Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 Hi Sara I had two leaks...one was to the outside of me and the other was contained under my skin (first leak occured after my first untethering, second leak was after the fifth and last untethering.) I also have a Chiari malformation. A Chiari malformation will bring on the " spinal " headaches because what Chiari is (in case you don't know) is that the cerebellum herniates into the cervical region, blocking off spinal fluid flow. Sometimes it never blocks flow, sometimes it blocks a little flow and sometimes it blocks a lot of flow. Have you been checked for this? I don't know if you could leak after that period of time. How did the leak stop after the surgery? (Mine needed surgical interventions both times...very long, hard, and I never want to go through it again.) Let me know...but, if you've never been checked for Chiari (and it does go hand in hand with tethered cord and Spina Bifida at times), then maybe your neuro would want to order a brain and cervical MRI? Kathy Spinal Fluid Leak > Hi everyone. Got another question. When I had my tsc surgery a few > years ago i developed a spinal fluid leak and had those awful awful > headaches. Since then every now and then if i bend over or move wrong > my head hurts like that. Over the past few weeks its seems like those > headaches are back, just not as bad as before. could i have a spinal > fluid leak even though i haven't had anything done to my back in 3 > years? thanks. > > Sara > > > > > > Not Medical Advice. We Are Not Doctors. > Need help with the list? Email > kathy@...,michelle@..., rick@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 Hi Kathy. I had a brain mri done about a year ago and a cervical region one. Chiari wasn't found, but i do have a small herniated disc in my neck. I didn't have to have surgery for the spinal fluid leak after my untethereing surgery. The way my surgeon explained it was this: He said that he had taken a lipoma out of my back which left a empty hole in there where it had been. He said that that empty hole from the lipoma had filled up with spinal fluid from the leak and after it filled up it quit leaking. I don't really know what that means as far as spinal fluid headaches go now, but that is what he said. I can't imagine having 5 of those awful surgeries. Sara > Hi Sara > > I had two leaks...one was to the outside of me and the other was contained > under my skin (first leak occured after my first untethering, second leak > was after the fifth and last untethering.) > > I also have a Chiari malformation. A Chiari malformation will bring on the > " spinal " headaches because what Chiari is (in case you don't know) is that > the cerebellum herniates into the cervical region, blocking off spinal fluid > flow. Sometimes it never blocks flow, sometimes it blocks a little flow and > sometimes it blocks a lot of flow. > > Have you been checked for this? I don't know if you could leak after that > period of time. How did the leak stop after the surgery? (Mine needed > surgical interventions both times...very long, hard, and I never want to go > through it again.) > > Let me know...but, if you've never been checked for Chiari (and it does go > hand in hand with tethered cord and Spina Bifida at times), then maybe your > neuro would want to order a brain and cervical MRI? > > Kathy > Spinal Fluid Leak > > > > Hi everyone. Got another question. When I had my tsc surgery a few > > years ago i developed a spinal fluid leak and had those awful awful > > headaches. Since then every now and then if i bend over or move wrong > > my head hurts like that. Over the past few weeks its seems like those > > headaches are back, just not as bad as before. could i have a spinal > > fluid leak even though i haven't had anything done to my back in 3 > > years? thanks. > > > > Sara > > > > > > > > > > > > Not Medical Advice. We Are Not Doctors. > > Need help with the list? Email > > kathy@t...,michelle@t..., rick@t... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 , Did you have to get a shunt put in because if the chiari malfformation? If so how old were you and how did it go? I am 39 and I saw my neurosurgeon in last October and won't she her again until this October. She wants to put in a shunt. My headaches have gotten much better since then. Re: Spinal Fluid Leak Hi Sara I had two leaks...one was to the outside of me and the other was contained under my skin (first leak occured after my first untethering, second leak was after the fifth and last untethering.) I also have a Chiari malformation. A Chiari malformation will bring on the " spinal " headaches because what Chiari is (in case you don't know) is that the cerebellum herniates into the cervical region, blocking off spinal fluid flow. Sometimes it never blocks flow, sometimes it blocks a little flow and sometimes it blocks a lot of flow. Have you been checked for this? I don't know if you could leak after that period of time. How did the leak stop after the surgery? (Mine needed surgical interventions both times...very long, hard, and I never want to go through it again.) Let me know...but, if you've never been checked for Chiari (and it does go hand in hand with tethered cord and Spina Bifida at times), then maybe your neuro would want to order a brain and cervical MRI? Kathy Spinal Fluid Leak > Hi everyone. Got another question. When I had my tsc surgery a few > years ago i developed a spinal fluid leak and had those awful awful > headaches. Since then every now and then if i bend over or move wrong > my head hurts like that. Over the past few weeks its seems like those > headaches are back, just not as bad as before. could i have a spinal > fluid leak even though i haven't had anything done to my back in 3 > years? thanks. > > Sara > > > > > > Not Medical Advice. We Are Not Doctors. > Need help with the list? Email > kathy@...,michelle@..., rick@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 Sara, I got the same story from my neurosurgeon from my release almost 4 months ago. My headaches are worse at the end of the day bending, unabearable still when laying flat. Now having a bubble under incision that gets bigger towards the end of the day too-gotta think its CSF filling up with gravity assisting it; pretty much now existant in the morning. It is possible to be leaking CSF from something besides surgery or an epidural, but is rare and people can usually identify some sort of trauma that would cause a disruption in the dura. Hope you have an appointment with your neurosurgeon again soon to discuss this with them. > > Hi Sara > > > > I had two leaks...one was to the outside of me and the other was > contained > > under my skin (first leak occured after my first untethering, second > leak > > was after the fifth and last untethering.) > > > > I also have a Chiari malformation. A Chiari malformation will bring > on the > > " spinal " headaches because what Chiari is (in case you don't know) > is that > > the cerebellum herniates into the cervical region, blocking off > spinal fluid > > flow. Sometimes it never blocks flow, sometimes it blocks a little > flow and > > sometimes it blocks a lot of flow. > > > > Have you been checked for this? I don't know if you could leak > after that > > period of time. How did the leak stop after the surgery? (Mine needed > > surgical interventions both times...very long, hard, and I never > want to go > > through it again.) > > > > Let me know...but, if you've never been checked for Chiari (and it > does go > > hand in hand with tethered cord and Spina Bifida at times), then > maybe your > > neuro would want to order a brain and cervical MRI? > > > > Kathy > > Spinal Fluid Leak > > > > > > > Hi everyone. Got another question. When I had my tsc surgery a few > > > years ago i developed a spinal fluid leak and had those awful awful > > > headaches. Since then every now and then if i bend over or move wrong > > > my head hurts like that. Over the past few weeks its seems like those > > > headaches are back, just not as bad as before. could i have a spinal > > > fluid leak even though i haven't had anything done to my back in 3 > > > years? thanks. > > > > > > Sara > > > > > > > > > > > > > > > > > > Not Medical Advice. We Are Not Doctors. > > > Need help with the list? Email > > > kathy@t...,michelle@t..., rick@t... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2005 Report Share Posted May 18, 2005 Hi. They told me that I didn't have the chiari malformation. > , > > Did you have to get a shunt put in because if the chiari malfformation? > If so how old were you and how did it go? I am 39 and I saw my neurosurgeon > in last October and won't she her again until this October. She wants to > put in a shunt. My headaches have gotten much better since then. > > Re: Spinal Fluid Leak > > > Hi Sara > > I had two leaks...one was to the outside of me and the other was contained > under my skin (first leak occured after my first untethering, second leak > was after the fifth and last untethering.) > > I also have a Chiari malformation. A Chiari malformation will bring on the > " spinal " headaches because what Chiari is (in case you don't know) is that > the cerebellum herniates into the cervical region, blocking off spinal fluid > > flow. Sometimes it never blocks flow, sometimes it blocks a little flow and > > sometimes it blocks a lot of flow. > > Have you been checked for this? I don't know if you could leak after that > period of time. How did the leak stop after the surgery? (Mine needed > surgical interventions both times...very long, hard, and I never want to go > through it again.) > > Let me know...but, if you've never been checked for Chiari (and it does go > hand in hand with tethered cord and Spina Bifida at times), then maybe your > neuro would want to order a brain and cervical MRI? > > Kathy > Spinal Fluid Leak > > > > Hi everyone. Got another question. When I had my tsc surgery a few > > years ago i developed a spinal fluid leak and had those awful awful > > headaches. Since then every now and then if i bend over or move wrong > > my head hurts like that. Over the past few weeks its seems like those > > headaches are back, just not as bad as before. could i have a spinal > > fluid leak even though i haven't had anything done to my back in 3 > > years? thanks. > > > > Sara > > > > > > > > > > > > Not Medical Advice. We Are Not Doctors. > > Need help with the list? Email > > kathy@t...,michelle@t..., rick@t... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2005 Report Share Posted May 18, 2005 Hi . I saw my nsg a few weeks ago and I go back in two weeks to have another mri done to see what is going on. I'm praying that I don't have to have surgery again. I have had surgeries for the past 4 summers. I kind of want to take a vacation this year. Already have plans made for it. Sara > > > Hi Sara > > > > > > I had two leaks...one was to the outside of me and the other was > > contained > > > under my skin (first leak occured after my first untethering, > second > > leak > > > was after the fifth and last untethering.) > > > > > > I also have a Chiari malformation. A Chiari malformation will > bring > > on the > > > " spinal " headaches because what Chiari is (in case you don't > know) > > is that > > > the cerebellum herniates into the cervical region, blocking off > > spinal fluid > > > flow. Sometimes it never blocks flow, sometimes it blocks a > little > > flow and > > > sometimes it blocks a lot of flow. > > > > > > Have you been checked for this? I don't know if you could leak > > after that > > > period of time. How did the leak stop after the surgery? (Mine > needed > > > surgical interventions both times...very long, hard, and I never > > want to go > > > through it again.) > > > > > > Let me know...but, if you've never been checked for Chiari (and > it > > does go > > > hand in hand with tethered cord and Spina Bifida at times), then > > maybe your > > > neuro would want to order a brain and cervical MRI? > > > > > > Kathy > > > Spinal Fluid Leak > > > > > > > > > > Hi everyone. Got another question. When I had my tsc surgery > a few > > > > years ago i developed a spinal fluid leak and had those awful > awful > > > > headaches. Since then every now and then if i bend over or > move wrong > > > > my head hurts like that. Over the past few weeks its seems > like those > > > > headaches are back, just not as bad as before. could i have a > spinal > > > > fluid leak even though i haven't had anything done to my back > in 3 > > > > years? thanks. > > > > > > > > Sara > > > > > > > > > > > > > > > > > > > > > > > > Not Medical Advice. We Are Not Doctors. > > > > Need help with the list? Email > > > > kathy@t...,michelle@t..., rick@t... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2005 Report Share Posted May 18, 2005 Hi there, I had a CSF leak after surgery, and my nsgn wouldn't fix it with surgery because I have adhesive arachnoiditis. I stayed in isolation in hospital until the leak quit being external, but continued to leak internally. I had the leak for almost a year, finally had 2 blood patches done. The second one stopped my daily headaches. I know of some people who have had 'spontaneous' CSF leaks, but they are rare. Here is a link to an article about spontaneous CSF leaks from Neurosurgical Focus: http://www.aans.org/education/journal/neurosurgical/july00/9-1-8.pdf In the upper right-hand corner of the article it says: Click here to return to Table of Contents where you will find other articles about different types of CSF leaks and how they are managed. Hope this helps, Take care, V. wrote: Sara, I got the same story from my neurosurgeon from my release almost 4 months ago. My headaches are worse at the end of the day bending, unabearable still when laying flat. Now having a bubble under incision that gets bigger towards the end of the day too-gotta think its CSF filling up with gravity assisting it; pretty much now existant in the morning. It is possible to be leaking CSF from something besides surgery or an epidural, but is rare and people can usually identify some sort of trauma that would cause a disruption in the dura. Hope you have an appointment with your neurosurgeon again soon to discuss this with them. > > Hi Sara > > > > I had two leaks...one was to the outside of me and the other was > contained > > under my skin (first leak occured after my first untethering, second > leak > > was after the fifth and last untethering.) > > > > I also have a Chiari malformation. A Chiari malformation will bring > on the > > " spinal " headaches because what Chiari is (in case you don't know) > is that > > the cerebellum herniates into the cervical region, blocking off > spinal fluid > > flow. Sometimes it never blocks flow, sometimes it blocks a little > flow and > > sometimes it blocks a lot of flow. > > > > Have you been checked for this? I don't know if you could leak > after that > > period of time. How did the leak stop after the surgery? (Mine needed > > surgical interventions both times...very long, hard, and I never > want to go > > through it again.) > > > > Let me know...but, if you've never been checked for Chiari (and it > does go > > hand in hand with tethered cord and Spina Bifida at times), then > maybe your > > neuro would want to order a brain and cervical MRI? > > > > Kathy > > Spinal Fluid Leak > > > > > > > Hi everyone. Got another question. When I had my tsc surgery a few > > > years ago i developed a spinal fluid leak and had those awful awful > > > headaches. Since then every now and then if i bend over or move wrong > > > my head hurts like that. Over the past few weeks its seems like those > > > headaches are back, just not as bad as before. could i have a spinal > > > fluid leak even though i haven't had anything done to my back in 3 > > > years? thanks. > > > > > > Sara > > > > > > > > > > > > > > > > > > Not Medical Advice. We Are Not Doctors. > > > Need help with the list? Email > > > kathy@t...,michelle@t..., rick@t... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2005 Report Share Posted May 18, 2005 Sara, hope you get some good news after your MRI. You deserve a vacation from the headaches and away from the daily grind too. > > > > Hi Sara > > > > > > > > I had two leaks...one was to the outside of me and the other was > > > contained > > > > under my skin (first leak occured after my first untethering, > > second > > > leak > > > > was after the fifth and last untethering.) > > > > > > > > I also have a Chiari malformation. A Chiari malformation will > > bring > > > on the > > > > " spinal " headaches because what Chiari is (in case you don't > > know) > > > is that > > > > the cerebellum herniates into the cervical region, blocking off > > > spinal fluid > > > > flow. Sometimes it never blocks flow, sometimes it blocks a > > little > > > flow and > > > > sometimes it blocks a lot of flow. > > > > > > > > Have you been checked for this? I don't know if you could leak > > > after that > > > > period of time. How did the leak stop after the surgery? (Mine > > needed > > > > surgical interventions both times...very long, hard, and I never > > > want to go > > > > through it again.) > > > > > > > > Let me know...but, if you've never been checked for Chiari (and > > it > > > does go > > > > hand in hand with tethered cord and Spina Bifida at times), then > > > maybe your > > > > neuro would want to order a brain and cervical MRI? > > > > > > > > Kathy > > > > Spinal Fluid Leak > > > > > > > > > > > > > Hi everyone. Got another question. When I had my tsc surgery > > a few > > > > > years ago i developed a spinal fluid leak and had those awful > > awful > > > > > headaches. Since then every now and then if i bend over or > > move wrong > > > > > my head hurts like that. Over the past few weeks its seems > > like those > > > > > headaches are back, just not as bad as before. could i have a > > spinal > > > > > fluid leak even though i haven't had anything done to my back > > in 3 > > > > > years? thanks. > > > > > > > > > > Sara > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Not Medical Advice. We Are Not Doctors. > > > > > Need help with the list? Email > > > > > kathy@t...,michelle@t..., rick@t... > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2005 Report Share Posted June 27, 2005 IF I WERE YOU,I WOULD YET IT CHECKED OUT!! WHY TAKE THE CHANCE,OR WORRY FOR NOTHING,OR THANK GOODNESS YOU CHECKED IT OUT !!! Quote Link to comment Share on other sites More sharing options...
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