goldfish.girl

'On the same token, those who know me, know how much I enjoy being active, and as morbid as this is, know I would rather go out young doing something that makes me happy, than old and miserable'. Nick, I loved your quote, above. I have an older son who is just slightly younger than you and since my SAH at 38 his attitude has been the same as yours. It's great to see. Thank you for your comments on kick boxing - I hadn't thought of my young son doing it again when he's a bit older. As you say martial arts are controlled environments and reading your comment makes me think that he could take part again in the future. At the moment he'd be doing it with other kids and the element of control in their activity is not as predictable as that of adults. Thank you for the hope! Good luck with your scan Michelle

Hi Sue, It is so sad to read your posts about your sister & what she has been through. I'm not sure I can say anything to help you. My own son had a brain operation in Jan 2011 and spent 6 months at home with me as his sole carer. Although he was in no way as seriously affected as your sister has been, he did spend most of that time either in bed or on the couch with a blanket. I find it hard to understand why your brother in law won't even consider putting a tv in your sisters room. My son had his tv, xbox, dvds, books etc to try to keep him stimulated while he was too weak physically to be up and about. I also feel that it is not my place to judge your brother in law as I am not living his life and can imagine how hard & heartbreaking this is for him too. I also didn't want to accept help from others if the help was looking after my son. Looking back now I can see that my family must've felt very hurt & snubbed when I refused their offers but at that time I couldn't really care about anyone or anything other than my son & what I thought was best for him. I believed that no-one could care for him as well as I could and that other people wouldn't be able to read his unspoken signs of being tired or in pain as well as I could. I had to be there 24/7 myself to make sure he was ok. I know your brother in law goes to work but wonder if there may be a slight element of this for him too? What an incredibly difficult situation you are in. I hope you can make some head way with your brother in law soon and that he will let you in a bit more, allow you to help and to spend time with your sister. Good luck, Michelle

Hi Mark - thought this might help you & your wife out re DVLA. Scotland is no different - we have to deal with the same (insert appropriate swear word) people at DVLA Swansea unfortunately. However, they were also messing me around - missing time scales, not responding to complaints & basically taking an unacceptable amount of time to do ANYTHING. So I contacted my MP - they have a parliamentary contact at DVLA - and my licence was returned 4 days later!! Might be worth a try if you have been given the run around too? Good luck! Michelle

Hi Shellie 8 July was my 'special day' too but 4 years ago (and my nickname from my family is Shelly, a couple of coincidences there I think!!). That date always gives me a jolt now! There are some other 'yanks' on here (I'm never sure if 'Yank' is an offensive term or not???? Apologies if it is). And several others who had NASAH too. ALL of what you are feeling will improve with time. Especially the fear. Nice to 'meet' you! Michelle x

Hi Sam Sorry to hear you are going through this worry. I had 2 large annis, one of which burst and they were both coiled 2 days later. I had a further anni which was 3mm and unruptured at that point. I was given all the facts on the likely outcome of it bursting and the risks of a second operation to coil it (they didn't have coils small enough to treat it during my emergency op). I then had to decide if I wanted to go through with another op or have it monitored. I made the choice to have it treated as I couldn't cope with the worry & fear, maybe more so as I'd already had SAH just weeks before? I have enormous respect for the other members who are still dealing with this situation & fully understand the concern that goes with it. I understand that the risks of elective surgery will take into account where the anni is etc, etc and some are not operable. For me, taking the risk of a further op so soon after the SAH was the best decision. I think that you need to be given all the facts and available options for your situation before you can find the way forward that suits you best. Good luck with the appointment and I hope it helps to relieve the worry you are going through. Michelle x

Hi Nickopie Wow! You are right about 'if you can't say anything nice'....... BUT, I'm guessing these are people who care about you & are worried for your safety. No body can force you to live your life the way they think you should. Personally, I would see what the doctor says on Monday - be fully informed of all the risks you are taking & what the outcome could be if you have another injury. When you have all the facts, the decision can only really be yours as to what you choose you do. I understand some of the frustrated you feel as my son also had a brain injury (not SAH) and now has to be very careful over what he does. He's no longer allowed to play football or rugby & had to give up kick boxing which he loved. I have seen his tears and his pain & frustration at not being able to do what his friends do and I know that for now (he's 11) the decision is mine. When he's older, I can only advise him & worry myself sick if he chooses to live his life his own way regardless. Be sensible, be careful & good luck at your appointment! Michelle

Congratulations Ron :biggrin: You must be feeling on top of the world! Great to hear your good news! Good luck on Monday Michelle x

David, it is massively frustrating, even 4 years on (for me). I hate not being able to make plans for the days ahead because I have no idea if I will wake up bouncing with excitement or just bouncing off the walls with tiredness & headache........ But, you're right - eventually we come to accept that things are how they are and we just have to keep hope that a change might happen xx

Thank you Mary & Jane. I will have to look up coliac disease as I haven't heard of it. Michelle x

Thank you ladies. It seems to be inconclusive still. Interesting that you have occasional problems too Louise. He has had more blood tests & a stool sample tested recently and they are clear. Ah well, let the confusion continue Thank you for the replies - I thought I would just ask you all here to see if it was a common after effect of a shunt being fitted xx

Hi Ann, I also got my licence back last week (maybe DVLA were having a Scottish people week last week?!) Mine was revoked for suspected 'post stroke epilepsy'. As broron says, the medical section of DVLA are very helpful, I found them much more helpful than the regular DVLA department. This is the phone number I was given for them: 0300 790 6806. It might be worth giving them a call to ask about how/when to re-apply for your licence. Good luck, Michelle x

Hi, I've just been reminded of the many members who have had Shunts fitted and thought I'd ask a question of them. The question is in relation to my son, not my own SAH and I hope it is OK to ask it here? He had a Peritoneal Shunt fitted in Jan 2011. Apparently the cyst squashing his brain & the damage caused followed by surgery through his skull are not relevant to any headaches or fatigue he has suffered since AND the shunt which goes from his brain, just under the surface of his skin all the way to the drainage point in his abdomen has nothing to do with the constant sickness & diahroeah he has suffered since the operation.The sickness has got better, the constant 'runs' have not yet (18 months later). I also have to mention at this point that his intra skull operation is not classed as, as invasive as my own coiling operations to treat SAH???? (Certainly felt worse as a mother waiting for news I have to say!) Have any other members with a shunt to their abdomen had this? The shunt drains any build up of fluid from his brain to his tummy. He was a fully healthy child before the operation & to my mind, a foreign fluid draining into his abdomen is the only cause of his new status. Neuro Doctors disagree and say there is no cause for his stomach problems,(as well as denying any possible link between brain surgery and headache or fatigue, hence my lack of belief in their opinion) the non 'brain' doctors agree that the irritation from a non-natural fluid to his tummy are the cause as they did not exist before. I'd would be really interested to hear any other 'shunt patient' experiences on this before I go back to do battle at his next appointment in September p Thank you xx

Hi Patsy, I had a womb that tilted back and luckily had 2 children with no problems but I did have them both before the SAH so I can't comment on pregnancy or labour afterwards. I had also had several treatments on my cervix before I had my second child. Maybe asking for a referral to a gyneacologist (sorry I can't spell that!!) would be the way forward to have those questions properly answered? Hopefully you will see one before December but I'm guessing they would discuss things with your neuro doctor too. Good luck! Michelle x

Hi Heather Firstly, do not assume that your partner will have an 'easier' ride because he was coiled. Obviously the less invasive operation carries less risks during the surgery but certainly does NOT make things any easier. The problems left behind are more likely to be caused by the bleed rather than a successful operation to stop the bleed. Like your partner I went back to work very quickly - 8 weeks later whilst waiting for a second brain op at 12 weeks. Personally, I believed that I would get better and better (a bit like recovering from the flu or something) as long as I kept trying and kept pushing myself. It can take us very independent types a long, long time to understand that we do need help & accept that some parts of our lives beforehand cannot just slot back into place. I didn't find BTG until 2 years later & even then found it hard to believe that some people hadn't got 100% better. Joining this site also helped me to understand that it is OK to not have made a full recovery, no matter how hard you've tried. It would probably be a huge help for your partner to join himself - it's fine for him to read others journeys and still be sure his will not be the same. But the relief for many of us is to read that others have similar issues, it stops you from feeling so alone. As it is still really on in recovery for your partner, there are likely to be MASSIVE improvements as the weeks go by. Good luck to you both! Michelle xx

David, congratulations on reaching that milestone! The first year is definitely the hardest and you've come through it. However you decide to mark the day tomorrow, have a great day and look forward to better things ahead. Michelle xx

Hi Mark, I commented on your other thread yesterday DVLA are a total nightmare & the time they take is just not acceptable. I got my licence back this week after a very long battle. There really is no excuse for how long they take to acknowledge things and respond to them. I got my new licence yesterday (Friday), today (Saturday) I got a letter saying they are pleased to inform me that I am fit to drive & will receive my new licence in the next 2 weeks I would still be waiting for their decision if I had not contacted my local MP. I only did this after they consistently missed their own time scales, followed by a non response to my official complaint to them - they said they would respond to the complaint within 10 working days, they missed that slot too! I'm still waiting for the response to my complaint but really not interested in it as I now have my licence back at last. I had exhausted every available avenue before contacting the MP but maybe more people should to high light the massive failings within the DVLA system? It clearly needs a huge overhaul of their practices or more staff to deal with the back log. I was told 4 years ago that each of my platinum coils cost £6000,(I had 3 annies coiled over 2 separate operations & have never asked how many were used in total - I don't think I want to know as it might upset me). Good to see that like everything else, they are coming down in price to keep sales up Good luck to you & your wife with her recovery. So great to have that awful worry over with, things can only get better from now on Michelle x

Fantastic news Mark That Cyprus holiday is back in both your sights to celebrate the success!

Hi Vivien, Great news to hear that you are now deemed OK neuro surgeon wise. Congratulations. I have a final scan in July next year (at the 5 yr mark) and hope to have the same outcome as you. Although, I still have lingering niggles that if no-one ever checks again, how will I know I haven't got any new ones??? I had 3 and was told it's likely to be genetic & I am at higher risk of developing more. That does scare me. Does this cross your mind too or do you feel confident that you are & will stay ok now? I hope to have that feeling by next year too. I loved your explanation of how you felt each year, I think it is very realistic and it has been almost identical for me. Reading your post makes me look forward to what year 5 is going to bring!! Many congratulations, Michelle xx

Hi Vicki, Yes, unfortunately, I know what you mean. Friends seem to drift away over time if you don't 'get better' & be the same person they were friends with before you got ill and enjoying the same things that sealed your mutual friendship in the first place. It is hard & it really does hurt. For me some of them are still there but very far in the back ground....... Sadly, apart from on BTG, there is only one friend who has offered help & practical support over the last year & a half - and she is a friend who has also had a stroke. I think people have to have gone through it to truly understand how you feel, what your limits are and why you behave as you do now rather than judge you for not being who you used to be. My next goal is to make new friends who I click with as I am now. I know it won't be easy but I am working on it. There is a saying along the lines of 'friends are there when times are good, good friends are there when times are bad'.....I've found that to be very true and worth remembering when you feel hurt by their actions towards you. Michelle x

Hi Donna, I'm 4 years on too and have a lot of the same symptoms as you. I hate the days when I stagger a lot because you know people will assume you've been drinking and not stop to think it may be something else. I find that really embarrassing and tend not to go out on the bad days or at least go with someone. Other times I think I'm fine but start wobbling or staggering while I am already out. I don't have any answers to give you - sorry. But am waiting to hear input from a rehab consultant about the headaches & fatigues. I'm guessing the answer will be trying different drugs which I would not be keen to do. I'll post if I hear anything positive to try. I don't work any more (I was medically retired) which has helped but it is still massively frustrating not to be able to do things like my garden, carrying shopping etc, etc and knowing that if I go for a lovely walk, I'll spend 2 hours sleeping after it..... Michelle xx

Congratulations Ron Brilliant news - I am hoping to hear the same this week....... Good luck with your first 'go' back in a truck, I'm sure you will be fine. Michelle x

Hi Bill, That is great news. Now you can start to get the help you need to get well again. Good luck. Michelle x

I have to be really honest and say I'm not sure that I should post this (even as I've started typing it) but it is I believe (???) staying on topic..... In Oct 2010, I had to walk out of work & go through the long drawn out medical retirement process. Two months later my son became seriously ill & underwent brain surgery, two months after that I lost my licence & we were pretty much house bound for over 6 months. I live alone with my son, there is no other wage coming in, no-one to go to the shops as required & I do not have much support since my own SAH. I went through the absolute terror of losing my son or having him taken back to the ward no longer as he used to be whilst doing battle with my employer and the UK benefits system, whilst still trying to sort my own life out after SAH. The employment battle ended extremely well for me last December. The benefits battle only ended last week. ESA was awarded in the support group in June 2012, Disability Living Allowance ended just last week with my money being doubled (sounds great eh ) from £20 a week to £40 a week - the great bit is that it has been awarded indefinitely which I believe means that I do not have to reapply & that the 'permanent' brain injury has now been recognised as such 4 years later. There have been many, many very dark times throughout this last 18 months where I wanted to give up & did not have the strength to keep fighting, had no-one to turn to for practical support etc. BTG has always been a place to turn to for emotional support. There are still times when I can't see how to make it all better but at least now some of the battles are over. It is largely because of the neuropysc testing that I have finally been allowed to stop fighting some of the battles - the powers that be will not listen to what I say but 'get it' when a professional puts it in writing. My point is that whilst there are still some things to get sorted out - when I look back to a 18 months ago, 12 months ago, even 2 months ago - it all seems like the worst nightmare I ever had. Most of it is over, a distant horrible time. Never give up even when it seems too hard to keep going - one day it will all be a bad memory of a hard time that is now over. Michelle x

Mike, well done on the swimming. 'They' say exercise is one of the best ways to help when you feel down. And from personal experience - it doesn't solve everything but it definitely makes you think from a healthier & refreshed state of mind. Bill, I'm so sorry to hear that you've been having such a hard time & it's good to see you back posting again. Keep posting & trying to get back to a happier place in your life. I always try to remember, when things feel really bad, that in the near future what is happening now will be a memory of a horrible time that is now over. It WILL be even if it's hard to see that at the moment. Take care. Michelle

Hi Julie Well done on getting back to work (and managing to get a shiny new computer ordered ). It's nice to 'meet' you & you will find so much advice & support here to help you continue with your recovery. Michelle x