Jump to content

Recommended Posts

Hi all

I am exactly one year post PMSAH. My recovery has been decent till October, I am almost back to full time work with some minor adjustments. In November 2019, 10 months after SAH, I started having clear watery discharge from nose, thrice in 24 hours initially, then randomly about another 5 - 6 times.

 

Suspecting a CSF leak, I met the neurosurgeon. He said there is a possibility of high pressure leak secondary to hydrocephalus, so asked for an MRV, possible LP Shunt if hydrocephalus is there. Another neurologist that I know said spontaneous leaks heal on their own, so no need for a scan, just not to exert myself too much, wait and watch. Two very different opinions.

 

My 'question is- did anybody else suffer from a CSF leak after SAH? What are your experiences? I feel generally  unwell these days and my recovery seems to have slowed down in the last 2 months. My headaches are worse in duration, though not in severity.  I am not sure if it is just my stress and anxiety.

 

My fatigue is better in that I do not have those episodes where I cannot walk a few steps also, but again in general my stamina is low compared to earlier. I know you cannot give me medical advice, I just want to know the experience of others here, which always has proven useful in the last one year.

Thank you in advance.

  • Like 1
Link to post
Share on other sites

Hey Ami, did you get any taste /smell with it? did they go ahead and test to check it was CSF? 

 

If you presented with hydrocephalus as a complication at the time of the bleed then even if the high pressure corrected the ventricles can be left damaged. That was my experience and I had to go in four months after my bleed and have a VP Shunt permanently placed. I was very poorly but hard to say if that was the bleed itself as I had been hospitalised a long while, had a high grade SAH and EVD but after coming home it was like my senses shutting off one by one.

 

It was thought I may have had leaks during this time because of building high pressure which I tasted in my mouth. My GP referred me back in and I was blue lighted back to my treating hospital as it was considered an emergency situation. 

 

High pressure build up does need to be investigated. Now that I live with hydrocephalus If they suspect there is a chance of any pressure changes it has to be taken seriously and you should push to get scanned in my opinion. if there is any concern that my Shunt isn’t working then I am shuffled off for a scan to check ventricle size as this is the only definitive answer on this . And it is always a MRI not CT scan. 

 

I would get checked out to hopefully rule out hydrocephalus. The impact of any bleed across the brain surface itself is fatigue, reduced cognitive and physical stamina , short term memory deficits plus many others depending on the severity of the bleed and the location.  

 

Good luck 

Link to post
Share on other sites

Thank you Daffodil for the very prompt response.

 

I did have hydrocephalus at the time of SAH, which was mild though and need any kind of drainage. In fact it was decreasing at the time of second scan about 4 days later.

 

Now the fluid leaking is small in 'quantity, not sufficient for sampling, its most often droplets. I did not taste it, it doesn't go backwards inside my mouth. It drips from the nose on one side slowly especially when I bend forwards or strain. It is very clear, watery, not any thing like nasal mucus. I did put the drops on paper napkins thrice, it doesn't stiffen like normal nasal secretions. 

 

It looks as though the neurologist isn't convinced about the fluid being CSF in the first place. He said CSF leak is usually copious in 'quantity. 

 

Even the neurosurgeon said there was no urgency for the scan, the risk of meningitis is minimal as it is a high pressure leak.

So I am actually worried that I am thinking too much and imagining my symptoms (like head ache, low stamina etc). I have done so well so far and this is all very demoralising. 

 

Anyway thank you very much for the response, good to speak to someone who had similar symptoms.

 

How much was the 'quantity  of leak in your case?

  • Like 2
Link to post
Share on other sites

Ami, I will tread carefully here because I don’t want to get in the realm of offering medical advice but I had quite a few leaks of CSF from my burrhole when I had a EVD placed post bleed, I had the tube in for over 3weeks so it happened a fair few times..... I pulled a few tubes out apparently....and also afterwards when it was healing , which possible caused the metallic taste and can only say that if this was a CSF leak you would probably know about it instantly.

 

A sudden drop in CSF pressure( loss of fluid)  is almost  always  accompanied by awful sickness, vision issues, balance, aversion to light, and having to be motionless and lying down or at least that is my experience anyway. I experienced this after lumber punctures which I had numerous times before Shunt placing to Try and kick start my ventricles ...it didn’t work. Anyway the more fluid you lose the worse the effects  are. 

 

If you are worried do push to get checked out, any loss of CSF would require absolute rest but importantly not normal to leak for no reason. I hope that your symptoms are maybe just the impact of the bleed itself and that you doing a bit more. 

  • Like 2
Link to post
Share on other sites

Hi Ami,

Like Daffs I also had Hydrocephalus, but I was in cuckooland as it was keeping me there.  I remember nothing apart from cooking a curry then shouting "help me"  as I passed out.   I remember nothing until shunt was put in and I slept most of the time.

 

Went from Kings College to local hospital, were  my Family were told I'd never be the same and to put me in a home.

Cheek !!

 

Hubby took me home and a year on from bleed I had a shunt put in and it took me a while to sit up alone or even hold myself up.  All this I am told by my wonderful hubby and daughter.  Hubby was going to say no to op but it got me better and now we argue and moan like we did before the bleed.  So I know I am better  ha !! Keep a watch on it and forgetfulness ie short term memory loss is part of the beast.  But if worried please see a Doc as nothing like peace of mind  ...

 

Good luck My Bleed was 2009 and shunt was fitted in 2010  Still trying to walk more. !!!

Be Well Ami xxxxx 

 

  • Like 1
Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...