February 2017 saw the launch of the first ever ‘Leak Week’; a week dedicated to raising awareness of spinal cerebrospinal fluid leaks, running from 26th Feb to 4th March 2017. Initiated by the US Spinal CSF Leak Foundation, the campaign was dedicated to spreading the word about what a CSF Leak is, and to clearly highlight the associated symptoms in order to aid diagnosis.
This edition of Leaker Life brings the third and final Q and A summary, with Dr Wouter Schievink. Once again we wish to express our sincere gratitude to The Spinal CSF Leak Foundation for organising the sessions and for allowing is to feature this summary in our newsletter. In addition, we also wish to express our thanks to Becky Hill for the time and hard work she has dedicated to transcribing the sessions.
Is it possible to have nerve damage after prolonged leaking?
Leaks can cause problems with nerves.
One can get leaks from nerves stretching ie. from arms moving but this is very unusual. A leak can cause problems if leaking for years / decades.
Often once patients are successfully treated any problems are reversible.
What are the common misconceptions with spontaneous intracranial hypotension?
Many patients may be treated with 2 patches and get better - they then forget about it. (Like those who come through ER).
But Dr Schievink treats many patients that have had lots of other scans and treatments and are still struggling to get well. Cases can be complex.
Migraines vs leaks
Brain and Spine MRI results - many have normal results.
Lots of uncertainties because people can be leaking with no evidence on imaging, and only symptoms to go on.
Can you do more damage if you push through symptoms and stay upright too much?
Dr Schievink recommends not pushing through activities that make symptoms significantly worse.
Even if symptoms go on to years or decades symptoms can be fully reversal after successful treatment.
They are not commonly seen.
Often a patient will be leaking in one place and then fluid moves around the epidural space. This can look like multiple leaks but it is rare for there to actually be more than one leak at a time.
SIH & Connective Tissue Disorders
Some patients do not have a leak, but instead have an elasticity of the dura means it stretches and sags giving similar symptoms as a leak. An EBP can still help this due to scarring.
What is standard aftercare?
There is little evidence based information regarding aftercare.
There have been no randomised trials regarding treatment or following treatment.
Ideally after an EBP patients should rest one month with no exertion, lift no more than 10-15 lb, don't strain on the toilet, avoid soft sand or snow, etc. Some others at hospital and other places say avoid 2-3 months.
Can positional headache change after leaking for a while?
Yes, the positional aspect can get lost.
Perhaps the body compensates and pressure is normalised even though leaking.
If a CT Myleogram doesn't show a leak, what is the next recommended imaging?
A Digital Subtraction Myleogram under general anaesthesia.
This studies the dye as it is injected into dura. This is good for rapid leaks as it pinpoints location well.
It is also good for venous fistula leaks.
Does Dr Schievink patch patients with no evidence of a leak on imaging?
Yes, at Cedars Sinai they will try up to two split level EBP as a diagnostic procedure. If the patient responds well, will treat further.
Can you leak over 3 weeks, heal spontaneously then rebound into high pressure?
Yes, there are patient stories and reports of this happening.
RHP vs SIH
Rebound Hypertension (RHP) usually presents with opposite symptoms to Spontaneous Intracranial Hypotension (SIH).
It is the same type of problem but symptoms are not always as obvious.
In 1994, Dr Schievink had his first patient with RHP following surgery for a cyst which had been leaking for seven years. Six weeks later, the patient experienced a haemorrhage behind the eye. Then, he experienced a headache for six weeks and couldn't sleep - needed pillows stacked etc.
How many people repaired go on to experience a recurring leak?
Dr Schievink used to think this figure was 10% over ten years. But the more they look into this it seems many of those never felt fully normal after treatment. So, they think it is mostly the same leak as before not actually a new one.
Does fluid dripping from the nose and eye indicate a skull leak?
In the case of a skull base leak, fluid runs out of ears, nose or down throats but do not have SIH so HA is not positional.
Spinal leakers can have a reaction in the lining of the nose so more discharge than normal but this is not spinal fluid.
Sometimes it is possible to have both skull and spinal leak.
Can you have a substantial leak with minimal symptoms?
Yes. Especially if the leak is long term and the body compensates by making more fluid. Also a membrane can form around the leak that can improve symptoms.
EDS/connective tissue disorders
The vast majority of patients with SIH have an underlying connective tissue disorder. There are many different types of connective tissue disorder.
Many patients present as tall, slim and lanky.
Dura is often more delicate. Cysts are also more common.
Calcium/ bone rubbing against dura or sticking into dura can cause leak from trauma or over time but dura must be weak for this to happen. Many people have spinal degeneration but no leak so has to be an underlying weakness.
The youngest leaker I have treated started showing symptoms at about age two. They came for treatment at about 4 to 5 years of age.
Should you patch or do surgery for perianal cysts?
This depends on the person. Some don't want surgery so they patch up to dozens of times. Some go straight to surgery with no patch for permanent fix.
Dr Schievink would personally try blood patches and glue before surgery.
How long after EBP will you know if you are fully sealed?
Three months is an important milestone - most patients know if fully successful by then.
There have been few recurrences between 3 months - 1 year. Most were related to ongoing problems due to leak not being fully sealed.
What is the outlook for people with many different causes of leak?
If bone spur tear surgery cure rate is very high - 95% plus. But some do continue with symptoms and they do not know why.
Can you leak intermittently - some days are better, some days are worse?
- Yes or the brain is keeping up with a continuous leak.
What is on the horizon for patients not healed with patching or surgery?
There is little basic science about the dura and genetics about dura.
Some research is looking at gene research about dura weakness.
There are also animal model experiments on dura to see if they can strengthen the dura is a possible area of research.
Does the presence of leaking cysts mean more normal brain imaging?
Cysts hardly ever enlarge after adolescence.
No relationship between type of leak and abnormal vs normal brain imaging.
If cysts smaller than 8mm they are a common finding they do not mean you have a leak but could be connected.
Is ICP monitoring useful for SIH?
Leak symptoms are often due to low volume of spinal fluid rather than low pressure so reading is often normal.
There is risk with ICP monitoring so they never use it for SIH.
Can a chronic leaker have symptoms once a leak healed?
There is little data on this.
There is often nothing on the imaging but the patient is probably still leaking. It can be difficult to fix.
Venous fistula types
1. Direct vein connection to dura. Blue in appearance but if cut 90% spinal fluid.
2. Tangle of blood vessels where nerve comes out.
There hasn't been a randomised trial to compare blood to PRP
Some patients do better with blood, some better PRP.
We only do this if an EBP has already failed.
How long after being sealed would you recommend working out?
Start resuming activity after one month then build up slowly according to symptoms. Do not push yourself.
Do spontaneous leaks increase the risk of subdural hematoma?
This is very common - many more cases than due to needle leak.
Many do not need surgery
1 in 3 or 4 occurrence.
What is the typical amount of blood used in an EBP?
Once needles placed in epidural space, an infusion of blood will take place and will continue until the patient cannot tolerate the pressure or pain.
At Cedars Sinai between 3ml to 135ml blood per patch has been used.