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Gemma B-B

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Everything posted by Gemma B-B

  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 ne
  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 w
  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
  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 th
  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
  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 i
  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 an
  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
  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
  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
  16. 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. Th
  17. 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 too
  18. 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
  19. 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. T
  20. 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 hav
  21. Yes, poor old Hubby - he has a rough time of it! Thank you for your kind wishes xx
  22. 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.
  23. 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).
  24. 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
  25. 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
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