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Gemma B-B

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Gemma B-B last won the day on February 16 2016

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About Gemma B-B

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    Suffolk, UK

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  1. Hi Sean, Like yourself and Daffodil I am a fellow NHNN patient. Had my bleed five years ago and had my shunt fitted about two weeks after. I had an EVD before this and was not able to come off it. From my follow up appointments I know I am still hydrocephalic (to be fair I can hear the shunt draining anyway). Thus far the setting I have has worked. Since discharge I have had an MRI every six months which have literally just dropped to yearly MRIs for both my brain and also spine (I developed a rare side effect of arachnoiditis and arachnoid cysts on my spine, which need monitoring). Getting used to everything post haemorrhage takes time. Even five years down the line I am still adjusting to life post haemorrhage. Daffodil's posts about her hydrocephalus are useful (I read them after my haemorrhage). Take care Gemma
  2. Hi Greg, Like you I have not been on here for a long time. I too had my haemorrhage in January 2015 and have just reached the 5 year mark. Was very interested to read your reflections on the matter. Similar to what Daffodil said above, now I am at the five year mark I do feel somewhat like I have plateaued. My first year after the haemorrhage was spent recovering and then in rehab. I started a phased return to work at the start of January 2016 which was the same time I was diagnosed with arachnoiditis and arachnoid cysts on the spine as a result of my haemorrhage. I was fortunate enough to be able to return to work, albeit part time and without the managerial role I did before (I am a teacher). I have also had to adapt to the spinal injury as I am now a wheelchair user as a result of it. Five years on I think I have learnt to manage things quite well. I am still surprised at the toll fatigue takes on everything and wonder if this will ever change at all. Due to my spine injury and hydrocephalus I am still monitored by the hospital I was treated at (have just been moved to yearly check ups from six monthly ones). I think one of the interesting things about being at this point is dealing with the long term acceptance of what life is now like and how different it is to my life before and the life I thought I would lead. It is encouraging to still come on here and see the progress people have made. I wish you all the best with your continued recovery. Gemma
  3. Hi Lori, Your thread title caught my eye and I thought I ought to reply as 'complicated SAH' essentially sums up my experience. In a nutshell - I was 27 when I had my bleed. I had been diagnosed with a congenital heart defect 6 months prior, which I had had since birth but had not been picked up. I had my bleed during the surgery to place a stent in my aorta as part of my heart defect was that this was narrowed and I was in heart failure. I was taking blood thinners and ended up in a coma from the bleed. My neurosurgeon (I was treated at the National Hospital for Neurology and Neurosurgery in London) has told me that mine is one of the biggest bleeds they have ever seen - they did not expect me to survive the initial surgery or the night. My family were called down from Derbyshire to say goodbye to me. The team at the hospital also assumed it was an aneurysm, especially as people with CHD tend to also have cerebral aneurysms and it was such a big bleed. Ironically enough I do have a cerebral aneurysm, but it was not that which bled, but another source. They have eventually found the source - the bleed came from in my ventricles. They originally classified it as a grade 4/5 but have now said it was a grade 5. I got hydrocephalus as a result of the bleed and required a shunt. The bleed also spread down my spine and caused arachnoiditis and arachnoid cysts, which I have left me using a wheelchair, although I can walk short distances with a stick. Like you I have had extensive follow up and testing. I have seen more than one consultant and also a range of other specialists including a genetic specialist. This is because of the size of my bleed and the fact that 'they have never met another human with all these things wrong with them'. Hence seeing the genetic specialist - they wanted to see if there was a genetic link between my heart condition, the bleed and the arachnoid cysts. The upshot of all of this is that they could not find a cause. Their best theory is that I had high blood pressure for a number of years due to my heart condition which weakened blood vessels. I then had the stent fitted which made the blood vessel burst and bleed out. The other reason for all of the testing was because I will need more surgery in the future and they wanted to see what could be done to limit the risk of another bleed. My cardiology team did consider more surgery to widen my aortic stent as it is wasted, but have decided not to due to the risks at the moment. In terms of you and children. Obviously, I was relatively young when I had my bleed. I had been married for around 6 months and my husband and I wanted to have children. We knew this might be tricky due to the heart condition, but people with CHD do have children. Due to my further complications, especially the spine damage, I have actually been medically advised to never have children. It is on my medical records and they had a meeting with myself and my husband to ensure we understood the risks and to tell us that if we proceeded to go ahead and have children I would be doing it against medical advice and at my own risk. I would think that if your consultant has told you that you are OK to have anther child that they must think the risk is quite small, but I think you are wise to get a second opinion and explore it further. Which brings us on to my final point. I think it is worth going with your second consultants idea to explore the neck region etc. just to rule it out. If you and your husband wish to have a second child then I would explore risk minimisation with your team. If I had been able to have children then the standard practice would have involved me being admitted into hospital early and then having a C section at around 37 weeks. You could discuss ways with your team of how to limit the strain on your body both during pregnancy and also during the birth as well. Exploring exactly how the pregnancy and birth might look might help you both make a decision about if you wish to proceed with a second pregnancy or not. I hope this essay has been of some use to you. I think most large bleeds are from aneurysms, but I am living proof that you can have a huge bleed and it not be from that. It is more unusual, but does happen. As Clare has said above, I think it can be quite tricky when that is the case - with an aneurysm you have it clipped or coiled and then monitored so you know exactly how it is doing. Without that there is no way of monitoring, which can lead to more anxiety and uncertainty about it happening again. I wish you luck in trying to find a cause and making your decision. Gemma
  4. Hello Vermont Girl, I do have experience of this, but not with AFib. I had my bleed during heart surgery (a stent being fitted to my aorta as I have a congenital heart defect). I was taking blood thinners during the surgery (which actually made my bleed worse as no clotting occurred so more blood bled out) and then I took them for 6 months after as per recommendations for stent surgery. My medical team made the same decision - the risk of clotting and an ischemic stroke outweighed the risk of a re-bleed. I did not have any issues taking them and was monitored during this time. Gemma
  5. Mine was affected by the bleed but this was due to the spinal damage I got as a result. This meant I had to take a disability driving test and now have to drive a hand controlled car. I would agree with the above. I think in most cases your premium is not affected - only of there are extenuating circumstances. Gemma
  6. I went around 8 months after my bleed (as I was due an Eye test anyway). They did a more detailed test and they shared the results with the DVLA too. Gemma
  7. Hi Penny, I am 3 years down the line and also have a shunt. I still have a range of balance issues but part of mine are to do with the fact that the bleed caused damage to my spinal column, so I have a spine injury as well. In the first year after my bleed I had a couple of falls - one outside and one in the shower. Like Daffodil and others have said they had to make me reconsider how I go about doing things. I know from your other posts that you are having trouble with the setting on your shunt and I would not be surprised if that is contributing to your balance problems. Hopefully the doctors will be able to sort that out for you soon. I find that since my bleed whilst my balance issues have not actually improved, like others on here I have learnt to deal with them and adjust (and as I said earlier a large part of mine is the spine damage). I can get spells of dizziness and have issues with steadying myself and walking etc. I have walked with a stick since just after the bleed and now also use a wheelchair for any distance. I hope things do improve for you and they get your shunt setting sorted out. Gemma
  8. Hi Penny, I had my shunt fitted 3 years ago and it was very sore and tender for a year (like Daffodil I couldn't lie on it). Now it is better but it is still a bit tender - if I lie on it or catch it funny it can hurt. Luckily they must have got my setting right at the start as I have not needed a readjustment to the setting (and I know from my brain MRIs that my ventricles are a normal looking size). I hope they get the setting right for you soon. Gemma
  9. Hiya, I had my bleed 3 years ago and showed signs of cognitive issues from the outset (so much so that I was tested before leaving the hospital and then discharged into rehab). I found I would often lose words or use the incorrect word for something (it was often a related word, for example I would say shoe when I meant sock and in rehab they told me this was because of the way our brains store words - we store similar words in the same place). I would also stutter or slur words and this would get worse when I was fatigued. Over the past 3 years this has improved, although I do still get it. Stress and fatigue make it worse. I tend to find I have to slow down and speak more slowly to ensure I get the words out. If you are concerned then it might be worth getting back in touch with your doctor to discuss a follow up or see if you could have some tests done? Gemma
  10. Hi Krislwal, I have not posted on here in ages, but your thread caught my attention. Since returning to work as a teacher I find general existence takes up all my energy as have not found the time to post! I had what was originally thought to be a NASAH in Jan 2015 when I was 27. This was a large bleed and was classified as a grade 4/5. I had this during heart surgery for a congenital heart defect and was left with some ongoing issues (hydrocephalus with the VP shunt, arachnoiditis on the spine and arachnoid cysts on my spine). Due to the size of my bleed and the fact I have a congenital heart defect and got the issues with my spine I was sent for a range of tests to find the cause of my bleed. I have had the full range of MRIs and also two angiograms. All have found no AVM or aneurysm. I was sent to a genetic specialist and also a rheumatoid specialist to rule out all genetic conditions and any connective tissue disorders (also Ehlers-Danlos). I have seen a second neurologist to gain their opinion as well (sent by my normal neurologist) and they could not find a cause but were of the opinion that my bleed was not an SAH but a intraventricular bleed i.e. all in the ventricles. The upshot of all these appointments and tests was that I was born with a congenital heart defect which was not picked up into adulthood. This caused high blood pressure which has weakened my blood vessels. During my surgery one of these burst and as I was taking a load of blood thinners this did not clot and led to a huge bleed. It was just a chain of unfortunate events. I did not seek or ask for any of these tests (to be honest I was too out of it in the year following the bleed anyway) but it was pursued by my medical team due to the size of my bleed and my other conditions. I do think my team looked at everything possible though and still did not find a clear, concrete cause. It is hard not getting a reason as to why this happened but over time it does get easier to live with. I find I still get asked about the bleed quite a lot but that is because I was left with physical disabilities as well (use a wheelchair and walking stick) so it comes up often as I am quite young and people are curious. I have managed to get back to a good existence - back in work (part time) and doing some of the things I did before. Everyone who has said the chance of a second bleed is very low is correct. It is just difficult when you have had it happen for the first time, seemingly without any cause. I guess I generally try to not dwell on it too much, take my blood pressure meds and try to live as healthily as possible. Hope this has helped somewhat. I know I have been tested a lot after my bleed compared to many so thought I'd add my comment. Gemma
  11. Very useful - thank you. Am hoping to book my first trip abroad in 3 years this year. I know with my heart condition, hydrocephalus, shunt and spine issues that my travel insurance will be pricey so it is useful to know of some companies that do still cover you with existing conditions.
  12. I agree that after around the year mar my recovery seemed to tail off - I made big gains in the first year, but then it slowed right down. I agree with others on here though that I am still making progress, it is just much smaller and less noticeable. In the first year it was really obvious when I went in the hospital from being unable to pass the 'getting dressed test' to starting my phased return to work a year later. Fatigue is always a tricky thing. For me certain things seem to set it off much more than others - such as a lot of noise. This means that I can handle doing a day at work where things are controlled and I have everything set up for me to work in a way that works for me, but spending half an hour in a supermarket can leave me completely drained. It is always a matter of trial and error and trying to work out the best balance. Good luck with it all and don't lose heart.
  13. I don't actually remember having my SAH, but I do remember the back pain. I can recall memories from around 3 weeks after my SAH and around that time I started to experience excruciating back pain. I was told by the hospital that this was the blood draining down my spinal column from the bleed. I think it lasted a couple of weeks and then started to ease up. I didn't find any real way to deal with it beyond resting and taking a mix of pain-killers. In terms of the longer term - around 6 months after my SAH my walking started to deteriorate and I also started to get pins and needles in my torso and other symptoms. I was still in rehab at this time and seeing a physio who said that this was different to what I had originally presented like. I went back to the hospital where I was treated for further tests and a spinal MRI revealed I had archnoiditis and arachnoid cysts. The archnoiditis is an inflammation of the arachnoid space in the spine and causes pain. The arachnoid cysts are fluid filled sacs that push on your spinal cord - these are what cause my issues with walking. I believe that most of the time the blood dissipates without causing any lasting issues - it is just a matter of getting through the pain at the time. If you are still having issues Deb I agree with Daffodil - I think you should push to try and see someone at the hospital and get checked out. Gemma
  14. Thank you Sami - the husband is pulling his weight, which is nice xx
  15. Hi Clare, Thank you I am glad it is all done and dusted. I was quite nervous about it. Although I could rationalise that it is a routine procedure and that I have had numerous surgeries since the heart surgery where I had my bleed, this was the first thing I had agreed to since that event and that made me (and the rest of my family) quite nervous. Luckily it all went well. Yes, it is odd. My neurosurgeon is baffled as the bleed was so big and I have also had some rare side effects with it, such as the hydrocephalus and spinal damage. To be fair I was on a lot of blood thinners for the heart surgery and that might have had an impact as well. I think they are probably getting to the end of any other routes they can explore. I think I probably just have weakened blood vessels due to my heart condition and high blood pressure, took a lot of blood thinners and had a surgery with opened up an artery near my heart and probably caused a rush of blood to go to my head and cause the bleed. As I am likely to need more heart surgery in the future I think they just want to make sure all avenues are explored. Like you though I think I will never have a nice neat cause. Am on half-term for the rest of this week, so will rest up before back to school next week (what a way to spend my week off!) Gemma x
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