CSF Leak for 4 months

[mitul74]

Hi ,

I have CSF leak for 4 months now. I have gone through 2 blood patches, without any improvement. I get terrible headaches at the back of my head after a while when I stand up. The consultant and the treating anesthetist who carried out the procedure in King's College Hospital, London, UK is unwilling to admit that it is a leak. It was only when I had collapsed while at my local hospital, that a SHO advised that it was a leak, After 2 blood patches at the hospital, I did not recover.

Now I am sometime getting headaches while I am still lying down. The present neurologists advises that I have had a CSF leak, but it has healed.

As life is unbearable know, I would like to know more information:

1. What are the ways I can identify and confirm that there is a leaf ? Is there a non-invasive procedure which can detect the leak ?
2. Is there anybody out there who has carried out neurosurgery for this.
3. Which country was this carried out? Is there any contact details of the neurosurgeon where I may contact and find out if this is an option.What steps was taken to identify and carry out the repair of the leak? How long did it take to see a neurosurgeon?
4. How long should it take to heal if I do lie down?

Kind Regards

[Goldy72]

Hi,

I had a tear in my dura, they couldn't locate it until we forced the doc to do a contrast and then do a MRI as the dye was being administered. Finally located the tear, spinal fluid leaking like a fountain. They did a blood patch at the tear site  with my own blood and I had to lay on my back for 1 week. It healed. Lie on your back for 1-2 weeks, if it doesn't heal on its own, they need to LOCATE the leak, without it blood patches are useless. I know how miserable this problem is. I wish you well.

[sllowe]

This isn't the link to what I mention above.  But, it's simple info on the leaks from a reputable hospital here in the states. Hope you are able to use some of this to convince your Dr. look at least into minimally invasive dx techniques so all know what you are dealing with.

      http://nyp.org/health/cerebrospinal-fluid-leaks.html

-shell

[sllowe]

Hi, welcome to the forum.  I've read a few things on reoccurring spinal fluid leaks in the past, but I did not save the source info.  

From what I recall, there are some conditions in the spine that can cause this to happen over and over again.  I know that doesn't help you very much right now, but hope it gives you some reasurrance that it can, and does happen.

It's going to be important to press the Dr. for imaging (like said above).  A classic leak can be horrifying vice like (some milder) pain at the base of your scull that subsides upon laying flat, but immediately fires back up when you stand.  

I'm not sure of all the tests, but would start with suggesting CT or MR myleography to them.

My leak occurred 3 days after the LP. Once it happened I was advised to lay flat for 24 hours. I layed longer, more like 48+ and that did work eventually.

Prior to the patches, do you remember any imaging?

So sorry you are going through this.
-shell

[Amyloo]

Wow, that is such a bummer.  I have had two spinal headaches with two blood patches, and I know the process is not fun at all.  I think maybe the Dr. Quix is the one who may be able to shed some light for you.

As far as tests, the only thing I can think of to definitively tell if it is a leak is to check the spinal fluid pressure, which of course involves another tap.  No thanks, I am sure.  God bless you, I will pray for you.  

[Sarahsmom46]

I am also sorry to hear you have not recovered from the LP.  I have never heard of a leak going on so long. The linig within spinal chord where the puncture has to be made is quite durable and repairs itself within days to stop leaks, but yours sounds like it is not behaving in the normal fashion.  You must be experiencing a very rare complication to this procedure.  I'm not sure if surgery will fix the problem, but then again it depends on what they find went wrong.

As far as non-invasive tests to see what is wrong, the only thing I can think of that may help figure out if this is really a leak or something else is to do an MRI with contrast of your spine.   I would bring this up with your doctor.

I hope you get better becaue we all know too well how really miserable the post-LP headache is.  

Hang in there.

Julie

I hope they can figure this out and get you some relief.  

[Lulu54]

Hi Mitul,
Welcome to the ms forum here at Medhelp - I am so sorry to hear you are continuing to suffer from your LP.

I'm also sorry to say I have never heard of a lp headache lingering this long.  You can't possibly be able to function at any level with the head feeling like it wants to implode or explode.  

I don't know the answers to any of your quesitons because this is such an unusual situation.  After all this time one would think that the leak had finally healed itself.

I hope you get some answers and even more, I hope you get some relief soon.

my best,
Lulu