Before I begin discussing this condition, I want to give my sympathies to any sufferers and their families as well, for braving this condition together. Not many people realize the implications and impact this condition can have on someone’s life. And it goes without saying, the families as well, because they care ad find it very hard to see anybody suffering with conditions such as this. Until a better way of treating this and other diseases is developed, I believe we can get through this together, giving support and all available therapies in order to make life easier as a solution is being developed.

After you finish here, don’t forget to visit us on occasion, as I’ll be posting new developments, challenging treatments that do not work and discussing supportive measures until then.

Introduction

A bit about Cerebrospinal Fluid CSF is one of many fluids produced in the human body. This fluid is specific to the central nervous system (the brain, spinal cord).

Cerebrospinal fluid (CSF) is the viscous liquid which ‘pads’ or ‘cushions’ the brain and spinal cord as well as allowing metabolites and even some cells to disperse in its medium. If it weren’t for the CSF, the brain would simply rest against the delicate and sensitive tissues lining the inner skull. Interestingly, the very organ that needs CSF the most, also produces it. Most of the CSF is produced in the ventricles of the brain – and from there, gently traverses the structures until it reaches the spinal cord, ultimately covering the entire area. With this in mind, we can see the importance of CSF.

If you want to read a bit more in-depth about CSF, CLICK HERE.. Otherwise, continue with CSF Leaks and SIH.

There are times when the CSF levels can cause serious problems to the individual. This can be a problem needing careful diagnosis and management. Spontaneous Intracranial Hypotension (SIH) is one of them.

SIH is a condition where a patient experiences mild to severe headaches due to a decrease in the CSF levels. Decreases in CSF can be from leakage, decreased production, or even unknown causes. The CSF is maintained at a fairly accurate pressure. As the CSF is being produced, some leaved the system. In fact, the brain and associated tissues produces almost 500 millilitres (half a litre!) of CSF each day. And the covering of the brain and spinal cord occupies about 1500 ml (about a litre and a half). Yet, there is usually only roughly 150 ml at any given time. From these figures, we can see the CSF is continually replenished. This continual replenishment of CSF also ensures that a sufficient level, pressure and purity are present as well. Imagine if the CSF changed pathologically, like our blood with high levels of cholesterol, sugars, etc.? The filtering system could suffer over time causing problems here. It’s a delicate system in it’s own right.

The Cushioning Effect of CSF
The brain rests on this thin cushion of CSF akin to a sponge floating in a small tank of water. If the fluid levels decrease, depending on the position of the head (lying down, standing, rotating head), the brain in that area will make contact with or rest on that area of the skull. The inner skull is lined with delicate and very SENSITIVE tissues. When the brain comes into contact with these tissues, this causes symptoms such as headache. Keep in mind that other symptoms can occur, such as hearing disturbances, vertigo, dizziness, nausea, and associated vomiting.

This helps us understand the reason behind the naming of this condition (SIH). It’s ‘intracranial’ because the primary symptoms occur intracranially (within the skull). Hypotension, because the low CSF volume creates a lower than normal pressure in that area (hypo = lower than normal). ‘Sudden’ because the symptoms are felt suddenly (eg.,when the person wakes up, or sits upright), and unknowingly allows the brain to rest on the skull, resulting in a headache – which can be extremely painful.

SIH is a rare condition, affecting around 1 person in 50,000 and more women are affected than men. However, the number may much higher than this estimate, considering the condition goes undiagnosed correctly and eventually resolves on its own, thus never even being documented. And of course, many individuals who’ve not been diagnosed, may have different levels of Hypotension, some more bearable than others. The ‘evolvement’ of this condition may also take different amounts of time, depending on the cause. For example, a tear in the dura mater through surgery, or common head injury may cause this. On other occasions, the patient may not be able to recall any trauma.

Like a stomach ache that can be caused by a few different things, SIH is also an umbrella term in some respects. The name is accurate, since it’s descriptive. However, the causes may be varied and we must keep this in mind when evaluating the patient presenting with these symptoms.

Diagnosis
In a nutshell, diagnosis consists of scans which are designed to find the leak. On fair percentage of the time, no leak is found though.

Treatment
Many cases of SIH resolve on their own. This may because any weakness, tear, or cause behind the leak is resolved by the tissue itself.

If the leak fails to resolve, it medical intervention will be necessary.

If a leak is found, the leak can be directly treated. A treatment called a ‘blood patch’ is can be given to the patient. A blood patch is an injection of a volume of blood (around 1/30th of a litre) is injected directly into the CSF region. It is hoped that the blood will ‘seal’ the leak. A fibrin blue can also be injected.

If a leak is not found (which is often the case), the patient can still be treated with a blood patch. The object of treatment is to allow the CSF levels to return to normal in order to abate the headaches or any other symptoms.

Prognosis
Many of the time, treatment works. Often the patient’s CSF levels will lower, again, presenting with similar symptoms, and the patient can be treated again. I’ve spoken to a few patients who’ve done very well with blood patches. Often, they never have a recurrence. Some do and sometimes, the blood patch will stop it again for a time.

Treatment hopes for the near future and / now perhaps?
I’ve had a few enquiries about stem cells being a possible treatment for SIH. I agree entirely, that they can be useful, provided the stem cells can actually locate a defect in the tissue and seal it, or grow over it.

At this point in time, we are not getting ADULT stem cells to change into nervous tissue simply by injecting them into a patient, and I haven’t seen any research to support adult stem cells having the capability to change into dura or pia mater.

If it were myself, I’d be concerned about putting cord blood cells and other types that clinics are coffering, in the event that there was any

- immune reaction

- - this causing an inflammatory reaction in the CNS and hence, meningitis, which can be fatal.



Autologous (your own) stem cells would seem the safer alternative. The few clinics present which are offering fetal stem cells for only limited therapies (testing phase) on macular degeneration are using immunosuppression in conjunction with stem cell implants to guard against the immune system rejecting the stem cells, and thus attacking them.

Some have suggested that immunosuppression is not necessary. Time will tell if not and under what conditions.

At present, convential blood patches are the gold standard of treatment. If I myself were experiencing relapses, what would I consider? After all, SIH can be very frustrating to deal with, especially after undergoing treatment with a blood patch, only to be told you may need them periodically. Could 'stem cell blood patches' be an answer?

I believe so, provided, they are engineered and implemented correctly. It would be very speculative if I were to say that a stem cell preparation made from autologous adult stem cells werer to be given to an SIH patient. Since these cells are autologous (your own), immune rejection is highly unlikely. Bhut this is not the only consideration. There is the theoretical possibility of the injection of autologous cells into the CSF space, causing inflammation (meningitis).

And of course, simply injection things into the lumbar region and especially around the brain is risky. I cannot stress enough, that there have already been deaths, due to injecting autologous stem cells around the brain. This may not have been just because of the stem cells being present, but also because of the procedure itself.

O)n a more optimistic note, stem cell blood patches may do a great job, once they are tried, and tested. If I were opening a research clinic which I've had in the plans for ages, and I was having it perfomrmed on myself, I'd probably only start with small stem cell loads. This is something that has been discussed with even fetal stem cell implants.

I hope this helps a bit, and any studies I find which add to this, contradict this, etc,, I will certainly post as well.

Keep in mind that the current gold standard treatment protocol (blood patches) not only help to seal any leaks, keeping the cSF levels towards normal. By maintaining normal CSF volumes, the symptoms and signs are hopefully thwarted. If hearing loss and headaches are what's experienced, once the CSF volume is maintained, these symptoms should dissipate. In the veryunfortunate event that the brain puts pressure on the optic nerves,affecting vision, this would be considered a neurological emergency (as well as an ophthalmological ermergency) and I would expect nothing less that for the neurologist and as ophthalmologist teaming up for an immediate opinioin and course of action - for example, the question for me would be, "woudld an immediate blood patch" stop the pressure of the brain on the optic nerves?" It seems so. Anyone doctor disagree? If so, by all means, write to me on this and we can discuss this.

Is there anything else I can do on my own to help this?
Review this with your doctor - but adequate fluid intake sometimes helps, along with proper nutrition - since Cerebrospinal Fluid is a filtrate of the blood, higher water intakes accordingly increasse blood volume - the theory here is that this will cause CSF production to increase and thus, return brain cushioning to its homeostatic physiological state.

in some people, may of the symptoms appear upon waking up and moving the head, and also while standing and nodding and also rotating the head (turning side to side). This is plausible, considering the low CSF volume allows the brain to more easily make contact with the delicate tissues under the skull. While moving the head, the lower CSF volume is more easily displaced, and hence, the brain can more easily move about. Careful consideration about head movements can be very important while treating this condition and adapting to it, while treating it and even waiting for it to resolve. Remember, many cases resolve spontaneously as they've come.

Upon waking, it may help to gently move the head and avoid sudden movements. This also applies to head movements while standing. The careful head movements may also aid in the healing process, since micro-tears may respond better to less movement, similar in analogy to resting a limb and hence, it's associated fractured bone.