After several head injuries in 70s and 80s I then had one in 1990 which caused a small tear in the membrane contaning the cerebrospinal fluid (CSF) and it leaked out through one nostril. That one healed and for 25 years I didn't have another, despite more head bangs. Then in 2017 I stood up and hit my head on the car boot door; usual concussion symptoms until I started getting fluid leaking from my nose. Lab analysed and positive for CSF; off to ENT who couldn't see the tear so forwarded to neurosurgery. There I experienced the worst of all British consultants whose opening shot was "I wish you people wouldn't look things up on the Internet", and parting shot was "if that's even what it is [CSF leak]".
3 years later, 3 more A & E trips and now waiting for referral to different hospital.
Fluid leaks if I tip my head. At night it soaks my pillow and towel. Fluid runs down my throat and then I cough and wheeze. It drips on my pets when I bend down to put collars on or pick up etc. Cooking is a no-no, I just have quick easy salads etc. I wear a mask at work to catch the drips. I go through headache phases. Have to remember to drink a lot to replace the fluid lost,so also in toilet a lot!
Leak is not improving despite resting a lot and referral will be months of course. It's not life-threatening (as yet) so I can't jump any queues either.
One frustrated person full of self-recriminations - if only I had worn a helmet I'd have finished that PhD I dreamed of.
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Obelix
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Some medical people are like that, unfortunately, Obelik. You would think they would trust the lab report - which is hard evidence.
Do you feel you have all the information you need to manage the condition while you are waiting?
It is really difficult to have to deal with the fluid and the constant reminder all is not as is should be ... do you have the mental health support you need?
I hope you have been in touch with Headway to see what they say / what support might be available.
The 'if only' game is quite common, I sometimes think it too, even though my injury was a result of being in the wrong place at the wrong time. I feel it may be the part of our brain that tries to keep us safe, so it reminds us of circumstances and spotential olutions in an effort to try to help us avoid further injury. So, when such comes up for me I say oh there there dear, and feed it a cookie (imanginaryily) ... this at least helps stop the self berating that can follow. It helps to be kind to oneself, I have found. ( If a person is alive and does things, sometimes they are going to get hurt.)
I am so sorry this has disrupted your dream in such a major way. Brian injuries really suck.
Thank you. I'm sure I don't have enough info about managing it but I don't think that there's much out there. It doesn't seem to be that common, although there is a cranial CSF group on Facebook but it's depressing as it's fill of horror stories; I'm comparatively lucky it seems! As for mental health, this is the UK. It takes MONTHS to get anywhere with the NHS and charities are overwhelmed with lockdown.
I'm also lucky in that I have a good friend who's a psychotherapist and listens to my moaning. 😄
Yes, Obelix, it sure is. (Because of Covid I had to wait 18 months for a surgery I would have only had to wait 8 months for before... the 10 extra months cost a very high price.)
Hi Obelix, you have my sympathy. CSF leaks can be a nightmare to find and fix. I speak from personal experience, not medical training. I'm not a medic.
Here's a link with info about CSF leaks: csfleak.info/
I don't know where you're based, but two hospitals that I think are well placed in the UK to handle a CSF leak are The National Hospital For Neurology and Neurosurgery in Queen Square London (Mr Laurence Watkins' Clinic) or the The Walton Centre NHS Foundation Trust in Fazakerley, Liverpool. As far as ENT is concerned, cranial CSF leaks need the attention of a good skull base surgeon, preferably one who's used to dealing with cranial leaks. There should be at least one in each of the aforementioned hospitals, I hope! I hope your bad experience wasn't in either of them!
An endoscopic procedure should find and fix a cranial leak if an experienced person is managing it, but scans are always an option if there's a problem with locating a leak.
Dr Wouter Schievink (Los Angeles, CA) is an expert in CSF flow dynamics. Probably one of the best in fact. Look him up online for more info. He says that an outstanding MRI can show a leak, but the best scan to locate leaks is a CT myelogram for the spine and for the head a cisternogram. Either scan is invasive, but with the right radiologist on board the leak(s) site should be found. Dr Schievink is not averse to assessing a scan for a UK patient if the leak isn't found and they have a copy of the scan. So don't hesitate to ask for a copy of any scan ordered for you, just in case you need it for a second opinion.
If your nasal fluid beta-2-transferrin test is positive, you have a leak. It doesn't matter what words an irritated consultant fires back at you. Do bear in mind that CSF flow dynamics are unfamiliar territory for many who generally regard themselves as well informed about their neuro field, which makes some very uncomfortable. Their discomfort alongside a half-way knowledgeable patient sometimes overwhelms them, hence their defensive rudeness. Ignore it and keep going 'til you've found someone who can fix your condition. A skull base leak is thought to be easier to fix than a spinal one, so don't give up hope just yet!
Finally, I hope you've had full spectrum meningitis jabs - you should have had these arranged for you. If not, I suggest you speak with your GP to get jabs arranged asap.
What fantastic advice and support! Thank you so very much for all that information, it actually made me tearful. 😳I've asked for a referral to Swindon this time because if ENT can't see it then they will refer to Oxford and there's a CSF specialist there apparently. There's a CSF charity which lists the specialists that they know of.
I don't know how I would get referred to London, or Liverpool, I'm in Wiltshire. 🤔
I am however keeping all your advice in a memo so that I can refer to it.
I can just imagine our surgery's response to a request for memingitis jabs, if a request for Tetanus last week was anything to go by - misinformation by the bucket load. However meningitis is my main worry, or encephalitis.
Thank you again, I feel so cheered, despite the tears!
You are very welcome and I wish you all the best with your referrals. I strongly suggest you pursue the meningitis jabs though. Take a deep breath and make that call!
I have an appointment with nurse to discuss meningitis jab! Thank you. 🌹
My sympathies to you,I had a csf leak and like you mine leaked through my nose luckily it was whilst in hospital from my accident a lumber drain was put in and after 5 days was removed
I'm sorry to hear that you're being stalled Obelix. My jabs were arranged by my GP on the recommendation of my consultant. Clearly, this is variable from practice to practice which is, I think, yet another indicator of the lack of local experience and knowledge when it comes to managing this condition.
I sincerely hope that your GP does arrange the jabs for you.
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