spinal fluid leak with fluid sac

[adventurer53]

I recently got a spinal fluid leak after a myelogram. But, it didn't start until five days after- the day I had shoulder surgery. CT showed a pocket of fluid where the myelogram was done (L4-L5). They think that the pressure change during surgery caused the weakened area to pop open. Blood patch was more complicated due to fluid sac. Will this sac just dry up or will it form a cyst? They also put blood inside of the sac. I have had two other leaks in the past and have had two surgeries inside my spinal cord - untethering and one to remove a cyst (both congenital), as well as two fusions and a spinal cord stimulator implanted. Looking for people who have adult onset of tethered cord that was congenital. Many thanks!! I recently got a spinal fluid leak after a myelogram. But, it didn't start until five days after- the day I had shoulder surgery. CT showed a pocket of fluid where the myelogram was done (L4-L5). They think that the pressure change during surgery caused the weakened area to pop open. Blood patch was more complicated due to fluid sac. Will this sac just dry up or will it form a cyst? They also put blood inside of the sac. I have had two other leaks in the past and have had two surgeries inside my spinal cord - untethering and one to remove a cyst (both congenital), as well as two fusions and a spinal cord stimulator implanted. Looking for people who have adult onset of tethered cord that was congenital. Many thanks!!

[adventurer53]

Help!! I haven't been able to SLEEP well for the last week. This isn't usually a problem. It has gotten worse as my CSF leak symptoms have increased. It's not just the head ache, there is so much more to these. It's the nausea, stomach upset, left side of face feels like it is sagging, ears ring, sight and hearing sensitivity, dry eyes and skin on face, trouble concentrating, worse hot flashes, runny nose when I'm upright, and now not able to sleep. I am scheduled for a second blood patch three days from now, hoping they can do it. As I mentioned before it is complicated by a pseudomeningocele (a sac of spinal fluid that has formed in the lumbar area where they did the myelogram).
I have tried relaxing music, not caffiene in the evening, lortab, valium, roxicet and percocet - not all at once!! One night I try one pain med, and then the next night I see if a different one will work. Tried breathing exercises, praying, progressive relaxation. I don't feel real stressed. I love exercise and of course I have to be down so much I'm not getting that. I also have not been napping at all.
Could the LOW SPINAL FLUID in my head be messing with my ability to sleep and what can I do to SLEEP! ???

[adventurer53]

Still have CSF leak. Scheduled for another blood patch next Thursday - then will have to stay in town in a motel for four days before we travel the six hours home. This has become much too common for me now when anything is done in or near my spinal cord. No question here. Just venting about how tired I am of being sick and laying down - not to mention the pokes and risk of infection with them being in there.

[adventurer53]

Here's a follow-up from my blood patch which included blood into around and in the pseudomeningocele. I layed flat for 48 hours, and then traveled home and stayed down for two more days. things went went until about a week after the patch. I went to PT for therapy on my shoulder that was operated on that started the first leak after the myelogram - if you can follow that!! Anyway, I got up and walked to my car and thought wow, something isn't right. All the symptoms came back. I won't repeat them all. that was four days ago, and it's not better. I am trying to stay down more, but not totally. To complicate matters, I am an only child and my 86 year old Mom needed to go see a specialist two hours away and it became a twelve hour trip with tests for more squamous cell cancer. I also had my Dad with me who is has moderate alzsheimer's. they are both so much fun to be with that it is my joy to care for them, but I know that I kicked in adrendaline for the day and now today is even worse. I guess I need to go back to strict bed rest for a few days and see if it will help. with my other two leaks, I eventually was able to start being up some and just lay down as soon as I felt the head stuff coming on. Anyone else have some advice. Yes, I am staying well hydrated and taking caffeine. Interestingly, I also get a runny nose and a hoarse voice when the symptoms are getting worse. Thanks for letting me vent.

[adventurer53]

Thanks so much for taking the time to answer. I really appreciate your input. It helps to not feel so alone, because most of my friends don't have a clue about this stuff.

With a thankful heart!

Adventurer53

[Dr Sharma]

Hi there. It is a common complication of operated tethered spinal cord to present as spinal fluid or CSF leak after a dural puncture is made therapeutically or diagnostically. your neurosurgeon should examine the site under strict asepsis and consider placing a shunt to drain CSF from the lumbar spine to the peritoneum. Placing an autologous epidural blood patch can also help seal the CSF leak. Meanwhile you must try to keep well hydrated and rest a lot instead of being ambulatory, which will only aggravate the symptoms of post dural punchure headaches. Hope this helps. Take care.