GingerLox
01-09-2007, 02:10 AM
Hello CSF leaker Forum.....................I didn't know exactly where to jump in on the posts since so many were of interest to me..........but I especially wanted to give a call out to Ed. Reading your post is as if I am reading my own story!
There used to be a braintalk forum of which I was a member, but it was taken down and all was started from scratch again, including registration. There were several cranial leakers that would post on it. They still are not on this forum as of yet. I hope they rejoin so that we can see what progress they have made and how they got there. I do recognize Dagaz as a past forum member with many spinal csf leaks. I see that you are still fighting this CSF battle, eh, I am so very sorry.
Let me fill in the background a little........................Connecting the dots to determine which order of health events took place first, somewhat like which came first the chicken or the egg, has sent me off into many different directions to find answers. Here is where things stand to date;
14 years ago I fell on the ice. I momentarily bent my spinal cord in a 90 degree angle. At the time I experienced spinal shock and was paralyzed for 15 minutes. I was taken by ambulance to the hospital, and was evaluated and xrayed. It was thought that I had badly sprained my back, and that was thought to be the end of that. For 6 months following, I had a warm, spreading sensation coming from the site of the bend. We had thought that I was bleeding internally from the area, but no blood was seen on further scanning. In retrospect, I am sure that was a spinal csf leak that finally healed on its own.
Fast forward a bit..........I started having many health problems. Problems that included miscarriage, heart problems which eventually landed me with a pacemaker, kidney failure, lung disease, hypothyroid, pituitary diabetes insipidus, vasculitis, blood disorders, and so on. You name the organ system, it was affected. After the safe birth of my second live birth high risk pregnancy, I was diagnosed with Lupus.
Fast forward again.........I was diagnosed with Dysautonomia. Dysautonomia is the malfunction/damage to the brainstem which controls the body's automatic functions such as blood pressure, heartrate, body temperature, digestive systems, bladder control........basically it was told to me that anything that needs to squeeze to work was now impaired. The brainstem is at the base of the brain and top of the spinal cord which was apparently injured years before in that bad fall. I went to Mayo regarding autonomic impairment and found it to be a disappointing visit. I have a doc in Ohio that is a specialist in this little understood area of the brain
So 3 years ago........after many years of being treated by ENT doctors as having chronic sinusitis......it has been determined that I have a CSF leak. I am now sure that this leak is related to my original fall. I have been to many local docs who referred me on as they each saw the nose leak in progress. I am now with a doctor in Kansas City who is a world class doc as well as person. He has asked me each visit to stick it out with him....typically it is the other way around! He has been baffled given that I have bilateral rhinorrhea and bilateral otorrhea. By the way, I saw Dr. Mokri, and he is a great guy, no doubt a great physician, but he dismissed the diagnosis several years ago when one of his colleague's told me that there was no way I could know if there was fluid in my ears without a perforation in the eardrum. Although, I did have a positive beta transferrin reading on one of my pledgetts used during my cisternogram. I was disappointed in them to say the least.
My current ENT did a flourescein dye test (which resulted in a secondary csf leak and blood patch) last year, but after my visit with him today, he is scheduling another flourescein and cisternogram within the next couple of weeks.
My symptoms are surprisingly, not severe headaches, fluid running in my ears and into my sinuses, and a recent increase in fluid down the back of my throat, where I must swallow to get it down. I can actually record the sound of the fluid dripping through my ears. My husband can hear it with a stethoscope. It makes me want to return to Mayo just so they can know that fluid in the ears is possible! Unlike Ed, I have been able to collect the fluid from my nose, and I have yet to get it to show positive for Beta Tranferrin, and I believe this is because the fluid that comes through my sinuses is secondary from the eustachian tube. The fluid collects in the sinuses when I am laying down (the reservoir sign) and comes out when I am upright. If the fluid is in the sinuses until I am upright, and then comes out later the 3 hour threshold for protein exposure is up....hence, the protein can no longer be found. Although, I am positive for glucose.
The worst part, which my doctor finds hard to explain, is that I can feel the fluid seep into tissue as if it has found a route out into my body. I feel the warm, itching, creeping, burning (like salt on raw tissue), feeling in my shoulder blades, in between the blades, in my left breast which swells with fluid, and recently in my lower back. I had a mammogram, a carotid artery scan, and echocardiogram to try to figure out what was causing the sensation. Then I realized if I layed on the side of my head with the ear that leaked the most, I would wake up with these symptoms on that side of my body. At night, I wake up with night sweats and I now feel that too, this is my body removing the excess fluid from this tissue. The symptoms improve after a good fever/sweat. And very oddly, before the leak increased to the degree it is now, I would suffer with fluid buildup above my ear, even on the scalp. My husband said that my head actually smelled like mildew. I would have small bumps on my scalp full of fluid just waiting to drain. Now there is little buildup and more direct draining through the eustachian tube. The days in which I drain less, I get a headache with the scalp bumps. Once I lie down on the offending ear, it releases the pressure.
And to bring this full circle.........I think the fluid that escapes into my tissue either irritates my Lupus or caused it in the first place, with its protein that doesn't belong in other body tissue than within the dura. I believe when the leak is finally found it will be at the base of the skull, next to the brainstem.........
Maybe all because of that one icy morning!
thanks for my moment to explain
GingerLox
(and Ed, if it helps I think that the fluid pressure coming out from the skull is less susceptible to menengitis given the theory that was mentioned that the germs would have trouble swimming against the stream. I have found that when I begin a cold, the fluid washes away the germs quite quickly. I would suggest that you stay somewhat upright while fighting your current infection to try to work with gravity to keep the infection from going back into the area of the leak.......like plumbing.) The Mayo neurosurgeon told me to know the signs of menengitis and be hypervigilant in the event that any symptoms arise.
There used to be a braintalk forum of which I was a member, but it was taken down and all was started from scratch again, including registration. There were several cranial leakers that would post on it. They still are not on this forum as of yet. I hope they rejoin so that we can see what progress they have made and how they got there. I do recognize Dagaz as a past forum member with many spinal csf leaks. I see that you are still fighting this CSF battle, eh, I am so very sorry.
Let me fill in the background a little........................Connecting the dots to determine which order of health events took place first, somewhat like which came first the chicken or the egg, has sent me off into many different directions to find answers. Here is where things stand to date;
14 years ago I fell on the ice. I momentarily bent my spinal cord in a 90 degree angle. At the time I experienced spinal shock and was paralyzed for 15 minutes. I was taken by ambulance to the hospital, and was evaluated and xrayed. It was thought that I had badly sprained my back, and that was thought to be the end of that. For 6 months following, I had a warm, spreading sensation coming from the site of the bend. We had thought that I was bleeding internally from the area, but no blood was seen on further scanning. In retrospect, I am sure that was a spinal csf leak that finally healed on its own.
Fast forward a bit..........I started having many health problems. Problems that included miscarriage, heart problems which eventually landed me with a pacemaker, kidney failure, lung disease, hypothyroid, pituitary diabetes insipidus, vasculitis, blood disorders, and so on. You name the organ system, it was affected. After the safe birth of my second live birth high risk pregnancy, I was diagnosed with Lupus.
Fast forward again.........I was diagnosed with Dysautonomia. Dysautonomia is the malfunction/damage to the brainstem which controls the body's automatic functions such as blood pressure, heartrate, body temperature, digestive systems, bladder control........basically it was told to me that anything that needs to squeeze to work was now impaired. The brainstem is at the base of the brain and top of the spinal cord which was apparently injured years before in that bad fall. I went to Mayo regarding autonomic impairment and found it to be a disappointing visit. I have a doc in Ohio that is a specialist in this little understood area of the brain
So 3 years ago........after many years of being treated by ENT doctors as having chronic sinusitis......it has been determined that I have a CSF leak. I am now sure that this leak is related to my original fall. I have been to many local docs who referred me on as they each saw the nose leak in progress. I am now with a doctor in Kansas City who is a world class doc as well as person. He has asked me each visit to stick it out with him....typically it is the other way around! He has been baffled given that I have bilateral rhinorrhea and bilateral otorrhea. By the way, I saw Dr. Mokri, and he is a great guy, no doubt a great physician, but he dismissed the diagnosis several years ago when one of his colleague's told me that there was no way I could know if there was fluid in my ears without a perforation in the eardrum. Although, I did have a positive beta transferrin reading on one of my pledgetts used during my cisternogram. I was disappointed in them to say the least.
My current ENT did a flourescein dye test (which resulted in a secondary csf leak and blood patch) last year, but after my visit with him today, he is scheduling another flourescein and cisternogram within the next couple of weeks.
My symptoms are surprisingly, not severe headaches, fluid running in my ears and into my sinuses, and a recent increase in fluid down the back of my throat, where I must swallow to get it down. I can actually record the sound of the fluid dripping through my ears. My husband can hear it with a stethoscope. It makes me want to return to Mayo just so they can know that fluid in the ears is possible! Unlike Ed, I have been able to collect the fluid from my nose, and I have yet to get it to show positive for Beta Tranferrin, and I believe this is because the fluid that comes through my sinuses is secondary from the eustachian tube. The fluid collects in the sinuses when I am laying down (the reservoir sign) and comes out when I am upright. If the fluid is in the sinuses until I am upright, and then comes out later the 3 hour threshold for protein exposure is up....hence, the protein can no longer be found. Although, I am positive for glucose.
The worst part, which my doctor finds hard to explain, is that I can feel the fluid seep into tissue as if it has found a route out into my body. I feel the warm, itching, creeping, burning (like salt on raw tissue), feeling in my shoulder blades, in between the blades, in my left breast which swells with fluid, and recently in my lower back. I had a mammogram, a carotid artery scan, and echocardiogram to try to figure out what was causing the sensation. Then I realized if I layed on the side of my head with the ear that leaked the most, I would wake up with these symptoms on that side of my body. At night, I wake up with night sweats and I now feel that too, this is my body removing the excess fluid from this tissue. The symptoms improve after a good fever/sweat. And very oddly, before the leak increased to the degree it is now, I would suffer with fluid buildup above my ear, even on the scalp. My husband said that my head actually smelled like mildew. I would have small bumps on my scalp full of fluid just waiting to drain. Now there is little buildup and more direct draining through the eustachian tube. The days in which I drain less, I get a headache with the scalp bumps. Once I lie down on the offending ear, it releases the pressure.
And to bring this full circle.........I think the fluid that escapes into my tissue either irritates my Lupus or caused it in the first place, with its protein that doesn't belong in other body tissue than within the dura. I believe when the leak is finally found it will be at the base of the skull, next to the brainstem.........
Maybe all because of that one icy morning!
thanks for my moment to explain
GingerLox
(and Ed, if it helps I think that the fluid pressure coming out from the skull is less susceptible to menengitis given the theory that was mentioned that the germs would have trouble swimming against the stream. I have found that when I begin a cold, the fluid washes away the germs quite quickly. I would suggest that you stay somewhat upright while fighting your current infection to try to work with gravity to keep the infection from going back into the area of the leak.......like plumbing.) The Mayo neurosurgeon told me to know the signs of menengitis and be hypervigilant in the event that any symptoms arise.