Ask:
CSF Leak, Chest Wall side
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, and my vision is blurry, colors are off, and I have difficulty driving at night due to triple vertical vision of lights. (For example, a brake light looks like 3 lights vertical). 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 what sorts of bad things can happen by delaying a "fix" for this problem. I am really concerned about the downward placement of the brain. Recently I have been noticing numbness and tingling in my arms and sometimes my legs feel very weak. Since the leak 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.
Answer:
CSF Leak, Chest Wall side
Katy,
Sorry to hear about all your troubles. Has anyone mentioned chiari to you? You might want to check out the chiari institute I don't know if you've heard of them or not?
I'm kinda going through the same but to a lesser degree. Trying to get into this hospital.
Best Wishes, Tracy