Hydrocephalus?

[Ds30901]

I recently was referred to a neurologist by my GP following some problems I was having (i won’t go into detail). He neurologist then referred me for an MRI of my brain to make sure there were no major issues.

I saw the neurologists registrar yesterday and he advised me that the MRI showed there was an amount of fluid at the back of my brain. However, he said that nothing needs to be done about this especially considering some (not all) of my symptoms have subsided over recent months. He believes it is an after affect of a severe brain injury I had when I was 5 years old.

I’ve been reading into hydrocephalus and all of the symptoms that are still present match the condition so I’m a little bit confused as to what to do, mainly because I can’t find any information on the condition where it isn’t treated by surgery. I wasn’t told about any other options regarding it at all.

Is there anybody here that has any knowledge or experience of the condition? Particularly anybody that has been given the same sort of information as myself. I’m contemplating going back to my GP to see if he can give me any medication to treat it.

[cat3]

Hi Ds. I know of no medical treatment for hydrocephalus as the aim for relieving symptoms is to physically drain away the excess fluid to the abdomen by means of a shunt, or an endoscopic procedure within the brain to divert flow around the brain.

If you're not happy with the lack of treatment and still having symptoms perhaps your GP would refer you for a second opinion. I don't know your age but it seems odd to be have had untreated hydrocephalus since the age of 5. Does the neurologist you saw plan to do a further scan to monitor the issue ?

Cat x

[Ds30901 in reply to cat3]

I’m 28. I’ve never had any follow ups in relation to the TBI (I suffered a depressed skull fracture and a bleed on the brain).

I started getting strange symptoms about this time last year and knew all along something was wrong despite being told otherwise.

The doctor I saw said that as I had seemingly got better (although looking back I probably didn’t explain things very well) over the last couple of months then no more treatment was needed and he has discharged me. I just think it’s a bit strange that everything I’ve read about this says that it needs to be treated with surgery yet I wasn’t offered that as an option.

[cat3 in reply to Ds30901]

Go back to your GP m'love and strongly request a second opinion. And get some back-up from Headway =

headway.org.uk/‎

0808 800 2244

Good luck, and let us know how you get on. xx

[Smithybadger60]

I was diagnosed with Obstructive Hydrocephalus when I was 15 and have since had 6 Brain Shunts over a 45 year period and more recently underwent a Endoscopic Third Ventriculostomy. My symptoms have largely been consistent in that the increased intracranial pressure causes severe headaches and issues with my eyesight. I was always advised that Hydrocephalus needs to be carefully monitored as if neglected can cause lasting brain damage or indeed can be life threatening. I am clearly not an expert in this area , but if your Neurologist or Neurosurgeon having examined your MRI scan ,is not suggesting medical intervention then perhaps it is not so critical. That said as other responders have suggested I would get a second opinion. Best of luck.

[Pip70]

Hi there! I too have hydrocephalus but unlike you was born with it! I had no symptoms til my teenage years and no treatment(surgical is the only way🙁) til my 30’s.

I am now the ripe old age of 48 and unfortunately unable to work(old me was a staff nurse)or walk any distance unsupported. I am lucky enough however to have packed in plenty before my symptoms worsened and now have a loving family to help me and put up with me! Keep smiling it’s all about accepting the ‘new you’ 😀Kate

[martinbradley]

Hi my name is Martin i have hydrocephalus NPH.I AM 54 YEARS OF AGE.i had a vp shunt fitted back in October, my 3 main symptoms were memory loss, urinary problems,and my walking i felt as if my feet were stuck to the ground or i was shuffling when walking. was sent for a C T scan found fluid on my brain.Not long after i had the operation.

[Ds30901]

Thank you for the replies.

It’s strange because I can’t find anything from anybody where they had a small amount of fluid on their brain so they did not need surgery.

My symptoms have been cognitive problems, urinary problems, chronic pain in my lower back, neck and legs, I also went through a period where my walk was very odd and still isn’t normal. The feeling of being frozen to the ground is familiar. I’ve always suffered with headaches but I’ve sort of gotten used to them over time.

I think I’m gping to go back to my GP.

[martinbradley in reply to Ds30901]

Go back to your gp ask for a scan they may able to see if there is more fluid build up one my VP shunt was fitted i was up and walking great the next day.

[Silmarillion]

I was started on diamox(acetazolomide) as I had a bit ofhydrocephalus causing intercranial hypertension after my sub arachnoid. I also have lumbar punctures to drain the fluid off.ive been having this treatment for over a year. I still get awful headaches rather than one single long continuous headache.

My symptoms are/were severe headaches, nausea and vomiting, stiff neck, photophobia, lower back pain, extreme fatigue. My headache specialist is monitoring me to see if I need a shunt, but for now I’m responding to medical management