Cerebrospinal Fluid Leaks: An Overview

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We are delighted to announce the publication of Cerebrospinal Fluid Leaks: An Overview, the latest edition to our popular factsheet series. It is free to download from our website.

This new leaflet provides a valuable overview of cerebrospinal fluid (CSF) csf-leak-association-factsheet-series-advert-csf-leaks-an-overviewleaks, both cranial and spinal, and touches upon key signs and symptoms, diagnostic techniques and treatment options.

It has been produced in consultation with two UK neurologists working in the NHS: Dr Simon Ellis, a consultant neurologist at Royal Stoke University Hospital, and Dr Manjit Matharu, a consultant neurologist at the National Hospital for Neurology and Neurosurgery.

Cerebrospinal Fluid Leaks: An Overview is a must-read for both diagnosed sufferers and those who suspect that they may be suffering from a CSF leak. It is ideal for inclusion in leaflet displays or handing out as part of an awareness-raising event.

The leaflet also provides useful information for GPs, doctors working in emergency medicine, paramedics and other healthcare professionals who may not routinely encounter CSF leaks in their work, but nonetheless need to know what to look out for and how to treat them.

Download the leaflet here: Cerebrospinal Fluid Leaks - An Overview

Living with Intracranial Hypotension: Claire Hubbard’s Story

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Before becoming poorly in Dec 2009, I was a happily married, fit and healthy 43 year old with 2 teenage daughters. I collapsed one day for no reason and had not been right since. I would blank out and collapse in a headache attack after being upright too long, resulting in many visits to A&E. After suffering for nearly four years and almost every test you can imagine showing nothing, last July 2013 we decided that enough was enough and to take the bull by the horns and do something once and for all. Final decision. It turned out that was the best decision we had made.

I had been diagnosed with POTs in 2012 but felt it was not quite the right diagnosis for the sort of symptoms I was feeling. I had not got the tachycardia or dizziness many people with POTs have and my heart rate only just increased to the POTs threshold of 30 beats per minute when I stood up. I did have low blood pressure and had spent most of 2010 lying flat, which could have prompted the POTs like symptoms. I also had a daily headache, but mine was ongoing – 24 hours a day, every day. It was lessened in the morning but gradually got worse as the day progressed.

Every day I spasmed or jerked if I was upright too long or did too much. I would have to sleep every day for an hour at lunchtime in a completely flat position just to be able to continue with anything in the afternoon. If I did not, my head pain would simply increase till I had to lie down and spasm or jerk in pain.

My turning point was to pay privately for one consultation with a neurologist at my local hospital. We had to persuade my GP for the referral, as I knew it was my last chance and he said I had seen enough people. But, my new neurologist listened…

He was very interested in my symptoms and sent me for a series of tests – some of which I’d had before. All came back negative for a CSF leak. I would tell anyone who thinks they are leaking to persevere with doctors, as, if they can’t see a leak, they will say you haven’t got one, even if it is a slow leak and not likely to be seen.

I did my research. I read Dr. Schievink’s Question and Answers and highlighted anything that referred to myself. I even went on a POTs medication trial for a fortnight whilst in hospital to see if that would help. Once we had exhausted all the doctors’ ideas, including many of the anti-seizure medications, (all of which made my symptoms worse).

In February 2014, I lifted a heavy weight and carried it some distance, feeling that something had gone wrong as the pressure in my head suddenly grew. I went home and 36 hours later I could not get up at all without severe pain. It took 2 days to get hold of anyone who would help me and I was prescribed phyllocontin as it is a form of theophylline that increases csf. I was up again in 36 hours, but after taking the medication for 3 weeks and got gradually worse and worse until I was having repeated painful non-epileptic seizures – as in 8-11 in a row. I ended up in hospital where they did not know what to do with me. I was seizing at first 3-5 times a day, reducing to three times a day later on. Every day was the same and it was awful. I persuaded the UK doctors to try a scan that I hadn’t had after emailing Dr Linda Gray in North Carolina, USA. I had already had contact with her as I had asked for a quote to see how much money I needed to raise in order to get a second opinion. I asked her what she would do for me that the UK doctors may be able to do.

She said she would scan me and look for any potential leak sites. The scanner she uses is a DSM scanner and my hospital had not got one, but as it is a fairly newly built hospital building, they had the latest MRI scanners up to 3 tesla. Many MRI scanners are 1 – 2 tesla so I knew this scanner would be as good as a DSM scanner (hopefully). The test she recommended was a fat saturated MRI myelogram, using intrathecal gadolinium. My neurologist immediately said it must be done and went to organise it. And this is where it gets tricky. It was proposing to use gadolinium off license and so had to go through 3 weeks of protocol and paper work. I was desperate for help.

Eventually the test came. The way it was organised was to do 3 MRIs, one before the gadolinium was introduced and two after. Each MRI lasted 70 minutes. We split it up so the first one was done on one day and the next two on the next day, as it was a long time to stay absolutely still. This was completed Friday afternoon about 6pm. I would be lying if I said it was not hard work. To stay still in the noisy MRI for that long is difficult, but I knew I must do it if I wanted any chance of any leaks to be found.

The next day I was told the test showed nothing. I was surprised as it was the morning and I was trying to work out who had looked at them in so much detail to ascertain that information in such a short space of time.

So, the next step for me was to get a copy of the scans, to get a second opinion. Again, this isn’t easy. You have to apply to the ministries department at our hospital and pay £50 for your written records and scans. As an inpatient, the scans were not allowed to be released. I had to fight for this by asking the Chief Executive of the hospital to intervene, as my neurologist was more than happy to get the second opinion from the States. This took a while but they did arrive.

I have a friend who was able to take the discs and link them as a hyperlink to his Drop box account. This enabled me to simply email Dr Gray in USA with the link and password. I was the go between for my neurologist and Dr Gray for many days. At first she couldn’t open them, then she could. Then she sent the email that made me take a huge sigh – she could see potential leak sites and could name some of them. She wanted to see the most recent scan too as she couldn’t open them. This took a while with instructions and print screen images of how to find what she wanted. She advised my neurologist to do a full volume patch at the cervico-lumbar and then mid-thoracic region.

When I discussed this with my radiologist, he said the areas were too wide for him to think I could get any gain. I asked Dr Gray for yet more information. I offered to pay for her services all along, yet she would not accept anything. She replied with a comment of doing the same as before but adding a lumbar region patch too, as the UK would probably not be able to do CT fluoroscopic targeted blood patches at any diverticula that could be a problem and that she would look at me when I could get over there.

My radiologist took my scans home for the weekend and then on Monday, he gave me the choice. Three large blood patches or many targeted ones – he said that they could do that but with blood, not fibrin glue. The latter would be more painful and take longer. I decided to go for the targeted ones, as that is what Dr Gray would do in the USA.

It was not an easy procedure. I was asked if I would be able to lie absolutely still for it. As it was in the morning I felt confident I wouldn’t seizure as any seizure activity had started developing in the afternoon. After the lumbar puncture and injection of dye, I was asked to roll 15 times lengthways on the bed to mix the dye with the csf fluid. This is easier said than done. After that I lay on my front on the CT scanner and was asked not to move at all whilst being scanned and whilst the needles and then blood was inserted.

This is really important. If you move, the blood patches will not go to the targeted areas and will be useless. I had numerous needles put all down my back, from my shoulder blades to my lower back. Most of these were in pairs but some were single. The needles were inserted after an initial local anaesthetic on each one. My radiologist was meticulous to keep them in the exact right place. Sometimes a nerve was touched or tickled, but I still was not allowed to move. When all the needles were in place, the blood was syringed out of my arm and into the needles, about 5cc at a time. A lot of that ran out and down my sides! Some of the inserted blood was quite painful.

After each needle was filled, they were all removed and it was over. I lay head down in a gentle tilt for 2-3 hours before I sat up and ate my tea, feeling much better. I did not spasm, jerk or seizure from that moment onwards.

I am now at home, at the moment, 2 weeks in and symptom free. Totally. I’m no longer noise, light and smell hypersensitive. I can stay upright all day if I want to and can drive. I feel free and released. I know I’m not healed yet and so need to take it easy. I am planning to see Dr Gray in North Carolina as my neurologist thinks it would be a good idea to get a second opinion and maybe fibrin glue patching. I’m planning to go out in about a month’s time.

If you want any recent updates, please see my blog on: www.lucyhubblog.wordpress.com

Claire Hubbard

Eccleshall mum Claire Hubbard sees improvement in her condition

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AN ECCLESHALL mum suffering a debilitating brain condition is hoping she may finally have found a cure for her condition. Claire Hubbard, who suffers with intracranial hypotension which causes brain or spinal fluid to leak, has been raising £13,000 for pioneering treatment in the USA.

The teacher and former marathon runner has to use a wheelchair to get around, has a constant headache and has to lie down regularly and suffers body jerks and spasms. She had been hoping to travel abroad to get treatment to scan the brain and find out exactly where the leak was so it could be treated…

…Claire began writing a blog to share her story and let all her supporters know exactly how she was. And she has now under gone blood patching, which involved having injections in her spine to close leaks in her spine.

She is now recovering at home and although it is too early to say how successful the treatment has been she has so far noticed a major improvement. Claire may still travel to the USA for further treatment but so far has been thrilled with the results.

Read more here: http://www.staffordshirenewsletter.co.uk/Eccleshall-mum-Claire-Hubbard-sees-improvement/story-21255307-detail/story.html

New Factsheet – What is a CSF Leak?

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We’re pleased to announce the publication of the first in a series of CSFleak.info factsheets – What is a CSF Leak? – which can be downloaded via our downloads section or by clicking on the button below.

Our factsheets provide easy access to key facts and information; they are printable and can be taken with you when you meet with your GP. They are provided in good faith and following careful research, however they cannot be guaranteed error-free and are not a substitute for professional healthcare advice.

Headache Journal: Spontaneous Cerebrospinal Fluid (CSF) Leaks

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Spontaneous cerebrospinal fluid (CSF) leaks typically present with orthostatic headaches. Less commonly, spontaneous CSF leaks can present with other headache types. Nausea, vomiting, hearing disturbances, diplopia, back pain, and dizziness are not uncommon associated symptoms. Although the exact cause of CSF leaks often remains uncertain, some patients may be predisposed due to disorders of connective tissue or spinal meningeal anomalies.

When a spontaneous CSF leak is suspected, head MRI with contrast is ordinarily the first study to obtain. Common abnormalities seen include diffuse dural enhancement, subdural fluid collections, engorged cerebral venous sinuses, and cerebral descent. Important to know is the fact that despite typical clinical features, head MRI may occasionally be unremarkable. In such situations, ancillary studies may help answer whether a CSF leak is present. Radioisotope cisternography and spine MRI are helpful tools in such occurrences. Presently, CT-myelography remains the most reliable test to find the exact spinal CSF leak site. Often, however, the exact CSF leak site is not found.

Read the full article here: http://www.headachejournal.org/view/0/CSFLeaks.html