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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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    Suffolk, UK

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  1. 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.
  2. 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.
  3. 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
  4. Thank you Sami - the husband is pulling his weight, which is nice xx
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. Yes, poor old Hubby - he has a rough time of it! Thank you for your kind wishes xx
  12. 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.
  13. Thank you both. The main reason it has taken a while is due to me - I am obviously now back at work and did not really want to take more time off after having had a year off post-haemorrhage, so requested an appointment in the holidays. It is also better for my husband as it is hard for him to get the time off too. Hopefully it will all go well. I am hoping that this will be the end of the investigation into why I had my haemorrhage as I am quite keen to start spending less time in the hospital (especially as I have found out recently I might need more heart surgery as well). xx
  14. Am glad to hear your appeal was successful Jan. I actually applied for a PIP in the summer as I finally heard back from the DVLA and have been given a 3 year restricted driving license and have to drive a hand controlled car. That along with the other difficulties I have around mobility as a result of the haemorrhage and spine damage led me to apply for it. I had the initial assessment at the end of summer with Atos Healthcare and was rejected for the PIP. I am currently appealing it, especially due to the number of errors in the medical report (the nurse had put that I work full time on one page, and then part time on another - amongst other things), however I do not know how it will go. Reading your post has been useful, however, so thank you for sharing. I have been fortunate as I have returned to my previous job, albeit in a reduced capacity as I now work part-time and also have quite a lot of adjustment at work such as having my own work-space and classroom and having my classes distributed so I do not teach any full days and get lots of breaks. I did feel, unfortunately that this did not work in my favour at all as the nurse seemed to feel that if I was able to do that then I couldn't be that bad (which is rather annoying considering the amount of effort it has taken to return to work). We shall see how the appeal goes however. I have had to sell my old car as it was a manual and cannot be turned into a hand-controlled car and obviously with going part time I have dropped in terms of salary, so at the moment a hand controlled car is not affordable. Gemma
  15. Hello all, After seeing my consultant in the summer I was told that I really needed a follow up angiogram to check everything was ok and to make sure there wasn't anything there that would explain my bleed, so I am going in to have it done next Tuesday down in London. I believe the main thing they want to check for is an AVM. It has taken quite a while to come through as I wanted it in a school holiday, so my husband could also be there. I had my pre-assessment last week, which was quite long as I had to see a consultant and the anaesthetists - I am actually having mine under general anaesthetic due to my heart condition and the fact I am considered 'high risk' as I had my brain haemorrhage during surgery. I am hoping it all goes ok. I know I will have to stay in hospital for at least one night afterwards, but am hoping to be home soon afterwards. Reading what everyone on here has put has been useful as I am not looking forward to having it done! Gemma
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