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- Yesterday
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Hi Lynne, I'm sorry you have to deal with this type of thing. You need to keep pestering them ALL the time. It's so difficult. This isn't about you - it's about them. Basically, the NHS is crippled with coping with COVID-19 and struggles through with the budget constraints. Currently they have people on furlough and closed procedures. My husband is waiting for a hip operation, due on 10th March - despite pen leg on the day - and it can't be scheduled. We don't want to get in the way of other procedures, but the budget management started in 2018, not in 2020, with my own SAH in 2019 causing further delays. Where you encounter a clear block, it is awful (I mean really awful) then a private appointment can help. This got me driving again, and it got my sister to have her cancer removed, where there was a lacking of consultants. I am the last person who would want to recommend this, but it can help. The minimum is that you need to continue with complaining and chasing on any follow-up. The NHS process allows for management of complaints and budgets, not management of problems. The only way it really works effectively is with emergencies. You need to keep pressing with anything where you are not being helped. Push where your treatment can be progressed and where it can be done, with the right timing. Fiona x
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Veronica's post is so true - relating to my own condition. It's quite amazing. Thank you!!
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- Last week
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Hi Kyle, welcome to BTG and thanks for recounting your story. I too had an NASAH with hydrocephalus as an added complication. Made it out of hospital after just over 2 weeks but I was lucky that it was not during Covid and my family were able to visit the whole time. However my friends husband had what sounds like a very similar experience to you and he spent 3 weeks with no visitors. He appears to be making a great recovery. Must have been very worrying for your family and lonely for you. Mind you if you were anything like me you probably didn't notice much of what was going on - I was asleep most of the time! Glad to hear you are making a good recovery with just a few blips. This is to be expected and will be made worse if you do too much. I think the problem is that as you feel better you do more which can then lead to being exhausted. Best advice I can give you is take everything slowly and leave plenty of time for rest periods. My bleed was over 5 years ago and even now if I push too hard I know about it. Take it easy, be kind to yourself, hope your recovery continues well. Clare xx
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Hi Kyle, Welcome to BTG...so happpy you found this site...I felt so thankful to find them after my own SAH and vasospasm...You sound like you are making good progress, you are still in the early days of recovery...I know this is unlike any other illness I have had, thinking that when you have some good days you are getting past it...I have found it to be slow...steady, but slow... Sometimes I see the best progress when I look back...I too had a small SAH and a severe vasospasm. The vasospasm was the worst of my event, sending me back to the hospital, intensive care and rehab....for weeks I thought I had another SAH...everything took time to sort out for me...I am 3 years 2 months post and much better, improvement each year and I am a good deal older than you, 64 when I had mine... Kyle, your story struck me with your feeling isolated when you had your event...so very frightening, so happy your family was there when you got to the top of the stairs... The Covid situation is making it all so much harder for everyone entering the hospital. I work at a hospital, retiring soon, and it makes us so sad our patients can't have their loved ones with them.. We have loosed it a bit but it is still no where near what it was as we welcomed family members... My thoughts and prayers to you and yours as you continue ... xx Jean
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Thanks for the responses and the support. To give more context about my particular SAH here are the finer details: As a result of COVID-19, I found myself working from home while my two school aged sons were at home trying to home school (7 year old and 10 year old). I was wrapping up a teleconference for work, when suddenly my neck became very stiff and it felt like I got hit in the back of the head with a hammer. I lost my hearing momentarily. I made it about 4 steps and fell to my knee. I then realized I was in serious trouble. As a result of l being on a teleconference, I had locked the door that led to my basement where I was, in an effort to keep me sons from disturbing my call. I realized no one was going to know what was going on, and I needed help. I made it to the flight of stairs and crawled up 15 stairs and unlocked the door, and saw my wife and two sons standing there. I never once thought about calling for help on my telephone from downstairs. When I saw my sons faces, I knew I couldn’t let them see me like this, so I told my wife to call the ambulance and I crawled up another flight of steps to my bedroom. By this time, I was soaked in sweat and and in a ton of pain. The paramedics arrived and quickly took me to the hospital, despite all my vitals being relatively normal. Once I was in the Emergency Room they quickly did a CT scan and saw the blood on my brain. Because of the immense pain, they gave me morphine through an IV, but it did not offer any relief. The decision was made to transfer me to another hospital that specializes in brain trauma/strokes. Once I arrived at the new hospital, I was placed in Intensive Care for the next 9 days. As a side note, that I later found out, I was the only non-COVID-19 patient on that entire floor and in ICU. However, I was blessed to make it out of my 9 day stay without getting COVID. The neurosurgeon advised me that I would normally stay in the hospital a bit longer, but he wanted me to go home before I caught COVID. My pain had to be controlled with Fentanyl while in the hospital, since the morphine did nothing for the pain. After 5 days, I was able to control pain through non-IV meds (no more Fentanyl). I did experience mild vasospasims on days 5 through 8, but again they were controlled through medication. After, all the testing, my final diagnosis was a NASAH. I am very fortunate on all accounts! From being able to get help, to not getting COVID, to having a NASAH that didn’t require coiling or a clip. I would say that the most frustrating aspect on my road to recovery is that once I have a few good days and think I am all better, I have a really rough day (bad headaches). It looks like from other’s experience, this is a fairly common struggle. I will also add, that in these very unusual and challenging times. COVID has definitely thrown a curveball to anyone that has recently gone through any type of SAH. From no family being able to visit in the hospital, to virtual doctor appointments and everything in between. I am just very blessed to have found this site and hopefully my experiences can provide some reassurance to someone that may have just experienced a SAH during these unique times. I am blessed in so many ways and do have a whole new appreciate for life! Tomorrow is definitely not promised, so make the most of today! Thanks for all your support! Kyle
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Hi Kyle A very warm welcome to BTG. You will find a wealth of helpful information and caring support here. Feel free to also join in the daily banter in the Green Room. https://web.behindthegray.net/forum/9-the-green-room/ We look forward to hearing more from you. Take care Tina
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Tania Vincent is right that you should keep your hopes up for an improvement in your husbands vision. When you mentioned Hemianopia I remembered that the govt website has a lot of information that can help with understanding the accepted levels of eyesight that are necessary to have a driving licence. Here's a link.... https://www.gov.uk/guidance/visual-disorders-assessing-fitness-to-drive It may be that you have already found this but it is the go to place for information and I think it would be fair to say that Hemianopia (being 'blindness over half the field of vision) is one of those visual defects which might preclude him from getting his licence back. This does not mean that his vision wont improve but it is worth bearing in mind that the DVLA's starting position is that Hemianopia is not acceptable. With a little searching you will find (I think on the quadrantanopia thread here) attachments to my comments that show the esterman test results I had at Specsavers and with a consultant opthalmologist at my local hospital. The results show the areas where I had no vision and these were described as homonymous quadrantanopia. If you have quadrantanopia where the centre of vision seems reasonable then I think this is one condition where they will consider the 'exceptional circumstance' rules, of which I wrote earlier. A little research will help manage expectations and perhaps give you some comfort that things can move forward but if he has only half his vision then I think some improvement is required before moving forward. I hope the second test goes well next month. Keep us informed! Johnnie.
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Hi Kyle Welcome to BTG - yes, everything you describe is very common after SAH and, for some, does get better with time. Let us know more about yourself and the circumstances of your SAH - it's not just that we're nosy it helps us get an overall picture of you and your recovery - and helps newbies when they join to relate their circumstances and recovery.
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Hi All, I just found BTG. What a great chat room! Thank you everyone for sharing your experiences! I had my SAH on April 21, 2020 (4 days before my 42nd birthday). I am experiencing many of the same symptoms that are discussed here. Headaches, neck pain (occasionally), cloudy short-term memory, dizziness & head pain when bending over. I do notice great benefit from staying hydrated and taking frequent walks. My head definitely tells me when I have over done it! Ah, stress definitively revs up the headaches. I am really trying to focus on managing stress! I still have very intense headaches several times a week, nausea, and of course anxiousness that I could be having another SAH every time I have a head pain. Very glad to have found BTG, and the opportunity to talk with people that actually understand the SAH recovery challenges. All my best to each of you! Kyle
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Hi Vincent, Thanks for your reply I am very grateful, the results from the eye test he did at the hospital have resulted in it looking like he has hemianopia ( he definitely doesn’t think so and so do I to be be honest as he can see everything in the bottom of his right eye ) Would this now be more difficult for him to apply to get it back after the year has passed ? We are due back in 4 weeks for another field test at the hospital as we requested another ( I think it was the shock ) I just want to be prepared and ready to try to help him with this. I’m sorry but I will probably be on here quite often asking for advice and what to do next as I have no idea, I don’t really rate his eye doctor, if I’m honest, as she was quite rude and offered no help at all. Thanks for any answers I really do appreciate it. Tania
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Worried, don’t know what to expect for mum
Swishy replied to Rebekah91's topic in Non-Aneurysm SAH or Perimesencephalic SAH
Hi Rebekah, I am so sorry to read about your mom...you are such a good daughter trying to reach out and understand what has happened...This is a wonderful support site. I too had a SAH and it is so scary, my daughter and sons didn't know what it was and it was just waiting and praying for them. As I improved and they were able to communicate with the doctors they understood it better. My heartfelt prayers are with you and your mom.... xx Jean -
Hi Tania, firstly, sorry to hear of your husband's stroke. I didn't reply initially as I knew that the excellent Johnnie would reply more comprehensively than I ever could. My eyesight slowly improved over the first couple of weeks following my stroke, but I am left with a deficit in peripheral vision. Like Johnnie I applied for exceptional case status, but it was a statutory requirement to wait a year since my stroke. Because of Covid19, everything seems to have come to a standstill at the DVLA, but I have been told verbally by the DVLA that I will be sent for a driving assessment. Please keep your husband's spirits up as a failure in the Esterman test is not necessarily the end of driving. Vincent
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Worried, don’t know what to expect for mum
Chris G replied to Rebekah91's topic in Non-Aneurysm SAH or Perimesencephalic SAH
HI Rebekah, So sorry to hear this has happened to your mum. As Clare mentioned, we can't give medical advice. There is a wealth of knowledge on here for you to review. Overall, a NASAH can have a variety of short and long term affects. I had mine over 4 years ago. Other than some headaches for a couple of years, and some memory loss, I am mostly back to my old self. Just as with Clare, I had an EV to release pressure. I spent 10 days in the hospital and then returned home. The good news is, though the cause of NASAH is unknown, statistics show that the likelihood of having another one is no greater than anyone else. There is some debate on whether a NASAH is a "stroke", and there is a whole thread you can read on if it you wish. I send best wishes for you and your mum. Chris -
Worried, don’t know what to expect for mum
ClareM replied to Rebekah91's topic in Non-Aneurysm SAH or Perimesencephalic SAH
No worries Rebekah it's a stressful time. Everyone googles but the advice we always gave our patients in the hospital I worked at was stick to NHS websites or those of charities associated with the diagnosis. 'Headway' and 'Brain and Spine' are good sources of info. The fact they are sending her back to a closer hospital sounds like positive news. Yes a subarachnoid haemorrhage is classified as a stroke. Take good care Clare xx -
Thank you so much for replying. I’m glad you are ok. I think I did the worse thing and googled it, as I never even heard of it before and all I could see was the worst case scenarios. And yes not being able to see her is making me anxious mess. I just want her back so I can look after her. Is this classed as a stroke? They aren’t operating, and sending her back to a closer hospital which is good. i think I’m just being inpatient and wanting her well again ASAP. xx -
Worried, don’t know what to expect for mum
ClareM replied to Rebekah91's topic in Non-Aneurysm SAH or Perimesencephalic SAH
Hi Rebekah A very scary and uncertain time for you. We can't give medical advice on the site but can tell you about our own experiences. My bleed was a NASAH with the complication of Hydrocephalus. I was in hospital for 2 weeks and remember very little of that period. I was in pain quite a lot of the time with headaches but this was managed with painkillers. Hopefully as mum was seen early in hospital she will recover, as there does not appear to be an aneurysm no surgery should be required unless she develops Hydrocephalus and needs a drain as I did. Have a good look through the posts in the Non-aneurysmal section of the site and read others experiences. However what you need to remember is that everyone is different and their stories vary. It will depend on how alert she is as to when you may be able to speak to her. My husband and family were with me all the time and say I was talking after a few days - however a lot of it was rubbish and I slept most of the time. I presume that due to Covid you are unable to visit? My friends husband had a NASAH in early April this year, she was unable to see him while in hospital but was able to skype call him - the hospital helped with this. He was able to communicate after a few days and has made a remarkable recovery with virtually no deficits, a very lucky man! Feel free to personal message via the site me if you would like more help. Just keep strong, look after yourself and be prepared to give Mum lots of support when she comes home. Be thinking of you. Clare xx -
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Hi there I’m hoping to get some insight into NASAH. My mum called an ambulance yesterday morning at 830am, was confirmed to be a bleed on the brain. She was transferred to a specialist hospital to undergo more scans, which revealed NASAH-which is good news I hope? Its very early on I know but I have no idea what to expect. Is it in her favour to pull through? Have they caught it at right time? I called this evening to check how she is and she’s still in a lot of pain, and confused/drowsy etc. Is this to be expected? When will she start to improve so I can talk to her? Or her symptoms to start going? Thank you for reading, and thanks for any advice you can give. rebekah
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To be honest Tania, I don't have a definitive answer as the only people that can make that decision is the DVLA. They must be advised when someone has a stroke as there is a requirement not to drive for a certain period (I think it may be three months). Once advised they will send him for a field of vision (Esterman) test at a chosen opticians (most people go to their local Specsavers). The DVLA pay for the test and you will not get a decision until they have received the test results from the optician. The optician will not give you an answer as to whether the result if a positive one as it is not their call. Once the DVLA have the test results they will write to you (this may take several weeks but I got mine very quickly asking for my licence to be sent to them and confirmation that I couldn't drive for a minimum of one year but they did suggest that I could get my licence back if I passed all criteria in the 'exceptional circumstances' rules (see my earlier post in this thread). I feel for your husband. Driving is my passion and I love my car. I now enjoy it again and travel abroad often to enjoy the mountain passes all over Europe. I stayed confident, once I had that letter from the DVLA but depending on the Esterman test results it is not a 'given' that he will be considered for a further review unless he can show his eyesight has significantly improved. I don't know what results he got but If he has been told by an medical expert that he must not drive then he must not drive. Please come back when you have dealt with the DVLA and let us know how he gets on. We may be able to shed more light then. Call them and explain your situation. They are very helpful. All the best and stay positive. It was what kept me going! JM
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Hi Johnnie, Thank you so much for your reply. It was the hospital and his occupational therapist that have arranged the appointment for him, as she was hoping to work with him on the vision loss for driving but with what the lady that did the test is saying I know that won’t happen now. The OT wanted to send him for a driving assessment but has been told 'no' from hospital as the loss of vision is quite severe. We just don’t know where to turn or what to do, does eyesight get better ? Can you do anything to help it ? Is this really the end for his driving ? Can he ever try to get it back ? Sorry for all the questions I just feel helpless for him, Thanks again, Tania
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I think I was still healing 2.5yrs and at the 3yr mark inprovements were still happening if not that noteasable Things often seem more in Black and white now to me, (maybe not a good choice of words for these days we seem to find ourselves in) Take care, stay-safe..
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Hi Tania So sorry to hear about your husband. It's always a bit of a shock when we lose our freedom to drive. It's not the end of the story though so please try to hold on to some hope. We need to know a lot more yet so perhaps you could tell us why he went for the field of vision test. Was it requested by the DVLA? If it was then the optician (presumably Specsavers or some such company?) will send their findings to DVLA and they will then write to him with what happens next. The first thing they'll do is to ask for his licence back but they could also tell him that he could be considered under 'exceptoinal circumstances' to regain his licence. There are copies of these letters in this thread (see my post of 29th August 2019 above). If he gets this letter, there is a good chance that he will be fine but it will definitely take some time. It took me 20 months to get mine back. Let us know what happens and we can offer more advice as the process unfolds. I must caution you that if the DVLA say his eyesight (visual defect) is too severe, then there is a chance he will not get his licence back. There is nothing that can be done about this. It is the way it is. I wish him good luck. Make sure you keep us up to date. JM
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Thank you Veronica and Macca. I like Veronica's idea of writing. In fact, before I was working from home due to COVID-19, we both did this a lot. I wake up much earlier than my wife, and would often leave notes for her to read after I was at work. Sometimes she'd write to me after I was in bed. And yes, a balance of love notes and serious communication is important.
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Good morning , I have just come across this and decided to sign up just to try and get some advice, my husband suffered several strokes in January and has just been for his first field test yesterday which he has failed and was told that was it basically! He didn’t pass what was needed to be able to drive and this has absolutely broken him. He has lost quite a bit of vision in the top of his right eye can anyone at all please tell me where we go from here? What will happen next ? I feel with what’s going on at the moment “Covid” we were in and out in no time. We were in complete shock to be honest, so didn’t ask enough questions, although I did ask about glasses or prism and was told these wouldn’t help. He is absolutely devastated at the thought of never driving again. Please any help or advice would be appreciated. I’m in the Uk Thank you Tania.
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Long time no speak everyone. Well its July 2020 and since my last message, the frequency of those mild, foggy heachaches has returned to normal. i.e. rarely. In fact, apart from the weight gain and potential damage to my liver from lockdown... I am doing fine. Whilst Covid-19 does not appear to present any increased risk to NASAH survivors (I'm perimesencephalic FYI) I am not taking any chances. Stay safe everyone! -
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Hi all I thought I'd give an update as I'm getting quite frustrated. I had the video consultation with the surgeon in Cardiff which I felt went well with agreement that I would be progressed now that things are opening up again. He said that I should go in just the once, no pre op appointment etc and could expect a call over the next week regarding dates. After waiting two weeks I send him an apologetic email (I didn't want to keep bothering him) asking when I could expect this call as nothing had happened. He sent me a really long email back saying he hadn't said that at all, that I would have to go for an outpatients appointment to be measured for the catheter and that I had clearly got it wrong and that he hadn't said that I would be going in fairly soon. I even made him repeat on the call that I could expect to go in over the next 4-6 weeks. We're now 4 weeks later. He made me feel really stupid, like I'd got it totally wrong. I wrote stuff down during the call so I knew I hadn't but the dismissive manner made me feel like I was again left hanging. He did reassure me though that if anything happened they were fully able to deal with the fallout! Well that was reassuring - not. So, now I'm back to square one. I considered phoning PAL's but haven't. I can't quite bring myself to speak to the GP, I feel now that no one really cares about this and I just have to live with it. Is anyone else experiencing this sort of thing? Thanks Lynne
