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Old 01-28-2014, 06:28 PM
sarahmead1993 sarahmead1993 is offline
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Join Date: Nov 2012
Location: Cambridge, U.K.
Posts: 3
10 yr Member
sarahmead1993 sarahmead1993 is offline
New Member
 
Join Date: Nov 2012
Location: Cambridge, U.K.
Posts: 3
10 yr Member
Default Ventriculopleural Shunt

Quote:
Originally Posted by alieyers View Post
Hi Sarah,
So sorry about taking over half a year to reply. I've only just remembered about this site.
What the name of your surgeon at Queens called? Mr Watkins performed surgery on me and installed my shunt. My shunt is not effectively turned on at present as it was draining too much fluid when I caught MRSA on another leak repair area.
How is your shunt performing? Has it made any differences to your condition?

I've not heard of the dura reduction operation that Dr S does. Where did you hear about this and how successful has it been?

I've added you as a friend as I hope we can continue talking. Although immensely distressing, it's also very interesting to talk to somebody with the same underlying condition as me.

Ali
Hi Ali, I've also lost track of all the sites I've visited so have only just seen your reply! I'll give you my history as briefly as possible, hopefully there might be something there that you find helpful!!

I have a long history of back and knee problems for which I've had lots of operations. I was diagnosed with EDS III in 2012 . It seems that the operations on the base of my spine might possibly have caused part of the problem along with a lax / stretchy dura due to the EDS III. I was also diagnosed with mild POTS in 2012 - seems they all like to come together!

BTW I'm 46, married and have 3 children (all EDSIII)

I've had a chronic, orthostatic headache for 4 years and spend 18+ hrs in bed most days.

The surgeons in London have not been able to find a leak (I've had CT Myelogram & MRIs) - my surgeon is also Lawrence Watkins and he says that my Intracranial Bolt Monitoring results and Lumbar infusion studies show that I don't have a leak, but that I definitely don't have enough CSF to fill up my system, perhaps due to having a lax dura which means the csf can pool at the base of my spine when I stand up, even though the results show that my body is creating more CSF than is 'normal'.

In terms of treatment, I've had 3 x caffeine infusions, DHE infusion, botox in head & neck, 3 x blood patches, occipital nerve blocks and lots of medication. Nothing has helped and at the moment I take oxycontin and oramorph just to cope with the pain.

In January 2013 I had a ventriculopleural shunt with an orthostatic valve fitted in the hope that if it drained off a small amount of CSF off while I was lying down my brain would start to produce an excess that would 'top me up' when I stood up. I had no luck with this and Mr Watkins turned off the valve last November. I imagine this is the same thing that he tried on you?

When I saw him in November, I talked to Mr Watkins about the epidural saline infusion that Dr Schievink's is doing in the US - the idea is that unlike a blood patch that just finds a hole and 'seals' it, the saline fills up the epidural cavity and prevents the dura from stretching so the csf can no longer gather there. A friend on a 'csf leaks' forum has had this done successfully, and has just had the next step done which is to insert a permanent porta-cath into her abdomen with a catheter going into her epidural so that she can carry out infusions at home. Still waiting to hear from her about the success of this. Mr Watkins has been great, and since I've got to the end of the line with treatments they do at NHNN, he's agreed to give the epidural infusion a go. It's amazing news as they've never done this in the UK and he had to get permission from the hospital's New Treatment Committee to do it. If it's successful I hope they'll go on to consider doing the portacath treatment. I'm just waiting for a date for admission but will keep you updated if you would like?

Dr Schievink's does do a dural reduction surgery, but it looks like the epidural saline infusion is a better one to start with as it is much less invasive.

Thanks for getting in touch, perhaps we'll get to support each other even if it's just for a moan!

Best wishes, Sarah
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