Scared and looking for info
 

Hi, I'm new to the sight, I was diagnosed 2 weeks ago with a spontanueos cerbrospinal fluid leak after 2 months of the worst pain I have ever experienced and vomitting every time I tried to stand up. I went through being treated for tension headaches and migrains and given various painkillers which really didn't do much for me. I had a ct scan with dye done which showed some abnormalities and so was sent for an MRI with dye which led to my diagnosis. My nuerologist put me on bed rest and wanted me to drink lots of fluids. She said that since she didn't know where I was leaking this was the first thing we would try and if it didn't work then they would do more tests to try to locate the sight of the leak. Luckily I have now been headache free for 3 days! I still have this ringing in my ears that won't go away but I have been able to function for the first time in 2 months. What scares me though is that after reading the posts on here it seems as though this is not something that just goes away. Is this going to keep happening to me? Or are the cases where people only have it happen once? Should I be worried about the ringing in my ears? Any info would be greatly appreciated! Thanks!

Hi Jackie

Sorry you have had to go through this. I truely sympathise as I know the feeling of those awful headaches. I have had two leaks, now luckily they didnt last as long as yours. My leak is due to a large Tarlov Cyst/Dural Ectasia at the survical spine area. Its really the luck of the draw if you will suffer again with a headache or if it is a one off. It depends where the leak was from. I suggest you drink lots of caffene if you can and as pain killers, we here in Ireland can get an o.t.c. drug with caffene and codiene in it which helps hugely with the pain.

Good luck.

Thanks for the reply! I already drink a pot of coffee a day so any increase will have to be in pill form! lol I guess at this point I will just have to be gratefull every day I wake up pain free. It's just been very frustrating because no one seems able to tell me where the leak is or why it happened or how I can prevent it.

Hi Jackie...
 

I am not diagnosed but being treated and all symptoms point to csf leak. I know how you feel and not sure how to feel either. I have had my life on hold for nearly 2mths now and can't even imagine what others have been going through and terrified now of what could happen. GL Jackie...

Question about caffeine and CSF leak
 

I have read several blogs and articles and many people mention caffeine. What does it help with? Does it help dura to heal? Does it stop the leak? Does it help headache? I am trying to find something....anything that will help dura heal. Does anybody know any remedy?
Thank you!
:confused:

My underestanding is that the caffeine increases the CSF pressure in your body. If you're leaking, it won't help heal the dura, but if you've been patched or shunted, and the CSF level is too low, try caffeine pills when coffee gets to be too much for you.

After the surgery
 

Thank you! It's been 2 weeks after the surgery to patch the dura and stop the leak. I still have ringing in my ears and don't know whether it's a sign of a leak or not. Still drinking a lot of coffee every day... still don't know whether CSF leaking or not... :confused:

CSF surgery on Tuesday
 

I am having the surgery to sew up the dural leak in my lower spine on Tuesday. I had L5 S1 discectomy on November 22 and sprung a leak. I have had 2 blood patches and have been on bed rest for 5 weeks now. I was curius on how long you were hospitalized, etc. Can you share the details?

Hi there, I am just wondering how you are travelling these days with your leak??