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Gemma B-B

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Everything posted by Gemma B-B

  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
  16. Welcome to BTG. I am sorry you have found yourself in this situation. I have a lot of sympathy for you. I always say to people that all this was worse on my husband than it was on me as I remember very little of it whereas he had to experience all of it and make all the decisions about my care. I had my haemorrhage 19 months ago. I ended up in a coma and then had an EVD fitted and then a shunt. During my time in the hospital I had a lot of issues orientating myself - although I knew who my husband and parents were I got a lot of other things incorrect, for example I thought the year was 1998. My family had to keep going over things with me to help me get them straight. I now think that this confusion was not just a result of the haemorrhage but actually all the medication I was on. This had pretty much corrected itself by the time I came out of hospital (I was in for almost 4 weeks). Coming out of hospital also helped me as well as I was back amongst familiar surroundings and a routine. In terms of my memory now - I still have memory issues. I have sat neuro-psychological tests and spent a year in rehab. There I was told that my memory issues were a deficit in my attentional memory. This means that I don't actually forget things what actually tends to happen is that my brain does not pay full attention to things and therefore I do not make a memory of it. As Skippy said above I tend to find now that I retain certain bits of information but not others - for example I tend to remember information people have told me but not who has told me it. Strategies such as writing things down and using reminders and calendars all help. I hope your husband continues to make progress. Keep supporting him and going over things with him and hopefully over time things will start improve. Take care, Gemma
  17. Dear Jan, That is a tough decision - you have my sympathy. It is always difficult when faced with decisions about something like this. As odd as it is it makes me greatful that my brain haemorrhage left me in a coma as then it was not me who made the decisions about surgery - it was my husband. To be fair though as others have said on here that was a tough decision for him, however at the time it was my only chance for survival so he had to go for it regardless of risk. Same when I had my shunt fitted a few weeks later. More recently I too have faced the prospect of more surgery. This for me has been in the form of spine surgery to decompress the arachnoid cysts that are pushing on my spinal cord. These formed as a result of the haemorrhage and have left me with loss of feeling/walking issues etc. When I first saw the spinal specialist he had only seen my scans and from them thought I was going to need surgery almost immediately. After meeting me he agreed to wait on this. Partly as I was still walking around with the aid of a stick and also as I had just taken a year off work after the haemorrhage and had been back at work for less than two months. I went in for more scans etc. and last saw my spinal surgeon in June. We both agreed to go for conservative management i.e. monitoring over the next few years. This was because my scans had not shown the cysts were any worse and my walking etc. had not deteriorated. I am happy with the decision for conservative management. The spine surgery carried a lot of risks - those in terms of the surgery itself and the potential for me to lose more feeling or even ending up paralysed. I also have additional risk due to my heart condition and I had my brain haemorrhage in heart surgery, which makes me somewhat nervous of surgery! There are also risks to leaving it though. I may get suddenly worse and if I do I might lose the ability to walk completely. Any spine surgery I have is unlikely to make my any better so the risk I run by doing this is that my walking will deteriorate and then even if I have the spine surgery it is unlikely I will gain back the ability to walk. I have decided to take this risk though. In terms of advice for you I am not sure what to advise. I would probably try to weigh up and pros and cons for each option and think about if you can live with the potential risk of rupture or if you would rather have the surgery and run the risks with that. It is a very tricky choice though. I have also been told that I need an angiogram so they can have a check on my brain and try to work out the cause of my brain haemorrhage. Once again I was fairly reticent to have this done due to the risk of stroke and also as I get somewhat tired of the amount of time I spend in the hospital. I saw my neurosurgeon though and he spoke to me about what they want to look for (an AVM) and what my risks were if I had one and it was not found (quite a high risk of another brain haemorrhage as it turns out). In this case I decided to have the angiogram done even with the risks attached. Take care, Gemma
  18. Good luck with it all Jan. In terms of questions maybe: How does the aneurysm size compare with previous scans - has there been any noticeable change? If yes - is it significant and what are the next steps? If no - what is the plan going forth in terms of management and on-going monitoring? I would also suggest writing down your consultant's responses in the appointment for review later. If someone is going with you then they could do this so you are free to chat - my husband does this for me. Hope it all goes well and you get the answers you want Gemma xx
  19. Hi Suzy, It is ok. When I first came on here it took me a while to get to grips with it all and post. I was useless on a computer at first (didn't help that I had forgotten all my passwords as well). The first few months after the bleed are always quite tough. I also do not really remember any of my stay in the hospital and when I started going to follow up appointments I still felt rather dazed. I started writing down the questions I wanted to ask them so that once I got there I could make sure I had asked everything I wanted to. I also took along my husband so that he could write down the responses for me to look over later (also meant I did not have to remember everything, which is useful as now I never remember everything!) If you have questions about your bleed in the coming months then I guess your GP would be the first port of call? They could then always get in touch with further specialists if needed. I would imagine the drain you had in was an EVD or something similar - this is where they make an incision in your skull and then drain off the excess fluid. I still have an indentation where mine was at the front of my skull. If you are able to come off that then you usually do not need a shunt. I had an EVD for about two weeks and could not come off it at all, hence the shunt. I don't remember any of this though so it was actually my husband and family who made that decision along with the specialists. There are others on here who had an EVD and never needed a shunt and also ones like me who then did have a shunt fitted. I guess it just depends on if the hydrocephalus rights itself or not. I am pretty sure I still have the hydrocephalus as I think I can hear the valve on my shunt when I sit up or lie down. I mentioned this to my neuro-surgeon and rather than laugh at me (which is what I thought would happen) he agreed and thought it was likely I was still shunt dependant based upon that and my scans. Coincidently, I am also a teacher. I teach secondary geography in a state school and also have a managerial role. I have spent the last year returning to work and have now settled on working 4 days a week for the next academic year with Wednesdays off (need the mid-week break). There is lots of good advice and things on here about returning to work when you are ready to do so. I guess the only thing I would say is that I found returning to work took a lot longer than I initially thought it would. Finally - the weepy and isolated feelings also sound familiar. Post-haemorrhage I would get upset at the slightest thing and wonder why. Adjusting to everything takes a lot of time and can be a tough journey. Whilst my friends and family have been excellent I think sometimes it is difficult for people to truly comprehend what it is like to have an event like this. That is one of the reasons I found coming on here useful - it is nice to 'chat' to others who have been through a similar experience. Take care, Gemma
  20. Hi Suzy and welcome to BTG. Yes, since they changed their opinion on my SAH and decided it was an intra-ventricular haemorrhage I have seen a couple of other doctors who have all been of a similar opinion - that it is mainly semantics and all of these types of brain haemorrhages are often connected anyway! From what I understand (although I could be wrong) as all the parts of the brain are inter-connected these names for haemorrhages are mainly to do with where the bleed originated. The intra-ventricular ones are ones which start in the ventricles and that is why they often lead to hydrocephalus. Obviously I now know my bleeding started there (they think from an artery or vein but they are also looking to see if I have an AVM currently as well) and then spread into the sub-arachnoid space as well, similar to a SAH, which is why they thought it was an SAH at first. As I have posted above though I have had a lot of appointments etc. since my haemorrhage to try and figure out the cause of my haemorrhage, mainly (I think) as I had it during surgery and due to my heart condition I am likely to require more surgery in the future (my medical records definitely have me down as an extremely risky patient!). I would guess that the 'Previous right intraparenchymal and intraventricular hemorrhage no longer seen' could be that the evidence for the bleed has cleared up - i.e. the blood has dissipated. This does occur over time, which is why they often do scans etc. a few months after the bleed. I am having an angiogram in October almost two years post-bleed and this is because they are hoping to be able to see more now the blood has gone and the swelling gone down. I would suggest speaking to your doctor about it to clear things up as it could be to do with something else. Based upon what you have said thus far am I right in assuming that they have not found a cause for your bleed? You also mention hydrocephalus - did you have to have an EVD or a shunt fitted (I ended up with an EVD and then a shunt in the end). Anyway - I will stop bombarding you with questions! Look forward to hearing more from you when you feel up to it. Gemma
  21. Hi Dory, Welcome to BTG. You have certainly been through a lot and that takes a while to come to grips with. Even now I am still coming to terms with everything and learning to deal with the adjustments and I have had months to do so. I had my haemorrhage whilst I was undergoing heart surgery for a congenital heart defect at the age of 27. I ended up in a coma and had an EVD fitted to reduce the pressure on the brain. Eventually this was changed to a permanent VP shunt as the hydrocephalus did not right itself. My neurosurgeons originally thought I had had a high grade SAH, however they have now said that I actually had an intra-ventricular haemorrhage (one within the brain) that spread into the sub-arachnoid space. I am still under these neuro-surgeons and have been told by them that I am definitely one of the lucky ones as the survival rate for the grade of brain haemorrhage I had is very low. I have also been told by the same ones that the side-effects I have experienced as a result of the haemorrhage are also to be expected. I am now 19 months down the line and although I know I am lucky to have survived this I have to admit that I have times when I don't feel it. My life is now quite different to what it was prior to my haemorrhage. I have returned to work, but now work part-time, I have only very recently (yesterday) had permission off th DVLA to drive again and due to the spinal damage I suffered as a result of the haemorrhage this will have to be a hand controlled car. The spinal damage also means that I now walk with a stick and have lost sensation from the mid-torso downwards so pretty much all day-to-day activities are more difficult than they were. The spinal issues may get worse so I may have to undergo spinal surgery at some point in the future. There is also, of course, the brain side of things were too much stimulation is an issue and my memory is rather diabolical. As other members on here have said things do get easier with time and you will find that there are many things you can do again, although they may be in different way. I am not going to lie - the journey post haemorrhage can be a rocky one with ups and downs but there are positives out there and there is definitely life (and a good one) post-SAH. In terms of travelling post-SAH. I have yet to go abroad (although that is partly due to the fact I have struggled to get insurance due to being on the waiting lists for various things) however many on here have. I have also been away in the UK and have managed that. My family were told to cancel our holiday at the time of my event and they chose not to and I was able to go on it (although I slept for a lot of it). I would recommend trying to get in touch with your consultant or a specialist nurse if you have one to see what their reasons are for the cancellation and if it is necessary. Take care, Gemma
  22. Thank you Jan - I remembered after I had posted on here that we had discussed work before. I blame my atrocious memory. I do really enjoy my work and it has been good to get some of it back. Although I have settled on four days for next year my school is aware that I might want to change that further. I do often wonder if three days would suit me better, but we shall see. I hope you get the results you want from your consultant and are able to start looking into various things. There have been some excellent suggestions on here. Take care, Gemma x
  23. Yes Sami, that is very true. My consultant has told me not to expect any improvement, however you never know. I also have variation on a day to day basis based upon my fatigue levels so over time some improvement might be possible. That would be nice I have been told that if I remain stable for 4 years then I ought to remain stable for life, so at the moment this is what I am hoping for. I am glad I have finally got my licence back Daffodil I have already sold my old car and am now in the process of trying to get a hand controlled car sorted. I have actually applied for a PIP and have my assessment on Thursday. In order to get motorbility I would have to score enough points on this assessment and I do not think I will manage to do so as on the new scoring system you have to be able to move only as few meters and at the moment I am managing more than this with my walking sticks, AFOs and lots of rest. I had citizen's advices help in completing the form and they were of the same opinion. We shall see though. If we have to self-fund it will take a little while to get it sorted due to costs etc. Still it is progress and for that I am grateful! Gemma x
  24. Hi Sami, I have rung the DVLA to ask this and they have said that in 3 years time they will see how I am doing and then make another decision then - they can't give my any indication of what that might be as it will depend on how I am at the time. They might re-issue a longer term licence if I seem to be stable and have been for a while or they might issue another 3 year one if it seems that I might still change in that time. I obviously knew that they would want to change my licence to say I can only drive a hand controlled vehicle, but I did not expect to only be issued a short-term licence. I know this is because my condition could still get worse in the next 3 years so I suppose it is a fair enough decision and I probably should have expected it. Gemma
  25. Hello all, As many of you are aware I have been waiting to hear back from the DVLA about my driving licence following my haemorrhage. Due to the fact I had an EVD and a shunt fitted I was banned from driving for 6 months. During this time I sent off my medical information to the DVLA. Following my haemorrhage I developed a rare side effect - which is to get spinal archnoiditis and arachnoid cysts from the hydrocephalus and the blood in my CS fluid. This has meant I have lost feeling from my mid-torso downwards, which has affected my mobility in my legs. In the process of getting my licence back I was sent for a medical and disability driving assessment. The result of these was that they thought I could drive again but it would have to be a hand controlled car due to the issues with my lower limbs as they did not think I could consistently and safely drive a normal car. There is also the chance that I will get worse and would therefore have to drive a hand controlled car anyway. All of this information was passed onto the DVLA and today I got their response. As expected they want to change my licence to reflect that I now need to drive a hand controlled car, which is fine. The other thing they have said is that they are only willing to issue my a 3 year short term licence due to the nature of my conditions. This means that in 3 years time I will have to be medically assessed again and then reapply for my licence. I was wondering if anyone else had experienced this post-SAH and what their experience was of it? Has anyone had this and then later on been able to get a long-term licence reinstated or have they remained on 3 year licences? From what I understand it is possible to go back to a 'normal' long-term licence if you remain stable. Thank you! Gemma
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