Hi there, my names Ali and I live in Cornwall, UK.
I have been a long term sufferer of Spontaneous leaks and POTS since I was 13 (15 years ago).
Reading your stories are like hearing my suffering all over again at an early stage and I can totally sympathise with everything you both are saying.

I had a shunt fitted because the neurosurgeon in London thinks my pressure spikes at night and crashes during the day which causes the leaks because I have a weak dura due to Elhers Danlos, which gives me weak spots for some reason.

I have been for numerous surgeries both in the UK and in the USA (Cedars Sinai in LA under Dr Schievink and Queens Square Hospital, London). I am currently being treated for POTS at Bristol Heart Institute, Bristol where a specialist is providing me with excellent advice and care. It's a shame this is not being continued by my local NHS practictioners and funding is being refused for the trial drug I was recommended.

I don't want want to blabber on as this is my first post, but I have added both of you as friend contacts on here, as I would love to hear from your both in more detail. I know I have a long story to tell! I want to share information, experiences and knowledge as I feel I am stuck in a rut at the moment and that nobody else can sypathise with my condition. Constant, agonising pain throughout the day (every day), progressively worsening to a crippling pain throughout the day.

I am currently debating whether to begin fundraising for additional treatment in the USA, as the UK health service is failing me miserably. I do however have additional issues caused by MRSA following a leak repair surgery in the UK, which is significantly affecting the path of treatment as all the UK specialists are refusing to treat me due to the scar tissue formations from MRSA.

Hope to hear from you all soon.
Ali

Hi I'm 20 from Devon and I've been bed-ridden with a spontaneous csf leak for 6 months now, In more agony than I could possibly explain but I'm sure I'm finally talking to people who understand! I've got my first blood patch booked for this Weds, they haven't identified a leak but they're willing to try it. None of my doctors or neurologists have ever come across it before so explains why I took so long being diagnosed and so long to get the procedure! But I have been told if it doesn't work then my neurologist (Dr Harrower, Exeter RD&E hospital) doesn't know what to do next and will be referring me to London hospitals as in his own words 'I've only read a paper on possible solutions once and I think it was in Austrian' so he isn't exactly confident! My neurologist has been very good at helping me and getting me all the tests I need, and all on the NHS thankfully as I couldn't afford to go private! If I could of I'm sure I would of been able to get diagnosed a lot faster! Tbh the neurologists all seem to know my case and seem pretty interested as they haven't seen it before!

Hello Ali and Tink. Sorry I didn't see your posts till now. I'm not online much and rarely visit here. Are you both members on the facbook site? Just search CSF leaks on there and you should find it. It's very active and very useful for support and info. I will keep an eye out for both of you Also, Ali... I find your story interesting as they haven't found leak sites with me yet and my neuro mentioned about weak dura a few months ago. There are a few autoimmune issues in my family and I did wonder about the poss of something similar to Elhers Danlos with me. Sorry we have all had to meet this way but good to make your aquaintances, Deb.

Hi Ali,

I read your post with great interest as you are the first person I have been able to find with symptoms like mine.

I have been under the care of Queen Square for the last 3 years and have had a whole barrage of tests and treatments with no success.

I too have EDSIII and am having a shunt inserted in the new year for exactly the same problem as you. My surgeon says he's only done 4 for this specific type of treatment, 2 have been successful in helping but 2 have failed. I wonder if you are one of the 4, and if so has it helped you?

I have found out that Dr S at Cedars Sinai does an operation to remove part of the dura in the lumbar spine in order to decrease the size of it allowing what csf one produces to 'fill up' the system properly. Is this something that you've had done there?

Sorry for so many questions, but, as I'm sure you know only too well, when you find someone that might be in exactly the same position as you, you have to grab the chance to ask questions with both hands!

Many thanks Ali, I hope you are not feeling too bad at the moment (I know you have 24hr pain like me, but you know what I mean!), and I look forward to hearing from you when you are able to reply.

Best wishes and many thanks
Sarah

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 all -- I am Leslie and I live in Washington State, US. I just wanted to say that all the answers are not here either. I have been incapacitated by the headaches from CSF leaks for about 10 months. I've had 5 blood patches - two of which helped briefly (couple of days). I've had every diagnostic test to find the leaks (MRI, myelogram, cisternogram, myelogram with gadolinium) and none have shown the leaks.

I apparently have an unusual situation because of multiple diverticula on my nerve roots up and down my spine. They tell me all of these are potential leak sites but they've never seen any leaks in all of the tests I've had. My brain is swollen and sagging below the back of my skull. My pituitary gland is enlarged - which sometimes happens with long term leaking - and it is pressing on other structures in my brain.
After getting frustrated with my lack of successful treatment I sought help from the Mayo Clinic in Minnesota.

After a few more tests, they, too, are at a loss as to what may help. We're considering a new kind of blood patch that is currently being done in Italy - the patient is put in a head down position for 24 hrs after the patch. Mayo has done it with one woman and she only had relief for 10 days so they're discussing what could be adjusted before they attempt it with me.

Seems like a shot in the dark. I'm really frustrated with the lack of options. I have had some good days lately - a couple here and there - so I'm grateful for that. But I don't want you to think that getting to the US will solve your problem - it won't. Maybe they will come up with something new for all of us soon.

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

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