Sammy Anne Posted July 20, 2015 Share Posted July 20, 2015 Hello, I suffered an SAH on June 2. Spent five weeks in hospital most of that in intensive care neurology. Vasospasms, hideous head aches (morphine treated) and hallucinations beginning a few days after the SAH and lasting about two weeks, 4 lumbar punctures. No real diagnosis but ongoing examinations programmed over the next three months. Since leaving hospital on July 8, I've a lower back pain which is getting worse rather than better especially when I try to bend over, pick something up or if I am seated for any length of time. Same sort of pain in the back of my legs from the hips to the knees. I know most of you have had the same or similar experiences and I'd be grateful for any ideas on what this back and leg pain might be about.... I'm afraid to bring it up at the next consultation in case they hospitalise me again Still have head aches but thankfully slight compared to the intial "thunder clap" headache. Exhausted after the slightest effort. Only pain relief is lying down. Am also wondering if I dare chance a trip to the UK (car and ferry) on 1 August which has been planned for months (don't want to disappoint my little girl who adores coming back to England). But it's so close to the hemorrhage date I'm afraid to chance all that driving even though I'm only a passenger. What do you think ? Best regards. Sammy Anne Quote Link to comment Share on other sites More sharing options...
Tina Posted July 21, 2015 Share Posted July 21, 2015 Hi Sammy Anne A very warm welcome to BTG. It's very early days for you. I was told my neck and back pain was the blood dispersing down the spinal cord. This can take some time to disperse. Don't be afraid to mention your pain at your next consultation, you must let them know so they can check all is ok. Exhaustion is very normal after doing the smallest of things....your brain is working hard repairing and also trying to work as normal. Rest rest and more rest especially in the early days is very important for your recovery. Listen to your body and be kind to yourself, Karen who created BTG told me that in my early days As for your trip, only you will know if you feel up to it. It depends on how far you have to travel and if you will be expected to meet up with others and do lots of things ? You would need to be able to rest up and recharge a lot. Perhaps it would be best to postpone it, I am sure your little girl would understand as you have been very poorly, but see how you feel. I would also check with your Consultant before going if you do, especially as you have on going examinations over the next three months. Wishing you well in your recovery and look forward to hearing more from you. Take care Tina xx 5 Quote Link to comment Share on other sites More sharing options...
Karen Posted July 21, 2015 Share Posted July 21, 2015 Hi Sammy Anne, Re: back and leg pain, I had the same and as I was told the same as Tina and that it was the blood dispersing down the spinal chord and it irritates the nerve endings causing back and leg pain. I didn't have any lumbar punctures but I've read on here that it caused some members back pain etc....it's worth asking the medics the question and then they might be able to prescribe you something for the pain. I can understand your anxiety about returning to hospital, but I honestly doubt that they would hospitalise you for back pain. I've not heard of anybody being re-admitted for this sort of thing. Bite the bullet and go and see your GP, don't put up with pain if you don't need to. Wishing you well. xx 4 Quote Link to comment Share on other sites More sharing options...
Gill C Posted July 21, 2015 Share Posted July 21, 2015 Sammy welcome to btg. Lots of rest and drink lots of water will help with the headaches. You'll need quiet times just to recoup your energy and allow yourself to heal. I went on holiday in the August after my clipping in the June. I didn't do any driving but it was exhausting. I managed an hour or so on the beach before the noise and movement became too much. If you can factor in rest time during the drive and ferry crossing that would most definitely help. rest really means time somewhere quiet and with the lights dimmed. I didn't have a haemorrhage but did suffer with vasospasms after the op. Was advised to drink lots of water and that really helped. I slept lots and needed quiet time often. That's greatly improved over the last 5 years so now I recognise the overload feeling approaching and can head it off. Good luck if you make your trip next weekend, maybe delay it for another week or so until you feel more confident with the driving etc? 4 Quote Link to comment Share on other sites More sharing options...
ClareM Posted July 21, 2015 Share Posted July 21, 2015 Hi Sammy Welcome to BTG you will find lots of help and advice here. I agree with Tina and Karen re the pains you are experiencing in your back and legs. I too had this, it gradually stopped but I still get pain in my coccyx even now when I stand for a long time. However if you are thinking of travelling best to get it checked out. Re your holiday, I had my NASAH on 9 Feb 2015, I travelled to Menorca on holiday on 8th May 2015 after receiving the all clear from Wessex neuro. I managed the journey, my husband did the driving, lifting etc and we had a lovely time. However I found I was very tired, didn't get up until past 10am every day and was in bed by 10pm most nights. However it didn't matter as we were on holiday! If you do travel, make sure you have plenty of water and rest as much as possible. If you have family support it will help immeasurably, just make sure they all know what you have been through! Keep us posted on your progress, I take it you live in France, whereabouts and for how long? Clare xx 4 Quote Link to comment Share on other sites More sharing options...
Macca Posted July 21, 2015 Share Posted July 21, 2015 Hi Sammy, Talk to your doctor. If you are experiencing these pains your doctor needs to know because he's the one that can do something about it if possible. I had three lumbar punctures and I had leg and back pain. I have aches now rather than pain but in the early stages, like you are in now, it was very uncomfortable - they just told me it would settle down over time and it has, but it took a long time. Patience is a virtue and don't try to do too much too soon - your body has a way of telling you in no uncertain terms that you have, so please take it easy! Good luck and enjoy your trip! Macca 4 Quote Link to comment Share on other sites More sharing options...
Louise Posted July 21, 2015 Share Posted July 21, 2015 Hi there Sammy warm welcome to the site, glad you found us. Aw never be afraid to bring something up like that honey, they won't know unless you tell them, more than likely the lumbar punctures and blood flowing again but why not get a GP appointment just to get checked out and have a chat probably put your mind at ease. Take carePs I've had lots of lumbar punctures so know what it's like but don't suffer get it checked out. 5 Quote Link to comment Share on other sites More sharing options...
Winb143 Posted July 21, 2015 Share Posted July 21, 2015 Hi Sammy A I too have really bad back ache in lower back and am now walking baby steps before back starts hurting me. Mind you I have put on weight !! (What's new) Love chocs. Whatever you decide do not overdo it xx Wishing you well and if you go, tell whoevers driving you'll need a few stop offs xx and all what others have said. Plenty of water = plenty of stops for toilet xx Water is a must !! so welcome and good luck xx Best Wishes Winb143 xxx 3 Quote Link to comment Share on other sites More sharing options...
Sammy Anne Posted July 23, 2015 Author Share Posted July 23, 2015 Thank you so much for this very warm welcome and for your support and advice. Frankly I have been breathing easier since finding this site and reading about different people's experiences. It's helping me in some ways come to terms with the feelings of anger and "injustice" that had been raging through me alongside fear obviously over the first few weeks. This week I've had more examinations, a PET scan and an examination with a doctor from Internal medicine, as they have been looking at rare or inflammatory diseases as a cause having excluded pretty much a "neurological" cause. Yesterday I was relieved to learn that they had finally excluded Sarcoidosis as a possible cause (can't tell you the horrible invasive examinations I've had to undergo to get to that conclusion). I'll need to do another lumbar puncture (number five ) beginning September, cardiac exams as the bleed caused inflammation around the heart and lungs and hopefully by end October when I have another rdv with the Neuro consultant, I'll be given the all clear if that's possible. In the meantime I've cancelled the trip to Britain as I'm tired and just don't feel safe travelling (from France Clare). It's been a testing time for my five year old daughter who wasn't allowed to see me for the first sixteen days ... yes we counted every one of them ... partly because I was too ill and partly because in France children under 15 are not allowed to visit (except for "exceptions" which we managed later on). My daughter and I have never been separated so this was very hard and unnerving. She is feeling "unsafe" and asking what will happen to her if we both die while she is small. This comes from having seen her father in intensive care for three weeks with pneumonia and pleurisy and now her mother six weeks in intensive care for the NASAH (by the way, she very probably saved my life as we were alone at the time it happened, she couldn't wake me for several hours and then took the phone and called her father who was away at the time). I bless every day I wake up feeling in tact and alive and most of all bless my daughter for her courage and ability to recognise that something was wrong and do something about it. Thanks again to all who wrote back. Sammy Anne 1 Quote Link to comment Share on other sites More sharing options...
ClareM Posted July 23, 2015 Share Posted July 23, 2015 Hi Sammy What a brave little girl you have, well done her for making that call to her daddy. Sounds like you have had a rough time and that the French medics are very thorough! I was lucky in never having to have a lumbar puncture though I did have an EVD which has stopped me from driving for 6 months. I have heard that lumbar punctures are very painful so to have had 4 and another on the cards must be very daunting! Rest now you have decided not to travel and spend the time with your daughter rebuilding trust. There's always half term in October, you will hopefully be feeling a bit better by then. Take care, drink, rest and smile - you are still here to be a mummy! Clare xx 2 Quote Link to comment Share on other sites More sharing options...
Karen Posted July 23, 2015 Share Posted July 23, 2015 Sammy Anne, it's hard for children to deal with, no matter what age ... mine were early teens. Your little one has asked "what happens if you both die?" ... mine kind of bottled that one up, being older, but thought the exact same and were scared. It took a long time for them to feel confident, the same for you, that nothing so awful was going to happen again .... There are no guarantees in this life, but just keep talking to her ..... hugging her and try to maintain some sort of normality.....you will get there and so will your daughter .... it doesn't happen overnight and my daughter just wanted to keep talking about it .... it went on for months and we laughed and cried together. The first time that I realised that she was healing and life started to resemble some sort of odd normality?... It was when she had a couple of friends around and I could hear them roar with laughter, instead of trying to keep quiet .... it was so fabulous to hear that laughter and I can still hear it now and it makes me smile. You're going to be okay and so is your daughter..... take care lovely. xx 4 Quote Link to comment Share on other sites More sharing options...
Winb143 Posted July 23, 2015 Share Posted July 23, 2015 Nice post Sammy, My Daughter is a grown woman, but in my dreamlike state, she was little and I knew she needed me, dream ? maybe but it was so real. Your Daughter is a brave girl and she'll need reassurance. So sad isn't it what our loved ones go through xx My daughter gripped my arm and said welcome back Mum and we both ended up sobbing xx Get well and if you feel down, come on here as I have come off here laughing and my family think I have lost the plot. We will all get there xx so give daughter a big hug and sigh a deep sigh of relief xx Now smile xx Good Luck Winb143 xx xx 4 Quote Link to comment Share on other sites More sharing options...
Daffodil Posted July 23, 2015 Share Posted July 23, 2015 sammy Anne. What a clever little girl, she will go far.Sorry to hear you have had so many invasive procedures. Lumber punctures are my least favourite thing ever so you also are being very brave. Keep going lovely. This will pass.Listen to karen , she is wise on this one and gave me similar reassurance and she was right. My daughters were 6 and 8 when I had my SAH and like you I didn't see them for weeks initially. Family , rightly , took the decision that neuro HDU was no place for them, when they did come I had moved to the intensive care ward and to be honest some of the scenes they witnessed were scarier than seeing mummy so ill. I guess that's my way of saying that don't beat yourself up that you were apart. They do forget, they are scared, naturally but eventually this turns into realisation of how much the is to be grateful for. She will be ok. Give her and yourself some time. Plenty of hugs. Talk about it and be open. You can't promise to live forever but you can love her unconditionally and celebrate the new opportunity of living albeit findinh your new normal.Take care. Bon Chance x 4 Quote Link to comment Share on other sites More sharing options...
Macca Posted July 23, 2015 Share Posted July 23, 2015 Hi Sammy, I had a lot of those "Why me?" thoughts at the beginning. I was angry, confused, frustrated and any other words you can think of to describe what I at first thought was indiscriminate injustice. Then I thought, I'm not going to let this beat me and looked at it from a different perspective and here's some of what I came up with: These people worked hard to save me, I'm not going to waste their efforts. 1) What opportunities does this condition now afford me?(appreciate my family more, re-appraise my lifestyle and commitments) 2) How can I change what I was doing before to make my life more bearable for me and those around me? (travel less, stress less by analysing what's important in life etc) 3) What can I do to help me get back to work? (go for a walk, do the crossword to keep my brain working, keep in touch with colleagues etc) 4) How can I change my lifestyle? (Slow down, less hours, retire, walk more, eat less and better, re-schedule things, delegate more) 5) Not what can I do for myself, but what can I do for those who supported and looked after me? (smile more, make more time for them rather than for me, do things for them while they are at work and I'm at home, simple things like wait for parcels, look after kids till grandma gets there, wash up etc), 6) What other abilities have I got or can explore to replace any I may have lost. (lost playing football, gained painting, model making, gardening, DIY, reading more and so on) That's the way I tackled it and it has worked pretty well for me. All the above were things I could control. The SAH happened but I couldn't change that, so I asked myself how I could move forward from it. Don't get me wrong, I still have my moments, but overall the picture is positive and good. Everyone's experiences will be different but there are things that most people can do to a greater or lesser degree. and you have to find your own level. As we age we get used to things slowing down and we adjust almost without noticing. With a SAH the change happens overnight and it panics us a little bit until we get used to it. You will adjust in time - you're just doing it back to front because of what happened to you. Give your little girl lots of hugs and re-assurance and lots of quality time. You may even think your life has gained quality rather than lost it as a result. Let her know how special she is. Doing lots of things together will be of great value to all of you! Best wishes, Macca 7 Quote Link to comment Share on other sites More sharing options...
LauraNW Posted July 24, 2015 Share Posted July 24, 2015 Hi Sammy, Welcome, you have found a good place here in BTG, and I am speaking from recent experience. Dad had his SAH on 14th May, so a few weeks before you. I am an only child but an adult and married woman, similar questions struck me when all this happened, but I can tell you for sure that this time last week I didn't think I would feel as I do this evening. It really is true that time is a healer in this situation and often just a few days can make so much difference. I have moved home to help with Dad's care and just to be 'around'. the more time that we spend together and the more 'normal life' things we do, the feelings of fear, panic, being overwhelmed and questioning begin to subside. A lot of hugs, a lot of cake and 'treaty' meals, and plenty of giggles have been very restorative for our family. I can't imagine how hard it must have been to be away from your little girl for so long, but as someone who was a visitor to High Care and Acute care for several weeks, it was often the suffering of other patients that rocked me as much, sometimes more, than what was happening for Dad. They are emotionally difficult wards to be on, particularly once you start talking to other people's families. Your little girl sounds incredibly courageous and clear thinking, you must be very proud of her. I also wanted to thank you for asking about lower back and leg pain, Dad has been experiencing this too and he was relieved to hear that he wasn't on his own. He had 3 lumbar punctures after his EVD blocked. You also sound like you are having a lot more aftercare than Dad is too, so that is very positive. We went for our first long drive today to see my new home, it was about 1.15 hours, mostly on the motorway. Dad said he found it tiring as despite being a passenger old habits die hard and he was 'driving' it in his mind, watching traffic and so forth. So that might just be something to keep in mind. I wish you and family all the very best; as we say here, the worst is behind us and it will keep getting better from here.xx 5 Quote Link to comment Share on other sites More sharing options...
Sammy Anne Posted July 25, 2015 Author Share Posted July 25, 2015 Hi Laura, I am sorry about your Dad. It is a dreadful experience as everyone here knows a SAH. I do hope he wasn’t alone when it happened. Great that you could be available and so present to take care of him. I know how much that counts. My husband has been both “Mummy” and “Daddy” since I got ill and has taken everything on himself so I can switch off, rest and listen to what my body’s saying every day about how it’s improving. The back and leg pain is a strange thing. I can’t really bend down and if I do then getting up again without something to hike me up again can be a problem. If your Dad has this, then he probably needs an arm to get up (out of an armchair for example). Having said that, I asked the consultant for a prescription for Physiotherapy on my neck and back. It’ll probably be mostly massage treatment (unfortunately I can’t be more precise as most of the physiotherapists here are away on summer vacation) but that would probably be helpful. Maybe your Dad could benefit from something similar ? I can’t stand being in a car for more than about fifteen minutes especially if I've done something else during the day like walk. It’s exhausting. Every little bump in the road seems to go straight into the brain and at the end of a trip I just need to lie down in a dark room and take some painkillers! I don’t know how long ago this happened to your Father but I suspect he may have been more than just mentally fatigued through virtual co-driving. You’re right Neuro can be a very intimidating environment. I remember seeing patients in a dreadful state. One particular “horror”, and I measure my words here, was unfortunately witnessed by my daughter on one of her rare visits. But I also met someone there who gave me courage, she had had some form of brain injury which left her (a phonetics and language teacher) at the age of 41 (she also has a five year old daughter) unable to speak because of a paralysis of the tongue. The Neuros despite much consultation and discussion were unable to understand why the paralysis persisted. She left the hospital without much treatment or support and no medication and no doubt many questions about the future. I wish your Father the very best for a quick and complete recovery and courage to you and your family in your support of his convalescence. Take heart, he does sound good and most particularly in a good state of mind which has I believe a tremendous influence on one’s physical health. Best, Sammy Anne Quote Link to comment Share on other sites More sharing options...
Sammy Anne Posted July 25, 2015 Author Share Posted July 25, 2015 Laura, Oh I see it was May 14. Sorry. Still I can imagine him needing to minimise car trips and maximise rest. It's still early days. Quote Link to comment Share on other sites More sharing options...
Sammy Anne Posted July 31, 2015 Author Share Posted July 31, 2015 I meant to say a big thank you too to Laura, Win, Daffodil, Macca, Clare and Karen. Your advice is really invaluable, so is your support. It's such a relief to be in touch with people who understand. Thanks again, Sammy Anne 3 Quote Link to comment Share on other sites More sharing options...
Winb143 Posted July 31, 2015 Share Posted July 31, 2015 You are welcome Sammy A xx How is back ? mines still hurting if I walk a way but I was told I'd never walk again so anything is a bonus xx You keep well and have a good weekend xx and keep happy it really helps and singing xx All the Best WinB143 xx xx 2 Quote Link to comment Share on other sites More sharing options...
Sammy Anne Posted August 6, 2015 Author Share Posted August 6, 2015 Thanks Win. Just started PhysioT but still feeling like I've been whacked in the back by a cricket bat. The pain's in the lower back right down to the coccyx (exactly the area the 4 LPs were performed on). It's often hard to sit up and very hard to bend over and even tougher to stand up straight again afterwards Not taking painkillers out of a sense of rebellion ... resenting still being reminded by these physical symptoms of the nightmare of June 2nd ... It's actually more painful now than when I left hospital ... maybe that's because I'm more active?? Just guessing. They have said I will need another L Puncture in September so we'll see then if it's blood in the spinal cord or just a result of almost two months of inactivity. Now I'm forcing myself to walk a little further. Today I'm taking my daughter for lunch. That's a good twenty minute walk. Definitely necessary to test. I hope to be able to do some cycling soon too. We both have velcro ID bracelets now (thank you Ebay) just in case I have a other funny "turns". I do a bit of singing as my little one is musical and she loves singing in English (though we're still working on the words!!) so taking your advice! Look after yourself too. I understand you have jumped through some seriously flaming hoops ... but you've come out the other side like a real "fire fighter". Keep believing .... Happy Thursday Xx 1 Quote Link to comment Share on other sites More sharing options...
Winb143 Posted August 6, 2015 Share Posted August 6, 2015 We have to Beat it Sammy A, and we can, I sing my brothers songs, real oldies but goodies. lol You need happiness and laughter in life as we have had it rough, all of us on BTG xx (Wins answer to problems sing ) You have a good day Sammy and get a coccyx cushion ahhh bliss !! my hubby got me expensive cushions, but one with a cut out by base of spine is so good and cheaper and works (lots of ands there lol) So Wins message to Sammy A Ready Sammy? 1) Keep away from people who tell you their tales of woe (apart from me lol) 2) Keep a smile on your face 3) Never give up xx Love Win xx xx Walks away with daft grin on face xx Happy Thursday also xx laughing to myself xx 2 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.