Chiari Online Support Group

Problems with CSF, does that mean surgery advised?

#1

Hello

I was diagnosed with CM of 15mm last November, and had a CSF MRI in January. I had a letter from Salford this week stating that ‘there are problems with my CSF flow and its paramount I attend my neurosurgery appointment in April’. The letter doesn’t tell me what the problems are specifically, but that I will need to discuss treatment options. Does this mean surgery would be strongly advised? And without surgery would my symptoms worsen? Will long term CSF flow cause me any long-term problems?

Thanks in advance,

Amy xx

#2

Hey Amy,
It really depends on what they mean by ‘there are problems with my CSF flow’. CSF (cerebral spinal fluid) surrounds the brain and spinal cord. It performs a couple of roles. It nourishes the brain, removes waste and cushions the brain from impact. We produce around a pint (600ml) of CSF per day within the brain from areas called the Choroid Plexes. The fluid drains from the brain down through the spinal cord and is absorbed into the body, nourishing our nerves. If the CSF cannot naturally drain from the skull via the natural pathways we can develop a condition called hydrocephalus or 'Water on the brain", although it’s not actually water but rather a clear, nutrient rich solution.

There are a few differing types of hydrocephalus, the main two being communicating hydrocephalus and non-communicating hydrocephalus. Communicating hydro, in very basic terms, means there is some drainage of the fluid, non communicating hydro means there is no drainage or a blockage. There can also be an issue where the body’s ability to absorb the CSF produced can cause a problem.

" Does this mean surgery would be strongly advised?", Now that really depends on what the issue is. If it is an absorption issue there maybe medication that can be taken, if it’s a flow issue it maybe recommended to watch and monitor. If it is communicating, there may be enough flow for it not to be so much of an issue. If it’s non communicating it can depend on just where the blockage maybe, what’s causing it and how best to manage it. These are all questions that a neurosurgeon, with all of the scans and relevant information, would need to be consulted on.

"And without surgery would my symptoms worsen? " There can be many variables here and again it can depend on the type of hydrocephalus. If it is non communicating then (again, in VERY basic terms) yes. Producing 600ml/day and the fluid being blocked from draining can cause symptoms to worsen fairly rapidly. The skull is a sealed unit and there needs to be a balance of brain matter, blood and CSF with in it. Too much of one will decrease the space for another and this can increase symptoms.
If it’s communicating then there will be ‘some’ drainage occurring, it maybe enough to keep symptoms at a fairly stable level.
“Will long term CSF flow cause me any long-term problems?” Again it really depends on what they mean by “problems with flow” but in very layman terms, yes it can. But these are all things that need to be discussed with a qualified, knowledgeable neurologist or neurosurgeon as each person’s situation, diagnosis and prognosis can very greatly as can the treatments.

It is not unusual for medicos to send out letters with fairly vague information as they will need to fully examine the patient in consultation with the relevant scans. Personally I would suggest that if it was urgent, urgent, they would order you in before April, so I wouldn’t be stressing too badly at this point (I may make that out to be simple. I know it is not). There is very little to nothing you can do until you have had the relevant consultation, so stressing is not going to help.

My advice would be to make the appointment as requested, monitor yourself until your appointment and if you believe symptoms are increasing then get yourself to A&E.

Merl from the Moderator Support Team

#3

Thank you so much. Thats a lot of information - but really helpful! I guessed it wasn’t urgent as my appt has been moved forward, but when i received a vague letter stating there are priblens with csf flow I was concerned this would 100% mean I need surgery. Its good to know that its not always the case with ‘problems with csf flow’. To be honest i’m totally out of my depth and confused, I want to do whatever is best for my long term health, but I don’t know what treatment option is best, and I wanted to have an idea going from others experiences before seeing a neurosurgeon. Thank you xxxx

#4

Hey Amy,
I can’t think why you’d be confused (That’s me being sarcastic) None of us have any idea until we’re faced with it and then it’s all so overwhelming. The neuros deal with this sort of thing all the time, it’s normal for them. But for us the patients it’s all ‘OMG’.
Some medicos are great at giving minimal info, stressing us out, then saying 'Ohh but don’t worry…" and as soon as they say 'Ohh but don’t worry…" what do we do?.. WORRY.

As I said you really need the advice from a neurologist or neurosurgeon, they should let you know what your best treatment options are. So again, make the appointment as requested, monitor yourself until your appointment and if you believe symptoms are increasing then get yourself to A&E.

Merl from the Moderator Support Team

#5

Thanks so much for all your advice - really appreciate it! xxx