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Super Mario

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Everything posted by Super Mario

  1. I was told at my first clinic appointment after my SAH, that if I ever needed a MRI scan I needed to inform them of my shunt. Our local hospital can't reset shunts so for any MRI I have to go to a hospital that has a neuro dept and the facilities to check and reset my type of shunt. Initially, approx. 14 years ago, the procedure was to have a skull xray before the scan and then one afterwards to see if the setting had changed. The radiographer was very good and showed me the before and after films and yes it had moved. I then had to have it reset to the original setting which, at that time, meant getting my notes to check what the setting was initially. At a subsequent MRI there was no xray, just a nurse with a piece of equipment that read my shunt setting prior to the scan. She came back after the scan , checked it with her "toy" and it had moved again so she just reset to the original. Those checks and reset were actually done in the waiting room , so quick it was. Going off the shunt subject, I have permanent dizziness. Rightly or wrongly as I am not medically trained, I believe that my permanent dizziness was caused by the hydrocephalus and not the SAH. I didn't get rehab or I may have managed to conquer it at that time. Apparently physiotherapy can help. I now have coping strategies that I have learnt myself by trial and error that help. If Sean isn't having physio it may be a good idea to request it as the earlier it is put in place the more chance of success.
  2. Sean, I am another member of the shunt club, mine is also altered magnetically. I can't even remember having it fitted so I don't know if I had it reset in the early days. I have had later MRI's which have altered my shunt setting due to the magnetic field. It was just set again to the original setting. That is a very easy procedure which only takes a couple of minutes. As Daffodil says, it can take quite a while to get the correct setting for you, bit like trial and error. Have you ever thought of asking for a sedative prior to a MRI in the hope that it may help you to tolerate one?
  3. Welcome to BTG, although we don't give advice on Benefits there may be some members with recent experience of PIP, Age UK have experienced benefit advisors as does your local council or county council. Search for Welfare Rights Advisors on their websites. You could also try the Stroke Association or your local Law Centre if you have one. Online you could try youreable forums. Although not qualified advisors there is a certain chap on there that really knows his stuff and gives excellent advice. https://www.youreable.com/forums/forum.php In the first instance request a copy of the assessment report and the Decision Makers report. That way you know where the downfalls are.The key to a successful application for PIP is not to focus on the condition but how you are affected. There are descriptors in the Decision Makers handbook that have to be met. Key words are also looked for. Do not make the mistake of calling the assessor a liar or suchlike. That is irrelevant.. Please be aware that you have to apply for a Mandatory Consideration within 28 days of the date on the decision letter. Information can be sent later. A MC has to be done before you proceed to Tribunal. Things are taking so long with DWP due to circumstances so act asap. Another thing, the phone jockeys on the whole are poorly trained so may not give you the correct information. Hope this helps and the best of luck for your husband to get the award he is entitled too.
  4. Oh no Sarah, devastated by your news. My sincere condolences to you all. Win was a member of this forum who always brought a laugh and a smile to me, and her singing, well. She will most certainly be missed on here. God bless you all.
  5. Gem, my sincere condolences to you and your family at this difficult time.
  6. Matt, you have not in any way trivialised having a SAH. Share and vent any frustrations you may have on here and you will get plenty of support from our members.
  7. I relived the event for ages afterwards but in time the frequency got less. In fact, just over 16 years later, it still happens but very rarely. Think there must be a trigger but for the life of me can't identify what that trigger is.
  8. These are examples of v pillows on a UK site. https://www.dunelm.com/search?q=v+shaped+pillow&&msclkid=74751da8fa881d6fed6343f03244a502&gclid=CPC0g_Tj8-cCFdOFhQod61EKnQ&gclsrc=ds
  9. Sarah, I entirely agree with what Karen and Macca have posted. Don't let that 1 to 2% worry you, many have problems that pose a much higher risk. Stay positive and live your life to the full. (Not work, work and more work)
  10. Sarah, I hope you get all the answers to your questions tomorrow and that your worries/concerns are alleviated.
  11. Jenni, all those answers you want to know you must ask your consultant when you next see him. Write a list and take someone with you as a second pair of ears. I know it has been said before but you are very early on in your recovery and some things take loads of time to resolve themselves. Difficult as it is, stop wondering about events until you see someone who can give you answers. I know it is hard but please try not dwell on the "I wonders", try to adapt your life to your limitations, that may only be in the short term, no one knows how long for. As to your blurred vision but not the blind spots, I had blurred vision in one eye, so much so I was just about blind in that eye. There was a reason for it and a good eye surgeon corrected it although I am left with floaters that can be annoying at times. At least I have my sight back. As a conclusion I will tell you, that in my case, I now look on my SAH as a blessing in disguise. It gave me a good life other than all work and no play. Yes, I lost my sense of balance and have to use a frame BUT I have a wonderful life, doing just what I want to do when I want. Please try and stay positive. PS all those cuddles in front of the TV will mean as much to your daughter as being active with her. (I wish my mother had cuddled me)
  12. Sarah, at least you are nearer to getting an explanation. The spinal injuries unit at NGH goes hand in glove with Neurology at the H. BIL is attending both for his Parkinsons. Hope the week doesn't seem to last forever.
  13. I rang PALS for Sheffield Teaching Hospitals, didn't actually go to see them. It could probably just been the person you spoke to. https://www.sth.nhs.uk/patients/patient-services
  14. Sarah, as you know I am in the same boundary situation as you. I did use PALS for a similar reason as yourself at the same teaching hospital group and I did get a result, In my opinion you should at least give PALS a go.
  15. Sarah, not surprised you were in tears, What a shock and to say you haven't been contacted by the hospital is appalling. You do need to get back to see neurology asap for an explanation of everything. You do need to contact them for an urgent appointment, you can't be left on a knife's edge. I do wonder if that letter was not for your eyes only the GP's as they are allowed to withhold information that is thought to be detrimental. In your shoes I would be feeling exactly like you. The Hallamshire is notorious for messing appointments up and not sending for you, especially neurology. I had problems a few years ago and a secretary at my GP's had to threaten them with logging everything on my patient record in the end to get a result. Referral letter they said they hadn't got in spite of it being faxed several times and receipt received. It was miraculously found on a shelf after the threats.
  16. Jenni, as a suggestion, many shops, including supermarkets and shopping areas now have quiet times mainly geared up for the autistic, although not exclusively for them. Would it be worthwhile going with your daughter during those times. I always go to the supermarket early evening when it is much quieter as I cannot cope with crowds and noise easily. You may have to change your routine a little to suit yourself.
  17. For you to have those worries is only natural. I don't think there is anyone on this site who hasn't had those worries. Yes it is hard not to worry and regardless of what anyone says you will still worry. You should have peace of mind once the MRI is done and you get the results. Have you thought about asking your GP for counselling to help you over those worries so that you may be able to sleep? Sleep deprivation will not help your recovery. There is no shame in counselling, we have many members who have taken the opportunity of it and benefitted.
  18. Jenni, when I go shopping I tend to go in an evening when the supermarket is fairly quiet as I get really disorientated in crowded places. You may well be able to cope better at quiet times. As for the film, I still can't cope with noise and watching movement, makes me feel very sickly. I have been to see films with the teenagers I used to mentor. I schooled myself to switch off to the noise and movement, almost like being asleep but also aware if the person I had taken made a move they shouldn't. Took some practice to do that. In fact now, I never watch television for the same reasons. Not the same but my SAH left me virtually blind in my left eye. Turns out it was Terson's Syndrome which was caused by the blood looking for an escape and forced its way down my optic nerve. When the blood dissipated it left behind debris, hence the sight loss. I did get it corrected by an eye surgeon who literally took my eye to pieces, cleared the debris away and gave me back my sight in that eye. Sounds awful but it wasn't and I had that done with a local anaesthetic. Without raising your hopes the blind spots may be down to something that can easily corrected. January will soon come round. Meanwhile, listen to your body and do what it tells you, nap when you have to and do not force yourself to overdo it. Recovery is all about taking tiny steps forward with the occasional step backwards if you try to do too much. Very slowly and steady is the way to go. Jenni, suffering from a SAH does give you a completely different outlook on life. In many respects I have found my new life to be preferable to the one I had formerly even though it left me with little sense of balance.
  19. Congratulations on 5 years. Good to hear how much progress you have made. Enjoy retirement and the volunteering.
  20. Louise, many congratulations for your 20 years. You have come so far over that time.
  21. I have a shunt but I can't remember having it fitted or the recovery time as it was just after my SAH, whilst I was still in hospital. I have never had a problem with it and only had it reset after MRIs, because they can alter the setting on the type I have fitted.
  22. Sally, to be honest, Dr Google is not your best friend. The answers are not specific to you and cover a very wide range. Tempting as it may be to consult Dr Google, don't. Wait until you have a face to face consultation.
  23. Keep pushing the admin team to keep it foremost in their minds. I took them about 6 weeks to get me an appointment. Another ploy could be for you to contact PALS at your treating hospital, they will chase it up for you and are successful.
  24. There should be someone at your GP's who deals with appointments. Ring them again and ask for them to chase it up. I had a similar problem and the person at the GP's who deals with the above told the department that she was putting it all on my notes and hey presto, I got an appointment for the following week. You will have to keep pushing.
  25. Welcome to BTG Matt75. Don't know about the lack of sleep but for the headaches it is advisable to keep well hydrated ie drink lots of water. It really does help. It is very early days in your partner's recovery as recovery times can go on for months or even years depending on the individual and severity of the bleeds. Rest is important so to take naps when fatigue occurs is imperative regardless of the time of day, do not try to fight it.
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