Guest guest Posted October 7, 2010 Report Share Posted October 7, 2010 Hi Dee so what did they do when discovering the leak? did you have to lie flat for it to go away ________________________________ To: tetheredspinalcord Sent: Thu, October 7, 2010 2:33:57 PM Subject: RE: spinal leak My spinal leak started about a week after surgery once I got home. Initially it was a huge swollen area around the incision area (more like a big bulge, not red like and infection). Then a day or two later the headaches started... but they were not relieved by lying down like they typically are. My leak went away on it's own but the " swollen " area took over a month to completely go away, and the headaches lasted about 10 days -- to the best of my memory! Dee ________________________________________________________________________________\ ______________________________________________________________________ To: tetheredspinalcord From: lilacs007@... Date: Thu, 7 Oct 2010 12:28:39 -0700 Subject: Re: spinal leak Hi I have not, but I just spoke to my friend last night who did. I would read this... because it is exactly what she told me. BUT she did say it is typically detected right away (if it's post surgery) http://en.wikipedia.org/wiki/Spontaneous_cerebrospinal_fluid_leak Subject: spinal leak To: tetheredspinalcord Date: Thursday, October 7, 2010, 1:55 PM for anyone that has had a spinal fluid leak post surgery.... what were your signs? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2010 Report Share Posted October 7, 2010 I was told just to take it easy by my NS and to see if it would resolve on it's own as most do. If you think you are having a spinal leak I would go see your NS or GP or call them. I was long distance from my NS and my GP placed a call into him and was given those instructions. I was also told if fluid started to leak out of the incision area to get medical attention (which it did not). So, yes, essentially I just layed down as much as possible for the week. Once the headaches subsided I started my walking again. Typically spinal headaches will be better when lying down. Dee To: tetheredspinalcord From: huffmang70@... Date: Thu, 7 Oct 2010 12:37:31 -0700 Subject: Re: spinal leak Hi Dee so what did they do when discovering the leak? did you have to lie flat for it to go away ________________________________ To: tetheredspinalcord Sent: Thu, October 7, 2010 2:33:57 PM Subject: RE: spinal leak My spinal leak started about a week after surgery once I got home. Initially it was a huge swollen area around the incision area (more like a big bulge, not red like and infection). Then a day or two later the headaches started... but they were not relieved by lying down like they typically are. My leak went away on it's own but the " swollen " area took over a month to completely go away, and the headaches lasted about 10 days -- to the best of my memory! Dee __________________________________________________________ To: tetheredspinalcord From: lilacs007@... Date: Thu, 7 Oct 2010 12:28:39 -0700 Subject: Re: spinal leak Hi I have not, but I just spoke to my friend last night who did. I would read this... because it is exactly what she told me. BUT she did say it is typically detected right away (if it's post surgery) http://en.wikipedia.org/wiki/Spontaneous_cerebrospinal_fluid_leak Subject: spinal leak To: tetheredspinalcord Date: Thursday, October 7, 2010, 1:55 PM for anyone that has had a spinal fluid leak post surgery.... what were your signs? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2010 Report Share Posted October 7, 2010 I am really not sure....I was at his office yesterday and told him that I have some puffiness on the left side of my incision that comes and goes....he said that he thinks it may be muscle swelling but if it gets bigger it could be a leak and to let him know I have a headache right now....and of course I start to worry I sneezed earlier and the stupid puffiness puffed out again.....it appears a little bigger to me but not huge or anything....I just am not sure the headache hurts while laying down and sitting up ________________________________ To: tetheredspinalcord Sent: Thu, October 7, 2010 2:43:40 PM Subject: RE: spinal leak I was told just to take it easy by my NS and to see if it would resolve on it's own as most do. If you think you are having a spinal leak I would go see your NS or GP or call them. I was long distance from my NS and my GP placed a call into him and was given those instructions. I was also told if fluid started to leak out of the incision area to get medical attention (which it did not). So, yes, essentially I just layed down as much as possible for the week. Once the headaches subsided I started my walking again. Typically spinal headaches will be better when lying down. Dee To: tetheredspinalcord From: huffmang70@... Date: Thu, 7 Oct 2010 12:37:31 -0700 Subject: Re: spinal leak Hi Dee so what did they do when discovering the leak? did you have to lie flat for it to go away ________________________________ To: tetheredspinalcord Sent: Thu, October 7, 2010 2:33:57 PM Subject: RE: spinal leak My spinal leak started about a week after surgery once I got home. Initially it was a huge swollen area around the incision area (more like a big bulge, not red like and infection). Then a day or two later the headaches started... but they were not relieved by lying down like they typically are. My leak went away on it's own but the " swollen " area took over a month to completely go away, and the headaches lasted about 10 days -- to the best of my memory! Dee __________________________________________________________ To: tetheredspinalcord From: lilacs007@... Date: Thu, 7 Oct 2010 12:28:39 -0700 Subject: Re: spinal leak Hi I have not, but I just spoke to my friend last night who did. I would read this... because it is exactly what she told me. BUT she did say it is typically detected right away (if it's post surgery) http://en.wikipedia.org/wiki/Spontaneous_cerebrospinal_fluid_leak Subject: spinal leak To: tetheredspinalcord Date: Thursday, October 7, 2010, 1:55 PM for anyone that has had a spinal fluid leak post surgery.... what were your signs? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2010 Report Share Posted October 8, 2010 I've had both types of leaks - under the skin as you describe (after my initial untethering); it went up and down in size to some degree under my skin. Then I also had a spinal fluid leak to the outside of my body (after my fourth untethering?) If I remember right, both were caused by the same thing - an inner stitch came out or " popped " and acted as a wick, allowing spinal fluid out, but not back in. Unfortunately, both had to be fixed surgically. However, the one to the outside of me was not as " emergent " as you'd think. I had to be careful of infection, but I also had to lay flat 24/7 for I think 55 days (until my nsg decided to try to find the leak). I guess the surgery to find the leak can be very tedious at times and they don't always find the leak. After the surgeries to repair the leaks (they called the leaks pseudomeningoceles), I had to stay in the hospital, flat on my back for 3-5 days and then stay flat at home for so many days to avoid another leak. My neurosurgeon had said after both of these surgeries, that he felt lucky to find the leaks because some times he didn't and patients went home after surgery with the same leak they came in with. I was also told the same as other members were and not just by my nsg, but by others that I saw for second opinions for untetherings (and they were speaking to how fortunate I was that the leak(s) were found surgically) - You don't always find the leaks and quite frequently, taking it easy (ie: laying down as often as possible) sealed whatever area was leaking spinal fluid. It just didn't happen for me. The first one that was under the skin eventually grew to the size of a nerf football under my skin. I had terrible head pains from the spinal fluid leaking and was very sick to my stomach. I can't recall how long I went before they operated, but I do remember asking my nsg to operate because I was so sick from the headpains, etc. Although my leaks led to surgeries, not all do. I just didn't have great luck and now that I'm writing I'm recalling more about the first leak - the first one happened after I got home from the hospital. I was told not to bend for so many days, but did when one of our children spilled something on the floor and without thinking just bent over to clean it up. This probably caused the stitch to pop. I wish you tons of luck, but if you are getting sick to your stomach and have the typical head pains (which are horrible - I still get them because of a Chiari malformation), you may want to discuss the discomfort with your surgeon to see if he can recommend a position to help stop the leak. Please keep us informed. Kathy spinal leak > To: tetheredspinalcord > Date: Thursday, October 7, 2010, 1:55 PM > > for anyone that has had a spinal fluid leak post surgery.... > > what were your signs? > > Quote Link to comment Share on other sites More sharing options...
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