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

Hi Sarah,

I'm in UK too and there seems to be so much more info from the USA but maybe with the increased population there, it's not all that different?!

I had a spontaneous csf leak which started very abruptly on 1st April this year. If I hadn't done my own research and paid to see a neurologist privately, I think I would be in the local psychiatric hospital now!
I was diagnosed on my first visit to see a neurologist, purely on my symptoms.

Since then I have had an MRI with gadolinium but it was normal.

I was given a caffeine infusion - non invasive, given by way of a drip x 2 on a overnight stay in hospital. I was sobbing when 3/4 way through the first infusion I felt relief for the first time in 8 months. But the headache crept back and gradually built up again even during the second infusion.

I was referred to a consultant anaesthetist who performs blood patches but he is reluctant to do one as he feels it won't be effective 9 months after the leak started and because we don't know the site of the leak.

I don't really know where to turn now... again I'm doing my own research and I'm about to contact my neurologist again to see what he can do.

THINGS WHICH HAVE HELPED GET THROUGH EACH DAY:
Amitriptyline on prescription which has enabled me to get back on my feet. It doesn't take the pain away but I can manage it better. I've even gone back to work on reduced hours but by the time I get home I'm tearful and exhausted from the pain. (I started on 10mg per day and gradually increased it to 100mg per day, under instruction of doctor. To be honest 50mg per day seems to be where it levelled out and I'm planning to reduce the dose back down to that very gradually)

Coffee, never thought I'd get sick of coffee. Some days even the thought of it makes me wretch but I need it or I can't get through a day.

Water, and copious amounts of it. I really notice the pain being far worse if I don't have a bottle in my hand and constantly drink from it.

Lying out flat, or even better, lying with your feet above your head. You need to lie on a board at an angle so that your whole spine tilts and not just raise your legs.

Ibuprofen gel slathered all over your neck, helps ease the muscle strain and pain there. Once it builds up the headache gets even worse.

If I find out who the expert in UK is I will let you know!

Hi Sarah,

I just read your post ** and my heart tightened at the despair you are feeling.

My GP was able to refer me to a particular neurologist privately and the neurologist slotted me back into NHS for tests etc due to the cost and the fact that I was self funding.
Since Dr.Casey has said he will see you on the NHS, can your GP refer you to him? Have you asked your GP to contact him? I don't see why it should be another consultant who has to refer you.

Try to find out the name of the doctor who acted unprofessionally and cruelly when he came to your bedside while you were in hospital and MAKE A FORMAL COMPLAINT about him. Also document your treatment / lack of treatment so far and put this in writing to yout local NHS complaints. Let them know how this has affected you and your family both physically and mentally... and LAY IT ON THICK! My GP told me to exagerate EVERYTHING I told the specialists or I would end up at the bottom of the pile or be dismissed.

I know you are totally depleted but it may help you get the assistance you need.

I'm still no further forward with my recovery and I know how hard it is to keep fighting but even note down a few points every day, keep a diary etc and then get a friend to document it for you. I know I tend to give up or treat the pain as 'normal' now but friends can reassure you that it's far from normal and that you deserve better. Can you get someone to take the lead in your fight to give you a rest from it?

I'm asking about neuroradiologists in my next push, if I get any good advice I will let you know straight away.

Thinking of you

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