rince

I started my journey in 2003. Divorce came along and so I started looking for that special person who would accept me for who I am. Fast forward to now, a couple of failed relationships and I think I have found the one. I really do want to make sure she is aware of everything that we as a group are going through every day.... Are there partners out there who can help me? Regards in SAH Scott

Hi everyone, My name is Scott.... I used to post on here a few years ago.... Under the nickname rince. ...I have now had eleven anniversaries. ... and again I need your help..... I have a new partner and she has agreed to be my fiance! !!! What I would like is for you all to give her some advice on what to expect..... I have a shunt and suffer from the "normal" stuff that we all experience. Thank you to Karen for pointing me back here via her Facebook. ... Love you all Scott Xx

Life if anything gets harder as the years progress, you will see an improvement post SAH but there will come a time when there is no more progress to be made. You have to learn to accept what your life is, and what you are capable of. Without that acceptance there will only be resentment of what you are left with. Some will make a "recovery" that is almost complete, others will be left with a "scar" from their SAH that will never fade. Although we all start our journey with a SAH we will never all make the same trek with the same problems, we are all different. Having said that we all share a common experience that we can look and see in others the same rough map that we have navigated. In all my years post SAH the one thing that I have learnt is acceptance. Acceptance of what I am left with, what my experience has meant to others and acceptance of where I find myself now. Seven years on my experiences will be completely different to all of yours, but yet with enough in common to form a bond. We almost all share the same hardships yet all of us have a different outcome from where we started. Talking complete *******s now so will sign off. Scott

How that resonated with me! Scott

Edwyn and his wife Grace were on the radio today talking about his experiences post brain hemorrhage and the way it affected his relationship and career. http://www.bbc.co.uk/iplayer/episode/b00lqn8n/Simon_Mayo_22_07_2009/ Follow the link and go to the third hour of the program. Starting about 1 hour 52 minutes into the stream. Really "enjoyed" hearing them talk about the way they've dealt with stroke and it's effects. Grace has written a book called "Falling and Laughing: The Restoration of Edwyn Collins" . Scott

Just to let you all know that the DVLA finally replied to me this week!!! Don't get too excited though, they stated that "we do not as a matter of policy comment on individual medical cases". So in this case it really wasn't worth the wait Scott

Today I "celebrated" my own SAH, like a lot of things in life it wasn't what it seemed to be. It seemed to be a life wrecking event that meant the end of my life. I wouldn't be able to work again and I spend every day thinking about my own death. My finances are wrecked and it has had an impact on a large number of people beyond my immediate family. That's what it seemed to be. What it actually turned out to be was a second chance, a move away from a lifestyle that would see me into an early grave. A rebirth for my relationship with everybody that was close to me, my wife and my children have I would like to think have benefited. From having a husband and father with the time to spend with them talking and being with rather than a figure who would leave in the morning and come back when they were all in bed. Although I don't enjoy the best of health I now appreciate every day that I have in a way that I certainly didn't before. A new circle of friends that understand me better than any others in my life. The freedom that comes from only just having enough money each week rather than a huge shortfall each and every month. A few people have asked me today whether or not it was something to mourn or something to celebrate and on reflection I believe that it was something to be grateful for. In the early years I did mourn the passing of a lifestyle that now I wouldn't want, I genuinely am more happy now than six years ago. Scott

My friend Alex has had cranioplasty, he was in a car accident and had a dent in his skull. He was out of hospital within three days and is a lot less self concious since his OP. He had the surgery about 10-12 yrs after the accident and doesn't really talk about it. The main thing is that it was a routine elective surgery for him and there was no complications. Try asking your local Headway about it, they are really good about this sort of thing. Scott

I still don't know exactly how many coils I've got! Or even the size of my annie. That's more to do with my memory though! Eight weeks in is still very early in your recovery and I'm sure you're going to make huge strides in the next few months. Listen to your body rather than people telling you what you should or shouldn't be doing and you won't go far wrong. Scott

Don't worry Sami, it's my "junk" email address! I wouldn't post my actual email address on here and I can understand why you did that.

Hi Phil, The recovery spectrum is large and you shouldn't get hung up on where you are in that wide spread. What you have to worry about is doing the best YOU can do, don't worry about anybody else but do listen to your body and your brain! Scott

Hi Tammy, My wife is local and willing to either talk via email or meet for a coffee. I had my SAH six years ago this May and I still have "issues", so she is well used to my ways. I always say that those closest to us have the roughest deal, we have the whole SAH thing to hide behind whilst you have nothing. If you want to take her up on the offer email me at (address removed for security) and I'll pass the details over. Scott

Hi Neil, I'm just up the road from you in Bramley, seems we have our very own epicentre for SAH in the RG20(ish) post codes!! We're very lucky to be in the Wessex Neuro's catchment area, I've met your consultant a few times at the support group there, a very funny guy (and seriously talented). We all have our crosses to bear, mine is mainly following Basingstoke Town so a SAH is very much in keeping with that! Hope to speak to you soon. Scott

Hi Maureen, I had a couple of "mini-strokes" whilst being treated, they probably left more of a long term legacy than the SAH. Scott

Hi, I know it's scary but try not to worry too much. I've got a friend who had to have some more coils put in and they were in and out in a week! The damage is done by the haemorrhage and there is a lot less risk in being recoiled than you might think. Although there is a risk in any surgery or medical procedure the risks are not significantly greater than a "normal" cerebral angio. Try and speak to your Neuro Consultant or Specialist Nurse, even if you just call up and ask to speak to someone, expert medical advice is key in understanding your own individual issues. Scott

In the early days post coiling (and by early I mean the first year) there are all sorts of "side effects" that you might experience. It's very much a personal thing and I don't think I've ever met any two people who have the same experiences. If you are worried then get in touch with your GP, Neuro Nurse or Consultant. Scott

Yeah I have problems sleeping and am on Zopiclone to help. It started post shunt, before that it was an issue staying awake! I still wake at 4am some days but that depends on what I've done the day before. Scott

Hi Lucie, Congrats!! Scott

http://news.bbc.co.uk/1/hi/health/7795586.stm

Evelyn as this is supposed to be a handout for post SAH it makes sense to keep it as concise as possible and keep only to symptoms after. There is a lot of confusion out there, and even when you go to the "correct" authorities we get multiple answers! So the aim is to be able to reassure as well as inform. Scott

Yes Keith I know, that's why I said I would get in writing what is required from the DVLA. If you are not allowed to drive it states on the DVLA website that you have to hand your license back, what I will be seeking is a definitive answer. This is without even going into the whole insurance issue and if you need to inform your insurance company! That's a minefield which led to one of my insurance companies withdrawing their coverage, the other said that they went with the DVLA and if I was medically fit to drive then I would be covered. Scott

Keith, This is from the NHS website If you have had a subarachnoid haemorrhage it is likely that you will not be allowed to drive for at least a year. However, if you develop epilepsy you may not be able to drive for longer. Before being allowed to drive again you will need to show that your medicines are working and that you remain free of seizures. Following an illness such as a subarachnoid haemorrhage, you are legally required to notify the Driver and Vehicle Licensing Agency (DVLA). You will not be able to drive until you receive DVLA approval and your doctor has confirmed that you have made a full recovery. http://www.nhs.uk/Conditions/Subarachnoid-haemorrhage/Pages/Complications.aspx?url=Pages/What-is-it.aspx This appears on the Wessex site; It is a legal requirement to inform the DVLA of your subarachnoid haemorrhage, regardless of the cause. The DVLA will ultimately decide how long you cannot drive for, dependent on many factors. You will need to avoid driving until you have heard from the DVLA. Driving suspensions can vary from several weeks, up to a year or more. If you feel you are ready to resume driving and have not yet heard from the DVLA, you should discuss this with your GP. An example of a letter to the DVLA could read: Dear Sir/Madam, It is my duty to inform you that I have recently been an inpatient at ...................................................................after suffering a subarachnoid haemorrhage. I was under the care of (Consultant Neuro-surgeon/Neuro- radiologist) who can provide you with further information. Yours faithfully, I know of people who have driven themselves home from hospital because they were not told about the problems involved in post SAH legalities. I also know that I was told by the DVLA in a telephone call that I HAD to surrender my license. My case might be different because I had passed my HGV, but without getting in writing from the DVLA what people should do I don't feel that we can say one way or the other. There is conflicting information out there and depending on which link you click you get widely different advice. Scott

You see Keith this is one of the things we need to clear up, I was told that SAH is one of the few conditions that means you HAVE to surrender your license. The DVLA will then make enquiries as to your individual fitness to drive and make it's decision from consultation with your doctor. I'll try and venture into the murky world of the DVLA and get a definitive answer in writing from them. Scott

Right if I'm going to crack on with this (The after care - awareness project) I need some help with the questions to put both on it and also to ask. I'm going to update this post with topics and questions that you suggest in this thread. 1. DVLA - What do I need to do? You are legally obliged to inform the DVLA and return your license 2. Coiling - MRI safe? Yes 3. Clipping - MRI safe? Depends on the type of clip used. Ask your neurologist. 4. Recovery - What can I expect? There is a huge range of what to expect, and you will fall somewhere within this. Although you maybe expected to make a "full" recovery this may not mean you will be able to go back to the life style you had before SAH. Some people will not be able to return to work at all whereas some will make a return within the three month period. So you can see there is a wide spread of what could happen it is very much down to your individual circumstances. You have had a life changing experience so it is a realistic expectation that your life will change. Questions to ask my own doctor or neurologist. waiting for your ideas Symptons Long term effects include: Dizzyness Physical disability such as limb weakness. Impaired or double vision. Personality changes such as increased irritability or disinhibition. Memory problems. This is to give you an idea of what I think, it may very well not in the end be anything like this! I want this to be led by us rather than by any health care professional, we are after all I feel best placed to comment on what life is like post SAH. That's not to say that I don't want input from medical professionals, I intend to approach my own neurologist and SAH specialist nurse to get advice. Thanks in advance! Scott

Hi Perry, I think the idea of a drug company could be a winner, I personally don't have any axe to grind against large corporations. If we approached the "right" company, one that supplies coils or clips, they could help us in more than just production of a leaflet. As they would have contacts with the neuro-centres they could help with the dissemination to the patient as well as into GP surgeries. Part of me doesn't want it to be as rigid as a printed leaflet tho, I want it to be more dynamic and up to date, an adjunct to this website maybe? The other part of me thinks that people won't pay much attention to a website as they would something they can pass on immediately. I don't really know. I've started on this as a project and hope to have something to show you all next week. Scott