happier now she's feeling like she's contributing. Thanks for the pointers to all that commented, life is finally starting to look up after this terrible year.

People have mentioned that they need to keep hydrated otherwise they feel like their symptoms become worse. I am curious does anyone take dioralyte regularly to help with this?

Before she got back from hospital we got one of those roll on chalk boards for the kitchen. Me & my Dad are using it at the moment with the hope that when she gets a bit more energy & routine she can use it as well.

No she doesn't have one

Yeah that makes sense. It was similar to when we had alarms on her phone in the hospital. The alarm would go off then she would just switch it off intending to get up in a few minutes. Then the time would pass & she would have forgot about it. OK then well I have just ordered The Memory Book by Tony Buzan. I would like to work on my own memory so may be I can find a system or something that might help her in the filing information department. Will set aside a 30 mins in the evening to go over things during the day, record them & set some small goals for the next. Thanks Daffodil

Thanks for all the advice everyone. I'm curious does anyone have any experience with smart watches? Her memory is poor & previously we set her alarms on her phone. Problem is she would never take it with her if she left a room. I have noticed though she will wear her watch everyday. So I'm thinking a smart watch will be a good fit to help her with reminders. Wondering if anyone has used one before or has any recommendations?

She has just been discharged from a rehab neuro hospital after a long stay. She was helped with various things while being there & when they felt she was ready we had her come home. Her memory is severely impaired to the point where she doesn't remember what happened 20 minutes ago, especially for mundane things. However we have seen improvements each & every week in that regard so here's hoping it continues. To be honest we don't need help. I can cook, clean & take on any household task & can do any DIY so that isn't a problem. For me it's just about helping her the best way I can without taking too much of the burden so she becomes too reliant. In hospital she was in a new pair or clothes each day & was doing more than she is at home, so I don't want her to slip back. She has been regularly sick since she had the bleed. We asked the hospital if it was anything sinister & they said that they had looked into it. They concluded as she has damage to the part of the brain than controls balance that the sickness was a form of motion sickness. It almost always happens in the morning when she sits up or if she stands or walks after a period of sitting down. They have just given us sickness tablets to combat it. Thanks. Me & my Dad don't take anything personally. To be fair she doesn't hardly snap or get annoyed this time around. Her first bleed she went through a period of being really quite irritable, especially with my Dad. This time she isn't as easily irritated. We also learnt from the first time & I'm better with talking to her compared to my Dad. So knowing this he will get me to talk to her about something as she seems to take it on board with me without getting annoyed. The hospital was kind enough to get us one of those, however our bath is the wrong shape & the shower won't reach the other side. Thanks for reminding me though as I'll go get a longer shower cord so it can stretch across. Her Sister lives down the road & helps her with various things. She is coming over this week to help dye her hair for her so she has the support if she needs it. This was something she was doing regularly at hospital. Since coming back she hasn't been doing it. To be honest that is on me, I should be encouraging her to continue which I'll do so from now on & set a time each day to sit down with her.

She doesn't need any nurse or anything like that. She can wash & dress herself on her own, its just more like she isn't really motivated to do so. I think its a combination of forgetting to do so, lack of energy & confabulation. She will be in the same pair of pajamas for a while & not be motivated to get out of them. Her mind is also playing tricks on her so I will say, "why don't you have a shower today & get into a fresh pair of clothes", & for example, she will say she had one earlier & these are new from the shops or another combination of events that aren't true. It isn't that she is purposely lying, its just confabulation is one of the symptoms of her particular injury. Me and my Dad support her in different ways. She responds better to me when I try to help by telling her to do things. With my Dad she can get annoyed, as before the illness she was always the one to be more organised & help him with various things. He's disabled himself & she cared for him for a period while he wasn't independent. I think she also has trouble accepting what's happened to her & gets upset when my Dad tries to help her with things that were her strong points previously.

Thanks for the advice. I have been bringing her a small glass of water pretty much on the hour & trying to aim for a couple liters of fluid in a day. She has sickness regularly & will spontaneously throw up especially if she has a full stomach, so spreading the water over a long period seems to work better for her. Just trying to encourage her a bit to look after herself a bit more. She has been in the same pajamas for a while now & hasn't really washed that much which can't be too comfortable.

My Mother had a grade 1 SAH last September but unfortunately her coiling wasn't completely effective & she had another bleed in April. This time she she had a grade 5 along with Hydrocephalus & Vasospam as complications. The prognosis was not good, but being the tough woman she is, she pulled through & has been on the mend in a neuro hospital. She's just come home in the last few weeks. As a family we have been through a lot the last year & the last few months in particular have been bad. When she awoke from her coma she didn't know who anyone was apart from my Father. She has got a lot better since she awoke but has periods of confabulation where her brain feeds her information that isn't true. In general though she has improved to a point I never thought would be possible & I would say she is pretty much herself. She is however extremely tired all the time, much, much more so than last time. I am trying to give her somewhat of a resemblance of a routine, however she isn't very motivated. She barely wants to get out of bed or even wash or change her clothing due to the extreme tiredness combined with a now short memory. I'm being as supportive as I can doing everything for her, but at the same time I am trying to encourage her to do small things in a hope to build her confidence & stamina. Being it is early days, especially considering the severity this time, I don't know how much I really should be pushing her. As people who have been through the wars do you have any words of advice? Thank you.

Hi Karen OK I'm taking her to the Dr's tomorrow. Thanks