I had spinal decompression surgery in 2007 in Spain. I then had a massive CSF leak, this was surgically repaired. Then I contracted 3 types of bacterial meningitis. Successfully treated with iv antibiotics, then as the pressure issue of my CSF wasnt tackled, I blew the repair and had another large fast CSF leak. Further repair surgery followed. A few weeks later I was sent home. Again the pressure issue wasnt addressed and I blew out the second repair. No one would do anything. They did however carry out a radiocisternography with scans over 72 hours during which I was mobile and upright a lot of the time and this showed evidence of a leak almost 10 months later. A different hospital and different neuro attempted a blood patch but could not get the needle through the scar tissue.
I then relocated back to the UK. I was admitted to a local hospital, a week later transferred to Bristol, another radiocisternography was done but this time only over 24 hours. No leak seen but I had been on bed rest for 10 days so would have been unlikely to be seen anyway. I was discharged and told nothing could be done. Then new referral to Plymouth hospital. Neuro there referred me to the National at Queens Square. They did caffeine infusions, scans, POT's testing and finally ICP bolt pressure monitoring. The ICP bolt monitoring sat at 2 - 5 almost all the time and I was laying down attached to a computer so was not typical of 'normal life'. I was then diagnosed with Migraines.
I completely disagree with this diagnosis as does my GP, a migraine specialist in Harley Street, a private neuro spinal surgeon from Wales and Dr Linda Gray of Dukes Medical Centre, NC. I am currently waiting to see if I can get a private appointment to see the ONLY Spinal Neurosurgeon available on the NHS in this country.
I suffer all day every day with headaches that worsen as the day wears on and is ONLY relieved by lying down. There is no medication that helps the head pain and there is no let up from it. I also have tinitus, muffled hearing, dizziness, disturbed vision which has worsened dramatically, pain and pressure behind my eyes constantly, stiff neck, feeling that my brain is being sucked down through my shoulders. My face goes red most days, and my brain feels like it is in a hot vice being tightened slowly but surely during the day. I have no quality of life whatsoever, I also have constant pain in my lower back and nerve pain/numbness/tingling in my legs. Again worsening the longer I am upright. Sitting is awful for me. the most painful position. When going from sitting to standing I get thunderclap headaches that make me stop dead, shut my eyes, hold on to something and I have to let it settle for a minute or so. Every part of daily living is affected. Coughing, sneezing, bathroom straining, chewing, all causes my headache to get a lot worse.
I have been treated like a second class citizen, I am ignored, shouted at, told I am neurotic, need a physciatrist, attention seeking, you name it Ive been called it. I was an in patient at Exeters hospital for the last few days, when I was told that they refuse to do anything for me, despite a CT myelogram being available at this hospital (the best diagnostic tool around for CSF leaks and locations) I was told that clearly I wouldnt give up until I heard what i wanted to hear. The doctor was so rude he wouldnt let me speak, and even said 'I wont open the curtains, im sure you will be getting dressed now wont you!!'
I have made an application under the Exceptional Treatments Panel for referral to the states. This was refused, I appealed with more information (I wasnt allowed to present information to the first meeting) The appeal was successful, this was then re referred to the Exceptional Treatments Panel. Again refused.
I have no one left, no where to go, no help and no future. I cannot work, go out, contribute in any way to anything. I have been suffering tremendously with depression, and have been seeing a counsellor for nearly 2 years (2 hours twice a week). I have attempted suicide twice in the last 3 years but at least now I am in a stronger mental place. I have just run out of fight. No one in this day and age should be allowed to suffer such deabilititating relentless pain. It certainly wouldnt be allowed to happen to an animal!
Thank you for reading. I would be very grateful for any advice anyone may have. I am currently trying to raise funds to get to see either the private guy in London or get to the states to see Dr Linda Gray. If anyone has any ideas as to how I may be able to do this I would be so so grateful.

Hello Hemyinspain and welcome to the forum.
I am totally blown away by your post, for many reasons. Your story sounds so very, very similar to a dear friend of mine. Ready for this, her NeuroRadiologist is Dr. Linda Gray Leithe, from Duke, who just so happens to be my Doctor also! Dr. Gray has patched her numerous times, with blood and with tissel. Each time my friend has unfortunately blown out the patches again. She has another appoinment coming up soon with Dr. Gray. I'll let you know the latest after I hear from her.

I have had a lp shunt for almost 4 weeks now. The periodic low pressure headaches that I get are bad, but I am lucky that I am able to get rid of them by laying down for a few minutes. I do notice that when I cough or have a deep sneeze the headache is massive, but again is passes relatively quickly. So, since I have had a peek at what you are dealing with, my heart goes out to you. This is indeed a horrible situation to be in. I live here in the US so I am afraid I won't be able to help with your healthcare system, but there are others here who will.

Are you in contact with Dr. Gray? Has she given you any suggestions? She is one of the best in this field, so I would follow anything she says!

I hope you will be able to make your way through this and get well. Don't give up hope. We'll do what we can from this side!

Hi Wylee
for your response. It is good to hear from other people that understand.
I am in touch with Linda, she is amazing, we have spoken on the telephone and email all the time. she is completely supportive however without the funds I have no way to get to see her. I do not know quite what to do any more. I need to find a way to raise the funds somehow to get to her, there is no one better. I am writing to every charity I can think of, perhaps there are charities in the usa that help brits get medical treatment over there? i dont know but worth a stab.
Once again, for being there. Its so hard to live a life in absolute constant all consuming pain. My head is horrendous, but I also have the most terrible back and leg pain which could be being agraated by leaking csf onto the nere endings, I dont know but its a possibility.

Hello and to the group!

Your story is so sad and I really do hope you get help and support soon. I would suggest getting in touch with PALS if your not happy with your hospital treatment with the NHS. Unfortunately I don't know anywhere that would help with funding privately.

Hemyinspain, how are you doing? Making any headway?