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anyone with multiple spontaneous csf leaks in back

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Old 09-12-2014, 08:01 PM   #1
tr4cy
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Default anyone with multiple spontaneous csf leaks in back

Hi! I am new to the group and I was jusr wondering if anyone out there has had multiple csf leaks? After working in my yard 3 n 1/2 mths ago I developed a severe headache next day n could not move my neck! Since I have had the classic symptoms of killer headaches, vomiting, vision changes, ear popping, extreme fatige, back pain and neck pain. I was referred to the Mayo Clinic (which is a great faciliyy btw) A spinal tap showed pressure of 13 which they said was normal and brain mri only mild fluid in sinuses but the meleogram showed several csf leaks and fluid collections from my neck to my lower back ontop of my regular buldging disk, spurs and deg disk dis. The doctor stated he had never seen so many leaks in one case and surgery was not a option because of how many there are. He had me receive a blood patch and stated I would probably need more along the same. I havent found much info out there on multiple leaks , just needing answers to this terrible illness
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Old 12-09-2014, 07:42 PM   #2
jaynemil5
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Quote:
Originally Posted by tr4cy View Post
Hi! I am new to the group and I was jusr wondering if anyone out there has had multiple csf leaks? After working in my yard 3 n 1/2 mths ago I developed a severe headache next day n could not move my neck! Since I have had the classic symptoms of killer headaches, vomiting, vision changes, ear popping, extreme fatige, back pain and neck pain. I was referred to the Mayo Clinic (which is a great faciliyy btw) A spinal tap showed pressure of 13 which they said was normal and brain mri only mild fluid in sinuses but the meleogram showed several csf leaks and fluid collections from my neck to my lower back ontop of my regular buldging disk, spurs and deg disk dis. The doctor stated he had never seen so many leaks in one case and surgery was not a option because of how many there are. He had me receive a blood patch and stated I would probably need more along the same. I havent found much info out there on multiple leaks , just needing answers to this terrible illness
Who did you see at Mayo...dr Makri just retired...I am trying to get into someone quickly.
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Old 02-23-2015, 05:33 PM   #3
dmccoyks
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I just came across this group. I had a special ct myleogram that is only performed at 3 different hospitals that I am aware of. During the procedure they found 8 CSF leak locations and patched the 5 worst ones. This was all done at Cleveland clinic by Dr. Hui who is wonderful. I had a regular myleogram approx 3 years ago at Cedar-Sinai but it didn't show anything. There is a Dr. Linda Gray at Duke Univ. that from everything I have learned is a wonderful doctor and she trained Dr. Hui.
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