Any UK CSF leakers out there? Please help if you can

[hemyinspain]

Hi everyone.  I am a suspected UK leaker who has been through 5 different hospitals and neurologists, neurosurgeons and trauma surgeons and am being diagnosed left right and centre with 'migraines' 'physcological issues' and much more.  No one here in the UK is prepared to carry out the correct diagnositic testing that IS available on the NHS to prove or discount a leak.  My history has been posted on here before but briefly, I had two huge CSF leaks after spinal surgery L5/S1 in Spain. I had two repair surgeries, and am absolutely convinced that as the high pressure was not addressed after the repair surgeries I am still leaking 4 years later.  I am a member of CSF leak page on facebook and also www.****.org and I am trying to gather up as many people in the UK as possible who are going through the same problems I am.  My aim is to get everyone who is able to help me get Dr. Linda Gray from Dukes Medical Centre to come to the UK and diagnose and treat as many people as possible.  But I cant do this alone.  im very sick, cannot be upright for long, now have the same L5/S1 disc out again and cannot walk at all.  I have been flat since 27th November 2011.  Is anyone interested in helping?  Is anyone struggling with this as I and a few other are?  i would be very grateful to hear from you.  

So far Ive written to BSNR - British Society of Neuro Radiologists and sent them this letter. Lets hope we get some advances forward.......

I am researching neuroradiologists that may be willing to work with the renowned Dr. Linda Gray of Dukes Medical Centre, Durham, NC, USA whose speciality is locating and fixing spinal CSF leaks. http://www.dukehealth.org/​physicians/linda_g_leithe

I am a UK leaker (4 + years), and there are a fair few of us on a facebook page and www.csfleak.org who are getting together to try to locate facilities where Dr Linda Gray would be able to come over with a few of her team to help us. All of us have been through so many doctors, hospitals, specialists, etc and almost all of us have been cast aside with 'migraines' or 'physc problems' Yet most of us have proof that we are leaking.
On a personal basis, I am almost bedbound, have terrible headaches all day every day that worsen on being upright pressure behind the eyes, pain and stiffness in neck, muffled hearing with occasional tinnitus, vision deterioration, pressure like tightening and hot in my head and my brain feels like it is being sucked down into my neck. My CSF leaks were a result of spinal surgery L5/S1 decompression, two surgical repairs both of which blew out, meningitis, and another leak. I also have had a radionucleartide cisternogram showing a leak. Yet despite all this evidence I am getting no where and have been discharged by many doctors and specialists. I also have the same disc now herniated again and trapping the nerves causing numbness in my right lower leg and intense pain in both legs. I cannot walk more than a few steps with crutches and use a wheelchair. And yet no one will touch me because I am too high risk.

Here is the last email I received from Linda Gray which points out what she would need.

Sarah,

So glad that you emailed me..I have been thinking...I think there is one other person in the UK who is having problems...would the health service at all be amenable to having us come there to treat some patients and to show others how to do what we do???? We would need a hospital with a CT fluoro unit and I am not sure what all the medical privileging restrictions are..if you decide that you might want to ask about this, I'm sure they could let us know about that!

Wish I could help you..not sure if this is an option but it might be worth looking into!
Hang in there..there was a recent paper from Germany where they did targeted patches like we did..i will try to find the link and send it to you!
Ciao
Linda

We would then of course need to find a way to get the NHS to agree to this. I have written to her again asking her for a more formal letter on headed notepaper and for her to send some articles she and her team may have had published.

I would be very grateful if you could help us in any way, even if only to advise us which way to go next. We are writing to our MP's and asking for a meeting with the Health Secretary, and are hoping that there is a unit somewhere in the UK that would be willing to work with Dr Gray and her team, possibly learn something and maybe in the future there would be more support and diagnostic availability for people with dificult to diagnose CSF leaks.

Thank you for taking the time to read this email.

Regards

[handycross]

Hi Jack I hope your wife is getting better , Which neurosurgeon in uk "doesn't do dead ends" I need one with that kind of philosophy too

[wood4trees]

Hi Sarah,

We have not caught up elsewhere as I do not use any other forums nor am I on Facebook. In fact I only ever used MedHelp that once and I obviously ticked a box somewhere as it notified me of your posting or I would not have seen it. But I do often think of you. And you would most certainly not bother me!!!

I did send you an e-mail last November but never heard back.

Crikey, 6 leaks eh!!!  I assume all 6 were fixed to give you 4 wonderful months. What do you mean by wonderful? Were you up and about pain free?  

I am sorry to hear you are leaking again and maybe have Chiari. I am also sorry to hear your two sons have it too. I believe it can indeed be congenital. I also understand it can be treated with surgery. I think they remove a horseshoe shape of bone to give brain tonsils room at base of skull at top of spine. Not that I'm an expert so don't take this as medical advice! You probably already know more than me.

I am concerned you are leaking again though. Do you have a dural condition? Was your ICP checked? Do you have a Shunt? As I say, I am not medically trained but my wife has had all sorts over last ten years and I tend to pick up bits of info as I go along. If you are leaking from a previous or new site I would have to question your ICP which may be putting too much pressure on the dura and causing leaks.

As for my wife, I cannot remember what I told you last time. She had brain tumour and two blood clots and hydrocephalous 10 years ago and has never been right since.

In January it was proven that her meninges and brain tissue were trapped and protruding between her plate and natural skull bone, which was causing all the pain that even IV Morphine couldn't control!!!  This was fixed.

Last few years I have also been convinced she had cranial leak. Symptoms told me so. ICP monitor showed low pressure. MRI showed meningeal enhancement and CSF leak and she could feel the CSF running down her throat. Yet doctors still wouldn't believe a leak!

A couple of months ago she went in for a new plate to be fitted. I had long chat with neurosurgeon literally as he come to get her for surgery.   During surgery, he did find a leak. He used a skin graft to patch the dura. There were other complications since but as far as leak goes it seems to be sealed. We are now trying different settings on her shunt to get pressure right and seem to be making some progress but it still early days to be sure yet. We are certainly in a much better position than we were and remain hopeful.

Like you, we have seen numerous so called experts whom would not even listen. However, we now have a very good neurosurgeon on board. Whilst he may not have come across such things before he is very open to the fact that anything can happen and will pursue it to the end. In his own words "we don't do dead ends".

I would love to keep in touch with you. Please use my e-mail: ***@**** (wood jack at bt open world *******)

Best wishes.

Jack

[hemyinspain]

Hi
I wondered how you are doing? How is your wife?
I finally went to the USA and 6 leaks were found and I had a wonderful 4 months but am now leaking again and I also think I have chiari.  I have 2 sons that have recently been diagnosed.
We may have caught up on another forum in which case I am sorry for bothering you.  I have started a new facebook group called CSF LEAKS (UK AND OTHERS) in the hopes that more of us UK'ers can inform each other easily.  The UK system is absolutely abysmal and has ruined my life.
Thinking of you
Sarah

[wood4trees]

Hi, I am happy with e-mail but yours has been blotted out in the posting.

I have sent a text to the number you provided.

[hemyinspain]

Hi!!!
I am very pleased to meet you and help you although of course I wish it were under different circumstances.
I am based in the west country and have been to Taunton, Exeter, Plymouth, Bristol, and the National Hospital for Neurology and Neurosurgery in London twice.
I am still leaking and in dire states. I can hardly be up for a minute without the head starting to hurt horriffically.
I am on a facebook page called CSF leaks which I can only say has kept me alive. They are the most kindest caring informative group I have ever met and I know I have made some lifelong friends on there along with their assistance.  In fact one member even decided to start up a fundraiser for me to get me to the states to see Dr Linda Gray. The money has now been raised and I hope to go next year as soon as we can sort out the medical visa I will need.
I am happy to talk to you via email if you prefer on ***@**** or if you would like to call its 07787921864.
I have been seen by approximately 9 specialists now and am still getting worse by the day.
I would love to know where you are based, who you have seen, where you have been.  My heart goes out to your wife and also to you as a care giver. My husband had to shut down his business after 28 years and reduce his income to being a full time carer. This illness hits everyone so very hard.
I hope I can help you in any way you need
Warm regards
Sarah

[wood4trees]

Hi,  I have just been looking at your post.  I realise it's quite old now but knowing how CSF leaks are I wondered if you were still pursuing the matter.  Hopefully, you have long since been fixed.  I believe my Wife has a CSF leak in the head but of course the same story as every other leaker is that we get nowhere with the Drs!  I am in the UK and wondered which hospitals you have already tried as I am now seeking another referal but no point going to the ones you've already seen eh!

Regards,