Super Mario

iannuages , welcome to BTG. What a story of Mary's SAH. I am sure that this will help many survivors of an SAH. I agree there is very little support for us in the medical world. As you say, once we have been "fixed" hands are washed of us and we are left to recover the best we can on our own just with the support of our families. We are here and will support you to the best of our ability. Please don't hesitate to post again, if only to get things off your chest.

Chris, pleased to hear that you have been able to incite some changes for Annie. It is not only me but all the members on here who will do their best to support you both. No thanks are needed. Remember we are here for you whenever or whatever. The forum will support you both to the best of its ability.

Ouch, the burn stinks of neglect. There must be something that can be done for a dropped shoulder, a splint or some sort of support. I suggest you investigate this and put your findings to the doctors. In this day and age of cutbacks folk are tending to be written off rather than spend money. If you do find an appliance that will help Annie's shoulder you may have to be forceful. The fact that anxiety and delusions occur when she is being hoisted makes me wonder if she has been hurt by this procedure whilst she couldn't talk and therefore couldn't complain of pain. May be worth investigating that as well if you can. If you are not happy with her treatment,(some rehab hospitals are better than others,) and what you are saying is falling on deaf ears I would seriously consider contacting PALS for the hospital she is in. They can take complaints forward or just have words in the correct places. They are always taken notice of. http://www.nhs.uk/chq/Pages/1082.aspx?CategoryID=68&SubCategoryID=153

I suggest that you may have to be a little forceful regarding your wife's rehab care. The fact that she needs hoisting should not be a reason to discontinue treatment that may help her future recovery. As for recovery, progression is in baby steps with many a set back along the way.

Welcome to BTG Sadly everyone's recovery is very different and no one can predict what will or won't happen. We have a member on here whose family were told she would never walk amongst other things and she would be better placed in a home. Needless to say, they refused and took her home. She is now walking, not far but improving very slowly. I can't remember how old her SAH is. As I have said, only time will tell with recovery outcomes. As she is in rehab she will be getting lots of support to help her. Any questions you have need to be put to your wife's medical team. Sorry I can't help anymore but other members may. On this forum there is lots of support for survivors and their relatives so please feel free to come back to ask more questions or even to blow a fuse. In the meantime it is also important to look after yourself.

I had an EVD and the dent is still there. I don't think it has changed shape or size and it is just over 10 years old. I have very short hair and it is visible for a week or so after a haircut as it is also bald.

Scoobs, do you by any chance go to the Speedwell Industrial estate in Staveley? I have noticed a new sandwich delivery van parked outside Band It but I can't remember the name. Something like Bap In I think.

30 hours over 3 days is 10 hours of work per day. Difficult to keep up for even anyone who has not had a SAH. I am not surprised you are whacked on your days off. Is there any chance the company would let you spread the hours over 5 days? Congratulations on getting a job in this economic climate, not easy for anyone.

I think Win's family were told to put her in a home but they insisted she went home. She was also in a wheelchair but can now walk a short distance and that is increasing slowly. If she picks up on this I am sure she will reply.

KelBel, not news you want to hear but they will be keeping a close eye on it. I suppose this "blister" could have developed and appeared since your last MRA. Have you thought about complaining about the doctors blasé attitude, not good bedside manners and definitely no understanding of how such news would effect anyone, least of all a person who has had a SAH and already experienced the devastating effects and the struggle of recovery.

Seems quite positive then Dawn.

Hope all goes well for you Dawn and that you can get a satisfactory conclusion.

I had forgotten about that link, than you Daff. I have had a good read and although I do follow some of it there are other things I can do.

Dawn there is a disability adviser at the job centre. It may be helpful to see them as they can help put things in place that will assist you. There is no harm in trying and speaking to them.

My other little girl who we sadly lost in the same year as my SAH welcomed me much the same and hardly ever left me for the last few months of her life. As you she was the one I cried to and told all my concerns. She was such a comfort and it broke my heart when we had no choice but to let her go. Our new little girl we got about 1 yr after my SAH gave me a reason to get up and go, I have to go out no matter how ill I feel. She also senses my moods and is supportive by cuddling up and looking at me in a certain way when I feel at rock bottom. She listens to my moans and always seems to understand. Besides all that the house is never empty so I have company.

Looking PED up the procedure is like an angiogram where the femoral artery is used for access. Good luck in whichever procedure you have. Please come back and let us know about your progress as that information could be useful and reassuring to other members.

Welcome back although I wasn't a member when you were here. I just want to add my congratulations and may the future hold much happiness for you. The lucky lady knows you as you are now not as you were pre SAH so don't worry about anything.

Margy, welcome to BTG. Although I can.t answer your question other members may be able to. In my opinion I would put my trust in the medical team looking after you.

Just don't try to do too much in your time off. Sit back as much as possible and let your brain rest and further its healing process.

Congratulation Susan, I think we all have a different outlook on life since the event. When you look back you can appreciate how much further you have come over the year. Enjoy the day. By the way I love the name for it, very apt.

Certainly the right positive attitude to have Mike

Welcome to BTG Ben. There are plenty of survivors on here who will be able to give you lots of support. In the meantime do not push yourself too hard and make sure you drink gallons of water as this really does help with any headaches you may be suffering. Any questions please feel free to ask as there may be someone who has experienced exactly the same, although we are unable to give medical advice as I am sure you realise.

After my SAH I didn't have any problems sleeping and never woke up tired although I would soon be tired again and falling asleep. Over the last year or so I did wake up tired but I think that I did because although I felt as if I had had a good night's sleep I wasn't. I think it was my knee pain that was disturbing me, a bit like sleep apnoea. Now I am on morphine it doesn't often happen. There could be a reason other than the SAH as we tend to blame everything on that. Why not go to your doctor and ask to be referred for a sleep study, that would rule out or confirm a reason for waking up tired due to sleep disturbance. Even a shunt check may be a good idea to ensure that it's setting is correct for you. I have heard of shunts having to be adjusted over the years as pressures can change.

Not crazy thinking at all as I have wondered exactly the same thing. Edited my last reply to add more info if you want to read it again.

I have a VP shunt for 10+ years and it has not been touched other than to be reset after a MRI scan. It is there to prevent your cerebral spinal fluid pressure building up in your brain because the bleed will have clogged your natural drainage system into your spinal canal. This does not happen to everybody and normal drainage resumes naturally. They are set at a level that is suitable for you. If drainage recommences naturally the shunt will not drain anything. I have wondered about the same thing but logically the only way it could be seen not to be needed is to "turn it off" and see what happens. This would have to be done in hospital under close observation as to reset it could possibly be an emergency if it is still needed. The sensible thing is to leave it be because if it is not needed it won't do anything anyway. Plus it would mean more surgery and the risks that go with that to remove it. I would advise that you have a chat with neuro when you next go to see them as I believe you are still under them.