Has anyone had a Baclofen pump privately? Is it expensive? — Scope | Disability forum
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Has anyone had a Baclofen pump privately? Is it expensive?

shabbacakes
shabbacakes Member Posts: 4 Listener
Hi I'm new here. I have neurological disfunction of the Central Nervous System,  amongst a few other spinal conditions. As a result of this I have developed Spasticity in upper and lower limbs but my legs are worse. I paid privately to see a neurologist because of the long waiting list sure to the NHS being under so much pressure. He actually works for the NHS at Walton Neuro centre so has said he will refer me to the neuro rehab in there, but again they have said I could be waiting 4 months or more. 
My question is Has anyone had or know a Baclofen pump privately? If so was it expensive? 
Thanks
Shabbacakes

Comments

  • shabbacakes
    shabbacakes Member Posts: 4 Listener
    Could one of the admin staff please delete my post as I don't think anybody can help me thank you
  • Daniel_2021
    Daniel_2021 Member Posts: 56 Courageous
    Hi @shabbacakes,
    Do you have FND? If so I have that and oddly enough i'm being treated by Dr. Burness at Walton. I was there today regarding my spine and everywhere has the longest waiting times i've ever known.
    In turns of the pump i'll be honest I don't know, I had a procedure around 3 years ago at the Spire on Penny Lane, I was probably in theatre for an hour so nothing technical, that cost around £5k all in all, I was fortunate enough to have insurance at the time so they paid.
    If you have FND I'd be interested in talking about that a little more. I was only diagnosed in July, prior to that I had never heard of it.
    Lastly, next time you're in Walton if you haven't already have a look at the memorial tree, utterly beautiful.
    Thanks,
    Daniel 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,025 Disability Gamechanger
    Hi @shabbacakes -  & welcome to the community. I do so hope you don't think your post should be deleted as you feel no one can help you. Sometimes a member will post, but it can take time.
    As above, members may give their personal perspective. Trying to help a member here whose partner appeared to have the same neurological problems as our family, I tried to see where they could best be seen..... it was also the Walton Centre.
    Baclofen can indeed help some of those that have spasticity for a variety of reasons, but its use should be considered alongside your specialists or GP's views,  & dependent on your condition.
  • Tori_Scope
    Tori_Scope Posts: 6,620

    Scope community team

    I can see you've had some replies now @shabbacakes- would you still like for your post to be deleted?
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  • shabbacakes
    shabbacakes Member Posts: 4 Listener
    Daniel_2021 No I don't. I probably didn't explain fully. My 2nd lumbar spine operation was classed as failed spinal surgery as I had osteomyelitis afterwards which is an Infection in the spinal canal for which I was on intravenous antibiotics every day for 3 months.  They wouldn't do a fusion as they said the metal was high risk of another infection. So they left it to fuse for 2 years on its own. 
    It didn't fuse inline so left me with spondylothesis, kyphosis, and pinhole severe stenosis amongst other conditions. There are that many on my latest MRI scan that I struggle to remember them all! 
    So basically I now have Neurological disfunction of the Central Nervous System due to Spinal cord injury. All the symptoms are very much like MS and the same that the messages from the brain to body and vice versa don't get relayed properly. They go all haywire. The neurologist i seen privately said I'd benefit from the likes of Baclofen pump or Botox and epidural pump etc. These are through Walton neuro on the NHS but it's the wait time, so I was looking into going private. I found consultant yesterday in Spire Murrayfield that shows the baclofen pump so I'm just waiting on them to get back to me with a price 
  • shabbacakes
    shabbacakes Member Posts: 4 Listener
    @Tori_Scope
    Thanks for getting back to me.  Id like to keep it on thanks.  Sometimes my anxiety flares up and I feel like I'm being a nuisance so that's why I asked for it to be removed. Thank you
  • Daniel_2021
    Daniel_2021 Member Posts: 56 Courageous
    @shabbacakes I'm so sorry to hear you have all that, I had a spinal fusion earlier this year and they mentioned the consequences of an infection.
    Whilst in rehab a friend of mine with cerebral palsy had botox in his arms and legs, he'd had it a few times and said it hadn't made much of a difference. Now that's just him and one case so don't read too much into it, that was under a consultant called Dr. Osman, she was the head of our rehab unit but also works in Walton.
    I wish you all the luck with whatever option you chose, you have a great hospital in Walton and health professionals that truly care.
  • Tori_Scope
    Tori_Scope Posts: 6,620

    Scope community team

    No problem @shabbacakes :) You're certainly not being a nuisance. 
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