Aa
Would you have LPs to help develop a new DMD?
Some neuros are trying to start a trial for a neuroprotective drug for PPMS. They are planning to use measurements of substances in the CSF (cerebrospinal fluid) to assess whether the drug is having an effect. Their grant application was recently rejected.
One of the funders' concerns was that they weren't convinced that people with MS would be willing to undergo 3 LPs as part of the trial. The neuros are trying to find out whether this is true of not. They have posted a video and a survey at
http://multiple-sclerosis-research.blogspot.com/2011/09/are-you-up-for-having-lumbar-puncture.html
They are asking people to watch the video and then take the survey. You don't have to have PPMS to take the survey--they are just trying to find out the general willingness of people with MS to undergo this kind of procedure for the sake of medical research and potential new treatments. They are asking people to answer honestly.
sho
One of the funders' concerns was that they weren't convinced that people with MS would be willing to undergo 3 LPs as part of the trial. The neuros are trying to find out whether this is true of not. They have posted a video and a survey at
http://multiple-sclerosis-research.blogspot.com/2011/09/are-you-up-for-having-lumbar-puncture.html
They are asking people to watch the video and then take the survey. You don't have to have PPMS to take the survey--they are just trying to find out the general willingness of people with MS to undergo this kind of procedure for the sake of medical research and potential new treatments. They are asking people to answer honestly.
sho
I have PPMS and was eager to do a study at NIH until I heard about the LPs. I have had two LP headaches and am never having another LP Period.
Julie and all who answered the survey at http://www.surveymonkey.com/s/5JV6723 I'm sure the researchers appreciated it.
Guitar_grrrl: I think it wasn't clear, but there is no trial yet. Their grant application got turned down and one of the concerns was that the funders didn't think they could get people with MS to have 3 LPs. So the survey is just an attempt to get a sense of whether or not this is valid. Anybody with MS can answer. They would even appreciate knowing if you wouldn't have an LP since there is no point in pursuing a trial if they can't get people to participate.
Of course, the people with MS who are on the internet to find this survey and motivated enough to spend 15 minutes or so on it do represent a skewed sample set, but so are the people who participate in clinical trials.
Johnniebear: Good for you! Here are a couple previous threads/links about donating your brain and spinal cord after death:
http://www.medhelp.org/posts/Multiple-Sclerosis/OT--Morbid/show/1020613
http://www.medhelp.org/posts/Multiple-Sclerosis/update-on-donating/show/1022177
http://www.nationalmssociety.org/research/researchers-need-you/donate-to-tissue-banks/index.aspx
sho
PS I have read some things (of course not finding them now) that suggest that lying down after an LP has no effect on whether or not you get a headache.
Here is one meta-analysis:
"The authors believe there is a lack of evidence to support the use of bed rest to prevent headaches after lumbar puncture. Further research is unlikely to uncover any benefits. However, fluid supplementation after lumbar puncture holds promise. The authors recommend further studies
to investigate fluid supplementation as an inexpensive and convenient method of mitigating or preventing post-lumbar-puncture headaches."
http://isrjem.org/Isrjem_June08.LP%20Diner_Postprod.pdf
"Appropriate use of smaller-gauge, atraumatic needles is likely the single most important factor in reducing PDPH [post-dural puncture headaches]. Hydration and bed rest do little to prevent PDPH."
http://www.medscape.com/viewarticle/578254_9
Guitar_grrrl: I think it wasn't clear, but there is no trial yet. Their grant application got turned down and one of the concerns was that the funders didn't think they could get people with MS to have 3 LPs. So the survey is just an attempt to get a sense of whether or not this is valid. Anybody with MS can answer. They would even appreciate knowing if you wouldn't have an LP since there is no point in pursuing a trial if they can't get people to participate.
Of course, the people with MS who are on the internet to find this survey and motivated enough to spend 15 minutes or so on it do represent a skewed sample set, but so are the people who participate in clinical trials.
Johnniebear: Good for you! Here are a couple previous threads/links about donating your brain and spinal cord after death:
http://www.medhelp.org/posts/Multiple-Sclerosis/OT--Morbid/show/1020613
http://www.medhelp.org/posts/Multiple-Sclerosis/update-on-donating/show/1022177
http://www.nationalmssociety.org/research/researchers-need-you/donate-to-tissue-banks/index.aspx
sho
PS I have read some things (of course not finding them now) that suggest that lying down after an LP has no effect on whether or not you get a headache.
Here is one meta-analysis:
"The authors believe there is a lack of evidence to support the use of bed rest to prevent headaches after lumbar puncture. Further research is unlikely to uncover any benefits. However, fluid supplementation after lumbar puncture holds promise. The authors recommend further studies
to investigate fluid supplementation as an inexpensive and convenient method of mitigating or preventing post-lumbar-puncture headaches."
http://isrjem.org/Isrjem_June08.LP%20Diner_Postprod.pdf
"Appropriate use of smaller-gauge, atraumatic needles is likely the single most important factor in reducing PDPH [post-dural puncture headaches]. Hydration and bed rest do little to prevent PDPH."
http://www.medscape.com/viewarticle/578254_9
I had no problems with my LP.
I would go ahead a be the wing man for this .
I'm also considering donating my CNS to the teaching hospital upon my
my death ..
Take care
Johnniebear
I would go ahead a be the wing man for this .
I'm also considering donating my CNS to the teaching hospital upon my
my death ..
Take care
Johnniebear
20 cc, holy cow! I got 5 cc and it hurt like hell down my left sciatic nerve for like half an hour. The doctor said it hurt because it was compressing my spine or something--maybe my nerves are wonky from my spina bifida.
20 cc....
20 cc....
Q - Are you thinking of me and my LP? I was sitting up immediately afterwards, and was given my test tubes of CSF to take one floor down to the lab. I don't remember if they drew the blood up in their office or if they did that in the 1st floor lab.
Being responsible for my own lab work was rather empowering. I was amazed at how clear it was. I was perfectly capable of transporting these vials and making sure it stayed with my serum samples, rather than risk them being waylaid in their clinic.
I had absolutely no problem with the LP - none. I would absolutely be wlling to do it again and again to help with research.
Being responsible for my own lab work was rather empowering. I was amazed at how clear it was. I was perfectly capable of transporting these vials and making sure it stayed with my serum samples, rather than risk them being waylaid in their clinic.
I had absolutely no problem with the LP - none. I would absolutely be wlling to do it again and again to help with research.
Quix, I did too. I laid there for 20 minutes then was excused to do my labs and drive home an hour and half from Issaquah to Puyallup. I was also told I could go to work since I was sitting.
Others who said their patch hurt going in; They warned me of that but it didn't hurt AT ALL. The doctor indicated he thought that meant I was extremely depleted. He put 20cc in.
Others who said their patch hurt going in; They warned me of that but it didn't hurt AT ALL. The doctor indicated he thought that meant I was extremely depleted. He put 20cc in.
If the study looked good to me, I would definitely do it. My last three LPs were a breeze and science can't progress sometimes without some sacrifice.
Since the researchers are concerned about people's willingness to do the multiple LPs, I would guess that they would use the most skilled practitioner and use all known methods of avoiding the possible leak, including fluoroscopic guidance.
Doing a blood patch with every tap makes the LP far more invasive and raises the potential for infection enormously. I do agree they should do the patch earlier if the headache is still increasing by day 3.
We had one member here who's neuro did the tap in his own office and ...... made the patient walk the samples down to the first floor lab herself instead of having her rest. ?????!! I was aghast.
Quix
Quix
Since the researchers are concerned about people's willingness to do the multiple LPs, I would guess that they would use the most skilled practitioner and use all known methods of avoiding the possible leak, including fluoroscopic guidance.
Doing a blood patch with every tap makes the LP far more invasive and raises the potential for infection enormously. I do agree they should do the patch earlier if the headache is still increasing by day 3.
We had one member here who's neuro did the tap in his own office and ...... made the patient walk the samples down to the first floor lab herself instead of having her rest. ?????!! I was aghast.
Quix
Quix
My neuro conducts many different trials for all types of MS. He has provided me info on the ones I would qualify for, but I've never been able to participate due to time constraints; my neuro is a nearly 5 hour drive from my home. I did take note when we've discussed his various trials, he always stresses that one should not enter into one with expectations that they will personally benefit in the short or long run, and that the motivation needs to be helping go increase the overall body of knowledge. It is possible that one might personally benefit but there cannot be an expectation for this to occur. If he senses that a patient does have such an expectation he would be reluctant to have them participate.
As far as this trial, I would be willing to undergo 3 LPs. I didn't have a bad experience with mine, possibly because I didn't get up for hours afterwards. I am so surprised to read that some of you were pretty much kicked out soon after the procedure. I was told to not to move for hours, and my husband and the nurses brought me Coke and coffee to drink. When the unit I had my LP in was closing for the night, they wouldn't even let me walk to the room next door, they pushed me in the bed I was laying on. Possibly because of this I didn't get the headache. If I ever have another LP I will do the same and I think if the hospital staff told me to get up sooner than I think I should, I will just refuse. What are they going to do, call Security? lol
As far as this trial, I would be willing to undergo 3 LPs. I didn't have a bad experience with mine, possibly because I didn't get up for hours afterwards. I am so surprised to read that some of you were pretty much kicked out soon after the procedure. I was told to not to move for hours, and my husband and the nurses brought me Coke and coffee to drink. When the unit I had my LP in was closing for the night, they wouldn't even let me walk to the room next door, they pushed me in the bed I was laying on. Possibly because of this I didn't get the headache. If I ever have another LP I will do the same and I think if the hospital staff told me to get up sooner than I think I should, I will just refuse. What are they going to do, call Security? lol
The doc is from the UK, but I do not think the survey was meant to be only for people from the UK. He just wants to learn the feelings of people with MS about LPs.
I would love to advance the science and have medicine available for people with PPMS; however, I couldn't do it. I didn't have a good experience with the LP. If I had 3 LPs, I would likely be in bed for the entire time crying my eyes out. I danged near went insane from the pain of the headache which kept me in bed for 2-3 weeks . The blood patch wasn't an option (long story).
I got the request to watch this through my e-mail - I think I had participated in another survey....hmmmm.
I didn't go much further than the discussion on the page because I was under the impression this was a UK study. Am I wrong? I'll have another look at it. My LP experience was:
Initial tap - fine
Subsequent LP headache - absolute Hell!
Blood patch - hurt going in (SI joint pain, mild Cauda Equina effects) but head pain gone very quickly!
Bottom line? If I were progressing rapidly, yeah, I'd do it.
I didn't go much further than the discussion on the page because I was under the impression this was a UK study. Am I wrong? I'll have another look at it. My LP experience was:
Initial tap - fine
Subsequent LP headache - absolute Hell!
Blood patch - hurt going in (SI joint pain, mild Cauda Equina effects) but head pain gone very quickly!
Bottom line? If I were progressing rapidly, yeah, I'd do it.
thanks for sharing tht one, Shoshin. The least we can do is take this survey and help him to collect the numbers he needs.
Note: you can do this one whether you have PPMS, SPMS or RRMS. It just takes a short bit of time to watch the video and complete the survey.
Note: you can do this one whether you have PPMS, SPMS or RRMS. It just takes a short bit of time to watch the video and complete the survey.
I have never had an LP as an adult (one as a child). Hate the idea of it but definately would do it to help research. My gosh what a small price to pay for helping research move along.
Julie
Julie
I watched the video and then took the survey. I hope they get a good amount of participants. Its really not a big deal and takes less than 30 minutes.
Okay, guys, if you really want to help these researchers, you have to watch their 10-minute video at
http://www.youtube.com/watch?v=vOf7LF5Gb9E
and answer their survey at
http://www.surveymonkey.com/s/5JV6723
The video is quite interesting. They explain
1. Why it is so hard to measure progression in clinical trials. It takes a long time and requires a lot of people so therefore costs a lot of money. Progression in MS is relatively slow (and for myself I don't have a ton of faith in the typical measures like EDSS anyway). RRMS trials have it easier since they don't have to measure progression directly; they use things like relapses and new or enhancing lesions that are supposed to be proxies. These proxies aren't very useful for PPMS or SPMS. If you don't follow enough people for a long enough time, the trial is under-powered (what seems to have happened to the trial for copaxone in PPMS) and you can't really prove anything one way or the other for all your money.
2. How they think LPs can be used as a proxy for progression to decrease the need for time, number of people and money for trials in progressive MS. When the myelin is removed from axons and the neurons are dying, the parts of the axons break apart and are released into the CSF. One thing released is neurofilaments. These can be counted in the CSF. If more of neurons are dying, there are more neurafilaments in the CSF. Some research has found that the level of these neurofilaments in the CSF is a good prognostic marker for who will progress over the next three years.
3. How they can minimize the bad parts of LPs. They will use newer atraumatic, non-cutting needles rather than the traditional traumatic, cutting needles. This hugely reduces the number of LP headaches. They are also going to use fluoroscopy, which enables them to guide the needle more accurately and not hit the bony tissue (which is painful)
Bottom line: if people with MS are willing to be in trials with 3 LPs, they can do 10x as many trials in 1/3 of the time.
As for me, I'm with Sidesteps. No way are 3 LPs worse than this d*** MS. Of course, my one LP wasn't traumatic.
sho
http://www.youtube.com/watch?v=vOf7LF5Gb9E
and answer their survey at
http://www.surveymonkey.com/s/5JV6723
The video is quite interesting. They explain
1. Why it is so hard to measure progression in clinical trials. It takes a long time and requires a lot of people so therefore costs a lot of money. Progression in MS is relatively slow (and for myself I don't have a ton of faith in the typical measures like EDSS anyway). RRMS trials have it easier since they don't have to measure progression directly; they use things like relapses and new or enhancing lesions that are supposed to be proxies. These proxies aren't very useful for PPMS or SPMS. If you don't follow enough people for a long enough time, the trial is under-powered (what seems to have happened to the trial for copaxone in PPMS) and you can't really prove anything one way or the other for all your money.
2. How they think LPs can be used as a proxy for progression to decrease the need for time, number of people and money for trials in progressive MS. When the myelin is removed from axons and the neurons are dying, the parts of the axons break apart and are released into the CSF. One thing released is neurofilaments. These can be counted in the CSF. If more of neurons are dying, there are more neurafilaments in the CSF. Some research has found that the level of these neurofilaments in the CSF is a good prognostic marker for who will progress over the next three years.
3. How they can minimize the bad parts of LPs. They will use newer atraumatic, non-cutting needles rather than the traditional traumatic, cutting needles. This hugely reduces the number of LP headaches. They are also going to use fluoroscopy, which enables them to guide the needle more accurately and not hit the bony tissue (which is painful)
Bottom line: if people with MS are willing to be in trials with 3 LPs, they can do 10x as many trials in 1/3 of the time.
As for me, I'm with Sidesteps. No way are 3 LPs worse than this d*** MS. Of course, my one LP wasn't traumatic.
sho
Silly isn't the word I'd use. Yeah..
I had the same thought about just doing a blood patch as part of the procedure. They have to take blood anyway as part of the LP protocol. Stick some of it in my back!
I had the same thought about just doing a blood patch as part of the procedure. They have to take blood anyway as part of the LP protocol. Stick some of it in my back!
BC - the doctor's I had for my LP and Blood Patch also said the same thing. It's the needle they use and the percentages are much higher than they say.
Either way, I would do this for 3 LP's. It wasn't HORRIBLE though I have to admit 3 weeks later I'm still have back/hip problems. I'm thinking I might make a PCP appointment to check if I'm healing correctly. (I have had a couple bruises that seem to be taking a while to heal as well. It's suspicious.) I'm getting off topic. Anyhooo - lol ~
I think there are ways they can minimize the CSF leaks and reduce the headache if they were more pro-active. I learned a lot from my CSF leak. I am not sure I understand WHY they don't make it an outpatient procedure where they do the LP, give IV caffeine drip (which causes the vessels to constrict and seal the hole/leak) then release the patients 4 hours later....or just do the darn blood patch when they are in there.
Obviously, this isn't cost effective so they take the risk for the patien, let them go home only to have them in the ER with the spinal headache and ER charges. Is it just me or is that SILLY?!
Either way, I would do this for 3 LP's. It wasn't HORRIBLE though I have to admit 3 weeks later I'm still have back/hip problems. I'm thinking I might make a PCP appointment to check if I'm healing correctly. (I have had a couple bruises that seem to be taking a while to heal as well. It's suspicious.) I'm getting off topic. Anyhooo - lol ~
I think there are ways they can minimize the CSF leaks and reduce the headache if they were more pro-active. I learned a lot from my CSF leak. I am not sure I understand WHY they don't make it an outpatient procedure where they do the LP, give IV caffeine drip (which causes the vessels to constrict and seal the hole/leak) then release the patients 4 hours later....or just do the darn blood patch when they are in there.
Obviously, this isn't cost effective so they take the risk for the patien, let them go home only to have them in the ER with the spinal headache and ER charges. Is it just me or is that SILLY?!
I N T E R E S T I N G!!!!!!!!!
Wow. Such possibilities of worthy outcomes vs temporary discomfort that can come from the LP.
I would have to look at the neuros and their progress so far before making the decision.
So, my yea or nay decision would lie in whether I thought it would be worth it in the long run.
-Shell
Wow. Such possibilities of worthy outcomes vs temporary discomfort that can come from the LP.
I would have to look at the neuros and their progress so far before making the decision.
So, my yea or nay decision would lie in whether I thought it would be worth it in the long run.
-Shell
I would do it, as well. I've had only one LP... well, another one for a blood patch... Honestly, both were not bad. Scary, but not terribly painful. Well, the blood patch hurt when they put the blood in, but the puncture itself was okay. I know that others have had bad experiences.
By the way, my docs disagree with that guy on the "10% get CSF leaks" (spinal headaches) stat. My neuro said it happens to most of her patients--she blamed the size of the needle, that it's larger than it used to be. The doc who did my blood patch said it happens "frequently" with outpatient LPs. The nurse said inpatients don't usually get them, and she thought it was because they are lying down.
So next time I have an LP, I'll ignore their attempts to kick me out after 15 minutes. And I'll lie down in the car. Live and learn.
By the way, my docs disagree with that guy on the "10% get CSF leaks" (spinal headaches) stat. My neuro said it happens to most of her patients--she blamed the size of the needle, that it's larger than it used to be. The doc who did my blood patch said it happens "frequently" with outpatient LPs. The nurse said inpatients don't usually get them, and she thought it was because they are lying down.
So next time I have an LP, I'll ignore their attempts to kick me out after 15 minutes. And I'll lie down in the car. Live and learn.
I know the NIH has a 2 LP requirement for their PPMS study and I am personally aware of several people who declined to participate once they heard about this requirement. It will be interesting to see how this survey turns out. I wish they could find another way than using LPs to gauge the effectiveness of the drug. Maybe someday.
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