Hi Alin, the name is Dave andd I"m a neurology resident with the University of Toronto doing a study on movement disorders (such as cerebral palsy, hence how I found your videos) and I was wondering if I could pick your brain. I feel that you could offer a lot of insight. Thanks for your time and if you're interested drop me a line! Dave
I am going to have my third baclofen pump put in me on March 15th. The first one had to be replaced after 4 years because the battery was dying. I remember the neurologist telling me, "We don't actually know what will happen if the pump stops working." He mentioned that side effects from sudden baclofen withdrawal are seizures, coma, and death. I have spastic diplegia.
Is the surgery painful? My 8 year old is getting one. Is having the test FEb 2, 2010.. he also has a gtube. He has static encephalopathy and cannot talk so I only know he's in pain when he cries.. if there is pain, where does it come from? the incision?.. etc.. what about the test.. does that hurt?
@angelbaby39180 erm i had my baclofen pump just over 12 months ago and had no trouble post surgery and it didnt hurt too much having the incision,just tender around the stitches, with regard to the test, if you want me to be honest, it was not a very pleasent experience and it may be that this is the worse bit, which i found it to be, but just a little bit of advice, they dosay if you can lie still for a few hours after the trial the side effects arent as bad.
My sisters destroyed hard drive is my nerd paper weight.
I don't mind the idea of surgery for the pump per se because i understand machines just run out/need repair but a longer lasting battery or rechargeable battery. I know our internal mechanics tend to be more uppity and prone to issue compared to the item outside of our body running. I would love someone working on making better shunts, I have a threat of getting one and i see how often people with my condition get revision surgeries
Oh i knew that I was meaning can i keep the old pump after they replace it. Its a cool object to have make an interesting paper weight and conversation piece. I feel like it would be easier just to spend a few days in hospital hooked up to a battery charger each year instead or the surgery and a few days in hospital. You could probably even take the charger home if they had enough. That would be a cool new battery to have in the future to save on operations.
Definitely a true elite medical nerd paperweight! Would look awesome in my room with how much medical stuff I have to begin with! And it would be a good specimen to take apart and put back together to see how it works. :P
I cannot share with you my idea but I am working to develop a pump that will allow the user to keep their pump infinitely.
hmm mine do. what was the alarm cause was it fixed
i dont like airports but god itd be fun to empty the worlds largest airport in 5 minutes and cancel a few hundred flights make companies lose millions of dollars all over one little pump alarm lmao.
thats interesting about your friend... maybe i should tell my friends my pump has camera and voice activation youtube com/watch?v=klZ_xA1zcQw
I am not sure which tone it was but it went three different intervals and was the high-low siren if i were to guess. I knew it might happen but it was still funny.
You totally should people seem to believe anything! I have a bomb inside me and this alarm means its about to go off unless you upgrade me to first class!
mentioning the word bomb in a airport will get you shot but if you say i have a device in me that will hack into the pentagon and steal all the data and store it inside of me is even cooler :P
Yeah... I keep forgetting the state of airline security seeing I don't really fly. i wonder if I get to keep my pump when they replace it in 6rys. I am kinda hopingthey get longer lasting batteries by then.
Battery is sealed inside of the pump, a whole new pump will be given to you, unless they decide to disassemble the pump and replace the battery in the operating room, this is sometimes chosen when a patient has a very high autoimmune ejection rate.
as part of every refill procedure me and my doctor test the alarms on the pump. the non critical (single tone every 5 minutes) and the critical (high-low siren style tone continuous)
try going to an airport with your pump, and have your doctor next to you and have him do the critical alarm test. i swear the airport guards will FREAK THE HELL OUT lol.
i plan to do that one of these days. that would be total awesomenes... easilly clear out a whole airport. hah hah
my nurses don't test my alarm with the refill. I remember hearing it and just thinking it was the MRI as someone else was in there after me. The it went off while in a quiet waiting room (lol) and then when driving home.
I usually avoid airports cause i don't want to be prodded but that sounds like fun.
My friend loves teling people my pump is voice activated and you have to get close to the pump and say "activate". most people actually do it! lol
I got mine in June last year. he is going well i have had a couple of increases in med but nothing over the top. My onyl problem is i lost a heap of weight since i got and it sticks out a lot. But that is a nothing price to pay for pain relief.
i had to have emergency 2 revision surgeries cause the back of my wheelchair caused a pressure ulcer that infected the catheter that turned into meningitis.. long story short... one word... lawsuit... end of story.. not against medtronic. against the wheelchair co.
I think after my surgery i named mine f**ker... reason is because it was a pain in the ass... i guess now its one of my little metal friends at this point cause without it id be f*cked
I named mine Wilson after the ball in Castaway - the inanimate object that keeps me sane :) He just had his one year anniversary. I was completely bed ridden with pain before i got this now i can actually do things so in a way he saved my life because the depression with pain and the high dose narcotics were pretty much slowly killing me.
day by day the pump site gets a little better then a little worse then a little better... right now its just teetering around... not really getting better in leaps, yet.
i had to have an exploritry operation a couple years back they cut a 24cm line straight down my stomach and it turned out to be my appedix that was causin the problame, anyway for about 3 weeks after the surgery i couldent laugh cos of the pain but it goes eventully, in the vid u said applying pressure helps the pain i totally agree, pressing a towel aganst my stomach area helped when i laughed
did i mention that according to all of my surgeons... abodominal surgeries are always the worst. chest arm anything else does not yield as much pain from laughing or anything since its not where your diaphragm is... its the diaphragm that causes problems...
i agree my grandad had a triple heart bypass and his lungs litrelly cutopen and vacumed when he coughed he would litrelly colaps on the floor and btw do i know you from somewhare?
i have a grate long term memory but my short term is absoultly shite, eg i get up to go down stairs but when im down there i for get what i was suppost to be doing
soon i am getting a new headrest, new backrest, new butt cushion, totally new electronics system, elevating legrests, and new seatbelt, custom made seatbelt for my baclofen fump :P
i se how that would work still think it wud be cool to c a power chair with neon and a sound system maby even a bubble machine lol would u ever consider doing somthing like that to ur chair?
Hi Alin, the name is Dave andd I"m a neurology resident with the University of Toronto doing a study on movement disorders (such as cerebral palsy, hence how I found your videos) and I was wondering if I could pick your brain. I feel that you could offer a lot of insight. Thanks for your time and if you're interested drop me a line! Dave
neurodoc170 1 month ago
@neurodoc170 feel free to pick my brain
alin0steglinski0 1 month ago
i have a baclfenpump as well i was born with mild cp and when i had it put in in i became very sick from the spinal tap
85funnyguy 1 year ago
@85funnyguy that sucks. i had a headache but no sickness
alin0steglinski0 1 year ago
I am going to have my third baclofen pump put in me on March 15th. The first one had to be replaced after 4 years because the battery was dying. I remember the neurologist telling me, "We don't actually know what will happen if the pump stops working." He mentioned that side effects from sudden baclofen withdrawal are seizures, coma, and death. I have spastic diplegia.
Monkofmagnesia 2 years ago
Is the surgery painful? My 8 year old is getting one. Is having the test FEb 2, 2010.. he also has a gtube. He has static encephalopathy and cannot talk so I only know he's in pain when he cries.. if there is pain, where does it come from? the incision?.. etc.. what about the test.. does that hurt?
angelbaby39180 2 years ago
@angelbaby39180 erm i had my baclofen pump just over 12 months ago and had no trouble post surgery and it didnt hurt too much having the incision,just tender around the stitches, with regard to the test, if you want me to be honest, it was not a very pleasent experience and it may be that this is the worse bit, which i found it to be, but just a little bit of advice, they dosay if you can lie still for a few hours after the trial the side effects arent as bad.
Hope this helps !!
1006fizz 2 years ago
My sisters destroyed hard drive is my nerd paper weight.
I don't mind the idea of surgery for the pump per se because i understand machines just run out/need repair but a longer lasting battery or rechargeable battery. I know our internal mechanics tend to be more uppity and prone to issue compared to the item outside of our body running. I would love someone working on making better shunts, I have a threat of getting one and i see how often people with my condition get revision surgeries
kirafaye 2 years ago
6 years for a pump battery is a long time at this point. I do not foresee a pump with a longer lasting battery right now.
Better shunts, heh, you just mentioned another one of MY inventions that you might see.
what would the shunt be for?
alin0steglinski0 2 years ago
Oh i knew that I was meaning can i keep the old pump after they replace it. Its a cool object to have make an interesting paper weight and conversation piece. I feel like it would be easier just to spend a few days in hospital hooked up to a battery charger each year instead or the surgery and a few days in hospital. You could probably even take the charger home if they had enough. That would be a cool new battery to have in the future to save on operations.
kirafaye 2 years ago
Definitely a true elite medical nerd paperweight! Would look awesome in my room with how much medical stuff I have to begin with! And it would be a good specimen to take apart and put back together to see how it works. :P
I cannot share with you my idea but I am working to develop a pump that will allow the user to keep their pump infinitely.
alin0steglinski0 2 years ago
hmm mine do. what was the alarm cause was it fixed
i dont like airports but god itd be fun to empty the worlds largest airport in 5 minutes and cancel a few hundred flights make companies lose millions of dollars all over one little pump alarm lmao.
thats interesting about your friend... maybe i should tell my friends my pump has camera and voice activation youtube com/watch?v=klZ_xA1zcQw
alin0steglinski0 2 years ago
I am not sure which tone it was but it went three different intervals and was the high-low siren if i were to guess. I knew it might happen but it was still funny.
You totally should people seem to believe anything! I have a bomb inside me and this alarm means its about to go off unless you upgrade me to first class!
kirafaye 2 years ago
mentioning the word bomb in a airport will get you shot but if you say i have a device in me that will hack into the pentagon and steal all the data and store it inside of me is even cooler :P
alin0steglinski0 2 years ago
Yeah... I keep forgetting the state of airline security seeing I don't really fly. i wonder if I get to keep my pump when they replace it in 6rys. I am kinda hopingthey get longer lasting batteries by then.
kirafaye 2 years ago
Battery is sealed inside of the pump, a whole new pump will be given to you, unless they decide to disassemble the pump and replace the battery in the operating room, this is sometimes chosen when a patient has a very high autoimmune ejection rate.
alin0steglinski0 2 years ago
Ouchies - hey have you heard it beep yet? I had an MRI and was getting changed afterwards and was like whats that sound! its so weird to be beeping!
kirafaye 2 years ago
yes. i have but not from MRI.
as part of every refill procedure me and my doctor test the alarms on the pump. the non critical (single tone every 5 minutes) and the critical (high-low siren style tone continuous)
try going to an airport with your pump, and have your doctor next to you and have him do the critical alarm test. i swear the airport guards will FREAK THE HELL OUT lol.
i plan to do that one of these days. that would be total awesomenes... easilly clear out a whole airport. hah hah
alin0steglinski0 2 years ago
my nurses don't test my alarm with the refill. I remember hearing it and just thinking it was the MRI as someone else was in there after me. The it went off while in a quiet waiting room (lol) and then when driving home.
I usually avoid airports cause i don't want to be prodded but that sounds like fun.
My friend loves teling people my pump is voice activated and you have to get close to the pump and say "activate". most people actually do it! lol
kirafaye 2 years ago
I got mine in June last year. he is going well i have had a couple of increases in med but nothing over the top. My onyl problem is i lost a heap of weight since i got and it sticks out a lot. But that is a nothing price to pay for pain relief.
kirafaye 2 years ago
i had to have emergency 2 revision surgeries cause the back of my wheelchair caused a pressure ulcer that infected the catheter that turned into meningitis.. long story short... one word... lawsuit... end of story.. not against medtronic. against the wheelchair co.
alin0steglinski0 2 years ago
I named my pump Wilson!
kirafaye 2 years ago
I think after my surgery i named mine f**ker... reason is because it was a pain in the ass... i guess now its one of my little metal friends at this point cause without it id be f*cked
alin0steglinski0 2 years ago
I named mine Wilson after the ball in Castaway - the inanimate object that keeps me sane :) He just had his one year anniversary. I was completely bed ridden with pain before i got this now i can actually do things so in a way he saved my life because the depression with pain and the high dose narcotics were pretty much slowly killing me.
kirafaye 2 years ago
hmm makes sense here too... i was unable to do much and was using narcs a lot to stop the pain. so yeah thats why i renamed mine :P
got mine august something last year *runs off to look at med record*
alin0steglinski0 2 years ago
No, I was not totally 'grossed out'!! (your words).But do hate to think of you in pain. Much love Julia.x.
roadbikemum 3 years ago
:) *hugs*
alin0steglinski0 3 years ago
*poke* fastBB
Saanax3 3 years ago
not realy trying to say anything but i swear i reconize your yt name
alicwasere 3 years ago
Oh and did i mention doc said it takes up to 4 weeks to heal totally...
alin0steglinski0 3 years ago
ouch! hope you get better soon alin
alicwasere 3 years ago
day by day the pump site gets a little better then a little worse then a little better... right now its just teetering around... not really getting better in leaps, yet.
alin0steglinski0 3 years ago
i had to have an exploritry operation a couple years back they cut a 24cm line straight down my stomach and it turned out to be my appedix that was causin the problame, anyway for about 3 weeks after the surgery i couldent laugh cos of the pain but it goes eventully, in the vid u said applying pressure helps the pain i totally agree, pressing a towel aganst my stomach area helped when i laughed
alicwasere 3 years ago
did i mention that according to all of my surgeons... abodominal surgeries are always the worst. chest arm anything else does not yield as much pain from laughing or anything since its not where your diaphragm is... its the diaphragm that causes problems...
alin0steglinski0 3 years ago
i agree my grandad had a triple heart bypass and his lungs litrelly cutopen and vacumed when he coughed he would litrelly colaps on the floor and btw do i know you from somewhare?
alicwasere 3 years ago
i know it was of the bacfolen site im just saying it hurt when he coughed im shore i reconize your youtube name from somewhare
alicwasere 3 years ago
sorry bout the previous comment i get confused easely
alicwasere 3 years ago
wow 3 in a row.. did the youtube spam filter kick you yet hwhehehehee..
*hugs*
what are you trying to say anyways lol
alin0steglinski0 3 years ago
not yet
alicwasere 3 years ago
i knew it i remember you now
alicwasere 3 years ago
ur amanda's mate aka flaggy i remember you know
alicwasere 3 years ago
yepo... thats who i am :P
Geez about time... your memory kinda stinks doesent it... no problem... mine sucks too :D
anyone esle here have sucky memory..
is it me or are we turning this into a forum.
alin0steglinski0 3 years ago
i have a grate long term memory but my short term is absoultly shite, eg i get up to go down stairs but when im down there i for get what i was suppost to be doing
alicwasere 3 years ago
i sometimes do that but it never involves stairs due to the wheelchair hahah...
alin0steglinski0 3 years ago
power chair lol
alicwasere 3 years ago
lol yeah... i meant powerchair..
just wait till you see all the upgrades on this monster
alin0steglinski0 3 years ago
upgrades on what monster?
alicwasere 3 years ago
my powerchair
alin0steglinski0 3 years ago
what have you added neon and a big super wofer under the seat? lol
alicwasere 3 years ago
soon i am getting a new headrest, new backrest, new butt cushion, totally new electronics system, elevating legrests, and new seatbelt, custom made seatbelt for my baclofen fump :P
alin0steglinski0 3 years ago
sweet as what are straps btw i remember flaggy mentioning them once
alicwasere 3 years ago
atraps are what hold me up in my powerchair. my muscles cant do it so i has a strap that does it... theres a strap that does everything these days
alin0steglinski0 3 years ago
so like a specxal seat belt
alicwasere 3 years ago
put simple uyes.
alin0steglinski0 3 years ago
i se how that would work still think it wud be cool to c a power chair with neon and a sound system maby even a bubble machine lol would u ever consider doing somthing like that to ur chair?
alicwasere 3 years ago
considered. hah, i am PLANNING on adding neon and a soundsystem along with an LCD TV
alin0steglinski0 3 years ago
sweet who needs pimped cars when u got a pimped chair lol that will be worth seing
alicwasere 3 years ago
exactly... too many pimped cars, its getting old. not enough pimped powerchairs...
WE NEEDS MOAR POWERCHAIRS!
alin0steglinski0 3 years ago
i acctully saw a pimped power chair for a disabled pimp it had bubbles a disco ball sound system and gold chains
alicwasere 3 years ago
AWSWWOME!
That is AWSOM!
1992peter 3 years ago