Guest guest Posted April 21, 2011 Report Share Posted April 21, 2011 Yes, I fully realise that to get experienced, the poor old medical students need to practice on real patients! It's a bit of a Catch 22 at times ... similar advice is given for periacetabular osteotomies and hip replacement (hip dysplasia operations) - you get the best results the more operations a surgeon has done ... but they have to get to that status somehow! The second one I had done, by an experienced doctor (the one guided by ultrasound) was pretty awful too, I nearly fainted ... so in that case, his experience didn't give me a less stressful procedure, it just *worked* (while the first one hadn't). No offence taken, BTW But I shall still accept brownies, LOL! xo > See the blue type below for the editorial comments! , don't get mad! I'll send you some Indiana brownies! > > Ramblin' Rose > Co-owner/Moderator > > " I child-proofed my home and they STILL get in! " (Bumper sticker) > > > > > > To: Neurosarcoidosis > > From: denise@... > > Date: Fri, 22 Apr 2011 08:26:14 +1000 > > Subject: Re: Re: settling down > > > > Re. lumbar punctures ... I had 2 in hospital five years ago (when I had a 6th nerve palsy - prob from neuro-sarc, but wasn't dxed at the time), which were truly awful. The first one was with a Resident (ie trainee) neurologist, and I nearly passed out, and it didn't work at all. The second one was done by a much more experienced doctor, using ultrasound guidance, and was easier, but still no picnic - my *husband* nearly passed out just watching, LOL. I tended to go into shock a bit, shaking all over, that kind of thing. Listening to LOUD music on your iPod during the procedure can help ... > But I had another one during my last stay in hospital (Sept last year) and it was done amazingly well and skilfully. I barely felt a thing (and it finally gave some positive test results too). So the skill and experience of the person doing it is the biggest factor! > > > > My main advice is don't let a trainee loose on your spine!! And make sure you lie down for a good few hours afterwards (they'll probably give you this advice anyway), it helps to reduce the headache that is common afterwards. > > re: pain, etc. I've had one diagnostic LP, as part of my NS work-up. My neuro did it in his office (no ultrasound) & it was basically painless. I had known him for years through the hospital & trusted his judgment as far as doing it in his office. The only problem with your advice, , to only have an experienced doctor, is how did that doctor get experience? Right, on some other poor sucker! Unfortunately, no one is born with the skills to do spinal taps, heart transplants, hair perms, etc. Maybe I'm a bit sensitive because I still remember the early births I attended as a midwifery student (not my first births; as Marla can probably attest, most labor & delivery nurses catch a few babies in their careers!). As midwifery students, we were closely supervised, but I was so grateful to those women who trusted me with their births (they could refuse, but very few did). I recall a fellow student talking about how expensive haircuts were; when I told her that my kids & I got haircuts at a barber/stylist college, she was horrified: " I'm not letting a student cut my hair! " Even when I reminded her that hair will grow back, and that these women & families let us provide prenatal care & attend their births, she didn't budge. Having gone through nursing school & midwifery training, plus teaching & supervising student nurses & midwifery students, I recommend that you check out the experience & credentials of those supervising the students, but don't just discount all students. Okay, speech over & Rose falls off her soapbox! > > I've had 3 other spinal procedures. 2 were anesthetics for surgery; the 3rd was a blood patch to stop the spinal headache from the 2nd. None of them were what I would call painful. I've known quite a few people who've had a diagnostic LP; some have described it as agony, some as uncomfortable & some that it didn't bother at all. And some of the " agonizing " procedures were done by skilled, experienced clinicians! So the skill is only part of the equation. Oops, , I didn't mean to climb back up on the soapbox. Thud (that was Rose falling off again!) > > I think the music is an excellent suggestion. Some hospitals provide CD players & a variety of music for those having surgery under local/light anesthesia. I listened to Elvis going into surgery for my cataracts, and woke up to Elvis. I've also taken my CD player (sorry, iPods are too hi-tech for me; I only gave up my tape cassettes a few years ago!) to the dentist office. Also, there are doctors & hospital staff who will tell you that you don't need to lie down at all, or just a few hours, after the LP. Having experienced a spinal headache myself, I wasn't taking any chances. Even though they told me I could be up normally after 6-8 hrs., this chick parked in my bed for the night! > > > > Good luck! > > > > xo > > > > > > > > > > > > > > > Chris > > > It's great to hear that things are settling down for you. As for the lumbar puncture I can tell you that they hurt like hell. I had one when I was 7 years old(almost 30 years ago)and remember it well and that is saying something because I was semi-comatose when they did it. That aside my fiancee did have one a few months ago and it went well hard for him to keep still because he does have some pretty severe twitching and of course it was painful but it went well. He is actually going to be having a multi-point lumbarpuncture in just a few weeks going up his whole spine that one is really going to be a challange as they have told him it will take quite some time I hope they can sedate him lightly for it. > > > Sorry I got off a bit there... > > > Anyway I'm very glad that things are looking up for you and hope this trend continues. > > > JoDee > > > > > > > > > > > > > > hi all > > > > > > > > just wanted to send a little update - believe it or not, my headaches were > > > > probably caused by the fact that my blood pressure had suddenly gone > > > > whacky. after a week full of PCP visits & measuring my bp @ 140/90, i > > > > finally had had enough and went to the emergency room two days ago, and they > > > > measured it at 178/103. got some basic blood pressure meds now, my bp is > > > > textbook normal, and the headaches are 80% gone. so there is some good > > > > news. > > > > > > > > the vertigo, the light-headedness (i've stopped calling it dizziness, > > > > because i haven't fallen over even once yet) and the foggy - can't - quite - > > > > concentrate feeling are still with me, but they're a little better. we > > > > continue to work on this, and we're giving the bp meds a few days to see if > > > > these feelings get any better. > > > > > > > > had some good conversations with my PCP, he has told me that he would > > > > support any efforts toward getting disability. i didn't even have to ask, > > > > he volunteered it. he suggests i look into part-time work, if i think i can > > > > handle it, and if i do, that'll lower my income & i'll finally qualify for > > > > all those assistance programs that have recently turned me away. the > > > > irony... > > > > > > > > i found a good neurologist locally who knows sarcoid (i still thank you > > > > JoDee!) and we're looking into the other symptoms - the new numbness on my > > > > hands, and the tingling on my face & on my tongue. i'm going in for a > > > > lumbar puncture next week - would love to hear of anyone's experience with > > > > that. > > > > > > > > one last time, my thanks for all the help and recommendations and advice, > > > > and patience through my little panic attacks. Connie, i may have some > > > > questions for you in the near future! > > > > > > > > chris > > > > > > > > > > > > > > > > > > ------------------------------------ > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > > > > > Message Archives:- > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > Members Database:- > > Listings of locations, phone numbers, and instant messengers. > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2011 Report Share Posted April 21, 2011 , I worked at a major medical center in San , Texas for a couple of years. One of the tasks of the CNMs (certified nurse-midwives) was to supervise/mentor 4th year med students & 1st year residents (interns) at births. Unknown to most of the public is a common philosophy in medical training: see one, do one, teach one. As far as I know, this is not applied to brain surgery, but only to "minor" surgeries, and little things like childbirth, episiotomies, etc. Not every program uses this nifty little system, but I've worked at two large teaching hospitals that did. The nice thing about San was that the med students & interns would ask to do births with the CNMs because they not only learned alternatives such as side-lying births, but generally received better instruction in how to avoid cutting episiotomies, suturing, etc. I remember working with an intern once & I was explaining why he would use a certain type of stitch in a certain situation, as well as how to choose the suture material. He was amazed because no one had explained that, which was scary, since he had done several births with the upper level residents. He said he just had to watch them & then hope he got it right on his first solo birth. Yikes. Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker) > To: Neurosarcoidosis > Date: Fri, 22 Apr 2011 14:09:34 +1000> Subject: Re: lumbar punctures> > Yes, I fully realise that to get experienced, the poor old medical students need to practice on real patients! It's a bit of a Catch 22 at times ... similar advice is given for periacetabular osteotomies and hip replacement (hip dysplasia operations) - you get the best results the more operations a surgeon has done ... but they have to get to that status somehow!> > The second one I had done, by an experienced doctor (the one guided by ultrasound) was pretty awful too, I nearly fainted ... so in that case, his experience didn't give me a less stressful procedure, it just *worked* (while the first one hadn't). > > No offence taken, BTW But I shall still accept brownies, LOL!> > xo > > > > > > See the blue type below for the editorial comments! , don't get mad! I'll send you some Indiana brownies!> > > > Ramblin' Rose> > Co-owner/Moderator> > > > "I child-proofed my home and they STILL get in!" (Bumper sticker)> > > > > > > > > > > To: Neurosarcoidosis > > > > > Date: Fri, 22 Apr 2011 08:26:14 +1000> > > Subject: Re: Re: settling down> > > > > > Re. lumbar punctures ... I had 2 in hospital five years ago (when I had a 6th nerve palsy - prob from neuro-sarc, but wasn't dxed at the time), which were truly awful. The first one was with a Resident (ie trainee) neurologist, and I nearly passed out, and it didn't work at all. The second one was done by a much more experienced doctor, using ultrasound guidance, and was easier, but still no picnic - my *husband* nearly passed out just watching, LOL. I tended to go into shock a bit, shaking all over, that kind of thing. Listening to LOUD music on your iPod during the procedure can help ...> > But I had another one during my last stay in hospital (Sept last year) and it was done amazingly well and skilfully. I barely felt a thing (and it finally gave some positive test results too). So the skill and experience of the person doing it is the biggest factor!> > > > > > My main advice is don't let a trainee loose on your spine!! And make sure you lie down for a good few hours afterwards (they'll probably give you this advice anyway), it helps to reduce the headache that is common afterwards.> > > > re: pain, etc. I've had one diagnostic LP, as part of my NS work-up. My neuro did it in his office (no ultrasound) & it was basically painless. I had known him for years through the hospital & trusted his judgment as far as doing it in his office. The only problem with your advice, , to only have an experienced doctor, is how did that doctor get experience? Right, on some other poor sucker! Unfortunately, no one is born with the skills to do spinal taps, heart transplants, hair perms, etc. Maybe I'm a bit sensitive because I still remember the early births I attended as a midwifery student (not my first births; as Marla can probably attest, most labor & delivery nurses catch a few babies in their careers!). As midwifery students, we were closely supervised, but I was so grateful to those women who trusted me with their births (they could refuse, but very few did). I recall a fellow student talking about how expensive haircuts were; when I told her that my kids & I got haircuts at a barber/stylist college, she was horrified: "I'm not letting a student cut my hair!" Even when I reminded her that hair will grow back, and that these women & families let us provide prenatal care & attend their births, she didn't budge. Having gone through nursing school & midwifery training, plus teaching & supervising student nurses & midwifery students, I recommend that you check out the experience & credentials of those supervising the students, but don't just discount all students. Okay, speech over & Rose falls off her soapbox!> > > > I've had 3 other spinal procedures. 2 were anesthetics for surgery; the 3rd was a blood patch to stop the spinal headache from the 2nd. None of them were what I would call painful. I've known quite a few people who've had a diagnostic LP; some have described it as agony, some as uncomfortable & some that it didn't bother at all. And some of the "agonizing" procedures were done by skilled, experienced clinicians! So the skill is only part of the equation. Oops, , I didn't mean to climb back up on the soapbox. Thud (that was Rose falling off again!)> > > > I think the music is an excellent suggestion. Some hospitals provide CD players & a variety of music for those having surgery under local/light anesthesia. I listened to Elvis going into surgery for my cataracts, and woke up to Elvis. I've also taken my CD player (sorry, iPods are too hi-tech for me; I only gave up my tape cassettes a few years ago!) to the dentist office. Also, there are doctors & hospital staff who will tell you that you don't need to lie down at all, or just a few hours, after the LP. Having experienced a spinal headache myself, I wasn't taking any chances. Even though they told me I could be up normally after 6-8 hrs., this chick parked in my bed for the night! > > > > > > Good luck!> > > > > > xo > > > > > > > > > > > > > > > > > > > > > > Chris> > > > It's great to hear that things are settling down for you. As for the lumbar puncture I can tell you that they hurt like hell. I had one when I was 7 years old(almost 30 years ago)and remember it well and that is saying something because I was semi-comatose when they did it. That aside my fiancee did have one a few months ago and it went well hard for him to keep still because he does have some pretty severe twitching and of course it was painful but it went well. He is actually going to be having a multi-point lumbarpuncture in just a few weeks going up his whole spine that one is really going to be a challange as they have told him it will take quite some time I hope they can sedate him lightly for it. > > > > Sorry I got off a bit there...> > > > Anyway I'm very glad that things are looking up for you and hope this trend continues.> > > > JoDee> > > > > > > > > > > > >> > > > > hi all> > > > > > > > > > just wanted to send a little update - believe it or not, my headaches were> > > > > probably caused by the fact that my blood pressure had suddenly gone> > > > > whacky. after a week full of PCP visits & measuring my bp @ 140/90, i> > > > > finally had had enough and went to the emergency room two days ago, and they> > > > > measured it at 178/103. got some basic blood pressure meds now, my bp is> > > > > textbook normal, and the headaches are 80% gone. so there is some good> > > > > news.> > > > > > > > > > the vertigo, the light-headedness (i've stopped calling it dizziness,> > > > > because i haven't fallen over even once yet) and the foggy - can't - quite -> > > > > concentrate feeling are still with me, but they're a little better. we> > > > > continue to work on this, and we're giving the bp meds a few days to see if> > > > > these feelings get any better.> > > > > > > > > > had some good conversations with my PCP, he has told me that he would> > > > > support any efforts toward getting disability. i didn't even have to ask,> > > > > he volunteered it. he suggests i look into part-time work, if i think i can> > > > > handle it, and if i do, that'll lower my income & i'll finally qualify for> > > > > all those assistance programs that have recently turned me away. the> > > > > irony...> > > > > > > > > > i found a good neurologist locally who knows sarcoid (i still thank you> > > > > JoDee!) and we're looking into the other symptoms - the new numbness on my> > > > > hands, and the tingling on my face & on my tongue. i'm going in for a> > > > > lumbar puncture next week - would love to hear of anyone's experience with> > > > > that.> > > > > > > > > > one last time, my thanks for all the help and recommendations and advice,> > > > > and patience through my little panic attacks. Connie, i may have some> > > > > questions for you in the near future!> > > > > > > > > > chris> > > > >> > > > > > > > > > > > > > > > > > > > ------------------------------------> > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > The Neurosarcoidosis Community> > > > > > > > > > > > Message Archives:-> > > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > > > Members Database:-> > > Listings of locations, phone numbers, and instant messengers.> > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2011 Report Share Posted April 22, 2011 Yikes indeed!! 0_o The " see one, do one, teach one " method sounds excellent - I always think you learn so much by teaching someone else ... xo > , I worked at a major medical center in San , Texas for a couple of years. One of the tasks of the CNMs (certified nurse-midwives) was to supervise/mentor 4th year med students & 1st year residents (interns) at births. Unknown to most of the public is a common philosophy in medical training: see one, do one, teach one. As far as I know, this is not applied to brain surgery, but only to " minor " surgeries, and little things like childbirth, episiotomies, etc. Not every program uses this nifty little system, but I've worked at two large teaching hospitals that did. The nice thing about San was that the med students & interns would ask to do births with the CNMs because they not only learned alternatives such as side-lying births, but generally received better instruction in how to avoid cutting episiotomies, suturing, etc. I remember working with an intern once & I was explaining why he would use a certain type of stitch in a certain situation, as well as how to choose the suture material. He was amazed because no one had explained that, which was scary, since he had done several births with the upper level residents. He said he just had to watch them & then hope he got it right on his first solo birth. Yikes. > > Ramblin' Rose > Co-owner/Moderator > > " I child-proofed my home and they STILL get in! " (Bumper sticker) > > > > > > To: Neurosarcoidosis > > From: denise@... > > Date: Fri, 22 Apr 2011 14:09:34 +1000 > > Subject: Re: lumbar punctures > > > > Yes, I fully realise that to get experienced, the poor old medical students need to practice on real patients! It's a bit of a Catch 22 at times ... similar advice is given for periacetabular osteotomies and hip replacement (hip dysplasia operations) - you get the best results the more operations a surgeon has done ... but they have to get to that status somehow! > > > > The second one I had done, by an experienced doctor (the one guided by ultrasound) was pretty awful too, I nearly fainted ... so in that case, his experience didn't give me a less stressful procedure, it just *worked* (while the first one hadn't). > > > > No offence taken, BTW But I shall still accept brownies, LOL! > > > > xo > > > > > > > > > > > See the blue type below for the editorial comments! , don't get mad! I'll send you some Indiana brownies! > > > > > > Ramblin' Rose > > > Co-owner/Moderator > > > > > > " I child-proofed my home and they STILL get in! " (Bumper sticker) > > > > > > > > > > > > > > > > To: Neurosarcoidosis > > > > From: denise@... > > > > Date: Fri, 22 Apr 2011 08:26:14 +1000 > > > > Subject: Re: Re: settling down > > > > > > > > Re. lumbar punctures ... I had 2 in hospital five years ago (when I had a 6th nerve palsy - prob from neuro-sarc, but wasn't dxed at the time), which were truly awful. The first one was with a Resident (ie trainee) neurologist, and I nearly passed out, and it didn't work at all. The second one was done by a much more experienced doctor, using ultrasound guidance, and was easier, but still no picnic - my *husband* nearly passed out just watching, LOL. I tended to go into shock a bit, shaking all over, that kind of thing. Listening to LOUD music on your iPod during the procedure can help ... > > > But I had another one during my last stay in hospital (Sept last year) and it was done amazingly well and skilfully. I barely felt a thing (and it finally gave some positive test results too). So the skill and experience of the person doing it is the biggest factor! > > > > > > > > My main advice is don't let a trainee loose on your spine!! And make sure you lie down for a good few hours afterwards (they'll probably give you this advice anyway), it helps to reduce the headache that is common afterwards. > > > > > > re: pain, etc. I've had one diagnostic LP, as part of my NS work-up. My neuro did it in his office (no ultrasound) & it was basically painless. I had known him for years through the hospital & trusted his judgment as far as doing it in his office. The only problem with your advice, , to only have an experienced doctor, is how did that doctor get experience? Right, on some other poor sucker! Unfortunately, no one is born with the skills to do spinal taps, heart transplants, hair perms, etc. Maybe I'm a bit sensitive because I still remember the early births I attended as a midwifery student (not my first births; as Marla can probably attest, most labor & delivery nurses catch a few babies in their careers!). As midwifery students, we were closely supervised, but I was so grateful to those women who trusted me with their births (they could refuse, but very few did). I recall a fellow student talking about how expensive haircuts were; when I told her that my kids & I got haircuts at a barber/stylist college, she was horrified: " I'm not letting a student cut my hair! " Even when I reminded her that hair will grow back, and that these women & families let us provide prenatal care & attend their births, she didn't budge. Having gone through nursing school & midwifery training, plus teaching & supervising student nurses & midwifery students, I recommend that you check out the experience & credentials of those supervising the students, but don't just discount all students. Okay, speech over & Rose falls off her soapbox! > > > > > > I've had 3 other spinal procedures. 2 were anesthetics for surgery; the 3rd was a blood patch to stop the spinal headache from the 2nd. None of them were what I would call painful. I've known quite a few people who've had a diagnostic LP; some have described it as agony, some as uncomfortable & some that it didn't bother at all. And some of the " agonizing " procedures were done by skilled, experienced clinicians! So the skill is only part of the equation. Oops, , I didn't mean to climb back up on the soapbox. Thud (that was Rose falling off again!) > > > > > > I think the music is an excellent suggestion. Some hospitals provide CD players & a variety of music for those having surgery under local/light anesthesia. I listened to Elvis going into surgery for my cataracts, and woke up to Elvis. I've also taken my CD player (sorry, iPods are too hi-tech for me; I only gave up my tape cassettes a few years ago!) to the dentist office. Also, there are doctors & hospital staff who will tell you that you don't need to lie down at all, or just a few hours, after the LP. Having experienced a spinal headache myself, I wasn't taking any chances. Even though they told me I could be up normally after 6-8 hrs., this chick parked in my bed for the night! > > > > > > > > Good luck! > > > > > > > > xo > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Chris > > > > > It's great to hear that things are settling down for you. As for the lumbar puncture I can tell you that they hurt like hell. I had one when I was 7 years old(almost 30 years ago)and remember it well and that is saying something because I was semi-comatose when they did it. That aside my fiancee did have one a few months ago and it went well hard for him to keep still because he does have some pretty severe twitching and of course it was painful but it went well. He is actually going to be having a multi-point lumbarpuncture in just a few weeks going up his whole spine that one is really going to be a challange as they have told him it will take quite some time I hope they can sedate him lightly for it. > > > > > Sorry I got off a bit there... > > > > > Anyway I'm very glad that things are looking up for you and hope this trend continues. > > > > > JoDee > > > > > > > > > > > > > > > > > > > > > > hi all > > > > > > > > > > > > just wanted to send a little update - believe it or not, my headaches were > > > > > > probably caused by the fact that my blood pressure had suddenly gone > > > > > > whacky. after a week full of PCP visits & measuring my bp @ 140/90, i > > > > > > finally had had enough and went to the emergency room two days ago, and they > > > > > > measured it at 178/103. got some basic blood pressure meds now, my bp is > > > > > > textbook normal, and the headaches are 80% gone. so there is some good > > > > > > news. > > > > > > > > > > > > the vertigo, the light-headedness (i've stopped calling it dizziness, > > > > > > because i haven't fallen over even once yet) and the foggy - can't - quite - > > > > > > concentrate feeling are still with me, but they're a little better. we > > > > > > continue to work on this, and we're giving the bp meds a few days to see if > > > > > > these feelings get any better. > > > > > > > > > > > > had some good conversations with my PCP, he has told me that he would > > > > > > support any efforts toward getting disability. i didn't even have to ask, > > > > > > he volunteered it. he suggests i look into part-time work, if i think i can > > > > > > handle it, and if i do, that'll lower my income & i'll finally qualify for > > > > > > all those assistance programs that have recently turned me away. the > > > > > > irony... > > > > > > > > > > > > i found a good neurologist locally who knows sarcoid (i still thank you > > > > > > JoDee!) and we're looking into the other symptoms - the new numbness on my > > > > > > hands, and the tingling on my face & on my tongue. i'm going in for a > > > > > > lumbar puncture next week - would love to hear of anyone's experience with > > > > > > that. > > > > > > > > > > > > one last time, my thanks for all the help and recommendations and advice, > > > > > > and patience through my little panic attacks. Connie, i may have some > > > > > > questions for you in the near future! > > > > > > > > > > > > chris > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > The Neurosarcoidosis Community > > > > > > > > > > > > > > > > Message Archives:- > > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > > > > > Members Database:- > > > > Listings of locations, phone numbers, and instant messengers. > > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2011 Report Share Posted April 22, 2011 I have had three lumbar punctures. The first was done by a neurosurgeon in conjunction with a myleogram(?). That was rough but I was sedated. The second was done in the hospital by a resident and the last was done by my neurologist in his office. These were both done without sedation. It really does not hurt at all if you relax. If you get nervous and tense up it stings more. If you relax, stretch your back over as much as you can, stay still and relax, relax, all you feel is a slight sting when they numb it. Piece of cake compared to biopsies, surgery, or even profusions. :-) We get to do all the fun things! Becky " Always look for the lighter side " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2011 Report Share Posted April 22, 2011 I agree that teaching is a good way to learn. I know that by explaining something to someone else, I find out very quickly if I really understand it myself! Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker) > To: Neurosarcoidosis > Date: Fri, 22 Apr 2011 16:09:38 +1000> Subject: Re: lumbar punctures> > Yikes indeed!! 0_o The "see one, do one, teach one" method sounds excellent - I always think you learn so much by teaching someone else ...> > xo > > > > > , I worked at a major medical center in San , Texas for a couple of years. One of the tasks of the CNMs (certified nurse-midwives) was to supervise/mentor 4th year med students & 1st year residents (interns) at births. Unknown to most of the public is a common philosophy in medical training: see one, do one, teach one. As far as I know, this is not applied to brain surgery, but only to "minor" surgeries, and little things like childbirth, episiotomies, etc. Not every program uses this nifty little system, but I've worked at two large teaching hospitals that did. The nice thing about San was that the med students & interns would ask to do births with the CNMs because they not only learned alternatives such as side-lying births, but generally received better instruction in how to avoid cutting episiotomies, suturing, etc. I remember working with an intern once & I was explaining why he would use a certain type of stitch in a certain situation, as well as how to choose the suture material. He was amazed because no one had explained that, which was scary, since he had done several births with the upper level residents. He said he just had to watch them & then hope he got it right on his first solo birth. Yikes. > > > > Ramblin' Rose> > Co-owner/Moderator> > > > "I child-proofed my home and they STILL get in!" (Bumper sticker)> > > > > > > > > > > To: Neurosarcoidosis > > > > > Date: Fri, 22 Apr 2011 14:09:34 +1000> > > Subject: Re: lumbar punctures> > > > > > Yes, I fully realise that to get experienced, the poor old medical students need to practice on real patients! It's a bit of a Catch 22 at times ... similar advice is given for periacetabular osteotomies and hip replacement (hip dysplasia operations) - you get the best results the more operations a surgeon has done ... but they have to get to that status somehow!> > > > > > The second one I had done, by an experienced doctor (the one guided by ultrasound) was pretty awful too, I nearly fainted ... so in that case, his experience didn't give me a less stressful procedure, it just *worked* (while the first one hadn't). > > > > > > No offence taken, BTW But I shall still accept brownies, LOL!> > > > > > xo > > > > > > > > > > > > > > > > See the blue type below for the editorial comments! , don't get mad! I'll send you some Indiana brownies!> > > > > > > > Ramblin' Rose> > > > Co-owner/Moderator> > > > > > > > "I child-proofed my home and they STILL get in!" (Bumper sticker)> > > > > > > > > > > > > > > > > > > > > To: Neurosarcoidosis > > > > > > > > > Date: Fri, 22 Apr 2011 08:26:14 +1000> > > > > Subject: Re: Re: settling down> > > > > > > > > > Re. lumbar punctures ... I had 2 in hospital five years ago (when I had a 6th nerve palsy - prob from neuro-sarc, but wasn't dxed at the time), which were truly awful. The first one was with a Resident (ie trainee) neurologist, and I nearly passed out, and it didn't work at all. The second one was done by a much more experienced doctor, using ultrasound guidance, and was easier, but still no picnic - my *husband* nearly passed out just watching, LOL. I tended to go into shock a bit, shaking all over, that kind of thing. Listening to LOUD music on your iPod during the procedure can help ...> > > > But I had another one during my last stay in hospital (Sept last year) and it was done amazingly well and skilfully. I barely felt a thing (and it finally gave some positive test results too). So the skill and experience of the person doing it is the biggest factor!> > > > > > > > > > My main advice is don't let a trainee loose on your spine!! And make sure you lie down for a good few hours afterwards (they'll probably give you this advice anyway), it helps to reduce the headache that is common afterwards.> > > > > > > > re: pain, etc. I've had one diagnostic LP, as part of my NS work-up. My neuro did it in his office (no ultrasound) & it was basically painless. I had known him for years through the hospital & trusted his judgment as far as doing it in his office. The only problem with your advice, , to only have an experienced doctor, is how did that doctor get experience? Right, on some other poor sucker! Unfortunately, no one is born with the skills to do spinal taps, heart transplants, hair perms, etc. Maybe I'm a bit sensitive because I still remember the early births I attended as a midwifery student (not my first births; as Marla can probably attest, most labor & delivery nurses catch a few babies in their careers!). As midwifery students, we were closely supervised, but I was so grateful to those women who trusted me with their births (they could refuse, but very few did). I recall a fellow student talking about how expensive haircuts were; when I told her that my kids & I got haircuts at a barber/stylist college, she was horrified: "I'm not letting a student cut my hair!" Even when I reminded her that hair will grow back, and that these women & families let us provide prenatal care & attend their births, she didn't budge. Having gone through nursing school & midwifery training, plus teaching & supervising student nurses & midwifery students, I recommend that you check out the experience & credentials of those supervising the students, but don't just discount all students. Okay, speech over & Rose falls off her soapbox!> > > > > > > > I've had 3 other spinal procedures. 2 were anesthetics for surgery; the 3rd was a blood patch to stop the spinal headache from the 2nd. None of them were what I would call painful. I've known quite a few people who've had a diagnostic LP; some have described it as agony, some as uncomfortable & some that it didn't bother at all. And some of the "agonizing" procedures were done by skilled, experienced clinicians! So the skill is only part of the equation. Oops, , I didn't mean to climb back up on the soapbox. Thud (that was Rose falling off again!)> > > > > > > > I think the music is an excellent suggestion. Some hospitals provide CD players & a variety of music for those having surgery under local/light anesthesia. I listened to Elvis going into surgery for my cataracts, and woke up to Elvis. I've also taken my CD player (sorry, iPods are too hi-tech for me; I only gave up my tape cassettes a few years ago!) to the dentist office. Also, there are doctors & hospital staff who will tell you that you don't need to lie down at all, or just a few hours, after the LP. Having experienced a spinal headache myself, I wasn't taking any chances. Even though they told me I could be up normally after 6-8 hrs., this chick parked in my bed for the night! > > > > > > > > > > Good luck!> > > > > > > > > > xo > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Chris> > > > > > It's great to hear that things are settling down for you. As for the lumbar puncture I can tell you that they hurt like hell. I had one when I was 7 years old(almost 30 years ago)and remember it well and that is saying something because I was semi-comatose when they did it. That aside my fiancee did have one a few months ago and it went well hard for him to keep still because he does have some pretty severe twitching and of course it was painful but it went well. He is actually going to be having a multi-point lumbarpuncture in just a few weeks going up his whole spine that one is really going to be a challange as they have told him it will take quite some time I hope they can sedate him lightly for it. > > > > > > Sorry I got off a bit there...> > > > > > Anyway I'm very glad that things are looking up for you and hope this trend continues.> > > > > > JoDee> > > > > > > > > > > > > > > > > > >> > > > > > > hi all> > > > > > > > > > > > > > just wanted to send a little update - believe it or not, my headaches were> > > > > > > probably caused by the fact that my blood pressure had suddenly gone> > > > > > > whacky. after a week full of PCP visits & measuring my bp @ 140/90, i> > > > > > > finally had had enough and went to the emergency room two days ago, and they> > > > > > > measured it at 178/103. got some basic blood pressure meds now, my bp is> > > > > > > textbook normal, and the headaches are 80% gone. so there is some good> > > > > > > news.> > > > > > > > > > > > > > the vertigo, the light-headedness (i've stopped calling it dizziness,> > > > > > > because i haven't fallen over even once yet) and the foggy - can't - quite -> > > > > > > concentrate feeling are still with me, but they're a little better. we> > > > > > > continue to work on this, and we're giving the bp meds a few days to see if> > > > > > > these feelings get any better.> > > > > > > > > > > > > > had some good conversations with my PCP, he has told me that he would> > > > > > > support any efforts toward getting disability. i didn't even have to ask,> > > > > > > he volunteered it. he suggests i look into part-time work, if i think i can> > > > > > > handle it, and if i do, that'll lower my income & i'll finally qualify for> > > > > > > all those assistance programs that have recently turned me away. the> > > > > > > irony...> > > > > > > > > > > > > > i found a good neurologist locally who knows sarcoid (i still thank you> > > > > > > JoDee!) and we're looking into the other symptoms - the new numbness on my> > > > > > > hands, and the tingling on my face & on my tongue. i'm going in for a> > > > > > > lumbar puncture next week - would love to hear of anyone's experience with> > > > > > > that.> > > > > > > > > > > > > > one last time, my thanks for all the help and recommendations and advice,> > > > > > > and patience through my little panic attacks. Connie, i may have some> > > > > > > questions for you in the near future!> > > > > > > > > > > > > > chris> > > > > > >> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ------------------------------------> > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > > > The Neurosarcoidosis Community> > > > > > > > > > > > > > > > > > > > Message Archives:-> > > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > > > > > > > Members Database:-> > > > > Listings of locations, phone numbers, and instant messengers.> > > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2011 Report Share Posted April 22, 2011 I've had several spinals and the results varied. I've had mixed reactions.To: Neurosarcoidosis Sent: Fri, April 22, 2011 12:09:34 AMSubject: Re: lumbar punctures Yes, I fully realise that to get experienced, the poor old medical students need to practice on real patients! It's a bit of a Catch 22 at times ... similar advice is given for periacetabular osteotomies and hip replacement (hip dysplasia operations) - you get the best results the more operations a surgeon has done ... but they have to get to that status somehow!The second one I had done, by an experienced doctor (the one guided by ultrasound) was pretty awful too, I nearly fainted ... so in that case, his experience didn't give me a less stressful procedure, it just *worked* (while the first one hadn't). No offence taken, BTW But I shall still accept brownies, LOL!xo > See the blue type below for the editorial comments! , don't get mad! I'll send you some Indiana brownies!> > Ramblin' Rose> Co-owner/Moderator> > "I child-proofed my home and they STILL get in!" (Bumper sticker)> > > > > > To: Neurosarcoidosis > > > Date: Fri, 22 Apr 2011 08:26:14 +1000> > Subject: Re: Re: settling down> > > > Re. lumbar punctures ... I had 2 in hospital five years ago (when I had a 6th nerve palsy - prob from neuro-sarc, but wasn't dxed at the time), which were truly awful. The first one was with a Resident (ie trainee) neurologist, and I nearly passed out, and it didn't work at all. The second one was done by a much more experienced doctor, using ultrasound guidance, and was easier, but still no picnic - my *husband* nearly passed out just watching, LOL. I tended to go into shock a bit, shaking all over, that kind of thing. Listening to LOUD music on your iPod during the procedure can help ...> But I had another one during my last stay in hospital (Sept last year) and it was done amazingly well and skilfully. I barely felt a thing (and it finally gave some positive test results too). So the skill and experience of the person doing it is the biggest factor!> > > > My main advice is don't let a trainee loose on your spine!! And make sure you lie down for a good few hours afterwards (they'll probably give you this advice anyway), it helps to reduce the headache that is common afterwards.> > re: pain, etc. I've had one diagnostic LP, as part of my NS work-up. My neuro did it in his office (no ultrasound) & it was basically painless. I had known him for years through the hospital & trusted his judgment as far as doing it in his office. The only problem with your advice, , to only have an experienced doctor, is how did that doctor get experience? Right, on some other poor sucker! Unfortunately, no one is born with the skills to do spinal taps, heart transplants, hair perms, etc. Maybe I'm a bit sensitive because I still remember the early births I attended as a midwifery student (not my first births; as Marla can probably attest, most labor & delivery nurses catch a few babies in their careers!). As midwifery students, we were closely supervised, but I was so grateful to those women who trusted me with their births (they could refuse, but very few did). I recall a fellow student talking about how expensive haircuts were; when I told her that my kids & I got haircuts at a barber/stylist college, she was horrified: "I'm not letting a student cut my hair!" Even when I reminded her that hair will grow back, and that these women & families let us provide prenatal care & attend their births, she didn't budge. Having gone through nursing school & midwifery training, plus teaching & supervising student nurses & midwifery students, I recommend that you check out the experience & credentials of those supervising the students, but don't just discount all students. Okay, speech over & Rose falls off her soapbox!> > I've had 3 other spinal procedures. 2 were anesthetics for surgery; the 3rd was a blood patch to stop the spinal headache from the 2nd. None of them were what I would call painful. I've known quite a few people who've had a diagnostic LP; some have described it as agony, some as uncomfortable & some that it didn't bother at all. And some of the "agonizing" procedures were done by skilled, experienced clinicians! So the skill is only part of the equation. Oops, , I didn't mean to climb back up on the soapbox. Thud (that was Rose falling off again!)> > I think the music is an excellent suggestion. Some hospitals provide CD players & a variety of music for those having surgery under local/light anesthesia. I listened to Elvis going into surgery for my cataracts, and woke up to Elvis. I've also taken my CD player (sorry, iPods are too hi-tech for me; I only gave up my tape cassettes a few years ago!) to the dentist office. Also, there are doctors & hospital staff who will tell you that you don't need to lie down at all, or just a few hours, after the LP. Having experienced a spinal headache myself, I wasn't taking any chances. Even though they told me I could be up normally after 6-8 hrs., this chick parked in my bed for the night! > > > > Good luck!> > > > xo > > > > > > > > > > > > > > > Chris> > > It's great to hear that things are settling down for you. As for the lumbar puncture I can tell you that they hurt like hell. I had one when I was 7 years old(almost 30 years ago)and remember it well and that is saying something because I was semi-comatose when they did it. That aside my fiancee did have one a few months ago and it went well hard for him to keep still because he does have some pretty severe twitching and of course it was painful but it went well. He is actually going to be having a multi-point lumbarpuncture in just a few weeks going up his whole spine that one is really going to be a challange as they have told him it will take quite some time I hope they can sedate him lightly for it. > > > Sorry I got off a bit there...> > > Anyway I'm very glad that things are looking up for you and hope this trend continues.> > > JoDee> > > > > > > > > >> > > > hi all> > > > > > > > just wanted to send a little update - believe it or not, my headaches were> > > > probably caused by the fact that my blood pressure had suddenly gone> > > > whacky. after a week full of PCP visits & measuring my bp @ 140/90, i> > > > finally had had enough and went to the emergency room two days ago, and they> > > > measured it at 178/103. got some basic blood pressure meds now, my bp is> > > > textbook normal, and the headaches are 80% gone. so there is some good> > > > news.> > > > > > > > the vertigo, the light-headedness (i've stopped calling it dizziness,> > > > because i haven't fallen over even once yet) and the foggy - can't - quite -> > > > concentrate feeling are still with me, but they're a little better. we> > > > continue to work on this, and we're giving the bp meds a few days to see if> > > > these feelings get any better.> > > > > > > > had some good conversations with my PCP, he has told me that he would> > > > support any efforts toward getting disability. i didn't even have to ask,> > > > he volunteered it. he suggests i look into part-time work, if i think i can> > > > handle it, and if i do, that'll lower my income & i'll finally qualify for> > > > all those assistance programs that have recently turned me away. the> > > > irony...> > > > > > > > i found a good neurologist locally who knows sarcoid (i still thank you> > > > JoDee!) and we're looking into the other symptoms - the new numbness on my> > > > hands, and the tingling on my face & on my tongue. i'm going in for a> > > > lumbar puncture next week - would love to hear of anyone's experience with> > > > that.> > > > > > > > one last time, my thanks for all the help and recommendations and advice,> > > > and patience through my little panic attacks. Connie, i may have some> > > > questions for you in the near future!> > > > > > > > chris> > > >> > > > > > > > > > > > > > ------------------------------------> > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > The Neurosarcoidosis Community> > > > > > > > Message Archives:-> > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > Members Database:-> > Listings of locations, phone numbers, and instant messengers.> > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2011 Report Share Posted April 22, 2011 Hi,I've had 3 spinal taps, and, while the procedure itself was fine, and I did everything they said about staying flat for 24 hours (and I did it strictly!), I still got the spinal headache all 3 times and had to go back in for a blood patch, which gives you almost instant relief. The last time, I was actually in the hospital and asked for the patch before they gave me the tap. They wouldn't do that, but they gave me an IV full of caffeine which made me jittery and full of anxiety to the point that I had a full on anxiety attack and then needed medication for that to calm me down. I ended up with a patch in the end anyways. I asked my neuro why that was, and he said that if you get the spinal headache, you are just predisposed to get it and will probably get it whether you stay flat, or not. Some people can actually get up and around moving after just a few hours, and their fluid has already regenerated. He said it is just the way your body is made. The procedure itself shouldn't be bad, but most neuros will give you a sedative to help if it is terribly anxiety producing to begin with. Good luck! Kathy  I've had several spinals and the results varied.  I've had mixed reactions. To: Neurosarcoidosis Sent: Fri, April 22, 2011 12:09:34 AM Subject: Re: lumbar punctures Yes, I fully realise that to get experienced, the poor old medical students need to practice on real patients! It's a bit of a Catch 22 at times ... similar advice is given for periacetabular osteotomies and hip replacement (hip dysplasia operations) - you get the best results the more operations a surgeon has done ... but they have to get to that status somehow! The second one I had done, by an experienced doctor (the one guided by ultrasound) was pretty awful too, I nearly fainted ... so in that case, his experience didn't give me a less stressful procedure, it just *worked* (while the first one hadn't). No offence taken, BTW  But I shall still accept brownies, LOL!xo > See the blue type below for the editorial comments! , don't get mad! I'll send you some Indiana brownies! > > Ramblin' Rose> Co-owner/Moderator> > " I child-proofed my home and they STILL get in! "   (Bumper sticker)> > > > > > To: Neurosarcoidosis > > > Date: Fri, 22 Apr 2011 08:26:14 +1000> > Subject: Re: Re: settling down > > > > Re. lumbar punctures ... I had 2 in hospital five years ago (when I had a 6th nerve palsy - prob from neuro-sarc, but wasn't dxed at the time), which were truly awful. The first one was with a Resident (ie trainee) neurologist, and I nearly passed out, and it didn't work at all. The second one was done by a much more experienced doctor, using ultrasound guidance, and was easier, but still no picnic - my *husband* nearly passed out just watching, LOL. I tended to go into shock a bit, shaking all over, that kind of thing. Listening to LOUD music on your iPod during the procedure can help ... > But I had another one during my last stay in hospital (Sept last year) and it was done amazingly well and skilfully. I barely felt a thing (and it finally gave some positive test results too). So the skill and experience of the person doing it is the biggest factor! > > > > My main advice is don't let a trainee loose on your spine!! And make sure you lie down for a good few hours afterwards (they'll probably give you this advice anyway), it helps to reduce the headache that is common afterwards. > > re: pain, etc. I've had one diagnostic LP, as part of my NS work-up. My neuro did it in his office (no ultrasound) & it was basically painless. I had known him for years through the hospital & trusted his judgment as far as doing it in his office. The only problem with your advice, , to only have an experienced doctor, is how did that doctor get experience? Right, on some other poor sucker! Unfortunately, no one is born with the skills to do spinal taps, heart transplants, hair perms, etc. Maybe I'm a bit sensitive because I still remember the early births I attended as a midwifery student (not my first births; as Marla can probably attest, most labor & delivery nurses catch a few babies in their careers!). As midwifery students, we were closely supervised, but I was so grateful to those women who trusted me with their births (they could refuse, but very few did). I recall a fellow student talking about how expensive haircuts were; when I told her that my kids & I got haircuts at a barber/stylist college, she was horrified: " I'm not letting a student cut my hair! "  Even when I reminded her that hair will grow back, and that these women & families let us provide prenatal care & attend their births, she didn't budge. Having gone through nursing school & midwifery training, plus teaching & supervising student nurses & midwifery students, I recommend that you check out the experience & credentials of those supervising the students, but don't just discount all students. Okay, speech over & Rose falls off her soapbox! > > I've had 3 other spinal procedures. 2 were anesthetics for surgery; the 3rd was a blood patch to stop the spinal headache from the 2nd. None of them were what I would call painful. I've known quite a few people who've had a diagnostic LP; some have described it as agony, some as uncomfortable & some that it didn't bother at all. And some of the " agonizing " procedures were done by skilled, experienced clinicians! So the skill is only part of the equation. Oops, , I didn't mean to climb back up on the soapbox. Thud (that was Rose falling off again!)> > I think the music is an excellent suggestion. Some hospitals provide CD players & a variety of music for those having surgery under local/light anesthesia. I listened to Elvis going into surgery for my cataracts, and woke up to Elvis. I've also taken my CD player (sorry, iPods are too hi-tech for me; I only gave up my tape cassettes a few years ago!) to the dentist office. Also, there are doctors & hospital staff who will tell you that you don't need to lie down at all, or just a few hours, after the LP. Having experienced a spinal headache myself, I wasn't taking any chances. Even though they told me I could be up normally after 6-8 hrs., this chick parked in my bed for the night! > > > > Good luck!> > > > xo > > > > > > > > > > > > > > > Chris> > > It's great to hear that things are settling down for you. As for the lumbar puncture I can tell you that they hurt like hell. I had one when I was 7 years old(almost 30 years ago)and remember it well and that is saying something because I was semi-comatose when they did it. That aside my fiancee did have one a few months ago and it went well hard for him to keep still because he does have some pretty severe twitching and of course it was painful but it went well. He is actually going to be having a multi-point lumbarpuncture in just a few weeks going up his whole spine that one is really going to be a challange as they have told him it will take quite some time I hope they can sedate him lightly for it. > > > Sorry I got off a bit there...> > > Anyway I'm very glad that things are looking up for you and hope this trend continues.> > > JoDee> > > > > > > > > >> > > > hi all> > > > > > > > just wanted to send a little update - believe it or not, my headaches were> > > > probably caused by the fact that my blood pressure had suddenly gone > > > > whacky. after a week full of PCP visits & measuring my bp @ 140/90, i> > > > finally had had enough and went to the emergency room two days ago, and they> > > > measured it at 178/103. got some basic blood pressure meds now, my bp is > > > > textbook normal, and the headaches are 80% gone. so there is some good> > > > news.> > > > > > > > the vertigo, the light-headedness (i've stopped calling it dizziness,> > > > because i haven't fallen over even once yet) and the foggy - can't - quite - > > > > concentrate feeling are still with me, but they're a little better. we> > > > continue to work on this, and we're giving the bp meds a few days to see if> > > > these feelings get any better. > > > > > > > > had some good conversations with my PCP, he has told me that he would> > > > support any efforts toward getting disability. i didn't even have to ask,> > > > he volunteered it. he suggests i look into part-time work, if i think i can > > > > handle it, and if i do, that'll lower my income & i'll finally qualify for> > > > all those assistance programs that have recently turned me away. the> > > > irony...> > > > > > > > i found a good neurologist locally who knows sarcoid (i still thank you > > > > JoDee!) and we're looking into the other symptoms - the new numbness on my> > > > hands, and the tingling on my face & on my tongue. i'm going in for a> > > > lumbar puncture next week - would love to hear of anyone's experience with > > > > that.> > > > > > > > one last time, my thanks for all the help and recommendations and advice,> > > > and patience through my little panic attacks. Connie, i may have some > > > > questions for you in the near future!> > > > > > > > chris> > > >> > > > > > > > > > > > > > ------------------------------------> > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > The Neurosarcoidosis Community> > > > > > > > Message Archives:-> > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > Members Database:- > > Listings of locations, phone numbers, and instant messengers.> > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2011 Report Share Posted April 22, 2011 Hmmm, I didn't know that, about some people being prone to get the spinal headaches. I tell you what, I'd seen a lot of patients over the years getting the headaches & we used to just have to tell them to drink plenty of fluids & wait for it to resolve. I don't know who came up with the blood patches, but that's a medical miracle! Like you, I had almost instant relief. By the time they put a bandaid on & helped me sit up, it was gone. Wonderful feeling. Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker) To: Neurosarcoidosis From: klottey4@...Date: Fri, 22 Apr 2011 23:19:44 -0400Subject: Re: lumbar punctures Hi,I've had 3 spinal taps, and, while the procedure itself was fine, and I did everything they said about staying flat for 24 hours (and I did it strictly!), I still got the spinal headache all 3 times and had to go back in for a blood patch, which gives you almost instant relief. The last time, I was actually in the hospital and asked for the patch before they gave me the tap. They wouldn't do that, but they gave me an IV full of caffeine which made me jittery and full of anxiety to the point that I had a full on anxiety attack and then needed medication for that to calm me down. I ended up with a patch in the end anyways. I asked my neuro why that was, and he said that if you get the spinal headache, you are just predisposed to get it and will probably get it whether you stay flat, or not. Some people can actually get up and around moving after just a few hours, and their fluid has already regenerated. He said it is just the way your body is made. The procedure itself shouldn't be bad, but most neuros will give you a sedative to help if it is terribly anxiety producing to begin with. Good luck!Kathy I've had several spinals and the results varied. I've had mixed reactions. To: Neurosarcoidosis Sent: Fri, April 22, 2011 12:09:34 AMSubject: Re: lumbar puncturesYes, I fully realise that to get experienced, the poor old medical students need to practice on real patients! It's a bit of a Catch 22 at times ... similar advice is given for periacetabular osteotomies and hip replacement (hip dysplasia operations) - you get the best results the more operations a surgeon has done ... but they have to get to that status somehow!The second one I had done, by an experienced doctor (the one guided by ultrasound) was pretty awful too, I nearly fainted ... so in that case, his experience didn't give me a less stressful procedure, it just *worked* (while the first one hadn't). No offence taken, BTW But I shall still accept brownies, LOL!xo > See the blue type below for the editorial comments! , don't get mad! I'll send you some Indiana brownies!> > Ramblin' Rose> Co-owner/Moderator> > "I child-proofed my home and they STILL get in!" (Bumper sticker)> > > > > > To: Neurosarcoidosis > > > Date: Fri, 22 Apr 2011 08:26:14 +1000> > Subject: Re: Re: settling down> > > > Re. lumbar punctures ... I had 2 in hospital five years ago (when I had a 6th nerve palsy - prob from neuro-sarc, but wasn't dxed at the time), which were truly awful. The first one was with a Resident (ie trainee) neurologist, and I nearly passed out, and it didn't work at all. The second one was done by a much more experienced doctor, using ultrasound guidance, and was easier, but still no picnic - my *husband* nearly passed out just watching, LOL. I tended to go into shock a bit, shaking all over, that kind of thing. Listening to LOUD music on your iPod during the procedure can help ...> But I had another one during my last stay in hospital (Sept last year) and it was done amazingly well and skilfully. I barely felt a thing (and it finally gave some positive test results too). So the skill and experience of the person doing it is the biggest factor!> > > > My main advice is don't let a trainee loose on your spine!! And make sure you lie down for a good few hours afterwards (they'll probably give you this advice anyway), it helps to reduce the headache that is common afterwards.> > re: pain, etc. I've had one diagnostic LP, as part of my NS work-up. My neuro did it in his office (no ultrasound) & it was basically painless. I had known him for years through the hospital & trusted his judgment as far as doing it in his office. The only problem with your advice, , to only have an experienced doctor, is how did that doctor get experience? Right, on some other poor sucker! Unfortunately, no one is born with the skills to do spinal taps, heart transplants, hair perms, etc. Maybe I'm a bit sensitive because I still remember the early births I attended as a midwifery student (not my first births; as Marla can probably attest, most labor & delivery nurses catch a few babies in their careers!). As midwifery students, we were closely supervised, but I was so grateful to those women who trusted me with their births (they could refuse, but very few did). I recall a fellow student talking about how expensive haircuts were; when I told her that my kids & I got haircuts at a barber/stylist college, she was horrified: "I'm not letting a student cut my hair!" Even when I reminded her that hair will grow back, and that these women & families let us provide prenatal care & attend their births, she didn't budge. Having gone through nursing school & midwifery training, plus teaching & supervising student nurses & midwifery students, I recommend that you check out the experience & credentials of those supervising the students, but don't just discount all students. Okay, speech over & Rose falls off her soapbox!> > I've had 3 other spinal procedures. 2 were anesthetics for surgery; the 3rd was a blood patch to stop the spinal headache from the 2nd. None of them were what I would call painful. I've known quite a few people who've had a diagnostic LP; some have described it as agony, some as uncomfortable & some that it didn't bother at all. And some of the "agonizing" procedures were done by skilled, experienced clinicians! So the skill is only part of the equation. Oops, , I didn't mean to climb back up on the soapbox. Thud (that was Rose falling off again!)> > I think the music is an excellent suggestion. Some hospitals provide CD players & a variety of music for those having surgery under local/light anesthesia. I listened to Elvis going into surgery for my cataracts, and woke up to Elvis. I've also taken my CD player (sorry, iPods are too hi-tech for me; I only gave up my tape cassettes a few years ago!) to the dentist office. Also, there are doctors & hospital staff who will tell you that you don't need to lie down at all, or just a few hours, after the LP. Having experienced a spinal headache myself, I wasn't taking any chances. Even though they told me I could be up normally after 6-8 hrs., this chick parked in my bed for the night! > > > > Good luck!> > > > xo > > > > > > > > > > > > > > > Chris> > > It's great to hear that things are settling down for you. As for the lumbar puncture I can tell you that they hurt like hell. I had one when I was 7 years old(almost 30 years ago)and remember it well and that is saying something because I was semi-comatose when they did it. That aside my fiancee did have one a few months ago and it went well hard for him to keep still because he does have some pretty severe twitching and of course it was painful but it went well. He is actually going to be having a multi-point lumbarpuncture in just a few weeks going up his whole spine that one is really going to be a challange as they have told him it will take quite some time I hope they can sedate him lightly for it. > > > Sorry I got off a bit there...> > > Anyway I'm very glad that things are looking up for you and hope this trend continues.> > > JoDee> > > > > > > > > >> > > > hi all> > > > > > > > just wanted to send a little update - believe it or not, my headaches were> > > > probably caused by the fact that my blood pressure had suddenly gone> > > > whacky. after a week full of PCP visits & measuring my bp @ 140/90, i> > > > finally had had enough and went to the emergency room two days ago, and they> > > > measured it at 178/103. got some basic blood pressure meds now, my bp is> > > > textbook normal, and the headaches are 80% gone. so there is some good> > > > news.> > > > > > > > the vertigo, the light-headedness (i've stopped calling it dizziness,> > > > because i haven't fallen over even once yet) and the foggy - can't - quite -> > > > concentrate feeling are still with me, but they're a little better. we> > > > continue to work on this, and we're giving the bp meds a few days to see if> > > > these feelings get any better.> > > > > > > > had some good conversations with my PCP, he has told me that he would> > > > support any efforts toward getting disability. i didn't even have to ask,> > > > he volunteered it. he suggests i look into part-time work, if i think i can> > > > handle it, and if i do, that'll lower my income & i'll finally qualify for> > > > all those assistance programs that have recently turned me away. the> > > > irony...> > > > > > > > i found a good neurologist locally who knows sarcoid (i still thank you> > > > JoDee!) and we're looking into the other symptoms - the new numbness on my> > > > hands, and the tingling on my face & on my tongue. i'm going in for a> > > > lumbar puncture next week - would love to hear of anyone's experience with> > > > that.> > > > > > > > one last time, my thanks for all the help and recommendations and advice,> > > > and patience through my little panic attacks. Connie, i may have some> > > > questions for you in the near future!> > > > > > > > chris> > > >> > > > > > > > > > > > > > ------------------------------------> > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > The Neurosarcoidosis Community> > > > > > > > Message Archives:-> > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > Members Database:-> > Listings of locations, phone numbers, and instant messengers.> > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2011 Report Share Posted April 23, 2011 My spinal tap did not shed any light To: Neurosarcoidosis Sent: Fri, April 22, 2011 10:36:44 PMSubject: Re: lumbar punctures I've had several spinals and the results varied. I've had mixed reactions. To: Neurosarcoidosis Sent: Fri, April 22, 2011 12:09:34 AMSubject: Re: lumbar puncturesYes, I fully realise that to get experienced, the poor old medical students need to practice on real patients! It's a bit of a Catch 22 at times ... similar advice is given for periacetabular osteotomies and hip replacement (hip dysplasia operations) - you get the best results the more operations a surgeon has done ... but they have to get to that status somehow!The second one I had done, by an experienced doctor (the one guided by ultrasound) was pretty awful too, I nearly fainted ... so in that case, his experience didn't give me a less stressful procedure, it just *worked* (while the first one hadn't). No offence taken, BTW But I shall still accept brownies, LOL!xo > See the blue type below for the editorial comments! , don't get mad! I'll send you some Indiana brownies!> > Ramblin' Rose> Co-owner/Moderator> > "I child-proofed my home and they STILL get in!" (Bumper sticker)> > > > > > To: Neurosarcoidosis > > > Date: Fri, 22 Apr 2011 08:26:14 +1000> > Subject: Re: Re: settling down> > > > Re. lumbar punctures ... I had 2 in hospital five years ago (when I had a 6th nerve palsy - prob from neuro-sarc, but wasn't dxed at the time), which were truly awful. The first one was with a Resident (ie trainee) neurologist, and I nearly passed out, and it didn't work at all. The second one was done by a much more experienced doctor, using ultrasound guidance, and was easier, but still no picnic - my *husband* nearly passed out just watching, LOL. I tended to go into shock a bit, shaking all over, that kind of thing. Listening to LOUD music on your iPod during the procedure can help ...> But I had another one during my last stay in hospital (Sept last year) and it was done amazingly well and skilfully. I barely felt a thing (and it finally gave some positive test results too). So the skill and experience of the person doing it is the biggest factor!> > > > My main advice is don't let a trainee loose on your spine!! And make sure you lie down for a good few hours afterwards (they'll probably give you this advice anyway), it helps to reduce the headache that is common afterwards.> > re: pain, etc. I've had one diagnostic LP, as part of my NS work-up. My neuro did it in his office (no ultrasound) & it was basically painless. I had known him for years through the hospital & trusted his judgment as far as doing it in his office. The only problem with your advice, , to only have an experienced doctor, is how did that doctor get experience? Right, on some other poor sucker! Unfortunately, no one is born with the skills to do spinal taps, heart transplants, hair perms, etc. Maybe I'm a bit sensitive because I still remember the early births I attended as a midwifery student (not my first births; as Marla can probably attest, most labor & delivery nurses catch a few babies in their careers!). As midwifery students, we were closely supervised, but I was so grateful to those women who trusted me with their births (they could refuse, but very few did). I recall a fellow student talking about how expensive haircuts were; when I told her that my kids & I got haircuts at a barber/stylist college, she was horrified: "I'm not letting a student cut my hair!" Even when I reminded her that hair will grow back, and that these women & families let us provide prenatal care & attend their births, she didn't budge. Having gone through nursing school & midwifery training, plus teaching & supervising student nurses & midwifery students, I recommend that you check out the experience & credentials of those supervising the students, but don't just discount all students. Okay, speech over & Rose falls off her soapbox!> > I've had 3 other spinal procedures. 2 were anesthetics for surgery; the 3rd was a blood patch to stop the spinal headache from the 2nd. None of them were what I would call painful. I've known quite a few people who've had a diagnostic LP; some have described it as agony, some as uncomfortable & some that it didn't bother at all. And some of the "agonizing" procedures were done by skilled, experienced clinicians! So the skill is only part of the equation. Oops, , I didn't mean to climb back up on the soapbox. Thud (that was Rose falling off again!)> > I think the music is an excellent suggestion. Some hospitals provide CD players & a variety of music for those having surgery under local/light anesthesia. I listened to Elvis going into surgery for my cataracts, and woke up to Elvis. I've also taken my CD player (sorry, iPods are too hi-tech for me; I only gave up my tape cassettes a few years ago!) to the dentist office. Also, there are doctors & hospital staff who will tell you that you don't need to lie down at all, or just a few hours, after the LP. Having experienced a spinal headache myself, I wasn't taking any chances. Even though they told me I could be up normally after 6-8 hrs., this chick parked in my bed for the night! > > > > Good luck!> > > > xo > > > > > > > > > > > > > > > Chris> > > It's great to hear that things are settling down for you. As for the lumbar puncture I can tell you that they hurt like hell. I had one when I was 7 years old(almost 30 years ago)and remember it well and that is saying something because I was semi-comatose when they did it. That aside my fiancee did have one a few months ago and it went well hard for him to keep still because he does have some pretty severe twitching and of course it was painful but it went well. He is actually going to be having a multi-point lumbarpuncture in just a few weeks going up his whole spine that one is really going to be a challange as they have told him it will take quite some time I hope they can sedate him lightly for it. > > > Sorry I got off a bit there...> > > Anyway I'm very glad that things are looking up for you and hope this trend continues.> > > JoDee> > > > > > > > > >> > > > hi all> > > > > > > > just wanted to send a little update - believe it or not, my headaches were> > > > probably caused by the fact that my blood pressure had suddenly gone> > > > whacky. after a week full of PCP visits & measuring my bp @ 140/90, i> > > > finally had had enough and went to the emergency room two days ago, and they> > > > measured it at 178/103. got some basic blood pressure meds now, my bp is> > > > textbook normal, and the headaches are 80% gone. so there is some good> > > > news.> > > > > > > > the vertigo, the light-headedness (i've stopped calling it dizziness,> > > > because i haven't fallen over even once yet) and the foggy - can't - quite -> > > > concentrate feeling are still with me, but they're a little better. we> > > > continue to work on this, and we're giving the bp meds a few days to see if> > > > these feelings get any better.> > > > > > > > had some good conversations with my PCP, he has told me that he would> > > > support any efforts toward getting disability. i didn't even have to ask,> > > > he volunteered it. he suggests i look into part-time work, if i think i can> > > > handle it, and if i do, that'll lower my income & i'll finally qualify for> > > > all those assistance programs that have recently turned me away. the> > > > irony...> > > > > > > > i found a good neurologist locally who knows sarcoid (i still thank you> > > > JoDee!) and we're looking into the other symptoms - the new numbness on my> > > > hands, and the tingling on my face & on my tongue. i'm going in for a> > > > lumbar puncture next week - would love to hear of anyone's experience with> > > > that.> > > > > > > > one last time, my thanks for all the help and recommendations and advice,> > > > and patience through my little panic attacks. Connie, i may have some> > > > questions for you in the near future!> > > > > > > > chris> > > >> > > > > > > > > > > > > > ------------------------------------> > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > The Neurosarcoidosis Community> > > > > > > > Message Archives:-> > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > Members Database:-> > Listings of locations, phone numbers, and instant messengers.> > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2011 Report Share Posted April 24, 2011 Connie, were they trying to rule out MS? That was the main purpose of mine. At the time I was told it was normal; my protein was a " little high, but it wasn't significant. " Years later when I first saw Dr. Baughman, I had a copy of the LP report & when I told him what they had said about the protein, he said. " Well, I would consider it sidnificant. " Doctors seldom contradict each other, at least to the patient, so I researched it more & found plenty of info to confirm his opinion. This was about 6 years after the initial NS work-up; another example of the value of a 2nd (or 3rd) opinion. Just my humble opinion! Re: lumbar punctures Yes, I fully realise that to get experienced, the poor old medical students need to practice on real patients! It's a bit of a Catch 22 at times ... similar advice is given for periacetabular osteotomies and hip replacement (hip dysplasia operations) - you get the best results the more operations a surgeon has done ... but they have to get to that status somehow! The second one I had done, by an experienced doctor (the one guided by ultrasound) was pretty awful too, I nearly fainte Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2011 Report Share Posted April 24, 2011 My last lumbar puncture (when I was admitted to hospital half blind last year) was to rule out MS and vasculitis - but what floored me was they told me at the time that the results were *normal* ... but when I saw my neurologist and immunologist a month or so later after discharge from the ward, they told me the results had been POSITIVE (oligoclonal bands, elevated white blood cells, the whole lot etc) and I'd been told an incorrect test result when in hospital! They tried to find out why the mistake occurred, but weren't able to. My neurologist said those test lumbar puncture results were typical of neurosarcoid (and MS), and taken with the area affected (optic chiasm) and the MRI results (localised lesions, not scattered through the brain (scattered lesions are an MS thing), it all probably added up to neurosarcoidosis. xo > Connie, were they trying to rule out MS? That was the main purpose of mine. At the time I was told it was normal; my protein was a " little high, but it wasn't significant. " Years later when I first saw Dr. Baughman, I had a copy of the LP report & when I told him what they had said about the protein, he said. " Well, I would consider it sidnificant. " Doctors seldom contradict each other, at least to the patient, so I researched it more & found plenty of info to confirm his opinion. This was about 6 years after the initial NS work-up; another example of the value of a 2nd (or 3rd) opinion. Just my humble opinion! > Re: lumbar punctures > > Yes, I fully realise that to get experienced, the poor old medical students need > to practice on real patients! It's a bit of a Catch 22 at times ... similar > advice is given for periacetabular osteotomies and hip replacement (hip > dysplasia operations) - you get the best results the more operations a surgeon > has done ... but they have to get to that status somehow! > > The second one I had done, by an experienced doctor (the one guided by > ultrasound) was pretty awful too, I nearly fainte > > > ------------------------------------ > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2011 Report Share Posted April 24, 2011 Hi , I've had several of these.. but they take me to the hospital and under fluoroscope, in x-ray, they can actually watch and see exactly the placement of the LP Needle.. its not comfortable at all it down right hurts sometimes, but if its unbearable they can remove the needle and change placement.. As far as Ms/NS Sarcoid is diagnosised via LP when your LPis negative for MS Bands/or Vasculitis.. Mine has always come back neg for bands, however my last MRI showed scattered lesions..I had a positive biopsy for sarcoid on a lymphnode they removed from my neck not only once but twice.. I decided to go to Vanderbilt, a teaching hospital, I thought that they would have a newer and/or a better plan of attack when I first got sick.. Everyone here on the list was not happy with my treatment, which was the High doses of IV Prednisone, then a slow taper, the doctor planned on me staying on prednisone, I had other plans.. The finally put me on Imuran and I stayed on it for 8 years and over came alot.. I couldn't stand or walk at all for the first 5 years, I was in an electric wheelchair they also planned for me to stay in that.. Wrong, I have better plans for my life than that.. now don't get me wrong, there is nothing wrong with a person that has to use a wheelchair or anytype of assistance.. but I had the determination to get better.. The first thing to do that was, to fire all my doctors at Vanderbilt, they nearly killed me.. or at least they almost let me die.. So for those that has made it though this email.. Take up for yourself, if something doesn't feel right, say so, if you can't then take someone with you that can!! Hugs, Re: lumbar punctures> > Yes, I fully realise that to get experienced, the poor old medical students need > to practice on real patients! It's a bit of a Catch 22 at times ... similar > advice is given for periacetabular osteotomies and hip replacement (hip > dysplasia operations) - you get the best results the more operations a surgeon > has done ... but they have to get to that status somehow!> > The second one I had done, by an experienced doctor (the one guided by > ultrasound) was pretty awful too, I nearly fainte> > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2011 Report Share Posted April 24, 2011 they were concerned because of the neuro signs. but like yours the test didn't tell me anything To: "conaugusta@..." ; "Neurosarcoidosis " <Neurosarcoidosis >Sent: Sun, April 24, 2011 5:31:11 AMSubject: Re: lumbar puncturesConnie, were they trying to rule out MS? That was the main purpose of mine. At the time I was told it was normal; my protein was a "little high, but it wasn't significant." Years later when I first saw Dr. Baughman, I had a copy of the LP report & when I told him what they had said about the protein, he said. "Well, I would consider it sidnificant." Doctors seldom contradict each other, at least to the patient, so I researched it more & found plenty of info to confirm his opinion. This was about 6 years after the initial NS work-up; another example of the value of a 2nd (or 3rd) opinion. Just my humble opinion! Re: lumbar puncturesYes, I fully realise that to get experienced, the poor old medical students need to practice on real patients! It's a bit of a Catch 22 at times ... similar advice is given for periacetabular osteotomies and hip replacement (hip dysplasia operations) - you get the best results the more operations a surgeon has done ... but they have to get to that status somehow!The second one I had done, by an experienced doctor (the one guided by ultrasound) was pretty awful too, I nearly fainte------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2011 Report Share Posted April 24, 2011 Kudos , I totally agree To: Neurosarcoidosis Sent: Mon, April 25, 2011 12:26:34 AMSubject: Re: lumbar punctures Hi , I've had several of these.. but they take me to the hospital and under fluoroscope, in x-ray, they can actually watch and see exactly the placement of the LP Needle.. its not comfortable at all it down right hurts sometimes, but if its unbearable they can remove the needle and change placement.. As far as Ms/NS Sarcoid is diagnosised via LP when your LPis negative for MS Bands/or Vasculitis.. Mine has always come back neg for bands, however my last MRI showed scattered lesions..I had a positive biopsy for sarcoid on a lymphnode they removed from my neck not only once but twice.. I decided to go to Vanderbilt, a teaching hospital, I thought that they would have a newer and/or a better plan of attack when I first got sick.. Everyone here on the list was not happy with my treatment, which was the High doses of IV Prednisone, then a slow taper, the doctor planned on me staying on prednisone, I had other plans.. The finally put me on Imuran and I stayed on it for 8 years and over came alot.. I couldn't stand or walk at all for the first 5 years, I was in an electric wheelchair they also planned for me to stay in that.. Wrong, I have better plans for my life than that.. now don't get me wrong, there is nothing wrong with a person that has to use a wheelchair or anytype of assistance.. but I had the determination to get better.. The first thing to do that was, to fire all my doctors at Vanderbilt, they nearly killed me.. or at least they almost let me die.. So for those that has made it though this email.. Take up for yourself, if something doesn't feel right, say so, if you can't then take someone with you that can!! Hugs, Re: lumbar punctures> > Yes, I fully realise that to get experienced, the poor old medical students need > to practice on real patients! It's a bit of a Catch 22 at times ... similar > advice is given for periacetabular osteotomies and hip replacement (hip > dysplasia operations) - you get the best results the more operations a surgeon > has done ... but they have to get to that status somehow!> > The second one I had done, by an experienced doctor (the one guided by > ultrasound) was pretty awful too, I nearly fainte> > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
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