CSF leak and Blood Patch

[jec]

Approximately 2 years ago I had a lumbar puncture to check for meningitis.  Two weeks later I went back for a blood patch which relieved most of the pain resulting from an apparent CSF leak.  In the following 20 months I actively sought medical treatment for chronic head pain and Migraine.  This involved numerous neurologists and head pain clinics.  Not only did none of the treatments provide relief, my condition worsened.  Six weeks ago, per my request, I began a series of tests (radioisotope cisterograph, CT myelogram, MRI, and CAT scan) and it was determined that I had multiple CSF leaks at four levels.  We
then scheduled a second blood patch.  I had that blood patch five days ago.  We knew going in that this particular situation might require several blood patches however, rather than any improvement I wound up back in the ER with severe head pain (identical to the meningitis pain).  I have scheduled another blood patch but I have concerns.  My question is this, is there any chance that the blood patch therapy would be creating further complications, and if so are there alternatives?  Thank you for any information as my doctors are at somewhat a loss due to the extended period of time involved.

[CCF-Neuro-M.D.-JT]

Sorry to hear about your symptoms. It's concerning that you have "multiple" CSF leaks that appear to be ?spontaneous as they have seemingly occurred in the absence of spinal surgery, spinal cord deformities, or a history of serial spinal taps. I don't know if anyone's discussed this with you. But if someone has and you're satisfied with the diagnosis, then treating the leaks should theoretically help with the headache if that's what's causing it. Traditionally, blood patches and caffeine have been the mainstays of treatment. For spinal leaks higher up in the skull, they use a special type of fibrin glue. However, if you really have multiple leaks, you may consider seeing a neurosurgeon to see what they have to offer.

Also, think about having your workup done at a major academic institution if you already haven't. An MRI of the brain with dye may show enhancement of the covering of the brain if there are multiple spinal leaks, pointing out that this is the problem. But it could mean other things too. It may be worth it to have an academic neurologist take a fresh look at you, rather than just an outside pain doctor. Good luck.

[JennZA]

Jec,
Were you told what your CSF level was?  I have been having migraines for 8 1/2 years.  A couple a weeks ago I was hopitalized because of my migraines.  My neurologist did a 2nd spinal tap (I had the original one 8 1/2 yrs ago)  He said my pressure was low.  I felt like it was leaking from the orginal spinal tap.  The anetheogists refused to do a blood patch and it is trying to treat it with medication.  I have been on over 60 + medications over the past 8 years.  Nothing phases my migraines.  I have continuosly.  I have you found any medication that works?   I was hopitalized at UAB which is a teaching hospital has the doctor suggested to you.  So far, they have not help me.  Your thoughts, please.
JennZA

[jackiep]

I STILL HAVE THIS DREADFUL CSF LEAK.  I AM AT THE POINT NOW THAT I THINK I WILL DIE FROM THIS REALLY SOON.   I FEEL IT ATTACKING MY CNS SO BAD THAT MY SYSTEM SHAKES WHEN I LAY DOWN AFTER BEING UP AND I AM FORGETTING THINGS.  IS ANYONE ELSE EXPERIENCING THIS? MY OTHER GENERAL SYMPTOMS ARE PAIN IN MY FEET, I FEEL WHEN I STAND UP THAT MY PRESSURE IS SO LOW THAT I AM BEING PUSHED DOWN FROM IT AND I CANT MOVE. THE LAST TIME THEY TOOK MY PRESSURE THE DOCTOR SAID, IT WAS TOO LOW TO MESSURE.  SORRY, I DIDNT GO INTO  MY STORY BUT IF SOMEONE HAS THIS PROBLEM AND CAN OFFER ME SOME HELP BEFORE I GET REALLY SICK. I HAVE ABSOLUTELY NO LIFE RIGHT NOW AND IM A YOUNG GIRL.....PLEASE WRITE . THANK YOU ....

[Jolene]

I suffered from a large CSF leak, and it took 12 days to diagnose.  After two blood patches and some med treatment, I was referred to a wonderful nuerosurgeon.  My leak was surgically repaired.  It is four weeks today, and I have approximately one headache daily, lasting 10-45 minutes.  I urge you to seek a reputable surgeon. I experienced the same TERRIBLE pain you are and I also had no life.  I couldn't even sit up!  Please get yourself to a surgeon.

[Jolene]

I suffered from a large CSF leak, and it took 12 days to diagnose.  After two blood patches and some med treatment, I was referred to a wonderful nuerosurgeon.  My leak was surgically repaired.  It is four weeks today, and I have approximately one headache daily, lasting 10-45 minutes.  I urge you to seek a reputable surgeon. I experienced the same TERRIBLE pain you are and I also had no life.  I couldn't even sit up!  Please get yourself to a surgeon.

[Jolene]

I suffered from a large CSF leak, and it took 12 days to diagnose.  After two blood patches and some med treatment, I was referred to a wonderful nuerosurgeon.  My leak was surgically repaired.  It is four weeks today, and I have approximately one headache daily, lasting 10-45 minutes.  I urge you to seek a reputable surgeon. I experienced the same TERRIBLE pain you are and I also had no life.  I couldn't even sit up!  Please get yourself to a surgeon.

[Danspd]

I was finally diagnosed with csf leaks at the T3 through the
T8 level, a couple of small tears and 1 large one. It took
over a month to convince my doctor that it wasn't stress
headaches even though I told him my pain went away completely upon lying down and resumed when sitting up. I finally had a
blood patch done and it worked great for ten days. The headaches
returned but were a little different in that the pain wasn't
receding upon laying down like before. After ct scan I was
diagnosed with an acute subdural hematoma which needed surgery
right away. After the surgery another patch was done and so
far I am feeling fine. (It's has been 4 weeks)

All I'm trying to say is, take this leak problem seriously as
in my case the leak caused the hematoma and they can kill you
in a very short time.

[auntie crow]

My problem started with Spondylolisthesis on L5/S1 4 years ago I had a succesful fusion and decompression but had a bad fall 4 months after. This was ignored for 6 months untill I was in so much pain and so swollen it was discovered i`d broken 1 screw and ripped 3 out. I had a repair but could`nt stand on right leg and had whole body oedema then headaches started and kept being sick,feeling faint and pain in bottom of skull. Now 4 years later have been told this is affecting my heart i`ve had another fusion but was left for the assistant to sew me up and all the stitches gave way 3 days after the operation. I had an injection of cortisone at a clinic with my surgeon it`s now a year after and my back is still weeping, i`ve always got a runny nose i`ve gained 56Ibs of fluid and my head has changed shape. But I am hanging on the best way I can and would say to anyone, it`s your body you know it better than anyone else and you have to keep fighting for it. I am now pushing for treatment yet again and i`m determined i`m going to get it!

[Michelle567]

A related discussion, CSF LEAK was started.