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  • Diehard's Avatar
    Today, 05:42 AM
    I am a 54 year old male who is considering having a SPC. Could anyone share their experiences, any complications? Thanks, Diehard
    0 replies | 4 view(s)
  • katie's Avatar
    Yesterday, 11:57 PM
    If I could offer one simple piece of advice ... avoid them at all costs! Back in 2000 I went to Disneyworld Florida with my boyfriend and my sister...
    6 replies | 363 view(s)
  • katie's Avatar
    Yesterday, 11:49 PM
    Hi all It's been a long time since I came on here. Since my last visit we became parents to a seven year old boy. He's now settled in fantastic...
    0 replies | 12 view(s)
  • Dodger67's Avatar
    05-23-2015, 11:08 AM
    Dodger67 replied to a thread Wheelchair parts denial in Equipment
    Would it work to just ask for the standard, and pay the difference out of pocket?
    1 replies | 36 view(s)
  • Crispy's Avatar
    05-22-2015, 07:38 PM
    Hello! My son Vincent (4 years old) is getting his first wheelchair. Our insurance denied the telescoping push handles and sidebars because they are...
    1 replies | 36 view(s)
  • jveprek's Avatar
    05-22-2015, 07:10 AM
    Welcome to the group! My daughter, Ramya, was born in India and I adopted her 2 years ago from Bangalore. She has spina bifida as well. I will be...
    5 replies | 433 view(s)
  • M A R K's Avatar
    05-21-2015, 03:34 PM
    M A R K created a blog entry Mark's Blog in M A R K
    Had a phone call this afternoon from the Community Physio people who, despite saying there was a waiting list, have now given me an appointment for...
    0 replies | 106 view(s)
  • M A R K's Avatar
    05-21-2015, 12:56 PM
    M A R K created a blog entry Mark's Blog in M A R K
    Have done some more chasing up of physio today and rang the Consultant's secretary to inform her of goings on. She said she would see what she could...
    0 replies | 140 view(s)
  • M A R K's Avatar
    05-21-2015, 10:01 AM
    M A R K commented on blog entry Mark's Blog in M A R K
    I don't think the NHS would allow that. I should be receiving out-patient physio.
    2 replies | 857 view(s)
  • Tigerle's Avatar
    05-20-2015, 07:54 PM
    Tigerle commented on blog entry Mark's Blog in M A R K
    I am so sorry for this endless round of frustration! Can you threaten them that you will check yourself into the hospital again, if things don't get...
    2 replies | 857 view(s)
  • Tigerle's Avatar
    05-20-2015, 07:50 PM
    Welcome! I have a little boy with SB so no personal info with tethered cord at your age, but congrats on how well you've been doing so far! Can you...
    3 replies | 193 view(s)
  • LisaJoy's Avatar
    05-19-2015, 08:29 PM
    Sorry I'm behind! Tigerie's info is fantastic. I'll just add a bit on the split cord. When they operated on her did they check for and remove any...
    3 replies | 373 view(s)
  • LisaJoy's Avatar
    05-19-2015, 07:54 PM
    Jellolegs -- have you been to NYC? I've been there and to London as well, and my impression is that they are similar (NYC probably a little better...
    2 replies | 218 view(s)
  • LisaJoy's Avatar
    05-19-2015, 07:42 PM
    Hi! I'm 51, and have lipomyelomeningocele and split cord malformation. I've had two surgeries as an adult for tethered cord. I agree with Dodger that...
    3 replies | 193 view(s)
  • M A R K's Avatar
    05-19-2015, 03:46 PM
    M A R K created a blog entry Mark's Blog in M A R K
    Had a phone call this morning from the physiotherapist who I should have been seeing yesterday, to say that there was some sort of mix up. To me,...
    0 replies | 410 view(s)
  • Janeyloo's Avatar
    05-19-2015, 07:41 AM
    Thanks Del73 :0)
    6 replies | 554 view(s)
  • M A R K's Avatar
    05-18-2015, 02:09 PM
    M A R K created a blog entry Mark's Blog in M A R K
    Well physio appointment has been cancelled. The ambulance transport failed to show up, but they hadn't been in communication with me, so I was still...
    2 replies | 857 view(s)
  • M A R K's Avatar
    05-18-2015, 12:37 PM
    M A R K created a blog entry Mark's Blog in M A R K
    Well today was supposed to be the first day for my physiotherapy, and nearly an hour after the appointment time, I have not yet been picked up by...
    0 replies | 639 view(s)
  • M A R K's Avatar
    05-18-2015, 10:02 AM
    M A R K commented on blog entry Mark's Blog in M A R K
    I told the current carers about my concerns, and the carer that I am closest to has re-assured me that I wont be left with nothing. There is another...
    2 replies | 212 view(s)
  • Dodger67's Avatar
    05-18-2015, 06:44 AM
    Dodger67 commented on blog entry Mark's Blog in M A R K
    Ouch! the uncertainty must be absolutely horrible!
    2 replies | 212 view(s)
  • Dodger67's Avatar
    05-17-2015, 09:32 PM
    From your description it seems you have lipomeningocele, with your cord tangled up in some fatty tissue.Tethered cord can cause problems at any age,...
    3 replies | 193 view(s)
  • M A R K's Avatar
    05-17-2015, 12:25 PM
    M A R K created a blog entry Mark's Blog in M A R K
    Had a bad night. Have been starting to panic a bit about the fact that the team of carers are due to finish this coming Thursday, as they usually...
    2 replies | 212 view(s)
  • M A R K's Avatar
    05-16-2015, 06:18 PM
    M A R K created a blog entry Mark's Blog in M A R K
    Had a better night last night, thanks to finding out I can take Codeine up to 4 times in a 24 hour period. Only trouble is, it makes me drowsy, so...
    0 replies | 55 view(s)
  • marineBLU28's Avatar
    05-15-2015, 05:09 PM
    Hi I am a 52 year old woman with Spina Bifida I'm not sure which type from what I can remember when I was born there was a very thin layer of skin...
    3 replies | 193 view(s)
  • M A R K's Avatar
    05-15-2015, 02:04 PM
    M A R K created a blog entry Mark's Blog in M A R K
    Woke up at 5am with pain in hand, shoulder and back of upper arm. I took a Codeine tablet when I was ready to settle down last night, as that help...
    0 replies | 812 view(s)
  • M A R K's Avatar
    05-14-2015, 05:23 PM
    M A R K created a blog entry Mark's Blog in M A R K
    I'm already learning that without the support of the sling, my arm is getting pain. I had a 2 and a half hour sleep on th bed, as I didn't sleep...
    0 replies | 142 view(s)
  • M A R K's Avatar
    05-14-2015, 11:28 AM
    M A R K created a blog entry Mark's Blog in M A R K
    The sling came off this morning. I have to adhere to the rule of 'strictly no weight bearing' initially. Have had to contact the Consultant's...
    0 replies | 100 view(s)
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