aberlour
10-02-2006, 10:42 AM
Hello, I've been checking back continually from Greg's site at csfleak.com to see if there was any news on the forum being up - although I didn’t previously post here I did find this CSF forum a good source of information and reassuring for a rare and difficult to treat condition, especially in the beginning when I had no idea what CSF was and was in awful pain and utterly terrified. Many thanks to all those who have worked so hard to get this forum back up and running, I am sure it has been a very arduous process.
I have spontaneous CSF leaks, spinal and rhinnorrhea – these occur in me for no apparent reason.
I was diagnosed earlier this year. I’ve been through all the tests - cisternograms, scans, MRI, CATs - the leaks in my spine were proven beyond doubt with radio nuclear dye and fixed with multiple blood patches – lumbar and upper thorasic.
Before the location of the spinal leaks were identified I lost a lot of CSF fluid which caused my brain to ‘sink’ pulling away from the sinus area, because of my congenital weakness of the dura matter we believe small 'head' holes were created then. It was hoped that following the spinal patching that the brain would return to normal position and the ‘head’ holes would heal naturally, of course with my luck they didn’t and I continued to show small drops of clear fluid leaking from my nose months after the brain had returned to normal position following successful spinal patching. The nose droplets occurred at the same time every day - in the morning when I stood up, they would appear like clockwork. Occasionally they would also appear when I ran, laughed too much or sneezed, sometimes following a headache or pressure which would be relieved when the fluid appeared (the fluid is nothing like normal nose mucus, its very clear liquid, like water) but I was never able to get enough fluid for it to be tested. Despite tests, scans and dye it was very hard to prove where the dura 'head' holes were located but because of the risks of having those holes the doctors recommended surgery patching the area typically known in CSF rhinnorrhea cases. I am very fortunate to have absolutely excellent healthcare with doctors I truly trust so we did the surgery last Thursday, the 21st. I was in hospital for about 5 days then home for bed rest. I have been slowly recovering and I feel fine, a bit achy of course. I hope this has patched the ‘head’ holes but I won’t be too disappointed if the surgery did not work or only works temporarily – I am learning through experience and from this forum that CSF leaks are not easy to treat, sometimes placing too much hope in one operation can lead to a lot of disappointment.
I face this condition as a long term illness, I don’t know if its possible to be leak free forever in my case because I believe it’s a congenital weakness, I believe I have a weak dura, for whatever reason this ‘matter’ does not have the normal durability of the average person. I found the spinal holes did impact my quality of life badly causing terrible headaches and illness but once they were 'blood patched' I improved greatly. The ‘head’ holes do not cause as many headaches or illness and I did manage to maintain a normal quality of life even while leaking, it may not be possible to find or patch these, and the meningitis risk ever present, but I do believe everything medically possible to help me is being done. If they cant be patched I don’t think it’s 'medicines' fault.
I realize I am the exception in many cases here because some sufferers have atrocious healthcare stories. When I first began to suffer from CSF leaks I did go through multiple doctors and some ill advised, painful tests and treatment but I did not give up hope and finally I found great doctors who help me so much, compassionate and brilliant.
I hope this post gives some hope to others who suffer from this confusing and debilitating condition.
I have spontaneous CSF leaks, spinal and rhinnorrhea – these occur in me for no apparent reason.
I was diagnosed earlier this year. I’ve been through all the tests - cisternograms, scans, MRI, CATs - the leaks in my spine were proven beyond doubt with radio nuclear dye and fixed with multiple blood patches – lumbar and upper thorasic.
Before the location of the spinal leaks were identified I lost a lot of CSF fluid which caused my brain to ‘sink’ pulling away from the sinus area, because of my congenital weakness of the dura matter we believe small 'head' holes were created then. It was hoped that following the spinal patching that the brain would return to normal position and the ‘head’ holes would heal naturally, of course with my luck they didn’t and I continued to show small drops of clear fluid leaking from my nose months after the brain had returned to normal position following successful spinal patching. The nose droplets occurred at the same time every day - in the morning when I stood up, they would appear like clockwork. Occasionally they would also appear when I ran, laughed too much or sneezed, sometimes following a headache or pressure which would be relieved when the fluid appeared (the fluid is nothing like normal nose mucus, its very clear liquid, like water) but I was never able to get enough fluid for it to be tested. Despite tests, scans and dye it was very hard to prove where the dura 'head' holes were located but because of the risks of having those holes the doctors recommended surgery patching the area typically known in CSF rhinnorrhea cases. I am very fortunate to have absolutely excellent healthcare with doctors I truly trust so we did the surgery last Thursday, the 21st. I was in hospital for about 5 days then home for bed rest. I have been slowly recovering and I feel fine, a bit achy of course. I hope this has patched the ‘head’ holes but I won’t be too disappointed if the surgery did not work or only works temporarily – I am learning through experience and from this forum that CSF leaks are not easy to treat, sometimes placing too much hope in one operation can lead to a lot of disappointment.
I face this condition as a long term illness, I don’t know if its possible to be leak free forever in my case because I believe it’s a congenital weakness, I believe I have a weak dura, for whatever reason this ‘matter’ does not have the normal durability of the average person. I found the spinal holes did impact my quality of life badly causing terrible headaches and illness but once they were 'blood patched' I improved greatly. The ‘head’ holes do not cause as many headaches or illness and I did manage to maintain a normal quality of life even while leaking, it may not be possible to find or patch these, and the meningitis risk ever present, but I do believe everything medically possible to help me is being done. If they cant be patched I don’t think it’s 'medicines' fault.
I realize I am the exception in many cases here because some sufferers have atrocious healthcare stories. When I first began to suffer from CSF leaks I did go through multiple doctors and some ill advised, painful tests and treatment but I did not give up hope and finally I found great doctors who help me so much, compassionate and brilliant.
I hope this post gives some hope to others who suffer from this confusing and debilitating condition.