¤ i need everyone's help please ¤

melliska · 10-10-2001, 02:49 PM

hi everybody, the reason for my post is to ask all of you for some help and advice.

last night a 16 year old buy from my small town in iowa was in a car accident and broke his neck. it was a pretty bad accident and one of the other 16 year old guys in the car died.

the first boy broke his neck at c5 and can't feel anything from the chest down and can only shrug his shoulders so far. he was taken to another small-ish town around here because of the accident's location and i'm not sure if he received methylprednisolone. (ever since my accident it is standard to give sci's methylprednisolone here, but i'm not sure how many injuries the other town has seen)

now he's in mason city in critical care (i was transferred there too) and is hopefully being taken care of by my awesome neurosurgeon. i called to speak with his family, but he's not in a regular room yet and i couldn't reach his family because they haven't been in the waiting room when i've called.

my question to all of you is...what in regards to treatment, rehab, clinical trials, etc. should i pass on to his family? my family was pretty lost when i got hurt so i'd like to help his family out if i can. since my injury i've tried to get in touch with everyone else around here that has been hurt, but i haven't been able to talk to anyone's family this soon after injury so i'd like to have all the information i can for them.

thanks everybody, melissa

Life is a lesson you learn when you're through.

Scorpion · 10-10-2001, 03:13 PM

Melissa,

I'd try and be cautious about giving he and his family 'information overload.' They're likely overwhelmed as it is, but you're right that getting some info from someone who's 'been there' would help. You might give them info on the very informative SPINAL NETWORK book, this site and New Mobility, and any local SCI groups or info on the NSCIA. When I would visit rehab and talk to 'new injuries' I always tried to be upbeat, showing them life isn't over after SCI and also encouraging them to find out everything they can about SCI and their body in particular. I'd tell them to never give up hope and not accept everything they hear from docs/therapists/nurses at face value but research for themselves and ask other people with SCI. I'd try and give them hope that they may get more return than docs predict but even if they don't they can still go on. Nowdays more than then, I'd tell them exciting things are on the horizon in SCI rrsearch and they should take care of their bodies in case that cure comes sooner than later. Be frank. Honesty is important as you want them to have hope, but not false hope. By false hope I mean, you don't want somebody exprcting to walk out of the hospital but you don't want them thinking that's impossible either. Prepare for the worst, hope for the best, I say.

Does that help?

As for the MP, it may be too late to be effective if it wasn't already administered, but I could be wrong. Dr. Young? I was lucky I got MP back in 1990...not many hospitals used it and I even had a doctor tell me in rehab that my sensation return was a fluke that had nothing to do with MP. I think the stats since 1990 contradict that sentiment.

~Rus

"Because you're not promised tomorrow." ~ Stuck Mojo

SCI-Nurse · 10-10-2001, 05:24 PM

See my response on your duplicate post on one of the other CARE/CURE forums.

(KLD)

jjs · 10-11-2001, 05:58 AM

How about telling them about some of the obtions out there that doctors don't tell you about. (i.e. Sygen) You never find out about these things until you are out of the acute stages and then sometimes it is too late. I wish someone would have informed us about Sygen, we would have tried it and who knows where we would be today.

SCI-Nurse · 10-11-2001, 08:20 AM

According to the most recent information I have, Sygen is no longer available in the USA. Previous reports of the research studies with it indicated that it increased the rate, but not the extent of return, and it has some pretty scary potential side effects (including Guillan-Barre Syndrome and liver damage). Perhaps Dr. Young can add more to this.

(KLD)

gpbullock · 10-11-2001, 10:04 AM

What about the proneuron macrophage trials in Isreal? I'm sure it's sketchy going over there during all of the terrorist threats but the others went while the danger was still present, and have had some success.

melliska · 10-11-2001, 03:54 PM

thanks rus, kld (i already read your other post), jjs, and gpbullock. more great information and ideas. i'm trying not to overload the family yet so i hope i give them the right information. i did get to ask what the doctor had told them and he didn't get the "he'll be like he is after 72 hours" thing, but i did explain to his mom that it really is too soon to know how he'll end up. case in point, i regained sensation throughout my whole body 2 weeks post injury. (probably kind of like you, rus) i'll give them info about the trials too, gpbullock. i only wish i had been given an option like that.

when i talked to keith's mom today i told her i'd get all this information together for her. i asked her if she could get on the net but she says she's going to be at the hospital with him for the next couple days and probably won't be able to get online soon.

she told me that they want to ship him off to rehab in about a week. i think she's still in shock. she asked me where i went and she said they had already told mentioned that place. i have a feeling they haven't given her too many options though. (especially since they only gave my parents 2 or 3 and not even the one i ended up going to in minneapolis) i hope i can get the info to her sometime this weekend, if not sooner. i don't know if i'll be able to make it there myself though. thanks again, melissa

ps...(can you ps a post...i'm not sure) i found out that he's the lil brother of a buddy of mine i used to work with

Life is a lesson you learn when you're through.

anniemes · 10-12-2001, 06:37 AM

Tell them to go to Shepherd Center in Atlanta. Their excellent!!

melliska · 10-12-2001, 05:12 PM

spinalnurse, can you please read the duplicate of this thread in the cure forum and answer my questions. thank you so much, melissa

Life is a lesson you learn when you're through.

SCI-Nurse · 10-12-2001, 06:04 PM

http://carecure.org/forum/showthread.php?t=14274

(KLD)

10-10-2001, 02:49 PM	#1
melliska Senior Member Join Date: Jul 2001 Location: Iowa Posts: 283	¤ i need everyone's help please ¤ hi everybody, the reason for my post is to ask all of you for some help and advice. last night a 16 year old buy from my small town in iowa was in a car accident and broke his neck. it was a pretty bad accident and one of the other 16 year old guys in the car died. the first boy broke his neck at c5 and can't feel anything from the chest down and can only shrug his shoulders so far. he was taken to another small-ish town around here because of the accident's location and i'm not sure if he received methylprednisolone. (ever since my accident it is standard to give sci's methylprednisolone here, but i'm not sure how many injuries the other town has seen) now he's in mason city in critical care (i was transferred there too) and is hopefully being taken care of by my awesome neurosurgeon. i called to speak with his family, but he's not in a regular room yet and i couldn't reach his family because they haven't been in the waiting room when i've called. my question to all of you is...what in regards to treatment, rehab, clinical trials, etc. should i pass on to his family? my family was pretty lost when i got hurt so i'd like to help his family out if i can. since my injury i've tried to get in touch with everyone else around here that has been hurt, but i haven't been able to talk to anyone's family this soon after injury so i'd like to have all the information i can for them. thanks everybody, melissa Life is a lesson you learn when you're through.

10-10-2001, 05:24 PM	#3
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,348	Duplicate See my response on your duplicate post on one of the other CARE/CURE forums. (KLD)

10-11-2001, 08:20 AM	#5
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,348	Sygen According to the most recent information I have, Sygen is no longer available in the USA. Previous reports of the research studies with it indicated that it increased the rate, but not the extent of return, and it has some pretty scary potential side effects (including Guillan-Barre Syndrome and liver damage). Perhaps Dr. Young can add more to this. (KLD)

10-11-2001, 03:54 PM	#7
melliska Senior Member Join Date: Jul 2001 Location: Iowa Posts: 283	thanks a lot guys thanks rus, kld (i already read your other post), jjs, and gpbullock. more great information and ideas. i'm trying not to overload the family yet so i hope i give them the right information. i did get to ask what the doctor had told them and he didn't get the "he'll be like he is after 72 hours" thing, but i did explain to his mom that it really is too soon to know how he'll end up. case in point, i regained sensation throughout my whole body 2 weeks post injury. (probably kind of like you, rus) i'll give them info about the trials too, gpbullock. i only wish i had been given an option like that. when i talked to keith's mom today i told her i'd get all this information together for her. i asked her if she could get on the net but she says she's going to be at the hospital with him for the next couple days and probably won't be able to get online soon. she told me that they want to ship him off to rehab in about a week. i think she's still in shock. she asked me where i went and she said they had already told mentioned that place. i have a feeling they haven't given her too many options though. (especially since they only gave my parents 2 or 3 and not even the one i ended up going to in minneapolis) i hope i can get the info to her sometime this weekend, if not sooner. i don't know if i'll be able to make it there myself though. thanks again, melissa ps...(can you ps a post...i'm not sure) i found out that he's the lil brother of a buddy of mine i used to work with Life is a lesson you learn when you're through.

10-12-2001, 06:37 AM	#8
anniemes Junior Member Join Date: Sep 2001 Posts: 6	New Injury Tell them to go to Shepherd Center in Atlanta. Their excellent!!

10-10-2001, 03:13 PM	#2
Scorpion Senior Member Join Date: Jul 2001 Location: Colorado Posts: 5,604	Melissa, I'd try and be cautious about giving he and his family 'information overload.' They're likely overwhelmed as it is, but you're right that getting some info from someone who's 'been there' would help. You might give them info on the very informative SPINAL NETWORK book, this site and New Mobility, and any local SCI groups or info on the NSCIA. When I would visit rehab and talk to 'new injuries' I always tried to be upbeat, showing them life isn't over after SCI and also encouraging them to find out everything they can about SCI and their body in particular. I'd tell them to never give up hope and not accept everything they hear from docs/therapists/nurses at face value but research for themselves and ask other people with SCI. I'd try and give them hope that they may get more return than docs predict but even if they don't they can still go on. Nowdays more than then, I'd tell them exciting things are on the horizon in SCI rrsearch and they should take care of their bodies in case that cure comes sooner than later. Be frank. Honesty is important as you want them to have hope, but not false hope. By false hope I mean, you don't want somebody exprcting to walk out of the hospital but you don't want them thinking that's impossible either. Prepare for the worst, hope for the best, I say. Does that help? As for the MP, it may be too late to be effective if it wasn't already administered, but I could be wrong. Dr. Young? I was lucky I got MP back in 1990...not many hospitals used it and I even had a doctor tell me in rehab that my sensation return was a fluke that had nothing to do with MP. I think the stats since 1990 contradict that sentiment. ~Rus "Because you're not promised tomorrow." ~ Stuck Mojo

10-11-2001, 05:58 AM	#4
jjs Senior Member Join Date: Aug 2001 Posts: 121	How about telling them about some of the obtions out there that doctors don't tell you about. (i.e. Sygen) You never find out about these things until you are out of the acute stages and then sometimes it is too late. I wish someone would have informed us about Sygen, we would have tried it and who knows where we would be today.

10-11-2001, 10:04 AM	#6
gpbullock Senior Member Join Date: Jul 2001 Location: Ridgecrest,CA.USA Posts: 1,537	What about the proneuron macrophage trials in Isreal? I'm sure it's sketchy going over there during all of the terrorist threats but the others went while the danger was still present, and have had some success.

10-12-2001, 05:12 PM	#9
melliska Senior Member Join Date: Jul 2001 Location: Iowa Posts: 283	spinalnurse, can you please read the duplicate of this thread in the cure forum and answer my questions. thank you so much, melissa Life is a lesson you learn when you're through.

10-12-2001, 06:04 PM	#10
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,348	Done http://carecure.org/forum/showthread.php?t=14274 (KLD)

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