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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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  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. 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.
  5. 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.
  6. 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
  7. Thank you Sami - the husband is pulling his weight, which is nice xx
  8. 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
  9. Hi Verna, Like others have said on here I think some fear os a re-bleed is quite normal post-SAH. I had mine during heart surgery so most of the time I do not have that much anxiety about it, as it happened in quite unique circumstances. However sometimes that anxiety is still there. I went into hospital yesterday for an angiogram under general anaesthetic and I found that an odd and anxiety inducing experience. Although I have had a number of surgeries since the heart surgery where I had my bleed (to have an EVD and then shunt fitted) I do not remember any of these. This was the first procedure I had consented to since the one where I had my bleed. Many of the circumstances around it were similar to just before I had my bleed - going down to London and staying there before the procedure. Both my husband and I found it quite stressful. Luckily it all went ok and this has made me feel a bit better. As others have said on here - if the anxiety is becoming debilitating then seek help from your GP. Hopefully they will be able to suggest some things to help. Although I have not actually had counselling since my bleed I was in rehab for a year and part of that was group and individual sessions discussing the bleed and coming to terms with the long term effects, which I found a useful experience. Take care, Gemma x
  10. I also had a bleed with no known cause and it was a large one. I don't remember anything for around 3 weeks afterwards and also got hydrocephalus, so had to have a VP shunt fitted. Some of my earliest memories are from when I came out of hospital and experienced excruciated back pain as the blood drained off my brain and irritated my back. Like others on here I was on pain killers for all of this time - morphine in the hospital, which I was also discharged with, and then later codeine and paracetamol (I cannot take a lot of other drugs, due to a heart condition I also have). It took me around 5 months to come off the pain relief completely. As others have said on here I think the pain is quite normal immediately post-SAH. Over time it does get better - although I still get pain now which is haemorrhage related such as headaches etc. this tends to be when I have overdone things and I take steps to avoid this. I wish your brother a good recovery - ensure he rests up lots, drinks plenty of fluids and takes pain relief as needed. Gemma xx
  11. Interestingly the people I have shown this to thus far - my immediate family (husband, parents etc.) and a couple of work colleagues have said 'this is you exactly!'. A very useful article xx
  12. Thank you everyone. Had the angiogram yesterday under general anaesthetic. Was out for around an hour and then had to stay flat for four hours to let the wound heal. I found that played havoc with my spine, but apart from that it was all fine. Team at the NHNN were excellent, as usual, and I came home today. Am very tired so have reinstated my afternoon nap, which I haven't had to do for a little while and am a bit sore, but apart from that all good. The radiographer came to see me post-procedure and they have confirmed that they cannot see an AVM, which is good news. They are still puzzled about the whole thing, so it will be interesting to see what my neurosurgeon says when the full report is through - they have said they simply do not have people have bleeds of the size I have had with all the side effects with no apparent cause. I think it is probably just one of those things, but I guess they are keen to find the underlying cause if they can - partly due to the other heart surgeries I am due to have in the future. Anyway, all in all, not a bad procedure. Thank you for all the advice and good wishes. xx
  13. Hi Katy, I agree it is a good idea to check with your doctor. Since my event 19 months ago I have had 4 MRIs and an angiogram. I have another MRI scheduled for around 5 months time. This is because I have a spinal issue as a result of the haemorrhage which is monitored with MRIs. On top of this I have had two CT scans for my heart condition - so in that time period have had something done 7 times. I have been told that the radiation exposure is minimal and that they keep an eye on it. They only do the procedures if the benefits outweigh the potential cost. As people have said on here, it is worth checking with your medical team. Gemma
  14. Yes, poor old Hubby - he has a rough time of it! Thank you for your kind wishes xx
  15. Very useful article - thank you for sharing Greg. So much of it resonates - such as the repeating actions and the having to work by myself, if my husband tries to help me cook I find it very difficult. It is easier to do it by myself and use my strategies.
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