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.