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Any UK leakers out there? Advice on neuroradiologists needed

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Old 03-14-2014, 10:32 AM   #11
sowoo
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Sarah,
Do you have any updates on your fellow blogger who had the permanent porta-cath into her abdomen? Do you know how she is doing?

Sara
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Old 05-06-2014, 05:26 AM   #12
sarahmead1993
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Quote:
Originally Posted by sowoo View Post
Sarah,
Do you have any updates on your fellow blogger who had the permanent porta-cath into her abdomen? Do you know how she is doing?

Sara
Hi Sara,

My friend in the US has had a relatively successful op. She has had 2 infusions done since the op (they were done in hospital to make sure things went ok), one was good, the other infusion was done too quickly and she got little relief.

Sadly, because of the medical system in the US, her hospital will no longer do her infusions for her so I believe she is waiting to find a private nurse that her insurance will pay for who is willing to do her infusions at home,

I am due to have the epidural saline done here in the UK on 23rd May. They've never done it before so fingers crossed that it works and I get some relief!

Best wishes
Sarah
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Old 10-25-2014, 06:38 AM   #13
shazhaz
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Default Another CSF leaker!!

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Originally Posted by hemyinspain View Post
Hi
I have posted on here before some time ago and I thought i would try again.
I am desperately searching for any private or NHS neuroradiologists in the UK that deal with many leakers and are excellent in carrying out and reading CT myelograms.
I now am at the point where I do not have any consultant anywhere in the UK helping me and am fighting to get a referral to the states to see Dr Linda Gray through the Exceptional Treatments Panel of the NHS.
On the other hand if I can get a CT myelogram done here and get the test results to her to read then i will have yet more of an arguement to state that the NHS are failing me miserably.
I suffer all day every day and by evening am suffering so much I cannot even find the words to describe it.
Laying down is my ownly relief and I am now 4 years into this!
I have been rejected by london, plymouth, bristol and do not know where else to go. I am also a member on csfleak and fb and bt in the same name and really would like to talk to other UK sufferers.
Thanks for reading
Sarah
Dear Sarah

My name is Lorna and I am writing to you on behalf of my daughter, Sharon, whose headaches, caused by a CSF leak, make it impossible for her to concentrate long enough to type this but they are HER words.

In 2004 and 2006, Sharon had two operations to fuse the lower part of her spine following 20 years of back pain caused by degenerating discs and bones. Although, initially, the operations were successful, the back and leg pain increased and in November 2011, Sharon had a neuro-stimulator implanted at Queens Hospital, London. She has experienced low CSF since the date of the implant. Although the stimulator initially helped with the back and leg pain, it ceased working on a change of battery from the original to a re-chargeable one. The stimulator was disconnected and the leads removed to allow for easier access for treatments/investigations regarding the low CSF. Since the implant Sharon has had severe head and neck pain, is unable to work, wears dark goggle-style glasses constantly (except when asleep) and is now spending more daytime in bed to try and lessen the head pain. Sharon takes a variety of prescribed medication and it was reassuring to know there was someone else who could only control the pain with oramorph. She has been under the care of the London hospital since 2008, initially under the pain management team with a view to having the stimulator implanted. She sees two other consultants, as well as Mr. Watkins. She has had Intracranial bolt monitoring, two blood patches and various other tests and treatments, none of which has located a leak, though all symptoms point to one.

She read, with great interest, that you were due to have an epidural saline procedure on 23rd May this year and would very much like to know how you got on and how you are.

With hope that your latest treatment has been a success.

Sharon
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Old 11-07-2014, 08:11 AM   #14
shazhaz
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Default Another UK CSF leaker under Mr Watkins

Quote:
Originally Posted by sarahmead1993 View Post
Hi Sara,

My friend in the US has had a relatively successful op. She has had 2 infusions done since the op (they were done in hospital to make sure things went ok), one was good, the other infusion was done too quickly and she got little relief.

Sadly, because of the medical system in the US, her hospital will no longer do her infusions for her so I believe she is waiting to find a private nurse that her insurance will pay for who is willing to do her infusions at home,

I am due to have the epidural saline done here in the UK on 23rd May. They've never done it before so fingers crossed that it works and I get some relief!

Best wishes
Sarah
Hi Sarah - This was originally posted to the wrong Sarah so apologies for that to you both.

My name is Lorna and I am writing to you on behalf of my daughter, Sharon, whose headaches, caused by a CSF leak, make it impossible for her to concentrate long enough to type this but they are HER words.

In 2004 and 2006, Sharon had two operations to fuse the lower part of her spine following 20 years of back pain caused by degenerating discs and bones. Although, initially, the operations were successful, the back and leg pain increased and in November 2011, Sharon had a neuro-stimulator implanted at Queens Hospital, London. She has experienced low CSF since the date of the implant. Although the stimulator initially helped with the back and leg pain, it ceased working on a change of battery from the original to a re-chargeable one. The stimulator was disconnected and the leads removed to allow for easier access for treatments/investigations regarding the low CSF. Since the implant Sharon has had severe head and neck pain, is unable to work, wears dark goggle-style glasses constantly (except when asleep) and is now spending more daytime in bed to try and lessen the head pain. Sharon takes a variety of prescribed medication and it was reassuring to know there was someone else who could only control the pain with oramorph. She has been under the care of the London hospital since 2008, initially under the pain management team with a view to having the stimulator implanted. She sees two other consultants, as well as Mr. Watkins. She has had Intracranial bolt monitoring, two blood patches and various other tests and treatments, none of which has located a leak, though all symptoms point to one.

She read, with great interest, that you were due to have an epidural saline procedure on 23rd May this year and would very much like to know how you got on and how you are.

With hope that your latest treatment has been a success.

Sharon
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