Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 HUGS  I must have missed " other " talk on this??? Praying for you that you get some answers anyway!HUGS...D  I just got a follow up call from my neurologist, and it looks like the problem is still there. I have very low CSF pressure still. It showed up on all the scans and tests. I told him I had been feeling better, but he cautioned me to go slower, and to follow up with him in a couple of weeks. One of two things: it either is getting better, or maybe it seemed better because of all that time in bed, but either way, I'm to take things really slow. I was getting ready to ramp it up a little. If this is still going on in a couple of weeks, there's another procedure. OK. Last night I noticed my hearing problem was as bad as ever, and that's my canary in the coal mine. OK then. I'm going to go wrap my mind around this challenge. Peace out, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Oh boo Doesn't it take time for the body to replace lost CSF? Are they sure they got all of the leaks? What is the other procedure? Sorry for all the questions so not helpful. Sending you all of my supportHugs,Vennitta I just got a follow up call from my neurologist, and it looks like the problem is still there. I have very low CSF pressure still. It showed up on all the scans and tests. I told him I had been feeling better, but he cautioned me to go slower, and to follow up with him in a couple of weeks. One of two things: it either is getting better, or maybe it seemed better because of all that time in bed, but either way, I'm to take things really slow. I was getting ready to ramp it up a little. If this is still going on in a couple of weeks, there's another procedure. OK. Last night I noticed my hearing problem was as bad as ever, and that's my canary in the coal mine. OK then. I'm going to go wrap my mind around this challenge. Peace out, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 ((HUGS))) I'm sorry to hear that and I'm praying it all resolves for you without any other issues!Donna Subject: well...To: exercisevideos Date: Friday, November 4, 2011, 3:44 PM I just got a follow up call from my neurologist, and it looks like the problem is still there. I have very low CSF pressure still. It showed up on all the scans and tests. I told him I had been feeling better, but he cautioned me to go slower, and to follow up with him in a couple of weeks. One of two things: it either is getting better, or maybe it seemed better because of all that time in bed, but either way, I'm to take things really slow. I was getting ready to ramp it up a little. If this is still going on in a couple of weeks, there's another procedure. OK. Last night I noticed my hearing problem was as bad as ever, and that's my canary in the coal mine. OK then. I'm going to go wrap my mind around this challenge. Peace out, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 UG! Stick to walking I guess before amping things up? I really, really hope this goes away on it's own. Hugs. Again, please keep us posted, ! I just got a follow up call from my neurologist, and it looks like the problem is still there. I have very low CSF pressure still. It showed up on all the scans and tests. I told him I had been feeling better, but he cautioned me to go slower, and to follow up with him in a couple of weeks. One of two things: it either is getting better, or maybe it seemed better because of all that time in bed, but either way, I'm to take things really slow. I was getting ready to ramp it up a little. If this is still going on in a couple of weeks, there's another procedure. OK. Last night I noticed my hearing problem was as bad as ever, and that's my canary in the coal mine. OK then. I'm going to go wrap my mind around this challenge. Peace out, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 It replaces itself more than 3 times per day. I can't keep up with it even so.OK, I was trying not to TMI all over you guys, but that's what the rest of this is, so move along if you're squeamish or not interested. They did everything they could on Monday trying to pinpoint the leak, and I had the best folks in a teaching hospital all over me, all day. I spent part of the day in Interventional Radiology, a lot of time in post op (puking) and the rest in Nuclear Medicine. Big guns. The best people. I have a really unusual case. " Tricky, slow leak " . They tell me there's no doubt that this is the problem because the low pressure is confirmed on all tests, and they've run the results past several departments and at least 5 other doctors saw the original MRIs. I was supposed to be there just for a few hours on Monday, and I was there for 9 hours just that day. I didn't eat for a total of 25 hours (IV fluids only). I had to fast pre-op. I cannot fall behind on water because this condition makes me so sick if I run dry. So I came into the procedure already nauseous. What a day that was. Because I was already so low before the procedure, it's like trying to find the leak in a bike tire after it is flat, but there's no way around that. They gave me IV, O2, morphine, sedatives and antiemetics, did a subdural spinal injection of dyes and radioactive isotopes and ran me through CT scanner and I had four separate sessions under the gamma camera, two on Monday, and again on Tuesday and Wednesday. On Monday, the pressure change from the puncture gave me an excruciating headache even though I had morphine. They had trouble controlling the vomiting the rest of the day. They did control the pain. I was STONED! I could tell how frustrated they were by Wednesday because they wanted to find it to target the treatment. That's the best fix. They were actually sad for me. They did see some faint readings showing that the problem might be in my skull, but too vague a signal be sure or to go digging after it. Thank goodness, right? No guessing allowed. So, when they couldn't definitively pinpoint it, I just assumed that it had fixed itself in the meantime because the nausea had stopped. However, that might just be because of all the rest I had. That's the pattern. Bedrest for a few days, I feel better, I get active, I crash hard. But, the neurologist said it is not fixed. It confirms my sinking feeling today. I was starting to feel bad again. No walks today. So, today I told my neurologist that I had been feeling better the past two days. There was a long pause, and he told me to take it slower. I call him in a couple of weeks if this isn't resolved, and then they do a blood patch. Another lumbar puncture. That's more like putting Slime in your bike tires, and less like putting a patch on the actual leak, but at least there's something. I'm a ridiculously stubborn optimist, though. I think I won't need it. So there. Oh boo Doesn't it take time for the body to replace lost CSF? Are they sure they got all of the leaks? What is the other procedure? Sorry for all the questions so not helpful. Sending you all of my supportHugs,Vennitta I just got a follow up call from my neurologist, and it looks like the problem is still there. I have very low CSF pressure still. It showed up on all the scans and tests. I told him I had been feeling better, but he cautioned me to go slower, and to follow up with him in a couple of weeks. One of two things: it either is getting better, or maybe it seemed better because of all that time in bed, but either way, I'm to take things really slow. I was getting ready to ramp it up a little. If this is still going on in a couple of weeks, there's another procedure. OK. Last night I noticed my hearing problem was as bad as ever, and that's my canary in the coal mine. OK then. I'm going to go wrap my mind around this challenge. Peace out, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 NOT tmi at all, it's sadly interesting And being stubbornly optimistic DOES help, it really, really does! I normally am NOT a fan of pop psych books but one I totally believe in is The Secret. There's a segment toward the end about a man in a coma who was told he'd never walk again but with the power of thought he now can. Outlooks plays *such* an important role in our well-being - good for you, ! We are cheering you on from the sidelines! It replaces itself more than 3 times per day. I can't keep up with it even so.OK, I was trying not to TMI all over you guys, but that's what the rest of this is, so move along if you're squeamish or not interested. They did everything they could on Monday trying to pinpoint the leak, and I had the best folks in a teaching hospital all over me, all day. I spent part of the day in Interventional Radiology, a lot of time in post op (puking) and the rest in Nuclear Medicine. Big guns. The best people. I have a really unusual case. " Tricky, slow leak " . They tell me there's no doubt that this is the problem because the low pressure is confirmed on all tests, and they've run the results past several departments and at least 5 other doctors saw the original MRIs. I was supposed to be there just for a few hours on Monday, and I was there for 9 hours just that day. I didn't eat for a total of 25 hours (IV fluids only). I had to fast pre-op. I cannot fall behind on water because this condition makes me so sick if I run dry. So I came into the procedure already nauseous. What a day that was. Because I was already so low before the procedure, it's like trying to find the leak in a bike tire after it is flat, but there's no way around that. They gave me IV, O2, morphine, sedatives and antiemetics, did a subdural spinal injection of dyes and radioactive isotopes and ran me through CT scanner and I had four separate sessions under the gamma camera, two on Monday, and again on Tuesday and Wednesday. On Monday, the pressure change from the puncture gave me an excruciating headache even though I had morphine. They had trouble controlling the vomiting the rest of the day. They did control the pain. I was STONED! I could tell how frustrated they were by Wednesday because they wanted to find it to target the treatment. That's the best fix. They were actually sad for me. They did see some faint readings showing that the problem might be in my skull, but too vague a signal be sure or to go digging after it. Thank goodness, right? No guessing allowed. So, when they couldn't definitively pinpoint it, I just assumed that it had fixed itself in the meantime because the nausea had stopped. However, that might just be because of all the rest I had. That's the pattern. Bedrest for a few days, I feel better, I get active, I crash hard. But, the neurologist said it is not fixed. It confirms my sinking feeling today. I was starting to feel bad again. No walks today. So, today I told my neurologist that I had been feeling better the past two days. There was a long pause, and he told me to take it slower. I call him in a couple of weeks if this isn't resolved, and then they do a blood patch. Another lumbar puncture. That's more like putting Slime in your bike tires, and less like putting a patch on the actual leak, but at least there's something. I'm a ridiculously stubborn optimist, though. I think I won't need it. So there. Oh boo Doesn't it take time for the body to replace lost CSF? Are they sure they got all of the leaks? What is the other procedure? Sorry for all the questions so not helpful. Sending you all of my supportHugs,Vennitta I just got a follow up call from my neurologist, and it looks like the problem is still there. I have very low CSF pressure still. It showed up on all the scans and tests. I told him I had been feeling better, but he cautioned me to go slower, and to follow up with him in a couple of weeks. One of two things: it either is getting better, or maybe it seemed better because of all that time in bed, but either way, I'm to take things really slow. I was getting ready to ramp it up a little. If this is still going on in a couple of weeks, there's another procedure. OK. Last night I noticed my hearing problem was as bad as ever, and that's my canary in the coal mine. OK then. I'm going to go wrap my mind around this challenge. Peace out, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Wow... Wow... Wow.. This is really tough stuff. But, you are much tougher. Much. I know very (very) well how hard it is to take things slowly too. Before my last reconstruction surgery (2 years ago), I asked the doc when I could start exercising again. He said, "Not nearly as soon as you think you'll be able to." I know too well how hard it is to wait for test results, wait for a diagnosis and action plan, wait for something to happen (or not). A friend of mine many years ago complimented me on my ability to not make myself completely insane waiting, I told her she was taking care of it for both of us because she was. I also want to compliment you for the same thing. Staying ridiculously optimistic in the face of all you've been through and all you've been told is, for some people, ridiculous itself but for you it obviously is not and you are a role model for anyone else facing extremely difficult circumstances (which does not mean that you're not allowed temporary meltdowns or anxious moments you know). All I can say again is wow... Stay optimistic, we're with you on it. Lots of hugs, Re: well... It replaces itself more than 3 times per day. I can't keep up with it even so. OK, I was trying not to TMI all over you guys, but that's what the rest of this is, so move along if you're squeamish or not interested. They did everything they could on Monday trying to pinpoint the leak, and I had the best folks in a teaching hospital all over me, all day. I spent part of the day in Interventional Radiology, a lot of time in post op (puking) and the rest in Nuclear Medicine. Big guns. The best people. I have a really unusual case. "Tricky, slow leak". They tell me there's no doubt that this is the problem because the low pressure is confirmed on all tests, and they've run the results past several departments and at least 5 other doctors saw the original MRIs. I was supposed to be there just for a few hours on Monday, and I was there for 9 hours just that day. I didn't eat for a total of 25 hours (IV fluids only). I had to fast pre-op. I cannot fall behind on water because this condition makes me so sick if I run dry. So I came into the procedure already nauseous. What a day that was. Because I was already so low before the procedure, it's like trying to find the leak in a bike tire after it is flat, but there's no way around that. They gave me IV, O2, morphine, sedatives and antiemetics, did a subdural spinal injection of dyes and radioactive isotopes and ran me through CT scanner and I had four separate sessions under the gamma camera, two on Monday, and again on Tuesday and Wednesday. On Monday, the pressure change from the puncture gave me an excruciating headache even though I had morphine. They had trouble controlling the vomiting the rest of the day. They did control the pain. I was STONED! I could tell how frustrated they were by Wednesday because they wanted to find it to target the treatment. That's the best fix. They were actually sad for me. They did see some faint readings showing that the problem might be in my skull, but too vague a signal be sure or to go digging after it. Thank goodness, right? No guessing allowed. So, when they couldn't definitively pinpoint it, I just assumed that it had fixed itself in the meantime because the nausea had stopped. However, that might just be because of all the rest I had. That's the pattern. Bedrest for a few days, I feel better, I get active, I crash hard. But, the neurologist said it is not fixed. It confirms my sinking feeling today. I was starting to feel bad again. No walks today. So, today I told my neurologist that I had been feeling better the past two days. There was a long pause, and he told me to take it slower. I call him in a couple of weeks if this isn't resolved, and then they do a blood patch. Another lumbar puncture. That's more like putting Slime in your bike tires, and less like putting a patch on the actual leak, but at least there's something. I'm a ridiculously stubborn optimist, though. I think I won't need it. So there. Oh boo Doesn't it take time for the body to replace lost CSF? Are they sure they got all of the leaks? What is the other procedure? Sorry for all the questions so not helpful. Sending you all of my support Hugs,Vennitta I just got a follow up call from my neurologist, and it looks like the problem is still there. I have very low CSF pressure still. It showed up on all the scans and tests. I told him I had been feeling better, but he cautioned me to go slower, and to follow up with him in a couple of weeks. One of two things: it either is getting better, or maybe it seemed better because of all that time in bed, but either way, I'm to take things really slow. I was getting ready to ramp it up a little. If this is still going on in a couple of weeks, there's another procedure. OK. Last night I noticed my hearing problem was as bad as ever, and that's my canary in the coal mine. OK then. I'm going to go wrap my mind around this challenge. Peace out, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Thanks . I'm only slightly familiar with The Secret, and not sure I buy it, but I can tell you one thing: being optimistic is simply easier and more fun - the path of least resistance. I'm to lazy to be a pessimist. That's hard work, baby. NOT tmi at all, it's sadly interesting And being stubbornly optimistic DOES help, it really, really does! I normally am NOT a fan of pop psych books but one I totally believe in is The Secret. There's a segment toward the end about a man in a coma who was told he'd never walk again but with the power of thought he now can. Outlooks plays *such* an important role in our well-being - good for you, ! We are cheering you on from the sidelines! It replaces itself more than 3 times per day. I can't keep up with it even so.OK, I was trying not to TMI all over you guys, but that's what the rest of this is, so move along if you're squeamish or not interested. They did everything they could on Monday trying to pinpoint the leak, and I had the best folks in a teaching hospital all over me, all day. I spent part of the day in Interventional Radiology, a lot of time in post op (puking) and the rest in Nuclear Medicine. Big guns. The best people. I have a really unusual case. " Tricky, slow leak " . They tell me there's no doubt that this is the problem because the low pressure is confirmed on all tests, and they've run the results past several departments and at least 5 other doctors saw the original MRIs. I was supposed to be there just for a few hours on Monday, and I was there for 9 hours just that day. I didn't eat for a total of 25 hours (IV fluids only). I had to fast pre-op. I cannot fall behind on water because this condition makes me so sick if I run dry. So I came into the procedure already nauseous. What a day that was. Because I was already so low before the procedure, it's like trying to find the leak in a bike tire after it is flat, but there's no way around that. They gave me IV, O2, morphine, sedatives and antiemetics, did a subdural spinal injection of dyes and radioactive isotopes and ran me through CT scanner and I had four separate sessions under the gamma camera, two on Monday, and again on Tuesday and Wednesday. On Monday, the pressure change from the puncture gave me an excruciating headache even though I had morphine. They had trouble controlling the vomiting the rest of the day. They did control the pain. I was STONED! I could tell how frustrated they were by Wednesday because they wanted to find it to target the treatment. That's the best fix. They were actually sad for me. They did see some faint readings showing that the problem might be in my skull, but too vague a signal be sure or to go digging after it. Thank goodness, right? No guessing allowed. So, when they couldn't definitively pinpoint it, I just assumed that it had fixed itself in the meantime because the nausea had stopped. However, that might just be because of all the rest I had. That's the pattern. Bedrest for a few days, I feel better, I get active, I crash hard. But, the neurologist said it is not fixed. It confirms my sinking feeling today. I was starting to feel bad again. No walks today. So, today I told my neurologist that I had been feeling better the past two days. There was a long pause, and he told me to take it slower. I call him in a couple of weeks if this isn't resolved, and then they do a blood patch. Another lumbar puncture. That's more like putting Slime in your bike tires, and less like putting a patch on the actual leak, but at least there's something. I'm a ridiculously stubborn optimist, though. I think I won't need it. So there. Oh boo Doesn't it take time for the body to replace lost CSF? Are they sure they got all of the leaks? What is the other procedure? Sorry for all the questions so not helpful. Sending you all of my supportHugs,Vennitta I just got a follow up call from my neurologist, and it looks like the problem is still there. I have very low CSF pressure still. It showed up on all the scans and tests. I told him I had been feeling better, but he cautioned me to go slower, and to follow up with him in a couple of weeks. One of two things: it either is getting better, or maybe it seemed better because of all that time in bed, but either way, I'm to take things really slow. I was getting ready to ramp it up a little. If this is still going on in a couple of weeks, there's another procedure. OK. Last night I noticed my hearing problem was as bad as ever, and that's my canary in the coal mine. OK then. I'm going to go wrap my mind around this challenge. Peace out, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 LOL!!! So true (about it being more fun)!! I don't know about it being easier though, it seems like it is easier to give into frustration and hopelessness sometimes but, then again, it is much more difficult to live that way for more than a very short while so optimism wins again! Re: well... Thanks . I'm only slightly familiar with The Secret, and not sure I buy it, but I can tell you one thing: being optimistic is simply easier and more fun - the path of least resistance. I'm to lazy to be a pessimist. That's hard work, baby. NOT tmi at all, it's sadly interesting And being stubbornly optimistic DOES help, it really, really does! I normally am NOT a fan of pop psych books but one I totally believe in is The Secret. There's a segment toward the end about a man in a coma who was told he'd never walk again but with the power of thought he now can. Outlooks plays *such* an important role in our well-being - good for you, ! We are cheering you on from the sidelines! It replaces itself more than 3 times per day. I can't keep up with it even so. OK, I was trying not to TMI all over you guys, but that's what the rest of this is, so move along if you're squeamish or not interested. They did everything they could on Monday trying to pinpoint the leak, and I had the best folks in a teaching hospital all over me, all day. I spent part of the day in Interventional Radiology, a lot of time in post op (puking) and the rest in Nuclear Medicine. Big guns. The best people. I have a really unusual case. "Tricky, slow leak". They tell me there's no doubt that this is the problem because the low pressure is confirmed on all tests, and they've run the results past several departments and at least 5 other doctors saw the original MRIs. I was supposed to be there just for a few hours on Monday, and I was there for 9 hours just that day. I didn't eat for a total of 25 hours (IV fluids only). I had to fast pre-op. I cannot fall behind on water because this condition makes me so sick if I run dry. So I came into the procedure already nauseous. What a day that was. Because I was already so low before the procedure, it's like trying to find the leak in a bike tire after it is flat, but there's no way around that. They gave me IV, O2, morphine, sedatives and antiemetics, did a subdural spinal injection of dyes and radioactive isotopes and ran me through CT scanner and I had four separate sessions under the gamma camera, two on Monday, and again on Tuesday and Wednesday. On Monday, the pressure change from the puncture gave me an excruciating headache even though I had morphine. They had trouble controlling the vomiting the rest of the day. They did control the pain. I was STONED! I could tell how frustrated they were by Wednesday because they wanted to find it to target the treatment. That's the best fix. They were actually sad for me. They did see some faint readings showing that the problem might be in my skull, but too vague a signal be sure or to go digging after it. Thank goodness, right? No guessing allowed. So, when they couldn't definitively pinpoint it, I just assumed that it had fixed itself in the meantime because the nausea had stopped. However, that might just be because of all the rest I had. That's the pattern. Bedrest for a few days, I feel better, I get active, I crash hard. But, the neurologist said it is not fixed. It confirms my sinking feeling today. I was starting to feel bad again. No walks today. So, today I told my neurologist that I had been feeling better the past two days. There was a long pause, and he told me to take it slower. I call him in a couple of weeks if this isn't resolved, and then they do a blood patch. Another lumbar puncture. That's more like putting Slime in your bike tires, and less like putting a patch on the actual leak, but at least there's something. I'm a ridiculously stubborn optimist, though. I think I won't need it. So there. Oh boo Doesn't it take time for the body to replace lost CSF? Are they sure they got all of the leaks? What is the other procedure? Sorry for all the questions so not helpful. Sending you all of my support Hugs,Vennitta I just got a follow up call from my neurologist, and it looks like the problem is still there. I have very low CSF pressure still. It showed up on all the scans and tests. I told him I had been feeling better, but he cautioned me to go slower, and to follow up with him in a couple of weeks. One of two things: it either is getting better, or maybe it seemed better because of all that time in bed, but either way, I'm to take things really slow. I was getting ready to ramp it up a little. If this is still going on in a couple of weeks, there's another procedure. OK. Last night I noticed my hearing problem was as bad as ever, and that's my canary in the coal mine. OK then. I'm going to go wrap my mind around this challenge. Peace out, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Aw, hugs, ! You are so kind. It's not that hard for me considering they ruled out the truly scary stuff: brain tumors! This is a teeny, tiny little pinhole somewhere, and that puts it into perspective. This does not compare to cancer and its aftermath, so thank you so much for your generosity and empathy. ....and on Wednesday, when I spent some time in a waiting room for cardiology and nuclear medicine, I watched REALLY sick people come and go. Really puts things into perspective. Wow... Wow... Wow.. This is really tough stuff. But, you are much tougher. Much. I know very (very) well how hard it is to take things slowly too. Before my last reconstruction surgery (2 years ago), I asked the doc when I could start exercising again. He said, " Not nearly as soon as you think you'll be able to. " I know too well how hard it is to wait for test results, wait for a diagnosis and action plan, wait for something to happen (or not). A friend of mine many years ago complimented me on my ability to not make myself completely insane waiting, I told her she was taking care of it for both of us because she was. I also want to compliment you for the same thing. Staying ridiculously optimistic in the face of all you've been through and all you've been told is, for some people, ridiculous itself but for you it obviously is not and you are a role model for anyone else facing extremely difficult circumstances (which does not mean that you're not allowed temporary meltdowns or anxious moments you know). All I can say again is wow... Stay optimistic, we're with you on it. Lots of hugs, Re: well... It replaces itself more than 3 times per day. I can't keep up with it even so. OK, I was trying not to TMI all over you guys, but that's what the rest of this is, so move along if you're squeamish or not interested. They did everything they could on Monday trying to pinpoint the leak, and I had the best folks in a teaching hospital all over me, all day. I spent part of the day in Interventional Radiology, a lot of time in post op (puking) and the rest in Nuclear Medicine. Big guns. The best people. I have a really unusual case. " Tricky, slow leak " . They tell me there's no doubt that this is the problem because the low pressure is confirmed on all tests, and they've run the results past several departments and at least 5 other doctors saw the original MRIs. I was supposed to be there just for a few hours on Monday, and I was there for 9 hours just that day. I didn't eat for a total of 25 hours (IV fluids only). I had to fast pre-op. I cannot fall behind on water because this condition makes me so sick if I run dry. So I came into the procedure already nauseous. What a day that was. Because I was already so low before the procedure, it's like trying to find the leak in a bike tire after it is flat, but there's no way around that. They gave me IV, O2, morphine, sedatives and antiemetics, did a subdural spinal injection of dyes and radioactive isotopes and ran me through CT scanner and I had four separate sessions under the gamma camera, two on Monday, and again on Tuesday and Wednesday. On Monday, the pressure change from the puncture gave me an excruciating headache even though I had morphine. They had trouble controlling the vomiting the rest of the day. They did control the pain. I was STONED! I could tell how frustrated they were by Wednesday because they wanted to find it to target the treatment. That's the best fix. They were actually sad for me. They did see some faint readings showing that the problem might be in my skull, but too vague a signal be sure or to go digging after it. Thank goodness, right? No guessing allowed. So, when they couldn't definitively pinpoint it, I just assumed that it had fixed itself in the meantime because the nausea had stopped. However, that might just be because of all the rest I had. That's the pattern. Bedrest for a few days, I feel better, I get active, I crash hard. But, the neurologist said it is not fixed. It confirms my sinking feeling today. I was starting to feel bad again. No walks today. So, today I told my neurologist that I had been feeling better the past two days. There was a long pause, and he told me to take it slower. I call him in a couple of weeks if this isn't resolved, and then they do a blood patch. Another lumbar puncture. That's more like putting Slime in your bike tires, and less like putting a patch on the actual leak, but at least there's something. I'm a ridiculously stubborn optimist, though. I think I won't need it. So there. Oh boo Doesn't it take time for the body to replace lost CSF? Are they sure they got all of the leaks? What is the other procedure? Sorry for all the questions so not helpful. Sending you all of my support Hugs,Vennitta I just got a follow up call from my neurologist, and it looks like the problem is still there. I have very low CSF pressure still. It showed up on all the scans and tests. I told him I had been feeling better, but he cautioned me to go slower, and to follow up with him in a couple of weeks. One of two things: it either is getting better, or maybe it seemed better because of all that time in bed, but either way, I'm to take things really slow. I was getting ready to ramp it up a little. If this is still going on in a couple of weeks, there's another procedure. OK. Last night I noticed my hearing problem was as bad as ever, and that's my canary in the coal mine. OK then. I'm going to go wrap my mind around this challenge. Peace out, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Yep! Pessimism is only easier in the short term! In the long run, it's misery, and that's HARD. LOL!!! So true (about it being more fun)!! I don't know about it being easier though, it seems like it is easier to give into frustration and hopelessness sometimes but, then again, it is much more difficult to live that way for more than a very short while so optimism wins again! Re: well... Thanks . I'm only slightly familiar with The Secret, and not sure I buy it, but I can tell you one thing: being optimistic is simply easier and more fun - the path of least resistance. I'm to lazy to be a pessimist. That's hard work, baby. NOT tmi at all, it's sadly interesting And being stubbornly optimistic DOES help, it really, really does! I normally am NOT a fan of pop psych books but one I totally believe in is The Secret. There's a segment toward the end about a man in a coma who was told he'd never walk again but with the power of thought he now can. Outlooks plays *such* an important role in our well-being - good for you, ! We are cheering you on from the sidelines! It replaces itself more than 3 times per day. I can't keep up with it even so. OK, I was trying not to TMI all over you guys, but that's what the rest of this is, so move along if you're squeamish or not interested. They did everything they could on Monday trying to pinpoint the leak, and I had the best folks in a teaching hospital all over me, all day. I spent part of the day in Interventional Radiology, a lot of time in post op (puking) and the rest in Nuclear Medicine. Big guns. The best people. I have a really unusual case. " Tricky, slow leak " . They tell me there's no doubt that this is the problem because the low pressure is confirmed on all tests, and they've run the results past several departments and at least 5 other doctors saw the original MRIs. I was supposed to be there just for a few hours on Monday, and I was there for 9 hours just that day. I didn't eat for a total of 25 hours (IV fluids only). I had to fast pre-op. I cannot fall behind on water because this condition makes me so sick if I run dry. So I came into the procedure already nauseous. What a day that was. Because I was already so low before the procedure, it's like trying to find the leak in a bike tire after it is flat, but there's no way around that. They gave me IV, O2, morphine, sedatives and antiemetics, did a subdural spinal injection of dyes and radioactive isotopes and ran me through CT scanner and I had four separate sessions under the gamma camera, two on Monday, and again on Tuesday and Wednesday. On Monday, the pressure change from the puncture gave me an excruciating headache even though I had morphine. They had trouble controlling the vomiting the rest of the day. They did control the pain. I was STONED! I could tell how frustrated they were by Wednesday because they wanted to find it to target the treatment. That's the best fix. They were actually sad for me. They did see some faint readings showing that the problem might be in my skull, but too vague a signal be sure or to go digging after it. Thank goodness, right? No guessing allowed. So, when they couldn't definitively pinpoint it, I just assumed that it had fixed itself in the meantime because the nausea had stopped. However, that might just be because of all the rest I had. That's the pattern. Bedrest for a few days, I feel better, I get active, I crash hard. But, the neurologist said it is not fixed. It confirms my sinking feeling today. I was starting to feel bad again. No walks today. So, today I told my neurologist that I had been feeling better the past two days. There was a long pause, and he told me to take it slower. I call him in a couple of weeks if this isn't resolved, and then they do a blood patch. Another lumbar puncture. That's more like putting Slime in your bike tires, and less like putting a patch on the actual leak, but at least there's something. I'm a ridiculously stubborn optimist, though. I think I won't need it. So there. Oh boo Doesn't it take time for the body to replace lost CSF? Are they sure they got all of the leaks? What is the other procedure? Sorry for all the questions so not helpful. Sending you all of my support Hugs,Vennitta I just got a follow up call from my neurologist, and it looks like the problem is still there. I have very low CSF pressure still. It showed up on all the scans and tests. I told him I had been feeling better, but he cautioned me to go slower, and to follow up with him in a couple of weeks. One of two things: it either is getting better, or maybe it seemed better because of all that time in bed, but either way, I'm to take things really slow. I was getting ready to ramp it up a little. If this is still going on in a couple of weeks, there's another procedure. OK. Last night I noticed my hearing problem was as bad as ever, and that's my canary in the coal mine. OK then. I'm going to go wrap my mind around this challenge. Peace out, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Thanks Darcy! It'll be OK. HUGS I must have missed " other " talk on this??? Praying for you that you get some answers anyway!HUGS...D I just got a follow up call from my neurologist, and it looks like the problem is still there. I have very low CSF pressure still. It showed up on all the scans and tests. I told him I had been feeling better, but he cautioned me to go slower, and to follow up with him in a couple of weeks. One of two things: it either is getting better, or maybe it seemed better because of all that time in bed, but either way, I'm to take things really slow. I was getting ready to ramp it up a little. If this is still going on in a couple of weeks, there's another procedure. OK. Last night I noticed my hearing problem was as bad as ever, and that's my canary in the coal mine. OK then. I'm going to go wrap my mind around this challenge. Peace out, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Thank you! I'm hoping! ((HUGS))) I'm sorry to hear that and I'm praying it all resolves for you without any other issues!Donna Subject: well... To: exercisevideos Date: Friday, November 4, 2011, 3:44 PM I just got a follow up call from my neurologist, and it looks like the problem is still there. I have very low CSF pressure still. It showed up on all the scans and tests. I told him I had been feeling better, but he cautioned me to go slower, and to follow up with him in a couple of weeks. One of two things: it either is getting better, or maybe it seemed better because of all that time in bed, but either way, I'm to take things really slow. I was getting ready to ramp it up a little. If this is still going on in a couple of weeks, there's another procedure. OK. Last night I noticed my hearing problem was as bad as ever, and that's my canary in the coal mine. OK then. I'm going to go wrap my mind around this challenge. Peace out, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 .. One of two things: it either is getting better, or maybe it seemed better because of all that time in bed, but either way, I'm to take things really slow. I was getting ready to ramp it up a little. I'm sorry it hasn't gotten better for you, . Praying that it goes away on its own. (((HUGS))) ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 So, when they couldn't definitively pinpoint it, I just assumed that it had fixed itself in the meantime because the nausea had stopped. However, that might just be because of all the rest I had. That's the pattern. Bedrest for a few days, I feel better, I get active, I crash hard. But, the neurologist said it is not fixed. It confirms my sinking feeling today. I was starting to feel bad again. No walks today. WOW, you are a real trooper, . I can't imagine going through all of that. You are tough!!!! You hang in there. ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Thanks . I'm only slightly familiar with The Secret, and not sure I buy it, but I can tell you one thing: being optimistic is simply easier and more fun - the path of least resistance. I'm to lazy to be a pessimist. That's hard work, baby. I read "The Secret" and really got into it. I'm not sure how true it really is, but it helps you be positive and that's what we need the most. I'm a very negative person and always see the bad that's around and that's coming. This book really helped me. ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Hi , Thank you, and I am so glad that the book helped you! That's huge. Thanks . I'm only slightly familiar with The Secret, and not sure I buy it, but I can tell you one thing: being optimistic is simply easier and more fun - the path of least resistance. I'm to lazy to be a pessimist. That's hard work, baby. I read " The Secret " and really got into it. I'm not sure how true it really is, but it helps you be positive and that's what we need the most. I'm a very negative person and always see the bad that's around and that's coming. This book really helped me. ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Darn! I was hoping you'd be up and at 'em by now! I will keep you in my prayers! Indyrose > > I just got a follow up call from my neurologist, and it looks like the > problem is still there. I have very low CSF pressure still. It showed up on > all the scans and tests. I told him I had been feeling better, but he > cautioned me to go slower, and to follow up with him in a couple of weeks. > One of two things: it either is getting better, or maybe it seemed better > because of all that time in bed, but either way, I'm to take things really > slow. I was getting ready to ramp it up a little. > > If this is still going on in a couple of weeks, there's another procedure. > OK. Last night I noticed my hearing problem was as bad as ever, and that's > my canary in the coal mine. > > OK then. I'm going to go wrap my mind around this challenge. > > Peace out, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Oops! I didn't finish that thought. I did that and it helps for a while, but since it doesn't cure it, I'm usually trashed a few days later. We did lots of troubleshooting. We went step by step. I have a slow leak, and the cases you usually read about online are more acute and more short-lived, like what happens when a spinal tap doesn't seal up. Mine is strange and chronic. Jen, my case is unusual. I have gone step One place online said that you should have complete bed-rest...did you do that? I know online isn't always accurate but bed-rest makes sense to me. Jen--- On Fri, 11/4/11, Pink Pussycat wrote: Subject: Re: well...To: exercisevideos Date: Friday, November 4, 2011, 4:41 PM UG! Stick to walking I guess before amping things up? I really, really hope this goes away on it's own. Hugs. Again, please keep us posted, !On Fri, Nov 4, 2011 at 12:44 PM, A. M. wrote: I just got a follow up call from my neurologist, and it looks like the problem is still there. I have very low CSF pressure still. It showed up on all the scans and tests. I told him I had been feeling better, but he cautioned me to go slower, and to follow up with him in a couple of weeks. One of two things: it either is getting better, or maybe it seemed better because of all that time in bed, but either way, I'm to take things really slow. I was getting ready to ramp it up a little. If this is still going on in a couple of weeks, there's another procedure. OK. Last night I noticed my hearing problem was as bad as ever, and that's my canary in the coal mine. OK then. I'm going to go wrap my mind around this challenge. Peace out, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2011 Report Share Posted November 5, 2011 Yahoo is freaking wacky!! I just got your post .Stay stubbornly optimistic! Your mindset is a big part of healing. Your body may really fix itself, just on its own schedule not ours. This is a fascinating case I just wish you weren't going through all of this. Its good that they are not doing exploratory surgery and I'm very glad that you are surrounded by the best people. As difficult as it is keep resting and staying hydrated.I'll keep sending you healing vibesTake care and like says keep us updated Vennitta It replaces itself more than 3 times per day. I can't keep up with it even so.OK, I was trying not to TMI all over you guys, but that's what the rest of this is, so move along if you're squeamish or not interested. They did everything they could on Monday trying to pinpoint the leak, and I had the best folks in a teaching hospital all over me, all day. I spent part of the day in Interventional Radiology, a lot of time in post op (puking) and the rest in Nuclear Medicine. Big guns. The best people. I have a really unusual case. " Tricky, slow leak " . They tell me there's no doubt that this is the problem because the low pressure is confirmed on all tests, and they've run the results past several departments and at least 5 other doctors saw the original MRIs. I was supposed to be there just for a few hours on Monday, and I was there for 9 hours just that day. I didn't eat for a total of 25 hours (IV fluids only). I had to fast pre-op. I cannot fall behind on water because this condition makes me so sick if I run dry. So I came into the procedure already nauseous. What a day that was. Because I was already so low before the procedure, it's like trying to find the leak in a bike tire after it is flat, but there's no way around that. They gave me IV, O2, morphine, sedatives and antiemetics, did a subdural spinal injection of dyes and radioactive isotopes and ran me through CT scanner and I had four separate sessions under the gamma camera, two on Monday, and again on Tuesday and Wednesday. On Monday, the pressure change from the puncture gave me an excruciating headache even though I had morphine. They had trouble controlling the vomiting the rest of the day. They did control the pain. I was STONED! I could tell how frustrated they were by Wednesday because they wanted to find it to target the treatment. That's the best fix. They were actually sad for me. They did see some faint readings showing that the problem might be in my skull, but too vague a signal be sure or to go digging after it. Thank goodness, right? No guessing allowed. So, when they couldn't definitively pinpoint it, I just assumed that it had fixed itself in the meantime because the nausea had stopped. However, that might just be because of all the rest I had. That's the pattern. Bedrest for a few days, I feel better, I get active, I crash hard. But, the neurologist said it is not fixed. It confirms my sinking feeling today. I was starting to feel bad again. No walks today. So, today I told my neurologist that I had been feeling better the past two days. There was a long pause, and he told me to take it slower. I call him in a couple of weeks if this isn't resolved, and then they do a blood patch. Another lumbar puncture. That's more like putting Slime in your bike tires, and less like putting a patch on the actual leak, but at least there's something. I'm a ridiculously stubborn optimist, though. I think I won't need it. So there. Oh boo Doesn't it take time for the body to replace lost CSF? Are they sure they got all of the leaks? What is the other procedure? Sorry for all the questions so not helpful. Sending you all of my supportHugs,Vennitta I just got a follow up call from my neurologist, and it looks like the problem is still there. I have very low CSF pressure still. It showed up on all the scans and tests. I told him I had been feeling better, but he cautioned me to go slower, and to follow up with him in a couple of weeks. One of two things: it either is getting better, or maybe it seemed better because of all that time in bed, but either way, I'm to take things really slow. I was getting ready to ramp it up a little. If this is still going on in a couple of weeks, there's another procedure. OK. Last night I noticed my hearing problem was as bad as ever, and that's my canary in the coal mine. OK then. I'm going to go wrap my mind around this challenge. Peace out, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2011 Report Share Posted November 5, 2011 I know very (very) well how hard it is to take things slowly too. Before my last reconstruction surgery (2 years ago), I asked the doc when I could start exercising again. He said, " Not nearly as soon as you think you'll be able to. " Oh this made me smile, I can only imagine his expression. Vennitta Wow... Wow... Wow.. This is really tough stuff. But, you are much tougher. Much. I know very (very) well how hard it is to take things slowly too. Before my last reconstruction surgery (2 years ago), I asked the doc when I could start exercising again. He said, " Not nearly as soon as you think you'll be able to. " I know too well how hard it is to wait for test results, wait for a diagnosis and action plan, wait for something to happen (or not). A friend of mine many years ago complimented me on my ability to not make myself completely insane waiting, I told her she was taking care of it for both of us because she was. I also want to compliment you for the same thing. Staying ridiculously optimistic in the face of all you've been through and all you've been told is, for some people, ridiculous itself but for you it obviously is not and you are a role model for anyone else facing extremely difficult circumstances (which does not mean that you're not allowed temporary meltdowns or anxious moments you know). All I can say again is wow... Stay optimistic, we're with you on it. Lots of hugs, Re: well... It replaces itself more than 3 times per day. I can't keep up with it even so. OK, I was trying not to TMI all over you guys, but that's what the rest of this is, so move along if you're squeamish or not interested. They did everything they could on Monday trying to pinpoint the leak, and I had the best folks in a teaching hospital all over me, all day. I spent part of the day in Interventional Radiology, a lot of time in post op (puking) and the rest in Nuclear Medicine. Big guns. The best people. I have a really unusual case. " Tricky, slow leak " . They tell me there's no doubt that this is the problem because the low pressure is confirmed on all tests, and they've run the results past several departments and at least 5 other doctors saw the original MRIs. I was supposed to be there just for a few hours on Monday, and I was there for 9 hours just that day. I didn't eat for a total of 25 hours (IV fluids only). I had to fast pre-op. I cannot fall behind on water because this condition makes me so sick if I run dry. So I came into the procedure already nauseous. What a day that was. Because I was already so low before the procedure, it's like trying to find the leak in a bike tire after it is flat, but there's no way around that. They gave me IV, O2, morphine, sedatives and antiemetics, did a subdural spinal injection of dyes and radioactive isotopes and ran me through CT scanner and I had four separate sessions under the gamma camera, two on Monday, and again on Tuesday and Wednesday. On Monday, the pressure change from the puncture gave me an excruciating headache even though I had morphine. They had trouble controlling the vomiting the rest of the day. They did control the pain. I was STONED! I could tell how frustrated they were by Wednesday because they wanted to find it to target the treatment. That's the best fix. They were actually sad for me. They did see some faint readings showing that the problem might be in my skull, but too vague a signal be sure or to go digging after it. Thank goodness, right? No guessing allowed. So, when they couldn't definitively pinpoint it, I just assumed that it had fixed itself in the meantime because the nausea had stopped. However, that might just be because of all the rest I had. That's the pattern. Bedrest for a few days, I feel better, I get active, I crash hard. But, the neurologist said it is not fixed. It confirms my sinking feeling today. I was starting to feel bad again. No walks today. So, today I told my neurologist that I had been feeling better the past two days. There was a long pause, and he told me to take it slower. I call him in a couple of weeks if this isn't resolved, and then they do a blood patch. Another lumbar puncture. That's more like putting Slime in your bike tires, and less like putting a patch on the actual leak, but at least there's something. I'm a ridiculously stubborn optimist, though. I think I won't need it. So there. Oh boo Doesn't it take time for the body to replace lost CSF? Are they sure they got all of the leaks? What is the other procedure? Sorry for all the questions so not helpful. Sending you all of my support Hugs,Vennitta I just got a follow up call from my neurologist, and it looks like the problem is still there. I have very low CSF pressure still. It showed up on all the scans and tests. I told him I had been feeling better, but he cautioned me to go slower, and to follow up with him in a couple of weeks. One of two things: it either is getting better, or maybe it seemed better because of all that time in bed, but either way, I'm to take things really slow. I was getting ready to ramp it up a little. If this is still going on in a couple of weeks, there's another procedure. OK. Last night I noticed my hearing problem was as bad as ever, and that's my canary in the coal mine. OK then. I'm going to go wrap my mind around this challenge. Peace out, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2011 Report Share Posted November 5, 2011 Ugh, sounds so frustrating. Your outlook is awesome though. Keep positive, and know this will be in the past, hopefully very soon.HUGS.. D  It replaces itself more than 3 times per day. I can't keep up with it even so.OK, I was trying not to TMI all over you guys, but that's what the rest of this is, so move along if you're squeamish or not interested. They did everything they could on Monday trying to pinpoint the leak, and I had the best folks in a teaching hospital all over me, all day. I spent part of the day in Interventional Radiology, a lot of time in post op (puking) and the rest in Nuclear Medicine. Big guns. The best people. I have a really unusual case. " Tricky, slow leak " . They tell me there's no doubt that this is the problem because the low pressure is confirmed on all tests, and they've run the results past several departments and at least 5 other doctors saw the original MRIs. I was supposed to be there just for a few hours on Monday, and I was there for 9 hours just that day. I didn't eat for a total of 25 hours (IV fluids only). I had to fast pre-op.  I cannot fall behind on water because this condition makes me so sick if I run dry. So I came into the procedure already nauseous. What a day that was. Because I was already so low before the procedure, it's like trying to find the leak in a bike tire after it is flat, but there's no way around that. They gave me IV, O2, morphine, sedatives and antiemetics, did a subdural spinal injection of dyes and radioactive isotopes and ran me through CT scanner and I had four separate sessions under the gamma camera, two on Monday, and again on Tuesday and Wednesday.  On Monday, the pressure change from the puncture gave me an excruciating headache even though I had morphine. They had trouble controlling the vomiting the rest of the day. They did control the pain. I was STONED! I could tell how frustrated they were by Wednesday because they wanted to find it to target the treatment. That's the best fix. They were actually sad for me. They did see some faint readings showing that the problem might be in my skull, but too vague a signal be sure or to go digging after it. Thank goodness, right? No guessing allowed. So, when they couldn't definitively pinpoint it, I just assumed that it had fixed itself in the meantime because the nausea had stopped. However, that might just be because of all the rest I had. That's the pattern. Bedrest for a few days, I feel better, I get active, I crash hard. But, the neurologist said it is not fixed. It confirms my sinking feeling today. I was starting to feel bad again. No walks today. So, today I told my neurologist that I had been feeling better the past two days. There was a long pause, and he told me to take it slower. I call him in a couple of weeks if this isn't resolved, and then they do a blood patch. Another lumbar puncture. That's more like putting Slime in your bike tires, and less like putting a patch on the actual leak, but at least there's something. I'm a ridiculously stubborn optimist, though. I think I won't need it. So there. Oh boo Doesn't it take time for the body to replace lost CSF? Are they sure they got all of the leaks? What is the other procedure? Sorry for all the questions so not helpful. Sending you all of my supportHugs,Vennitta  I just got a follow up call from my neurologist, and it looks like the problem is still there. I have very low CSF pressure still. It showed up on all the scans and tests. I told him I had been feeling better, but he cautioned me to go slower, and to follow up with him in a couple of weeks. One of two things: it either is getting better, or maybe it seemed better because of all that time in bed, but either way, I'm to take things really slow. I was getting ready to ramp it up a little. If this is still going on in a couple of weeks, there's another procedure. OK. Last night I noticed my hearing problem was as bad as ever, and that's my canary in the coal mine. OK then. I'm going to go wrap my mind around this challenge. Peace out, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2011 Report Share Posted November 5, 2011 Strange and chronic... I know some people like that! ;-) Re: well... Oops! I didn't finish that thought. I did that and it helps for a while, but since it doesn't cure it, I'm usually trashed a few days later. We did lots of troubleshooting. We went step by step. I have a slow leak, and the cases you usually read about online are more acute and more short-lived, like what happens when a spinal tap doesn't seal up. Mine is strange and chronic. Jen, my case is unusual. I have gone step One place online said that you should have complete bed-rest...did you do that? I know online isn't always accurate but bed-rest makes sense to me. Jen I just got a follow up call from my neurologist, and it looks like the problem is still there. I have very low CSF pressure still. It showed up on all the scans and tests. I told him I had been feeling better, but he cautioned me to go slower, and to follow up with him in a couple of weeks. One of two things: it either is getting better, or maybe it seemed better because of all that time in bed, but either way, I'm to take things really slow. I was getting ready to ramp it up a little. If this is still going on in a couple of weeks, there's another procedure. OK. Last night I noticed my hearing problem was as bad as ever, and that's my canary in the coal mine. OK then. I'm going to go wrap my mind around this challenge. Peace out, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2011 Report Share Posted November 5, 2011 Yep, I'm sure you can!!! Re: well... It replaces itself more than 3 times per day. I can't keep up with it even so. OK, I was trying not to TMI all over you guys, but that's what the rest of this is, so move along if you're squeamish or not interested. They did everything they could on Monday trying to pinpoint the leak, and I had the best folks in a teaching hospital all over me, all day. I spent part of the day in Interventional Radiology, a lot of time in post op (puking) and the rest in Nuclear Medicine. Big guns. The best people. I have a really unusual case. "Tricky, slow leak". They tell me there's no doubt that this is the problem because the low pressure is confirmed on all tests, and they've run the results past several departments and at least 5 other doctors saw the original MRIs. I was supposed to be there just for a few hours on Monday, and I was there for 9 hours just that day. I didn't eat for a total of 25 hours (IV fluids only). I had to fast pre-op. I cannot fall behind on water because this condition makes me so sick if I run dry. So I came into the procedure already nauseous. What a day that was. Because I was already so low before the procedure, it's like trying to find the leak in a bike tire after it is flat, but there's no way around that. They gave me IV, O2, morphine, sedatives and antiemetics, did a subdural spinal injection of dyes and radioactive isotopes and ran me through CT scanner and I had four separate sessions under the gamma camera, two on Monday, and again on Tuesday and Wednesday. On Monday, the pressure change from the puncture gave me an excruciating headache even though I had morphine. They had trouble controlling the vomiting the rest of the day. They did control the pain. I was STONED! I could tell how frustrated they were by Wednesday because they wanted to find it to target the treatment. That's the best fix. They were actually sad for me. They did see some faint readings showing that the problem might be in my skull, but too vague a signal be sure or to go digging after it. Thank goodness, right? No guessing allowed. So, when they couldn't definitively pinpoint it, I just assumed that it had fixed itself in the meantime because the nausea had stopped. However, that might just be because of all the rest I had. That's the pattern. Bedrest for a few days, I feel better, I get active, I crash hard. But, the neurologist said it is not fixed. It confirms my sinking feeling today. I was starting to feel bad again. No walks today. So, today I told my neurologist that I had been feeling better the past two days. There was a long pause, and he told me to take it slower. I call him in a couple of weeks if this isn't resolved, and then they do a blood patch. Another lumbar puncture. That's more like putting Slime in your bike tires, and less like putting a patch on the actual leak, but at least there's something. I'm a ridiculously stubborn optimist, though. I think I won't need it. So there. Oh boo Doesn't it take time for the body to replace lost CSF? Are they sure they got all of the leaks? What is the other procedure? Sorry for all the questions so not helpful. Sending you all of my support Hugs,Vennitta I just got a follow up call from my neurologist, and it looks like the problem is still there. I have very low CSF pressure still. It showed up on all the scans and tests. I told him I had been feeling better, but he cautioned me to go slower, and to follow up with him in a couple of weeks. One of two things: it either is getting better, or maybe it seemed better because of all that time in bed, but either way, I'm to take things really slow. I was getting ready to ramp it up a little. If this is still going on in a couple of weeks, there's another procedure. OK. Last night I noticed my hearing problem was as bad as ever, and that's my canary in the coal mine. OK then. I'm going to go wrap my mind around this challenge. Peace out, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2011 Report Share Posted November 5, 2011 Thanks so much Vennitta! It's gonna be OK eventually, one way or another. Yahoo is freaking wacky!! I just got your post .Stay stubbornly optimistic! Your mindset is a big part of healing. Your body may really fix itself, just on its own schedule not ours. This is a fascinating case I just wish you weren't going through all of this. Its good that they are not doing exploratory surgery and I'm very glad that you are surrounded by the best people. As difficult as it is keep resting and staying hydrated.I'll keep sending you healing vibesTake care and like says keep us updated Vennitta It replaces itself more than 3 times per day. I can't keep up with it even so.OK, I was trying not to TMI all over you guys, but that's what the rest of this is, so move along if you're squeamish or not interested. They did everything they could on Monday trying to pinpoint the leak, and I had the best folks in a teaching hospital all over me, all day. I spent part of the day in Interventional Radiology, a lot of time in post op (puking) and the rest in Nuclear Medicine. Big guns. The best people. I have a really unusual case. " Tricky, slow leak " . They tell me there's no doubt that this is the problem because the low pressure is confirmed on all tests, and they've run the results past several departments and at least 5 other doctors saw the original MRIs. I was supposed to be there just for a few hours on Monday, and I was there for 9 hours just that day. I didn't eat for a total of 25 hours (IV fluids only). I had to fast pre-op. I cannot fall behind on water because this condition makes me so sick if I run dry. So I came into the procedure already nauseous. What a day that was. Because I was already so low before the procedure, it's like trying to find the leak in a bike tire after it is flat, but there's no way around that. They gave me IV, O2, morphine, sedatives and antiemetics, did a subdural spinal injection of dyes and radioactive isotopes and ran me through CT scanner and I had four separate sessions under the gamma camera, two on Monday, and again on Tuesday and Wednesday. On Monday, the pressure change from the puncture gave me an excruciating headache even though I had morphine. They had trouble controlling the vomiting the rest of the day. They did control the pain. I was STONED! I could tell how frustrated they were by Wednesday because they wanted to find it to target the treatment. That's the best fix. They were actually sad for me. They did see some faint readings showing that the problem might be in my skull, but too vague a signal be sure or to go digging after it. Thank goodness, right? No guessing allowed. So, when they couldn't definitively pinpoint it, I just assumed that it had fixed itself in the meantime because the nausea had stopped. However, that might just be because of all the rest I had. That's the pattern. Bedrest for a few days, I feel better, I get active, I crash hard. But, the neurologist said it is not fixed. It confirms my sinking feeling today. I was starting to feel bad again. No walks today. So, today I told my neurologist that I had been feeling better the past two days. There was a long pause, and he told me to take it slower. I call him in a couple of weeks if this isn't resolved, and then they do a blood patch. Another lumbar puncture. That's more like putting Slime in your bike tires, and less like putting a patch on the actual leak, but at least there's something. I'm a ridiculously stubborn optimist, though. I think I won't need it. So there. Oh boo Doesn't it take time for the body to replace lost CSF? Are they sure they got all of the leaks? What is the other procedure? Sorry for all the questions so not helpful. Sending you all of my supportHugs,Vennitta I just got a follow up call from my neurologist, and it looks like the problem is still there. I have very low CSF pressure still. It showed up on all the scans and tests. I told him I had been feeling better, but he cautioned me to go slower, and to follow up with him in a couple of weeks. One of two things: it either is getting better, or maybe it seemed better because of all that time in bed, but either way, I'm to take things really slow. I was getting ready to ramp it up a little. If this is still going on in a couple of weeks, there's another procedure. OK. Last night I noticed my hearing problem was as bad as ever, and that's my canary in the coal mine. OK then. I'm going to go wrap my mind around this challenge. Peace out, Quote Link to comment Share on other sites More sharing options...
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