for those with IH that are feeling alone please know that you are not alone and there are a few facebook groups that have been my saviour .. my fave is "IH support" please join a group if you want to be able to chat with others to help you cope ..xx may you all have a pain free day xx
hey, i was wondering if you could tell me a little about what you have to go thru... i have just been told that this is what i have, my lumbar puncture showed that me pressure was 50 just on the first test. i feel like death is coming soon, im on about 8 different meds. and i see a nerologist this week. i really need to talk to somone that feels the pain too. i really would like to know, so i can have better insight when i approach my doctor,
hi im 13 i have had 8 lumbar punctures. (6 failed ones and 2 successful ones) and i am still getting headaches so i might have to have a shunt inserted.(i have benign intracranial hypertension/idiopathic intracranial hypertension)
I konw what you went through is painful. I have had about 50 plus of them. I bet you felt so much better after, because while the fluid is coming off you can really feel the differents. I sure can!
i have had iih for 6 years im 14 now im male i have had to have 6 lps nd 2 brin probs im now at the point were this disese is extreamly life threatning to me as for this video i find it helful for people ho need to have lps
@virgonina28 Yes, feels like someone sucking out your kidneys ! Very much like real bad labour pains, and if your like me ... get a PL headache which is like 10 migraines in one, Blood patches work great but your back is very sore for about a week :+((
i have to get one done on Monday... 3days from now... im very nervous. they said theyre going to numb that area first and use xrays to help them guide the needle but im scared to fee pain. ive never done any procedure in a hospital before, the most ive ever done is have blood drawn. im extremely scared to the point i can barely sleep lately. does it hurt? what about during the procedure? and after??? plz let me know im so nervous!
My Mother nearly fainter when she saw how much CSF they drained. I can't have them any more now as my ICP is over 80(800 in US terms). I'm now too right risk for herniation so they refuse to do any more LPs on me, not that I'd let them anyway and they merely exacerbated my IH. :( There's also a high risk of Arachnoiditis with repeated LPs, google it and learn more. I wish you the best Honey, and I'm so sorry you have to experience this torturing disease! Please do more research and be careful!
Nikki, I admire your courage not only with IH but with getting serial LPs. With some IH victims they've found that repeaded LPs can sometimes exacerbate IH and make it worse, meaning every time the CSF replenishes itself, it can often cause ICP to rise even higher with each subsequent LP. Last like I had an LP they filled 3.5 of those specimen jars with CSF they drained from me.
TMreed - i agree the one of the children should not be put up here. but i am a 30 year old woman trying to raise awareness and help other people going through this crappy disease. When i was first diagnosed i was grateful that other had put video up to help me understand what i was going to have to go through. and i didnt make you watch it ...
Nikkiblu, I for one, appreciate you putting the video up. I was recently (and suddenly) suspected of having pseudotumor cerebri (idiopathic intracranial hypertension), and when I found out that an LP was the only way to measure the pressure, I was NOT a happy camper. I've always had a fear of needles, but being able to come online and watch some of the other LP videos was really reassuring. As it turned out, the LP was not nearly as bad as I expected. Thanks for sharing your experience!
last year i was getting them every 3 weeks ... this year i have only needed the one so fay ..(touch wood) i can feel the pressure is building up again but it is taking longer now which is great ... my neuro Dr told me that after 6 month it just goes away on some people im up to month 7 so fingers crossed...
hi Amy, im sorry to hear that you needed a LP & and that is the very reason i filmed my journey, there was not that much info out there when i was diagnosed . so im giving my gift of experience to help others get through the fear of the unknowing....
they give you an anasetic which stings ..... i get mine done with CT machine as guidence ..(it costs me about $250 more than a public hospital) but the machine shows the exact point where the needle is and the Dr does not have to go poking around to find the spinal cord.. the needle has to squeeze through the vertibree and be inserted into the spinal cord to drain the fluid. when the needle is going into the cord it is a dense pain that is very uncomfortable. once it is in they hook up a tube.
They did the same thing with the two epidurals and facet block that they did on me. They used lidodaine, which stings and then they use a flourscan as guidance to see where the painful nerve root is as they guide a small, thick needle in the epidural space. After that they inject contrast dye and then the cortisone. I have heard different stories about spinal taps from not feeling it at all to a ton of pain.
i agree.. it all depend of who does it ... i have had times when i have asked when he is going to put it in and it is already in and there was a time i went to public hostilal (without CT and i it felt like i was beeing stabbed 1000 times two Drs couldnt do it and i cryed in pain for 3 hours... it is so worth paying the extra to be looked after and making this awful treatment less painful.
I think it is much safer to do these procedures with an image as guidance. I went to Kaiser Richmond (in California) to have them done. Unfortunately, the anestesiologist who did this procedure is no longer there. If you want to get a cortisone injection done now you have to go to Kaiser Oakland to get them done and they don't use a flourscan there.
and that tube then fills with fluid they hold it vertical which tells the Dr the Pressure at which the fluid is comming out is the pressure that is released from your spine and brain once they messure the pressure. they drain 10-40mls out depending on how high your pressure is.
a normal pressure is between 5-10 and i have been as high as 42 my lowest was 28. the higer your pressure the more they drain out ..
but they cant take to much or you end up with a low pressure headache which is much worse than high pressure. a low pressure feels like when your really hung over and dehidrated and your brain is thirsty ... times by 10 ....
but back to the LP.. yes they can hurt and be uncomfortable... but find a DR you feel comfortable with and if you dont want to be a pin coushin if your dr had trouble getting it into your spine... Pay for it to be done privatly under CT scanner .... and i do a meditation 2
I don't understand why people do videos of painful procedures, especially on young children and then put them up here or on the news. It is an invasion of space. I had both an epidural and a facet block and I would not have wanted anyone to do a video of them taking a huge needle and putting it into my spine, or hip or wherever. The procedure itself is invasive enough. I think things like this should be kept public. They are pretty awful.
for those with IH that are feeling alone please know that you are not alone and there are a few facebook groups that have been my saviour .. my fave is "IH support" please join a group if you want to be able to chat with others to help you cope ..xx may you all have a pain free day xx
nikkiblu78 3 months ago
@kbenge89 i would luv to! my mom has this i think yall should meet up. :)
1xxteardropxx 1 year ago
hey, i was wondering if you could tell me a little about what you have to go thru... i have just been told that this is what i have, my lumbar puncture showed that me pressure was 50 just on the first test. i feel like death is coming soon, im on about 8 different meds. and i see a nerologist this week. i really need to talk to somone that feels the pain too. i really would like to know, so i can have better insight when i approach my doctor,
budahoo 1 year ago
hi im 13 i have had 8 lumbar punctures. (6 failed ones and 2 successful ones) and i am still getting headaches so i might have to have a shunt inserted.(i have benign intracranial hypertension/idiopathic intracranial hypertension)
gh3rules1353 2 years ago
I konw what you went through is painful. I have had about 50 plus of them. I bet you felt so much better after, because while the fluid is coming off you can really feel the differents. I sure can!
ALPRG 2 years ago
i have had this disese for 6 years now
nitroracer94 2 years ago
i have had iih for 6 years im 14 now im male i have had to have 6 lps nd 2 brin probs im now at the point were this disese is extreamly life threatning to me as for this video i find it helful for people ho need to have lps
nitroracer94 2 years ago
does it hurt during? before? after?
virgonina28 2 years ago
it hurts during and a little bit after
FunnyGabbie 2 years ago
@virgonina28 Yes, feels like someone sucking out your kidneys ! Very much like real bad labour pains, and if your like me ... get a PL headache which is like 10 migraines in one, Blood patches work great but your back is very sore for about a week :+((
Sandirokz 5 months ago
i have to get one done on Monday... 3days from now... im very nervous. they said theyre going to numb that area first and use xrays to help them guide the needle but im scared to fee pain. ive never done any procedure in a hospital before, the most ive ever done is have blood drawn. im extremely scared to the point i can barely sleep lately. does it hurt? what about during the procedure? and after??? plz let me know im so nervous!
virgonina28 2 years ago
My Mother nearly fainter when she saw how much CSF they drained. I can't have them any more now as my ICP is over 80(800 in US terms). I'm now too right risk for herniation so they refuse to do any more LPs on me, not that I'd let them anyway and they merely exacerbated my IH. :( There's also a high risk of Arachnoiditis with repeated LPs, google it and learn more. I wish you the best Honey, and I'm so sorry you have to experience this torturing disease! Please do more research and be careful!
MamaLeece 2 years ago
Nikki, I admire your courage not only with IH but with getting serial LPs. With some IH victims they've found that repeaded LPs can sometimes exacerbate IH and make it worse, meaning every time the CSF replenishes itself, it can often cause ICP to rise even higher with each subsequent LP. Last like I had an LP they filled 3.5 of those specimen jars with CSF they drained from me.
MamaLeece 2 years ago
hi
i am a 16 male and i am diagnosed with iih its a disease that gives high csf pressure
i did 2 lumber punctures
1) wasnt painfull at all it was fast and easy but i started getting back pain when i stand
2)very painfull
for some reason the second 1 was verry different from the first
anyways im getting my 3rd tommorow and my doctor told me i need 1 every week!
this is my experiance with lb and thanks alot for posting comments and putting a video it realy helps and reassures u
domya92 2 years ago
TMreed - i agree the one of the children should not be put up here. but i am a 30 year old woman trying to raise awareness and help other people going through this crappy disease. When i was first diagnosed i was grateful that other had put video up to help me understand what i was going to have to go through. and i didnt make you watch it ...
nikkiblu78 3 years ago
Nikkiblu, I for one, appreciate you putting the video up. I was recently (and suddenly) suspected of having pseudotumor cerebri (idiopathic intracranial hypertension), and when I found out that an LP was the only way to measure the pressure, I was NOT a happy camper. I've always had a fear of needles, but being able to come online and watch some of the other LP videos was really reassuring. As it turned out, the LP was not nearly as bad as I expected. Thanks for sharing your experience!
amyabtaylor 3 years ago
I knew someone who had to have an LP every few months for that condition.
tmreed 3 years ago
last year i was getting them every 3 weeks ... this year i have only needed the one so fay ..(touch wood) i can feel the pressure is building up again but it is taking longer now which is great ... my neuro Dr told me that after 6 month it just goes away on some people im up to month 7 so fingers crossed...
nikkiblu78 3 years ago
hi Amy, im sorry to hear that you needed a LP & and that is the very reason i filmed my journey, there was not that much info out there when i was diagnosed . so im giving my gift of experience to help others get through the fear of the unknowing....
nikkiblu78 3 years ago
Did you feel pain or was it just discomfort?
tmreed 3 years ago
they give you an anasetic which stings ..... i get mine done with CT machine as guidence ..(it costs me about $250 more than a public hospital) but the machine shows the exact point where the needle is and the Dr does not have to go poking around to find the spinal cord.. the needle has to squeeze through the vertibree and be inserted into the spinal cord to drain the fluid. when the needle is going into the cord it is a dense pain that is very uncomfortable. once it is in they hook up a tube.
nikkiblu78 3 years ago
They did the same thing with the two epidurals and facet block that they did on me. They used lidodaine, which stings and then they use a flourscan as guidance to see where the painful nerve root is as they guide a small, thick needle in the epidural space. After that they inject contrast dye and then the cortisone. I have heard different stories about spinal taps from not feeling it at all to a ton of pain.
tmreed 3 years ago
i agree.. it all depend of who does it ... i have had times when i have asked when he is going to put it in and it is already in and there was a time i went to public hostilal (without CT and i it felt like i was beeing stabbed 1000 times two Drs couldnt do it and i cryed in pain for 3 hours... it is so worth paying the extra to be looked after and making this awful treatment less painful.
nikkiblu78 3 years ago
I think it is much safer to do these procedures with an image as guidance. I went to Kaiser Richmond (in California) to have them done. Unfortunately, the anestesiologist who did this procedure is no longer there. If you want to get a cortisone injection done now you have to go to Kaiser Oakland to get them done and they don't use a flourscan there.
tmreed 3 years ago
and that tube then fills with fluid they hold it vertical which tells the Dr the Pressure at which the fluid is comming out is the pressure that is released from your spine and brain once they messure the pressure. they drain 10-40mls out depending on how high your pressure is.
a normal pressure is between 5-10 and i have been as high as 42 my lowest was 28. the higer your pressure the more they drain out ..
nikkiblu78 3 years ago
but they cant take to much or you end up with a low pressure headache which is much worse than high pressure. a low pressure feels like when your really hung over and dehidrated and your brain is thirsty ... times by 10 ....
but back to the LP.. yes they can hurt and be uncomfortable... but find a DR you feel comfortable with and if you dont want to be a pin coushin if your dr had trouble getting it into your spine... Pay for it to be done privatly under CT scanner .... and i do a meditation 2
nikkiblu78 3 years ago
Excuse me, what I meant procedures like this should be kept private.
tmreed 3 years ago
I don't understand why people do videos of painful procedures, especially on young children and then put them up here or on the news. It is an invasion of space. I had both an epidural and a facet block and I would not have wanted anyone to do a video of them taking a huge needle and putting it into my spine, or hip or wherever. The procedure itself is invasive enough. I think things like this should be kept public. They are pretty awful.
tmreed 3 years ago
*ouch* was it painful..
zoopango 3 years ago