Guest guest Posted May 22, 2003 Report Share Posted May 22, 2003 Dear , Move to a distant land! Unfortunately I have had three cisternograms. It was to check for leaking CSF. They found it pooled in the area of the cribiform plate (above the nose), but not the actual source, just that I was leaking. There must be different protocols, as each one was different. The first one the doctor (ENT?) literally shoved about 3 yards of material strips up into my sinus cavities. I cannot say it was painful, but sure was uncomfortable. I kept backing away as he did it. I could feel it snaking its way up inside. My wife held my head and kept telling me to relax, and breathe. HA! And it was soaked in some kind of drying agent and antibiotic that tasted terrible. After he dredged the area, he shoved six pledgits (sp?) up my nose with string attached to them, and that was taped to my face. (I looked like a character from " CATS " lol) I kept them in for 24 hours, had a lumbar puncture with some kind of radioactive dye, then at some predetermined intervals, they put me under some kind of machine, and had me hold my head in different positions. And told me I could not move. A couple of times they taped my head in position. It was pretty gruelling actually. The dye showed up on a screen and on printouts, I think it was the bright pink areas. The second one did not include the prepping and dredging, but was pretty similar, except that the doctor agreed with my suggestion to put me in a sloped position between pictures. YUCK! I was thinking slight incline, they were thinking almost standing on my head (not as bad as the myleogram, shudder!) I was sure that the head rest was going to give way, and I pictured myself sliding down the hall from the momentum. Anything to keep smiling, right! The third was similar to the second, except a resident (or kitchen food prep worker) did the puncture and I stopped counting at about 17 " sorries " and told her to just stick it in or get someone else. I was a bit testy that day. I believe that the removal of the pledgetts was one of the most wonderful things. It was weird feeling as they pulled them out (they were quite high in the sinus cavities, or nasal cavity) And to finally blow my nose. Only chocolate ice cream could be better! I think you should insist that you both be knocked out. I can't imagine a seven year old going through that. The ENT who shoved all the gauze stripping up my nose, said something like, " you should see how much I can get up into a football player's nose " . I do remember that it was several yards that he mentioned, but don't remember the actual number. I remember thinking, thank God I'm a musician and not a football player -- LOL hope this helps. I just remember I hated the whole thing. Peace, joe in PA, ACM1, 8mm decompressed 1999 Mayo Clinic apologies, no spell check was run Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2003 Report Share Posted May 22, 2003 Dear , Move to a distant land! Unfortunately I have had three cisternograms. It was to check for leaking CSF. They found it pooled in the area of the cribiform plate (above the nose), but not the actual source, just that I was leaking. There must be different protocols, as each one was different. The first one the doctor (ENT?) literally shoved about 3 yards of material strips up into my sinus cavities. I cannot say it was painful, but sure was uncomfortable. I kept backing away as he did it. I could feel it snaking its way up inside. My wife held my head and kept telling me to relax, and breathe. HA! And it was soaked in some kind of drying agent and antibiotic that tasted terrible. After he dredged the area, he shoved six pledgits (sp?) up my nose with string attached to them, and that was taped to my face. (I looked like a character from " CATS " lol) I kept them in for 24 hours, had a lumbar puncture with some kind of radioactive dye, then at some predetermined intervals, they put me under some kind of machine, and had me hold my head in different positions. And told me I could not move. A couple of times they taped my head in position. It was pretty gruelling actually. The dye showed up on a screen and on printouts, I think it was the bright pink areas. The second one did not include the prepping and dredging, but was pretty similar, except that the doctor agreed with my suggestion to put me in a sloped position between pictures. YUCK! I was thinking slight incline, they were thinking almost standing on my head (not as bad as the myleogram, shudder!) I was sure that the head rest was going to give way, and I pictured myself sliding down the hall from the momentum. Anything to keep smiling, right! The third was similar to the second, except a resident (or kitchen food prep worker) did the puncture and I stopped counting at about 17 " sorries " and told her to just stick it in or get someone else. I was a bit testy that day. I believe that the removal of the pledgetts was one of the most wonderful things. It was weird feeling as they pulled them out (they were quite high in the sinus cavities, or nasal cavity) And to finally blow my nose. Only chocolate ice cream could be better! I think you should insist that you both be knocked out. I can't imagine a seven year old going through that. The ENT who shoved all the gauze stripping up my nose, said something like, " you should see how much I can get up into a football player's nose " . I do remember that it was several yards that he mentioned, but don't remember the actual number. I remember thinking, thank God I'm a musician and not a football player -- LOL hope this helps. I just remember I hated the whole thing. Peace, joe in PA, ACM1, 8mm decompressed 1999 Mayo Clinic apologies, no spell check was run Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2003 Report Share Posted May 22, 2003 Our daughter has had two cisternograms. However, she has never had the gauze situation in either test. They have simply (notice it wasn't my spine) did a spinal tap and inserted a radioactive dye. They immediately did films (I believe CAT Scan type). They we waited a little while and they took more films. We then had to return the next morning and the morning after that to have films taken. With this testing, they were able to see the actual flow of dye and if it made it through the entire system. Other than the spinal tap, it really wasn't painful for her at all. I would contact the doctor that ordered the testing and see if he can explain it better to you and then don't hide the truth from your daughter. I have always found out that the truth has paid off where Kate was concerned. I didn't tell her days a head of the test but we did talk a day or so before. Faith _________________________________ and Faith Webb -----Original Message----- From: JJGIBSON@... Sent: Thursday, May 22, 2003 10:55 AM To: Elleyshay@...; chiari Dear , Move to a distant land! Unfortunately I have had three cisternograms. It was to check for leaking CSF. They found it pooled in the area of the cribiform plate (above the nose), but not the actual source, just that I was leaking. There must be different protocols, as each one was different. The first one the doctor (ENT?) literally shoved about 3 yards of material strips up into my sinus cavities. I cannot say it was painful, but sure was uncomfortable. I kept backing away as he did it. I could feel it snaking its way up inside. My wife held my head and kept telling me to relax, and breathe. HA! And it was soaked in some kind of drying agent and antibiotic that tasted terrible. After he dredged the area, he shoved six pledgits (sp?) up my nose with string attached to them, and that was taped to my face. (I looked like a character from " CATS " lol) I kept them in for 24 hours, had a lumbar puncture with some kind of radioactive dye, then at some predetermined intervals, they put me under some kind of machine, and had me hold my head in different positions. And told me I could not move. A couple of times they taped my head in position. It was pretty gruelling actually. The dye showed up on a screen and on printouts, I think it was the bright pink areas. The second one did not include the prepping and dredging, but was pretty similar, except that the doctor agreed with my suggestion to put me in a sloped position between pictures. YUCK! I was thinking slight incline, they were thinking almost standing on my head (not as bad as the myleogram, shudder!) I was sure that the head rest was going to give way, and I pictured myself sliding down the hall from the momentum. Anything to keep smiling, right! The third was similar to the second, except a resident (or kitchen food prep worker) did the puncture and I stopped counting at about 17 " sorries " and told her to just stick it in or get someone else. I was a bit testy that day. I believe that the removal of the pledgetts was one of the most wonderful things. It was weird feeling as they pulled them out (they were quite high in the sinus cavities, or nasal cavity) And to finally blow my nose. Only chocolate ice cream could be better! I think you should insist that you both be knocked out. I can't imagine a seven year old going through that. The ENT who shoved all the gauze stripping up my nose, said something like, " you should see how much I can get up into a football player's nose " . I do remember that it was several yards that he mentioned, but don't remember the actual number. I remember thinking, thank God I'm a musician and not a football player -- LOL hope this helps. I just remember I hated the whole thing. Peace, joe in PA, ACM1, 8mm decompressed 1999 Mayo Clinic apologies, no spell check was run Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2003 Report Share Posted May 22, 2003 Hi Faith, Thank you. This is pretty much what was explained to us. will have conscious sedation. We have iodine allergies that run in my family (anaphylactic response to shellfish), so there will be some other meds like benedryl started the day before to combat any possible reactions. We are hoping the test may give some clues as to the mysteries of 's symptoms. We will probably tell her in simple terms the day before or the morning of. Best wishes, RE: CT Cisternogram? > > Our daughter has had two cisternograms. However, she has never had the > gauze situation in either test. > > They have simply (notice it wasn't my spine) did a spinal tap and inserted a > radioactive dye. They immediately did films (I believe CAT Scan type). > They we waited a little while and they took more films. We then had to > return the next morning and the morning after that to have films taken. > > With this testing, they were able to see the actual flow of dye and if it > made it through the entire system. > > Other than the spinal tap, it really wasn't painful for her at all. I would > contact the doctor that ordered the testing and see if he can explain it > better to you and then don't hide the truth from your daughter. I have > always found out that the truth has paid off where Kate was concerned. I > didn't tell her days a head of the test but we did talk a day or so before. > > Faith > > > _________________________________ > and Faith Webb > > > > -----Original Message----- > From: JJGIBSON@... > Sent: Thursday, May 22, 2003 10:55 AM > To: Elleyshay@...; chiari > > Dear , > Move to a distant land! > > Unfortunately I have had three cisternograms. It was to check for leaking > CSF. They found it pooled in the area of the cribiform plate (above the > nose), but not the actual source, just that I was leaking. > > There must be different protocols, as each one was different. The first one > the doctor (ENT?) literally shoved about 3 yards of material strips up into > my sinus cavities. I cannot say it was painful, but sure was uncomfortable. > I kept backing away as he did it. I could feel it snaking its way up > inside. My wife held my head and kept telling me to relax, and breathe. HA! > And it was soaked in some kind of drying agent and antibiotic that tasted > terrible. > After he dredged the area, he shoved six pledgits (sp?) up my nose with > string attached to them, and that was taped to my face. (I looked like a > character from " CATS " lol) I kept them in for 24 hours, had a lumbar > puncture with some kind of radioactive dye, then at some predetermined > intervals, they put me under some kind of machine, and had me hold my head > in different positions. And told me I could not move. A couple of times > they taped my head in position. It was pretty gruelling actually. The dye > showed up on a screen and on printouts, I think it was the bright pink > areas. > > The second one did not include the prepping and dredging, but was pretty > similar, except that the doctor agreed with my suggestion to put me in a > sloped position between pictures. YUCK! I was thinking slight incline, > they were thinking almost standing on my head (not as bad as the myleogram, > shudder!) I was sure that the head rest was going to give way, and I > pictured myself sliding down the hall from the momentum. Anything to keep > smiling, right! > > The third was similar to the second, except a resident (or kitchen food prep > worker) did the puncture and I stopped counting at about 17 " sorries " and > told her to just stick it in or get someone else. I was a bit testy that > day. > > I believe that the removal of the pledgetts was one of the most wonderful > things. It was weird feeling as they pulled them out (they were quite high > in the sinus cavities, or nasal cavity) And to finally blow my nose. Only > chocolate ice cream could be better! > > I think you should insist that you both be knocked out. I can't imagine a > seven year old going through that. The ENT who shoved all the gauze > stripping up my nose, said something like, " you should see how much I can > get up into a football player's nose " . I do remember that it was several > yards that he mentioned, but don't remember the actual number. I remember > thinking, thank God I'm a musician and not a football player -- LOL > > hope this helps. I just remember I hated the whole thing. > Peace, > joe in PA, ACM1, 8mm decompressed 1999 Mayo Clinic apologies, no spell check > was run > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2003 Report Share Posted May 22, 2003 Hi Faith, Thank you. This is pretty much what was explained to us. will have conscious sedation. We have iodine allergies that run in my family (anaphylactic response to shellfish), so there will be some other meds like benedryl started the day before to combat any possible reactions. We are hoping the test may give some clues as to the mysteries of 's symptoms. We will probably tell her in simple terms the day before or the morning of. Best wishes, RE: CT Cisternogram? > > Our daughter has had two cisternograms. However, she has never had the > gauze situation in either test. > > They have simply (notice it wasn't my spine) did a spinal tap and inserted a > radioactive dye. They immediately did films (I believe CAT Scan type). > They we waited a little while and they took more films. We then had to > return the next morning and the morning after that to have films taken. > > With this testing, they were able to see the actual flow of dye and if it > made it through the entire system. > > Other than the spinal tap, it really wasn't painful for her at all. I would > contact the doctor that ordered the testing and see if he can explain it > better to you and then don't hide the truth from your daughter. I have > always found out that the truth has paid off where Kate was concerned. I > didn't tell her days a head of the test but we did talk a day or so before. > > Faith > > > _________________________________ > and Faith Webb > > > > -----Original Message----- > From: JJGIBSON@... > Sent: Thursday, May 22, 2003 10:55 AM > To: Elleyshay@...; chiari > > Dear , > Move to a distant land! > > Unfortunately I have had three cisternograms. It was to check for leaking > CSF. They found it pooled in the area of the cribiform plate (above the > nose), but not the actual source, just that I was leaking. > > There must be different protocols, as each one was different. The first one > the doctor (ENT?) literally shoved about 3 yards of material strips up into > my sinus cavities. I cannot say it was painful, but sure was uncomfortable. > I kept backing away as he did it. I could feel it snaking its way up > inside. My wife held my head and kept telling me to relax, and breathe. HA! > And it was soaked in some kind of drying agent and antibiotic that tasted > terrible. > After he dredged the area, he shoved six pledgits (sp?) up my nose with > string attached to them, and that was taped to my face. (I looked like a > character from " CATS " lol) I kept them in for 24 hours, had a lumbar > puncture with some kind of radioactive dye, then at some predetermined > intervals, they put me under some kind of machine, and had me hold my head > in different positions. And told me I could not move. A couple of times > they taped my head in position. It was pretty gruelling actually. The dye > showed up on a screen and on printouts, I think it was the bright pink > areas. > > The second one did not include the prepping and dredging, but was pretty > similar, except that the doctor agreed with my suggestion to put me in a > sloped position between pictures. YUCK! I was thinking slight incline, > they were thinking almost standing on my head (not as bad as the myleogram, > shudder!) I was sure that the head rest was going to give way, and I > pictured myself sliding down the hall from the momentum. Anything to keep > smiling, right! > > The third was similar to the second, except a resident (or kitchen food prep > worker) did the puncture and I stopped counting at about 17 " sorries " and > told her to just stick it in or get someone else. I was a bit testy that > day. > > I believe that the removal of the pledgetts was one of the most wonderful > things. It was weird feeling as they pulled them out (they were quite high > in the sinus cavities, or nasal cavity) And to finally blow my nose. Only > chocolate ice cream could be better! > > I think you should insist that you both be knocked out. I can't imagine a > seven year old going through that. The ENT who shoved all the gauze > stripping up my nose, said something like, " you should see how much I can > get up into a football player's nose " . I do remember that it was several > yards that he mentioned, but don't remember the actual number. I remember > thinking, thank God I'm a musician and not a football player -- LOL > > hope this helps. I just remember I hated the whole thing. > Peace, > joe in PA, ACM1, 8mm decompressed 1999 Mayo Clinic apologies, no spell check > was run > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2003 Report Share Posted May 22, 2003 Hi Faith, Thank you. This is pretty much what was explained to us. will have conscious sedation. We have iodine allergies that run in my family (anaphylactic response to shellfish), so there will be some other meds like benedryl started the day before to combat any possible reactions. We are hoping the test may give some clues as to the mysteries of 's symptoms. We will probably tell her in simple terms the day before or the morning of. Best wishes, RE: CT Cisternogram? > > Our daughter has had two cisternograms. However, she has never had the > gauze situation in either test. > > They have simply (notice it wasn't my spine) did a spinal tap and inserted a > radioactive dye. They immediately did films (I believe CAT Scan type). > They we waited a little while and they took more films. We then had to > return the next morning and the morning after that to have films taken. > > With this testing, they were able to see the actual flow of dye and if it > made it through the entire system. > > Other than the spinal tap, it really wasn't painful for her at all. I would > contact the doctor that ordered the testing and see if he can explain it > better to you and then don't hide the truth from your daughter. I have > always found out that the truth has paid off where Kate was concerned. I > didn't tell her days a head of the test but we did talk a day or so before. > > Faith > > > _________________________________ > and Faith Webb > > > > -----Original Message----- > From: JJGIBSON@... > Sent: Thursday, May 22, 2003 10:55 AM > To: Elleyshay@...; chiari > > Dear , > Move to a distant land! > > Unfortunately I have had three cisternograms. It was to check for leaking > CSF. They found it pooled in the area of the cribiform plate (above the > nose), but not the actual source, just that I was leaking. > > There must be different protocols, as each one was different. The first one > the doctor (ENT?) literally shoved about 3 yards of material strips up into > my sinus cavities. I cannot say it was painful, but sure was uncomfortable. > I kept backing away as he did it. I could feel it snaking its way up > inside. My wife held my head and kept telling me to relax, and breathe. HA! > And it was soaked in some kind of drying agent and antibiotic that tasted > terrible. > After he dredged the area, he shoved six pledgits (sp?) up my nose with > string attached to them, and that was taped to my face. (I looked like a > character from " CATS " lol) I kept them in for 24 hours, had a lumbar > puncture with some kind of radioactive dye, then at some predetermined > intervals, they put me under some kind of machine, and had me hold my head > in different positions. And told me I could not move. A couple of times > they taped my head in position. It was pretty gruelling actually. The dye > showed up on a screen and on printouts, I think it was the bright pink > areas. > > The second one did not include the prepping and dredging, but was pretty > similar, except that the doctor agreed with my suggestion to put me in a > sloped position between pictures. YUCK! I was thinking slight incline, > they were thinking almost standing on my head (not as bad as the myleogram, > shudder!) I was sure that the head rest was going to give way, and I > pictured myself sliding down the hall from the momentum. Anything to keep > smiling, right! > > The third was similar to the second, except a resident (or kitchen food prep > worker) did the puncture and I stopped counting at about 17 " sorries " and > told her to just stick it in or get someone else. I was a bit testy that > day. > > I believe that the removal of the pledgetts was one of the most wonderful > things. It was weird feeling as they pulled them out (they were quite high > in the sinus cavities, or nasal cavity) And to finally blow my nose. Only > chocolate ice cream could be better! > > I think you should insist that you both be knocked out. I can't imagine a > seven year old going through that. The ENT who shoved all the gauze > stripping up my nose, said something like, " you should see how much I can > get up into a football player's nose " . I do remember that it was several > yards that he mentioned, but don't remember the actual number. I remember > thinking, thank God I'm a musician and not a football player -- LOL > > hope this helps. I just remember I hated the whole thing. > Peace, > joe in PA, ACM1, 8mm decompressed 1999 Mayo Clinic apologies, no spell check > was run > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2003 Report Share Posted May 25, 2003 What is this? I am thinking that it may be the same as a CT/Myelogram? Take Care, Brande, RHIT mymocha@... > Has anyone had a CT Cisternogram? My daughter has symptoms progressing, but all the MRI's show she looks well decompressed. The CT Cisternogram has been proposed as one avenue to try to look closer at what might be causing problems..............any personal experiences with this kind of testing? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2003 Report Share Posted May 25, 2003 What is this? I am thinking that it may be the same as a CT/Myelogram? Take Care, Brande, RHIT mymocha@... > Has anyone had a CT Cisternogram? My daughter has symptoms progressing, but all the MRI's show she looks well decompressed. The CT Cisternogram has been proposed as one avenue to try to look closer at what might be causing problems..............any personal experiences with this kind of testing? > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.