CSF Leak, Chest Wall Side

[Katybug57]

I am desperate for help.  I am 49 year old female with a history of Meniere's Disease and Fibromyalgia.  In June 2006 I developed an excruciating postural headache, nausea, vomiting, blurred vision, which lasted for 42 days, at which time I received high doses of Prednisone.  There is no history of trauma or accident. I'm told this is Spontaneous Intracranial Hypotension.   The Prednisone relieved the headache, although I still have daily headaches but not nearly as intense as the initial.  Prior to that even Morphine IV had not helped.  I have now been on high doses of oral prednisone and Percoset since August 2006.   Each time I try to come off of the Prednisone the headache returns, as well as severe back pain especially between the shoulder blades.  I generally have a feeling of poor health, fatigue, not sleeping well.   I feel like the life is being drained out of me.  Numerous MRI's of the brain have shown meningeal enhancement, dural thickening, and within the past 5 months downward placement of the brain.  After months of testing, including cisternogram, MRIs, spinal taps, a myleogram in March 2007 showed a CSF leak in the spine, between C-6 and T-12 (fluid is outside the dura), however the leak is on the chest wall side.  Thus far the exact site of the leak has not been determined.  I am being treated at a large teaching hospital, but none of the Doctors there have ever seen a leak on the chest wall side, so they have been at a standstill since March 2007, and have not really been able to offer me any solutions.  I am due to have a CINE MRI in August, hopefully that will show the exact site of the leak.  They say if that doesn't show it, I should have a digital myleography.  My question is do you think that a lumbar blood patch would be worth a try at this point, and if not what are my treatment options.  Since this has occurred, I have also developed high blood pressure and have osteopenia.  I don't want to have to stay on Prednisone and Percoset the rest of my life, and I so want my health and vigor back!   Thanking you in advance for any help or advice.  

[alchris]

I have all the tests done.... On my lumbar puncture test I have a weird spot on the right side that I am told it is an earring.  Strange I though it would detect leaks not an earring that I wasnt even wearing.  I have in My MRI's another white spot show up behind the sphenoid sinus but am told again its an earring very odd to me.  I keep going to one doctor after another who seem not to know how to read films but also have no clue as to how to help.  Once they hear you have had testing and been to so many doctors they seem to write you off.  You can post your email if you want and I will send the pictures just to show you some of my spots in question.    Would like to hear back to where you are going, I understand about the hospital thing to , beleive me when I say I have gone to some of the better hospitals in the ny area too and dont want to make it public knowledge.  

[Katybug57]

Hi and thank you for responding to my post.  I am sorry to hear that your daughter has been diagnosed with Chiari Malformation.  May I ask if hers is congenital or acquired?   I have the brain sagging features that look like a Chiari, but I am told it is due to the fact that I have the CSF leak, that there is not enough CSF Fluid circulating to keep the brain "afloat", thus the sagging.  In other words, the leak came first, and the sagging is a result of the leak.  If they can fix the leak, the brain should return to it's normal position is what I am told.  

Wishing you and yours all the best.

katybug57

[Katybug57]

Thanks for responding to my post.  I too can certainly sympathize with you.  Dealing with chronic pain is not easy.  Thanks for your advice.  No, I've had no fall or injury.  The headache began as postural,  with sudden onset, severe excruciating pain, long before I ever had any spinal taps done.    I had to bend over at the waist in order to walk.  Lying down eased it but it never went away completely while lying down.  As I said it lasted for 42 days, at which time I was given high doses of Prednisone which has eased the pain.  I continue on the high dose of Prednisone now, along with pain kiilers.  I have been on high doses of Prednisone for almost 1 year.  I call them my ugly pills because I am dealing with the weight gain, puffy face,  etc.  But I have no choice, as I said each time I've tried to come off of the Prednisone I revert right back to an excruciating postural headache.  With that headache not even morphine touches it.  You asked what does the CINE MRI and Digital Myelography do.  The CINE MRI tracks the flow of spinal fluid, in a cinema like format, thus the term CINE.  It is most commonly done in the brain but I am told it can also be done for the spinal column.  It is non-invasive.  The Digital Myelography requires a lumbar puncture and they inject dye into the spinal fluid, then perform a series of CT and MRI scans.  It is supposed to be much more sensitive to details than just a plain myleography.  The hope is that one of these tests is detailed enough to show the exact site of the leak.  My Doctors suspected a leak from the beginning but they all say that they are sometimes difficult to detect, as they may not leak all the time.  If they don't do the test while you're leaking, it may not show up.  It took 8 months for my diagnosis.  And now 4 months into the diagnosis, no treatment plan to fix me!    I am hoping that someone on this forum knows someone that has had a leak on the chest wall side, or can point me to a Dr. with experience in this area.  The hospital that I am going to is a large teaching hospital, with many Neurosurgeons and Neurologists, none of whom have seen it on the chest wall side.

In your case, since you feel like something is draining in your ear, have they done CT scans and MRI's of your head?  Have they done a Cisternogram on you?  If not, if I were you I would definitely ask for those tests.  You might also ask for a Beta-Transferin test.  You didn't say if your headache is postural (worse when standing or sitting, relieved by lying down).  Usually if you have a leak it will be a postural headache, at least in the beginning.  What about your spinal fluid pressure, is it low?

I sincerely wish you the very best, and hope that they get to the bottom of your problem soon.  Don't give up.  If you post your email address I will share with you what hospital I am going to, I don't really want to say in a public forum.  I hope you understand.  

Warmth,

katybug

[soreeye]

have you been checked for chiari arnold chiari malformation look it up my daughter has been dianosed with it and your systoms sound very familar let me know what you find out  justfired2comcast.net

[alchris]

I greatly symptathize with you.  I have had headaches that wont go away for over two years and a pressure that builds up on the side of my head that I actually feel fluid draining into my ears.  I have been tested for everything including CSF leak myself and they cant seem to find it.  Since they believe they found the leak maybe you can take your films to another hopsital/doctor and let them see if they see the exact site.  If it were me I would try a blood patch in that area to see if it would help but that is me.  I cant figure out how they can say they dont know the exact spot especially when you have it that detailed.  But I would go to another doctor with those results.  If you dont mind me asking what hospital.  I know for my self i have anothe appointment with a doctor to see if this new doctor can see anything in my films that someone maybe missed.  What does the CINE MRI and didgital Myelodgrapy do, I myself would like to look into for myself.  I also learned just because we here its a good teaching hospital doesnt always mean that every person in there will either see the area in question the best or have heard of the leak on the side you have it.  I have been told by many doctors its impossible to feel the fluid, but reading this site time and time again I have had seen posts with similar symtoms as mine, so my opinion is if the doctor hasnt seen or heard of it, they treat it like it doesnt exist and the patient is somewhat wrong.  But we all know how we feel and when somehting is wrong.  Did you have a fall or something for the leak to happen where it did.  Or did the lumpar puncunture cause the leak, which it sometimes can.