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Super Mario

Super Moderators
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Super Mario last won the day on July 11

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About Super Mario

  • Rank
    Super Moderator
  • Birthday 11/08/1949

Profile Information

  • Gender
    Female
  • Location
    N Derbyshire

Converted

  • Location
    North Derbyshire
  • Interests
    Family including grandchildren, my doggy, voluntary work, keeping busy, busy, busy. Foreign travel
  • Occupation
    Lady of Leisure
  • SAH/Stroke Date
    SAH 4th February 2004

Recent Profile Visitors

3,389 profile views
  1. Hi Matthew, great replies above. Has the need for the naps been consistent since you SAH or has it diminished then come back with a vengeance? If it has reappeared more than what it had settled to then I suggest you get the need to nap more frequently than you did investigated. It is so easy to blame the SAH for everything that happens later and that is not always the case.
  2. 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.
  3. 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?
  4. 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.
  5. 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.
  6. Gem, my sincere condolences to you and your family at this difficult time.
  7. 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.
  8. 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.
  9. 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
  10. 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)
  11. Sarah, I hope you get all the answers to your questions tomorrow and that your worries/concerns are alleviated.
  12. 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)
  13. 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.
  14. 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
  15. 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.
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