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Im new and scared my mum has suffered SAH


Guest Clare

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Guest Firefly
:D That is so wonderful!! I hope she continues to get better every day!! It is just going to take time. Love is always the best medicine!! :) Tricia
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Guest Hannah

Thats great Clare! As the days go on and she gets to do more normal stuff like spending time with her family she will get more structure in her days and it will make her (hopefully short) stay in hospital more bearable.

I haven't been on here for a few days have had a lurgy bug so I'm just catching up with the posts.

So many of the things you are mentioning seem familiar, the glibness, being manic, taking it out on those closest to you. It's fantsatic that your mum is out of danger but it's probably a bit unsettling to have your mum 'slightly' different. I know what you mean about like your mum but with half a bottle of wine in her!

I know that after an 'odd' day with my mum in hospital, ferrying visitors around and seeing some slightly unusual behaviour - to have a proper chat 1:1 is amazing, it makes you feel so much better and you start to get the feeling that, it may take a while, but things will be alright.

This will improve though, she will improve and you will adapt - that seems to be how it goes.

Take care

Hannah

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Guest Clare

We gave her her mobile yesterday, and she can still do texts, so that's something.

I haven't seen her myself today, but she text me saying that she's coming home today or tomorrow. We all panicked and when my dad got there later he found out that she has to have an MRI first and I think they want to make sure she is ok. She's jumping to conclusions. She can't really walk and her balance is off, so I can't see her coming home now. She's also deaf in one ear, she says it feels like it needs to pop. Every ailment is on the left side. :?

She was on the phone to me tonight and the nurse was trying to take her temp. and she was quite rude. It's like she doesn't have a concept of decorum.

We have been trying to speak to the Dr.s but noone will talk to us, my dad waited 2 hours for one today and nothing. :roll:

I love her no matter what happens, but if my crazy mum is here to stay it will take a while to get used to it. :)

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Clare it's too short a time for anyone to say that "crazy mum" is here to stay. Drs really don't know how the recovery will go thats probably why they are ignoring/avoiding you. As long as your Mum can demonstrate even basic self care she'll be turfed out, our modern NHS for you! Take heart from the fact that I've never heard of anyone (touch wood) who's had major problems with the SAH in the weeks following initial discharge any problems will be picked up at the follow up appointment. Make sure you find out if the hospital has a specialist SAH nurse who can advise on the end of a phone, we had one and Lesley was a God send calming my wife and I in the first few weeks.

Good luck, and I hope you Mum gets to grips with what has happened to her ASAP.

Scott

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Guest Firefly

It sounds like she is getting there! :wink: If she can use a cell phone that is great!! She is already showing potential to regain a lot or all of her functions over the years! :D The brain takes a long time to heal and needs stimulation. She will get there in her own way at her own pace. It sounds like she has a good support group around her! Love and patience is what she needs. Lots of rest, stay hydrated and eat healthy!! :D It may take months for her to start getting back to normal. It is also normal for her to be aggrivated, moody, have outburst, say mean things... It is normal with a brain injury, she can't control it, but it does get better!! I was very bad in the begining, or so I am told?? :oops:

I had to use a cane and a walker for a few of my surgeries, do you think she will be able to walk with one of those soon? I have also had to use a "porta-potty" next to my bed before after surgeries.

I still have coordination and perception problems and I am almost 2 years post rupture, I have come a LONG way though!!! :P I am still me only a little more "messed up"?? :P I am still in recovery and getting there a day at a time! She is still very soon after surgery, have patience and keep giving her positive support & inspiration. Make her laugh!!!! :lol: It's the best medicine for me!!! :wink:

She may need someone to be with her all the time for a while when she comes home?? I did for the first 6 months, I don't even remember much about them really??

:evil: I know how frustrating dealing with some doctors are!!! It is your Mom's & family's right to get the information and talk to a Dr. when you need too!!! You pretty much have to demand it sometimes and even get rude to get their attention!! She has a right to a second opinion or Dr. if you are not satisfied!! You really have to be an advocate for her care! Go to the head of the hospital or facility she is in and demand to talk to them or get a different Dr. to take over!!

That is not right that you can't talk to her Dr. at any time, within reason. I have all of my reports form the test and surgeries!! My NS gave us his home and cell phone for post surgery questions... He was great, answered all of our questions, explained everything in detail... I was very lucky to have him!!!!

I also found a great "Family Practioner", who deals with "Vascular" patients. (Such as heart, strokes, Annie's...) To take over my long term care. The surgeons only do surgeries, they don't usually do long term follow up. He has helped me more than the specialist I went to!! He found the right combo. of med's for all of my symptoms, severe headaches, light sensitivity, severe insomnia, depression... He is awesome, listens to me, ask questions to both me and my hubby. Some I can't answer, I just look at Bernie?? :oops: I can also call him for emergencies 24-7. ??

:? I would not be here if I had not gone to the ER 3 times and saw 3 Dr's who all misdiagnosed me in the begining. I finally found my own NS and he did my surgeries as soon as he could. He told me I am very lucky to have survived the rupture and the lack of treatment when it happen?? He said the brain swelling alone should have killed me?? That is one of the reasons I have a long recovery, brain is still absorbing the blood. It must be about done because I have got a lot better over the last 6 months! :)

I still have a ways to go though and I work at it everyday, play memory games, write poetry... keep the brain stimulated!! :P

I hope you get to talk to the Dr. soon! I am sorry you are having to go through that?? Sounds like your Mom is already showing good signs of improvement, she is still very early on. I will be keeping her and your family in my prayers!! Please keep us posted! Love Tricia

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Guest Clare

Another update...

Mum had her MRI today, she only lasted 10 mins in the "tunnel of doom" before pressing the panic button. She suffers from claustrophobia anyway, but they put her head in a vice and used another contraption which resulted in her face being covered. The radiologist gave her a major telling off after pulling her out, and said the scan results probably wouldn't be good enough. So we'll see what the doctors say.

If they have enough images and everything is as it should be, she could be home tomorrow afternoon. :shock:

She has already had a letter from the Neurology dept. confiming her first outpatient check on 1st August (her birthday). :roll:

They also had a look in her ears (finally) and apparently the doctor jumped when he saw what was lurking inside, lots and lots of black wax. Now mum has never had a problem with wax, and black?? I wonder if it's blood??

She wanted to go down to the main part of hospital today and have a cup of tea with us, something relatively normal I suppose. It's quite a long walk but she did it, and managed to do some shopping too. She did need some support walking but is gaining strength all the time.

I asked her if she wants someone at home with her 24/7 but she said that she'd like to give it a go alone, with help when she needs it. Obviously I don't want to leave her alone for a scond ever again, but I know she needs to be independent, and I don't want her to feel suffocated. Obviously we will need to see how she gets on.

I went to the GP today to enquire about me being screened and have an antenatal check. He was very sympathetic to my situation and has been through it himself too, so was quite keen to help. He's tried to refer me to the neurologists at Adenbrooks, Cambridge. So lets see if they're willing to offer me an appt. Fingers crossed. Baby's head is down and he told me to conside myself due NOW, arrrrgh, I'm now praying she stay's in her bubble a little longer. :shock:

Rince- thanks for that I will see if there is anyone we can contact after discharge, the hospital doesn't seem desperate to turf her out, it's her that wants to leave. I still dont think the severity of what's happened has hit home yet, but as for "crazy mum" she's aware when she says something a bit nuts and looks at me and says " BRAIN DAMAGE" it's quite sweet actually.

Firefly- well done you for coming such a long way and managing to stay so positive and accept what's happened. It appears mum has had a very lucky escape, and the things she will sturuggle with will probably be minor. I know we need to start stamping our feet with the docs. and I would like to speak to one before she comes home. I certainly won't let her be forgotten this time. I wish you all the best in your future recovery, but it sounds like you've done amazingly so far, and your hubby sounds like a little gem.

Clare xx

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Hi Clare,

Don't think that there are many of us that enjoy the toilet roll tube experience....yes, they put a type of visor over your face, it's hard to describe it, looks a bit like a cage, but you can still see out of it. The last scanner I was in, was a Philips scanner and one of the bigger types, so it wasn't quite so bad.

My Husband Eric, stayed at home with me for the first couple of weeks.....luckily the kids were still on school and Uni summer hols, so there was always somebody around for the first few weeks. They wouldn't release me from hospital unless I had somebody at home to take care of me initially.

Anyway let's hope they've managed to get a decent piccy of your Mum's brain!.....

Hope that you're getting plenty of rest yourself...

Take care,

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The MRI thing is something I also incured the wrath of the Doctors about..... My hip rather than my head tho, if they can sedate me for hip manipulation why can't they sedate me for a MRI?

Scott

PS The trial of my MRI was an epic story in itself!

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Guest Hannah

Hi Claire, sounds like everything is going well!

With regard to the hereditery check, I mentioned it at a routine appointment with the GP and he sent a letter to Addenbrookes - they gave me an appointment within a month!

The first appointment is with one of the Neurosurgeons who asks about your family history. He said to me that there is an increased risk and that it was up to me whether I would like to be screened via either an angiogram or CT scan.

I found it slightly unerving though and asked to think about it before making a decision. The main reason I did this was because of what he said something along the lines of:

"Obviously when we screen people it is to rule out them having an aneurysm and the majority of times we find that they don't have one, what you have to think about is how will you feel if we find one? As a rule (although he admitted that all surgeons differed) we don't operate unless it is of a certain size. You have to think about how you would feel if you were in this position because it is a possibility however small..."

Food for thought, a couple of days later I sent a letter and said screen me. I understood what he was trying to say (in his blunt way) but I figured - I may as well know...

Take care

Hannahx

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Hi Hannah,

It's not an easy decision to make and it's something that needs a lot of thought. I still can't make up my mind as to whether I would want to know or not ....my thoughts are the same as your Neurosurgeon. There's mental issues to consider, as well as the physical ones...... even after having the SAH, I'm still undecided.

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Guest Clare

Well apparently the MRI picutres were fine, mum was sent home yesterday

She spents a few hours sitting and taking in the idea of being home again, then went up to bed. I sent my dad up with her and let them sleep for an hour or so. Then it was time to wake her up for Nimodipine, dad and I left her and did a supermarket run. And I made her some dinner when we got back. I was planning to go back today and help her out, but she asked me to let her see how she gets on by herself, and I have to respect that.

I called her this morning and she was having breakfast and pottering around, she knows she has to take it easy, but wants to get back to running her home and being normal again. She is weak but wants to build up her strength.

She has to carry on with her Nimodipine until sunday, so dad is having to wake her every 2 hours at night. Which isn't great for either of them I know that once she has had a full nights sleep, which she hasn't for 3 weeks, she'll feel much better. She is also taking Aspirin and Phenytoin, I dont know when they will stop??

I promised to go over tomorrow and give her a pedicure, it will be nice to do things girly and not dwell on what's happened.

She is certainly a little fighter.

As for my screening, we shall see if I get an appointment. I think if they do find any annies, it would be a really tough call, but I think I'd rather have it sorted and get on with life rather than live in fear. I certainly wouldn't want my loved ones to go through the pain of me suffering a SAH. But I'll cross that bridge if I ever come to it, I think it would have to be a family decision.

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Hi Clare,

That's great news about your Mum! :D

Bet she's so glad to be back in her own home ..... sleep is definetly the key to recovery, so hope she eventually gets a decent night when she's off the Nimodipine.

Phenytoin is an anti seizure drug .... I was on it for about 10 months ... my Consultant let me come off it early, as I had a lot of side effects from it and it was holding my recovery back. When you're on Phenytoin, you have to have regular blood tests to make sure that the level isn't too high or too low.....my initial GP didn't realise this and wasn't doing them....it was only when I spoke to the hospital after having problems on it, that they told me that he should have been. Hence I changed my GP after a few incidents like that...... but thought that I would pass that on to you, in case your Mum has a similar experience.

Would imagine that you're all very glad that hospital visiting is finally over!

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Guest Firefly

:D I am so happy that your Mom is home! :D I think it is better therapy to be home with your loved ones and feel "alive again!! She needs to eat a lot of fruits and veggies! I eat a lot of friut salads!! Salads are great too! Blueberies are suppose to be very good for the brain!! She is going to probably be very fatigued for a while and taking naps durring the day is very good for her! My Dr. told me that your brain only really heals when it is asleep. I had to go to a sleep clinic for insomnia and have to take some med's. for sleep. If she has these problems talk to her Dr. about it!!

It is common to have insomnia after this. :?: It is also very important to keep her hydrated with water also!! Talk to her Dr. about the amount she should be drinking?? Mine says the more the better!! It also helps flush out all the old drugs. I drink 1/2 -1 gallon a day! Usually over a 24 hour period though. I am a big girl though! :P

You Mom sounds like a tough trooper!! Make sure she doesn't over do things. I tried in the begining, but it just set me back on my recovery.

She souldn't be lifting or bending over for a while. I still get dizzy when I bend over and it has been almost 2 years since my rupture! My coordination is terrible to, I have even fell down a few times. (Doing things I shouldn't have been too soon! :oops: ) I even hurt my back again. :(

It just takes a long time for the brain to heal, she is lucky to have survived by the grace of God! :wink: She has been through very much!!

How old is your Mom? I think she is around my age? I just turned 47. What is her name? How is your Dad doing dealing with all of this?? I am sure my husband would be happy to wrtie him and give him tips, support... This was very hard on my family! It takes a while for them to et adjusted to this also!! We are all going through a "post traumatic syndome". This is a major experiance to go through and effects everyone who is close to him!! That is why we come here! Sometimes it is good to talk to another spouse that has gone throuht this who undertands!! Bernie would prob, be happy to correspond. :wink:

I am sure you are all happy she is home. I hope she heals very quickly. :) She will prob. go through a large range of emotions, which is normal with a brain injury!! Short term memory and confusion is also normal. My best advice is just give her all the love and help you can, try to treat her like a normal person. Sometime we feel like we are being treated like babies. Just keep a close eye on her and if she needs to stop or something, just explain to her that she is just not physically ready yet. If she is doing great, let her go and more power to her!! :P

I will keep her in my prayers and God bless your family for what you are all going through, and helping her so much!! Love Tricia

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Guest Clare

Karen- We are so pleased she is home although we all think she could have done with another week in hospital. But as long as she's happy and comfortable, that is the main thing. I think we are all aware of how long the recovry process will be, I'm just glad it's all over and we can all move on and look to the future.

Firefly- I will keep reminding her about fluids, she's a bit of a salad muncher anyway, so getting fresh fruit and veg into her wont be difficult. My mum is 44 her name is Victoria. My dad has been fantastic, he has always been quite sensitive and although the last 3 weeks have been an enormous strain on him he has suprised me with how well he's coped. I was very concerned about him all the way through, and put more effort into him, because there was nothing I could do for my mum during the critical phase. He did require the occaisional pep talk, and I had to remind him about the positives a bit. I have seen strengths in him that I never knew existed and he has managed to keep his business running along with caring for me and mum, whilst all the time having a broken heart.

I don't think either of my parents are ready to talk about this experience yet, they just want to return to normal as quickly as possible, but I will mention your offer of support and see what he says. Thankyou.

We now realise that mum has been sent home with no literature or advice on recovering and what she should and shouldn't do. So that's where I step in, I just dont know who to call, should I make her an appointment with the GP or wait? Her discharge was so quick we didn't get a chance to ask in the hospital :roll:

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Clare, You access the local services via referral from either the hospital or your GP. Make sure your Mum doen't slip through the net and get her both physio and an OT. OT (Occupational Therapists) are an excellent gateway to the other help your Mum might need. Try also and contact your local Headway and speak o them as well.

http://www.headway.org.uk/branch.asp?step=1&navid=78

Is the link for Headway and they'll have a better idea of what help and services are available locally to you.

Good Luck

Scott

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Clare,

The hospital normally automatically transfers all of the relevant bits and pieces to your Mum's GP...... I was given a discharge sheet when I left hospital and returned home. Was your Mum? It should list all of the meds that your Mum is still on and I can remember Eric making an appointment with my GP and we took the discharge sheet with us, so he could put the drugs onto the system if I needed to have a repeat prescription. May be it's worth making an appointment with her GP in a weeks time or so.....but if she's on Phenytoin, she should be having regular blood tests for it......even though the hospital informed my GP about this, he didn't do them. They will monitor her blood pressure regularly and review her drugs etc. I think that it's a case of how good your GP is, to what aftercare you have, so it can be a bit hit and miss.

If you want, I can send you a small booklet with some recovery info in it. It's something that us SAH patients were given by Wessex Neuro (who were excellent)....it's pretty good and the info is quite basic, with some do's and don'ts in it, but it's probably just the right amount for your Mum and Dad to absorb at this point. Let me know if you're interested, if so PM me with name and address etc.

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Guest Clare

We got a discharge sheet listing all of her meds. which has been given to GP, I think we should get an appt with him asap.

I certainly don't want to let her slip through the net and will speak to whoever I have to. I was considering Headway thanks for the link Rince, I'll see what info I can get out of them on Tuesday.

I will look into this blood test think too Karen, my GP has been my mums doc for years and he's very involved in the NHS there have been a few occaisions when he really has stamped his feet for us, so I'm sure he won't let us down this time.

If you could send on that brochure it would be really helpful. Mum isn't ready for the ins an outs but could do with a little recovery advice, thanks. I'll PM you

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Hi Scott,

I had e-mail contact with Sarah Halcrow the other day .... I also happened to ask about their website and what's happened to it, as it's been down for quite a few months now.....apparently, they're re-doing the site, so your link won't work at the minute. Think that they're stretched, staff and time wise, as Lesley is still on maternity leave.

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Guest Clare

Thanks for that Keith I'm going to print off the relevant ones and give them to mum.

She seems to be coping really well at home and being a perfectionist, has now managed to slowly get things done the way she does them :)

She has also finished the Nimodipine and has had a few full nights sleep, which she hasn't had since SAH.

Emotionally she is still finding it difficult to come to terms with the fact that someone has put something foreign into her brain, and she hates being so slow and unproductive. She also has fears that this will happen again and that she won't be so lucky next time. No amount of reasurance seems to help.

She is suffering from really severe back pain and I thought I read somewhere that this is the blood draining back down the spinal cord but I'm not sure :?:

The fact that she left hospital with no instructions hasn't helped, she doesn't know what she should and shouldn't be doing. Her GP is seeing her on Monday so hopefully he will be able to put her mind at rest and give her some advice.

I have a few questions that I cant seem to find the answers to;

I know coiling is a relatively new treatment but it seems to be perfomed so commonly, is it a pretty safe bet that once an anerysm has been coiled it doesn't present any risk of re-rupture?

From all the tests they perfomed in hospital I presume they looked at all of the arteries and would have told us if there were any more anerysms or weaknesses, or would they have just dealt with the problem one?

Does anyone know the likelihood of this happening again or does mum have a full life expectancy now?

Again I want to thank everyone for their support over the last month, for the hope and honest advice you all provided, I know we're on a long road of recovery but there is relief now that we are out of the woods and we can close the chapter and can move on with life. Obviously I will still be using the boards for more recovery advice, but I just wanted to thank everyone for the help they gave me when it really mattered.

Clare xxx

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Hi Clare,

I didn't get around to posting the book yesterday......hoping that I shall get out after lunch .... it's raining cat's and dog's down here.... :roll:

It's common to feel that the SAH is going to happen again .... it took me 12 months to find some acceptance that I needed to move forward.....the worry does get less and less with time. You can drive yourself crazy with the worry and hence the emotions will keep rearing up..... you do get to a point where you think I can spend the rest of my life driving myself crazy or I can start accepting that it's probably never going to happen again. Time plays a great part in coming to terms with whats happened.....it helps to talk to others that have been in the same boat, as such. I'm not sure that I've ever read of any SAH'er fully coming to terms with what's happened to them......I still haven't, but like I said, over time, you sort of learn to live with it and become more accepting of what's happened to you.

Your Mum should be taking a rest during the day....even if she can't sleep, she needs to put her feet up. Resting up is key to recovery and if you start doing too much it can hold up your recovery. Again, it's something that you learn with time and most of us know that if we overdo things, the fatigue can kick in with a vengeance again, along with a headache.....you sort of get to know your own body after a while and you learn to go with it, rather than kicking against it.

The back pain is the blood dissapating down the spinal cord.....along its route, it tends to irritate the nerves and hence the back pain. I also had pain down my legs and it was horrific......it will go. If your Mum hasn't already got one, get her to buy a V shaped pillow.....it's terrific for resting up and supports the head and neck really well....

Re: Coiling - Coiling itself is still a pretty new procedure, there doesn't seem to be me much info on the long term affects or success. If the aneurysm has been totally occluded/filled then it's treated as being successful. Sometimes, the aneurysm isn't totally occluded and a neck can be left, which isn't ideal......this can also be caused by the coils settling down over a period of time....however, your Mum will be given angios or MRA's to check this ..... I have a neck on mine.....again I was mortified when I found this out, but I've been reassured again, since my last MRA, that it's satisfactory and no further work needed on it. There's a few people on this site, that have had to have more coils put in or had it glued with onyx etc.....they've all gone through the ops successfully, which has been reassuring for me! There's a link on the homepage to a website that shows the coiling procedure, it's quite interesting. On my follow up angio post SAH they checked the coiling and looked for any other aneurysms that may have been lurking.....none were found. It takes many, many years for an aneurysm to form, (most of us are in our 40's when this hits us, considering that this has probably been a weakness since birth) so if you're given the all clear and the existing coiling/clipping is successful, then it should be reassuring to know that it's highly unlikely for this to happen to you again.

Link to the coiling embolisation video - http://www.or-live.com/archives.cfm?bro ... 3&event=62

PS. This website has slightly changed since I last viewed it....I haven't been able to access the video, unless I'm doing something wrong... :roll:

Hope this helps....

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Hi Clare

It seems that your Mum is doing well. :D

It's perfectly understandable that she fears that it will happen again. I think that most of us have experienced that fear and it does fade in time.

All the information I have found indicates that once an aneurysm has been secured by coiling, the risk of re-rupture is virtually non-existant. The coils can sometimes settle in time and regular follow-up angigrams and MRA scans are carried out to check this.

Coiling of anerysms has been carried out since the early '90s and one particular study (ISAT) found that the outcome of coiled patients was significantly better at one year over clipped patients. Due to the relatively short time that coiling has been in use, there is a lack of information about the long term effects of coiling.

Before your Mum's coiling was carried out they would have done a complete 4 artery angiogram to detect any aneurysms. I have my angiogram images on CD so I know they did that for me. Since no one has mentioned any other abnormalities, I would assume that there are none, but it's a question that's worth asking.

Regards

Keith

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