32 replies to this topic

[Jasmina86]

Hey guys,

i have posted a bulletin before but no body has even bothered to reply.
I am doing stem cell research and i really need valuable information about who the best doctor is to help with Paraplegics?

This is not only to benefit me, but it would benefit yous also. My boss is willing to pay alot of money to help support this kind of research.

[Kev-O]

Jasmina86, on Sep 27 2007, 02:25 AM, said:

Hey guys,

i have posted a bulletin before but no body has even bothered to reply.
I am doing stem cell research and i really need valuable information about who the best doctor is to help with Paraplegics?

This is not only to benefit me, but it would benefit yous also. My boss is willing to pay alot of money to help support this kind of research.

Ask what you need i will try an reply if i can help.

[Jasmina86]

Well my boss has a frend who is a paraplegic. And they recently went on a trip overseas together and it hurt him so much to see how much his frend was sturggling. My job is to find out what kind of surgery he can have done, what the best surgery is? what are the chances of recovery etc? and how much it would cost?

[Kev-O]

Jasmina86, on Sep 27 2007, 02:49 AM, said:

Well my boss has a frend who is a paraplegic. And they recently went on a trip overseas together and it hurt him so much to see how much his frend was sturggling. My job is to find out what kind of surgery he can have done, what the best surgery is? what are the chances of recovery etc? and how much it would cost?

The only thing i know of is Stem Cell's. I know they do that kind of surgery in India an China. I dont know the cost. I have read Dr's in both places like doing that kind of work on Americans becouse it shows America how advanced those countrys are. I will try an find that artical

[Jasmina86]

Thank you so much, i really appreciate it.
I felt like for a wile that no body was answering me becoz i cant relate to them
as for the american testing, im in Australia, so do you think that would be an issue?
Ive read majority of the bulletins posted here, i never knew the kind of pain yous go through, i must say yous have my deepest sympathy.
I will do anything that i can to help you guys, the way i see it is:

If there is a way thats guaranteed to atleast give Paraplegics and Quadraplegics a little bit of hope or a little bit of movement and/or feeling then i think the Government should be paying for the patients to get treated rather than having to save up thousdands of dollars and paying for treatments and surgeries yourself. I will fight for this. i think it is not fair.

Regards,

Jasmina

[barber1]

Jasmina86, on Sep 26 2007, 10:08 PM, said:

Thank you so much, i really appreciate it.
I felt like for a wile that no body was answering me becoz i cant relate to them
as for the american testing, im in Australia, so do you think that would be an issue?
Ive read majority of the bulletins posted here, i never knew the kind of pain yous go through, i must say yous have my deepest sympathy.
I will do anything that i can to help you guys, the way i see it is:

If there is a way thats guaranteed to atleast give Paraplegics and Quadraplegics a little bit of hope or a little bit of movement and/or feeling then i think the Government should be paying for the patients to get treated rather than having to save up thousdands of dollars and paying for treatments and surgeries yourself. I will fight for this. i think it is not fair.

Regards,

Jasmina

That's the spirit!!

[Ches]

Jasmina you never left out because your different! HAHA That would be way to hypocritical of all of us. Afterall what most of us want is to NOT BE NOTICED as different.
So lady, I have this neighbor lady. I dont know her exact story, but I do know she was diagnosed a complete Para. She never had ANYTHING below the injury. She actually started some fund raiser, got the cash, and headed to Australia for surgery. Stem Cell implants from what I understand. She's back., and all she got was some tingling sensation in her legs. Which is more than she had. She's happy, but I think its silly.

Just b/c your boss is potentionally going to pay big money to get this guy better, doesnt mean you need to go out and spend it all on one treatment that may or may not work.

There all kinds of 'solutions' out there. Unfortunately none of them work for everyone. This guy needs to be doing the research himself, finding out whats good for his current condition. Whats safe, what he's capable of, and what he's comfortable with. Is your boss planning on surprising the guy with some surgical consultation? Sounds like it, and that doesnt sound like such a great idea.

Edited by Ches, 30 September 2007 - 09:15 AM.

[Jasmina86]

thanx Ches for giving me some more info on what i need to find out.
the intent is not to surprise him, he is quite aware of what we are trying to do.
my boss is on another trip at the moment so i am unable to get in contact with him, but i do have his friends email address whcih i might email and find out some more info.

so not everyone gets an effect after operation? i have done so much research tryiong to find out what the success rate whith stem cell implants and i could not find one negative thing. majority of the sites lead me to another site explaining how much of a miracle it was after the surgery etc etc...

what they are not putting on there is the people that dont have any success after surgery.

so this type of surgery, stem cell implants is quite risky? dangerous even?

mmm... ive been on yellow pages trying to find doctors that i can speak to, but i cannot find any contact details. is there a particular site i need to visit with the doctors numbers?

once again, thank you muchly

Jasmina

[darrel]

Jasmina,
I would have to agree with Ches, there are no mirical cures, you will all ways have your snake oil remadies, but we have to face reality. we are what we are, and we live with it each and every day some may be worse than others but it is all the same.
if you would like to find out more info on stem cell research check out "care cure community" they discuss it alot and there are mixed views on the subject over there also.

[Ches]

Jasmina, No need to thank, Im always happy to help. Unfortuntaley Im not the best to advise you in the stem cell direction. I too have read lots of success stories and its easy to get blinded by faith after reading some of the stories, and yes your right, they dont publish the lack of recovery nearly as often as the glam stories. This website is a great place to do your Stem cell homework. A few people on here have undergone the surgery themselves. In fact there is a current post about one ladies progress.
Here's the thing with stem cell Jas, (simply put) They are implanted in areas where the nerve has been damaged in hopes of regenerating, bridging, or forming into whatever means necessary to 'fix' you. The reason for the surgery is based on the fact that the Spinal Cord isnt capable of repairing those brokens nerves on its own. Or, so science says. There has been miracle case after case of the body rewiring itself without any surgeries. Because the spinal cord hasnt been fully understood to date, its hard for profressional to decipher if the implants are helping or if the body was going to do it anyways. The other problem with "finding a cure" is that no 1 cure will work for everyone.. which again stumps the professionals. Its much to complicated in there. Its amazing and frustrating all in one. I wish I could be of more help.
I dont think the surgery is necessarily dangerous. I mean Im sure the doctors could totally mess up and leave your friend with a higher injury that he started with. Or turn an Imcomplete into a Complete, that hasnt been the case very often. Luckily how to cause a SCI is understood, so they avoid that. Too bad they cant figure out how to reverse it. The surgies arent so much dangerous to your current condition as they are to your health and mentality. If the guys goes thru with it, and ends up with nothing to show his head is definitly going to mess with him. I hear its like gettin the injury and coping all over again. On top of that, he will be in bed while he recovers. Which will only give him more time to think about things.
All in All, I would really seek other forms of therapy before jumping into the surgery bit. Its just as useful as all the other therapies have proven to be, but its a lot more pain, money and time.
I have to admit the idea of stem cell sounds glamorous, but I'd rather spend the 20-30 grand on therapy at RIM or Project Walk. At least those guys dont offer false hope and when its all said and done, whether you regain mobility or not, you have indeed learned more skills to help you in life, gotten stronger, and met some terrific people who actually care about you. Not just making a medical breakthru and winning the NPP.
I dont have any great links to send you too, for consulting doctors about the surgery. I could give you the email to the head of SCI, in and outpatient programs at Parkland Memorial..which is affliated with Southwestern Medical University. Those guys do some mega research, and are always happy to help. Or you could go straight to the source and contact some doctors who actually perform the surgery. You arent going to find them in the yellow pages though, Unless you live in China, India, Portugal, Australia.. and a few other places I cant remember of the top of my head.

[Jasmina86]

Well good morning all,

I would have to say i am learning quite alot from these forums, i am really happy i found it.
not to mention, there are some hotties on here hehe a great way to pik up mayb? just kidding

With those exercise camps as you were saying, im thinking of looking that up and giving the gentleman that alternative option, which to me sounds like it would be a better option.

i really hate surgery, i remember getting operated on twice and its not very pleasant. I would think that activities with the body parts that are not 100% functioning the best thing would be to use mayb bike machine like things, so you are working and strengthening, thats just what i think, but i dont know.

i would really appreciate it if you could forward me the email?

so i know this is a personal question, and i dont wanna seem rude to ask, but what is it like? are you still happy? do people look at you differently?

you cannot be born with paraplegia?

i know a frend of a frend that got paralysed from the waist down after a motorbike stunt accident, and i tried to help him out but he shuts me out, and is quite sour towards me.
i dont know wether its because of the accident, but he doesnt seem to treat anyone else liek that but me, and im trying you know. i just feel like mayb hes pushing me away coz he thinks im giving him sympathy, which im not really, i just think im kind hearted and i wanna help, which can often be misinterpreted.

[Ches]

A friend of a friend..?

Did you even know this guy before the accident? How are you trying to help him out? Lets see, if I was him and some random person wanted to come over and help me out, for no reason and no real purpose.. other than to chat.. and help? I'd say no as well. I would have said no before the accident. Maybe I'm way off here..

As for the emails. I will definitly email them to you.

Yeah u can be born paraplegic..However, Paraplegic is merely an impairment of 2 limps....not a disease. Its the effect, not the cause.

"so i know this is a personal question, and i dont wanna seem rude to ask, but what is it like? are you still happy? do people look at you differently? "

If you wanna know whats its like.. strap up your legs, dont use them, and tote your ass around in a chair for a week or two..thats as close as you'll come to knowing. until its you, you'll never know whats its like.. and it cant be explained because describing something this personal requires interpretation.. that of which, is left up to ones own imaginaton.. so understandably you will never be able to full understand.

Still happy? Sure. What makes me happy has changed, and what I lingered over before its so pointless now. Life is more valuable, even when I feel like a waste. Things that make me happy, are important to me, not what I need to be happy.

You can "See me differently" if you didnt know me before. I guess the WC is obvious and people look., but you cant always tell if people are looking at you and the chair. As for the people that know me, No one gives a shit about my handicap except me. Im not one to cry and carry on tho. If anything my friends want me around so they can throw me out of my chair and play in it!

[Lucydog]

There is NO CURE ok? If there was, Christopher Reeve would be alive and ice skating. There might be a cure, but I prefer the phrase 'effective treatment'.

If youve got money to spend then get this guy some decent kit. Like top spec chair/vehicle or Id love someone to buy me a stander.... in my dreams. have you bothered to ask.

Personally I dont quite understand this thread.... call me suspicious but Im not sure whats going on here? Fingers burnt a few times I suppose!!!

[Ches]

What dont you understand? There is no mask here. How can you be suspicious? Even if Jasmina was a fraud searching for answers here, what harm is this topic, in paticular really going to cause? That doesnt make sense. Are you suspicious or just negative?

The idea about buying him expensive peices of equipment isnt a bad idea at all. If thats what he wants.

Edited by Ches, 08 October 2007 - 11:45 AM.

[Lucydog]

Ches, on Oct 8 2007, 12:44 PM, said:

What dont you understand? There is no mask here. How can you be suspicious? Even if Jasmina was a fraud searching for answers here, what harm is this topic, in paticular really going to cause? That doesnt make sense. Are you suspicious or just negative?

Many things I may be, negative isnt one of them. I dont think anyone would ever say Im that. Ok so Im stupid perhaps, but this seems such an odd thread, you will find that time makes us all a lot more cautious Ches.

[cdngrl]

i'm with lucydog on this one although your points are still very valuable chess i find these questions from jasmania86 somewhat odd. i feel like i'm writing/doing his highschool homework. - just my take

[darrel]

lady's, lady's, lady's
we know that there is no cure out there, and there will not be one in our lifetime, but I would like to see one in the future for our grandchildrens kids. this is what all this research is for, look at how many years it took to discover and safely produce penicillin to cure the plague. It will take time and alot of research.
as far as the way this topic started, yes it was a shitty way, but the person got what they wanted: answers and to cause turmoil, the goal was acheived or may be it is that we do not discuse this issue and the wanted input to see how much we really know about it. I have to admit I don't know "jack" about it, that is why I let those that are doing the research do it and I stay out of it. if only these ppl that do the protesting would understand why the need for this kind of research is nessasary.

Edited by darrel, 08 October 2007 - 03:03 PM.

[Jasmina86]

Thanx Ches. I appreciate you giving me some more info. obviously some other people have taken offence and are calling me a phony, a male even, dont you know... Jasmina is a gurls name. (that wasnt aimed at you Ches)

as for the friend of a friend, i met him before the accident, i had a small crush on him and we became frends, so its not like i didnt know him, i just say frend of a frend rather than now my frend, out of respect for my frend who introduced us.

Just to clear things up, this is not research or homework for Uni, i dont go to uni. And for yous who are poking at me, you dont know me or my intentions, so unless you have got something positive to say, dont say anything and stop waisting my time so i dont have to read your petty, Inappropriate comments.

I have simply been given a task from my employer to find out information, treatments, cures...i came on this site not knowing anything, in hope that i gather some information to be able to help my employers close frend who is a paraplegic. I have been told that if there is anything that guarantees improvement, not a miracle, then he is willing to pay and donating money for research.

Dont be a hater, and dont be so negative towards me when you dont know my intentions, which are not bad at all. Just because you are sour do not make it out like im your enemy.

anyways Ches, that was nto aimed at you, you have been a fantastic help and i really hope we can keep in contact. ill give you my email address if you would like to hit me an email or i have myspace. jasmina86@hotmail.com

i really hope that you can continue heling me out with this research, i found your last bit of info really helped me with the Project Walk website. i was able to have a read through the site and i really think mayb this would be an excellent choice for him.

Regards,

Jasmina

[darrel]

no coment

Edited by darrel, 09 October 2007 - 03:22 AM.

[Jasmina86]

Hey Darrel,

my deepest apologies, this is not aimed at you.

Regards,

Jasmina

[Ches]

Jasmina..
7 months ago I was just like. I had no idea what "paraplegic or quadraplegic" really entailed. If someone I knew was hurt I would have done what you are you doing. You can do all the textbook research you would like on the subject but unfortunately you wont find anything near as helpful as apparelyzed has been for both you and I . I joined the website back in July I think.. With Question similiar to yours, the only difference was that I was injuried. SO I guess they were more accepting of me.

If you were doing homework, well at least you are interactiving and gettin involved. More than I can say for some SCI's.

Either way, I would love to hear about your friends progress, whatever treatment he may decide on. Please keep me informed. Im sure there are others on here who like to know as well.

Best of luck to him and you both. I will continue to help you in any way I can.

[Jasmina86]

Hey Ches,

i will copy and paste the email that i received from him describing his condition:

{I am a T12 Li paraplegic

I broke my back in June 2001

For 14 months I was a complete paraplegic as in no movement or sensation from the break down I have a complete dislocation and fracture of the spine.

Then after 14 months I felt some sensation an over the years have regained full bladder sensation.

Partial bowel sensation.

Three quarter sexual function, no I am not dropping hints just giving you relevant information.

I have a return of muscle movement in my Quads and one side of my backside I have return of Maximus gluteus I think it’s called- bum muscle, sounds like a roman general, partial on the other- and movement in both legs.

From inquiries with neuro surgeons it’s a miracle as I had a severed spinal cord –somehow nerve endings have regrown and rematched.

I have had some dealing with spinal cure –and am aware of project walk

However its still a big grey area, could it be physio or positive thinking that creates re growth, not sure.}

Well there you have it...
i hope thats enough information for me to study on, the only thing is that i have no idea what most of it mean

[Ches]

Well Jasmina..
The break down of his current condition is simply. The guy has miraculously regrown nerves that were once damaged. Or the nerves have re routed themselves. Either way.. he is definitly a lucky one. Stem cell transplant is not what he needs. He is at risk of losing what returns he has had in a procedure like that. Some physical therapy would be pretty benefical to him. He needs to strengthen the muscle return he has gotten, and remind those other muscles how to function. The guy is exactly the kind of person they like to see at Project Walk or RIM. A good attitude and an imcomplete injury usually results in the best results. ya know.
So why isnt he signed up on apparelyzed? 14 months after the injury and the guy is still in the gray? He needs to get involved with his own injury, and not just leave it up to you and your boss. Thats a bit annoying if you ask me.
Sorry Im slacking on sending those links for you.. Im gettin to it I swear

[Jasmina86]

Ches,

so stem cell transplant could have a reverse effect? how is this so?

[Ches]

Blah, I dont know. Im no doctor. The procedure would be just as dangerous any other surgery performed on the spinal cord, I would think. If he's having returns why let the doctors go in there with all their sharp tools and poke around. I wouldnt risk it. Its not like they are going to be able to pinpoint the exact nerves that are functioning and absoltelu avoid them. They are good, but not that good. I just wouldnt trust it.

[LuckyinKentucky]

I agree with ches Stem cell is not the right option since he is seeing return... at least not untill the docs have a little better understanding of it. If a doctor tells you theres no chance of losing function or sensation than he's a quack! Doctor's often have an overinflated idea of their own abilities, maybe this is that God complex thing.

If this guy is interested in rebuilding what he has regained than that is probably the greatest step that he could take to further recovery. This means INTENSINVE therapy and physical training (brace walking, pool therapy, etc.) that is if it's what he wants, as this requires a great deal of dedication. It all boils down to it being a decision of the one affected.

Oh yea, in this field there are NO guarantees!

[Murray]

Hello, Jasmina, and - although I, too, am relatively new to this site - welcome:

I'm getting in here late, so I'm requesting being brought up to speed.

1. Is your friend in a medically-directed physical therapy regimen?
2. If yes, where, and does the facility have an outstanding track record?
3. If no, why not?
4. Is your friend seeing a neurologist and/or physiatrist regularly?
5. Is your friend actively seeking treatment (traditional, other) to continue improving?
6. If yes, does he expect a specific result to be achieved?
7. What is that result?
8. If stem cell transpantation is being considered as a means to his chosen end, has he researched procedures being performed in India, elsewhere?

Best wishes.

Lynn

[Ches]

I think what Murray really wants to know is.. Is your friend single?



HAHA Kidding..



God, Im funny

[Murray]

"I think what Murray really wants to know is.. Is your friend single?" -Ches



OK. So I forgot to ask.... (I'm gonna whoop yer ass, Ches!) By the way, I'm kidding, too.

Edited by Murray, 14 October 2007 - 04:18 PM.

[Ches]

HAHAAHHAHAAHA... Bring it!