Why is it whenever someone joins any sci forum and posts they went for treatment at xyz and they've had some positive results so far, disappear off the face of the planet after a few posts, and never to be seen again.

I dont know how many times i've read a promising outcome from someone and have wanted to ask a simple question only to find the person is gone or they dont want to share...

i mean if I went for treatment somewhere and i had positive gains i'd be blasting it all over the forums if it means helping someone get over this injury... but nup.... its always the same story... "hi i went here so far this has happend" and thats the last we hear from them

Ive noticed the same thing.

Now that you mention it, I see what you mean. I hadn't made the connection before. I guess a big part of that is just the usual forum love affair: people find the forum, have a big rush of posting, and then just drop off because they don't actually have time for the forum. That they happen to be someone who's seen some progress is maybe unrelated, or maybe related: could the rehab and physio be what's keeping them busy?

Or perhaps they have a relapse and are depressed: when I was re-injured in 2008, I found it very difficult to come back on here afterward. I didn't want to hear or read anything about SCIs, wheelchairs or anything of the sort. I still haven't gone back onto the other forum I was a member of.

There could also be an element of survivor's guilt. If someone gets a lot better, maybe they come to feel like they shouldn't be around, because they feel bad that other people didn't get better. Like that feeling you get when you do really well in an exam, and your best friend, who studied just as hard if not harder, fails... mixed feelings.

There's also an element of not wanting to be reminded of the bad times possibly... I mean if someone made so much progress that they didn't feel like they were particularly disabled anymore.

You're right of course, it's a terrible shame to have someone post about progress and then not post about further results, because it's the kind of information that people who are early in their SCI life really need: realistic and personal reports of progress, lack of progress, and so on.

Bevan-L

Here's some info that might help you about the current stem cell research. There's many forums at sci.rutgers.edu and there is valid info on current stem cell research. Checkout the news on stem cell on this forum thread: News about Stem Cell. So far I can tell you is Dr. Young (neuroscientist that started the rat clinical trial of regeneration of the injured spinal cord)at sci.rutgers.org has told me that adult stem cell isn't proven to work for people that have spinal cord injuries b/c the nerves don't show any regeneration when using adult stem cell. It still hasn't been proven that embryonic will work because there isn't any info on research that is currently going on in Calif. with a combination of adult and embryonic stem cell, and Calif is the only state that was given permission to use embryonic stem cell in a research on 8 people that were recently injured and classified as complete. Dr. Young is trying to get Texas to do clinical trials in Austin, Texas using embryonic stem cell, but nothing has happened so far. We had a lady that had adult stem cell procedure in Costa Rica Dec. 2008 (and was going to go back again in the summer of 2009 for the second step of the procedure, so our local paper said) and she like others don't give any info on what happened after the procedure. My daughter is waiting like others to be accepted in a clinical trial whenever it happens in Austin, Tx. Word of caution watch out for the doctors saying they have a cure for your type of SCI, especially watch out for a person by the name of Don Margolis. He's a crackpot that trys to get people to sign up and they locate places out of the U.S. for clinical trials that cost alot of money and may do only harm. Also checkout and sign up for christopherreeve.org site, also has good info for SCI people. Our daughter was injured in 2007 in a diving accident and is a c5 c6, incomplete, fulltime student at Univ. of Arlington, Tx. Get the word out at stepnow.com (not sure about the url there is a link in one of the forums at sci.rutgers.edu). Goodluck another site to check is roll2walk.org, projectwalk.org sites to help disabled to possibly walk again with some aid of crutches.

I've noticed the same thing you have, Bevan. It makes me afraid that the people who post those things don't really have the experience that they are claiming, but they just want to get on here to tease us. There are some real jerks out there and you can claim anything on the internet, where nobody can really verify it. Maybe I'm just paranoid, but that's how I feel.

everyday i get into this forum with hope but i have to endup with nothing

Good point Bevan , very frustrating...

If it helps any, and I think we've already had this discussion; Most of my returns I contribute (IMO) to intense physical therapy. I'm not walking, still cant twitch my toe to save my life but I swear my internal feelings are pretty much in tact, down to my ankles! I guess it would be considered sensations, every sensation from B&B to a natural urge to stretch and re-adjust is pretty much there. Not 100%, but I dont think many SCI's ever get back the full 100%. Anyways, Chefzapp doesnt post much so I'll speak for him and say he can atest to the same type feelings. 3 yrs of no return, few weeks of intense therapy and he's having sensations he hasnt felt in a while either!

Its not THE CURE, but I'll never stop believing its the most affective (or is it 'effective'?)natural cure there is.

I could post for hours about my progress but its all small things, that have slowly kinda 'faded' back, it would take hours. Plus I'm still not finished pushing my limits!

Also, there have been cases of people posting as recipients of stem cells, and other new therapies, only for me to find out, that they have a vested interest in the companies involved, hence the lack of followup.

In addition, because a lot of the people posting go to unregulated countries for therapy, it's difficult to tell what they are actually receiving, and if any other procedures are also being carried out at the same time.

It's difficult to tell if the improvement was due to intense physiotherapy, natural recovery, additional procedures such as a laminectomy, or the stem cell therapy.

For the posts saying "I'm off to Russia/China/etc", after paying out thousands of dollars/pounds for a procedure, if it doesn't work, it's difficult to accept, never mind report back on the failure of the therapy.

Simon.

If they even make it back.

I think Ches NAILED it.-lol

But Yah. Out of embarassment, they're not gonna come back here and say, "Man, I just spent $20,000 for this new treatment in India, only to find out the surgery was performed on the back of an Elephant."

yeah I've begun to wonder if its either ppl that have a vested interest in the companies and probably don't even have a sci.... or ppl just lie about it because they've been scammed. but then even if that was the case just say they got scammed! why lie and have others believe them and go to the same place and lose their money as well??? its not like they're even known in real life to other ppl on the forum so why fear that ppl are gonna see them in the street and point and laugh at them???

it also doesn't help the fact more and more dodgy places seem to open.

Can I just say I'm not knocking stem cell treatments etc... I'm just as interested and would go for it but i refuse to now because I've yet to find an actual person who's had it and can actually give the facts. till then I'll just have to do whatever it takes to keep the rest of my body below my injury in good health.

Don't ask me, I left six months ago. Made millions on the dri-sleeper though! Yes, like anything - don't take anything on the internet as gospel (my chat site alter ego is a 16 year old blonde nymphomaniac bimbo lifeguard from Southern California) and make sure you do your research.

There is a lot to be made from medicine, even more by quackery because by the time we are so desperate to visit the quacks and sheisters, reason and logic usually go out the window - followed by bucket loads of cash. Remember the old adage - if it sounds too good to be true - it probably is!

I have found the best format to help is by educating yourself about your injury. You and only you can dictate the path you travel and how it's done. There are many products around the world. Question surrounds the mechanics that go with the solutions. Yeah everyone's body may be different and the process for recovery is different. But, there must be some kind of format that lies beneath the complexities. Around the world emotions are felt and expressed, ranging from happiness, sadness, and so forth. But can all these things be reduced to more simple causes and themes for reasons of expression? Your car doesn't start but there's still juice in the battery. To get it started you get a jump start and off you drive. Does the body react similarly regarding SCI?

This guy is starting to really annoy me... He's preaching to the "less strong" or "less informed" among us. It's called preying - like wild animals do in the wild.

There are plenty on this forum who are desperately searching for their miracle cure, and will fall victim to this twat! And he's being "let loose" to prey amongst the little lambs...

DaveP how so am I preying? By telling of what i know and think. I'm "preaching" to the less informed? Wow, you are really being annoyed by my writings as are possibly others. Want an answer to the problem? Don't/Stop reading what I wrote unless I have this uncanny mind control over you that forces you to read my writings which I doubt. Here's what slander my writings as much as you'd like but where does it get you in life? Does it make you feel better? I should have died/come close to death over 3 times already, so what you say/think should or will it affect me? NOPE. Enjoy your day.

McCann,, I appreciate your efforts to tell others about your recovery,,, many here are following similar paths and will benifit from your experiences.

We are already aware of the equipment and the therapy you have used,,, at least the ones who bothered to check out the links provided by others, here. We also know how much attitude has to do with helping the healing.

Whar, I think, many might be interested in, would be your feelings along the way,,, how you handled setbacks,,, how and who were you helped along the way,,, maybe even a little about your plans for the future.

You will find that there aren't too many here, who don't have as strong a will as you, and as much determination. What we lack is belief in man made miracles.

Hard work,, faith,, determination,, won't do it for most here,,, if it would, most of us would be walking already. Give us all the benifit of the doubt,,,, we are smarter than you seem to think.

You will find this forum to be a friendly and welcoming place,,, if you can find a way of expressing yourself that doesn't feel demeaning to the rest of us.

Hope to read more of your posts.
ed

I can understand everyones views on falling victim to false claims.

I've fallen victim to some members who sought my help, as they said they'd just gone through what I'd gone through and they needed my support.

I opened up to them in private with my inner most thoughts and emotions, in the hope it would help them, but I soon discovered they weren't who they said they were and are no longer on the site.

I felt betrayed and hurt; as if I'd been made a fool of.

Now I'm back, I'll rarely answer a Post or PM, which I think too personal or controversial. I certainly wont argue with anyone about a post; I cant see the point. If I don't like the topic I don't look at it.

I only come here for the friendship and support, and hope I can contribute something in return.

Mike

Now when I'm asked questions like that, I do not shy away from or run. Please note that my writings do not intend to have a tone that points fingers at anyone for their lack of will or anything negative or demeaning for on a personal level I know none of you. I think that some people came at me in such an angry and demeaning manner but my responses only contained a positive tone. I don't know where all this talk about the "cure," miracles, etc came from because of those things I never made claims. I never claimed that what worked for me would work for everyone aka "the cure." I notice alot of my writings have been twisted to make me seem as some con-artist or full of "pipe-dreams"/spam. People criticized my writings 'format' etc. I said I was going to post my writings in portions to avoid info overload but I was "attacked" for not getting to the point or telling my story fast enough. I believe that everyone here is here because they have strong will or why else would they be? Why else would one open to absolute strangers? Unless some type of similar theme is shared. I admit I did cut and paste rather excessively but I was being harassed for info and those people wanted info on the microwave or fastfood effect, instant gratification. Either way thank you for the positivity and my setbacks were handled with my circle of help. My parents were there for me daily to ensure complete cleaning, no bed sores, basically along with my fiance they advocated for me and that's how I ended up not getting trached. See you around on here.

I too have felt as though I have been betrayed and stepped into a 'lions' den', but not everyone means ill or harm and those that openly state they do words do not bother me. The craziest aspect is as though I claimed walking to be the answer or end all be all, that I definitely do not. To me, I believe that the body is all connected. My thing is that it would be ok if one day its as though you wake up and start functioning as though nothing is wrong. However, as strong as my legs may be or get, it doesn't matter. I also received a closed-head TBI & DAI (diffused axonal injury). So there were and still are issues with proprioception & equilibrioception. Not to mention my vision was all messed up as an accident result (eye muscles were weakened) and my range of motion for my neck wasnt good. I too am here to learn, give, and get support. The idea of a PM was initially to have better 1 to 1 convos and develop friends. It's not everyone you want to share your life experiences with at the same time. People chastise and make it seem as though I try to be better than anyone when that was never something I attempted to do. Either way, thanks for your reply of positive and respectful manner. Respect is all I request, not agreement. Disagreements can be done respectfully or through ignoring as you stated.

McCann, wither you feel your early writings were not condescending or misleading, many of your responders did, including me. Your early writings gave us little insight into your personal struggles, your actual injuries or who/what helped you recover, other than your four thousand dollar cure.

Your writings are long in nature, short on facts and seemed to be filled with contradictions, platitudes and a rather selfrightious tone. Most of your other posts throughout this sight have much the same tone and length. And most of your questions have either already been addressed via the general SCI related information provide to all on this site, or have been raised and debated by many members in posts throughout the various forums.

It appears to this member that you have not done your homework with regards to SCI. Nor have you taken the time to search through the site for your answers. Given your ability to devote substantial time to your writings, it seems odd that you would not search this site and avail yourself of the knowledge so many indeed share. It seems to me, that you are full of talk and unwilling to look about; arrogant and lazy in my book.

When I see a sales pitch on a peer support sight, I get cold, as I don't like anything shoved down my throat. We're here to share/support, this is not eBay, where four thousand dollars, trust in an item without proof, blurry pictures in your case, and of course a positive attitude, will cure us of our ills.

With that said. The last few posts you've made give us a bit more information about the who, what, when and where of your injury and recovery. And I'm not trying to disparage you from continuing your membership here. Just do yourself and all of us a favor, share a bit more about you, give us some context in which to ponder your questions, thoughts and/or your requests for support.

Share a bit more, care a bit more, do your homework. There seems to be a bit of...well I didn't mean to say that...in your last few posts, we all make mistakes, for now I'll give you that...

I for one love to hear success stories, love to learn if there is anything that can help folks through this SCI life. And anyone that gets out of this mess and walks again, has a reasonably normal life after experiencing the suddenness of SCI, I cheer on. No one needs/wants to be paralyzed and everyone that has experienced it; self, friend, family, etc., needs and should get support, and should do their part also.

I hope we get to know you more. Each of us has a story. And the more we share, the more we care, the stronger we all get.

Best regards,

Jerry

PS. To shed some light on your question regarding the healing properties of the body...Does the body react similarly regarding SCI?...the link below might help your understanding of the complexities of SCI and the bodies response to the trama.

NOGO RECEPTOR YIELDS FRAMEWORK FOR NEURON-REPAIR STUDIES
http://www.als.lbl.gov/als/science/sci_archive/66nogo.html

Thanks but you and others critique my writings as if i'm in school still, whether it be due to length or content. Bottomline is that I have no reason to tell a tall tale. Yeah my pics, some are blurry but the picture quality was the absolute last thing going through my head and my parents (who were dealing with the traumatic incident in their own way). Meanwhile, I scared my loved ones while merging from my coma as I went through all sorts of stages in attempting to speak, to know "simple" things like the year, state I was in, etc.
As for the $4000 "cure," my comment was to notify people that it wasnt an outlandish cost for the device/tool that helped me get where I am today. Nor is it known of on the market because of its recent time frame in production.
Also, for me its not merely about walking again for the sake of doing it. It's because I'm going to have a daughter born(that in itself the Dr. had little to no hope for happening), and I want to not have to worry of physical limitations, like holding her while walking with her, feeding, changing, and the list goes on. I didnt jump onto the site attempting to "sell" anyone anything.
As for being "paralyzed" that is a term that to me is only accurate when one can't advocate/think for themself whether it be verbally, physically, emotionally, or spiritually.
And lastly, I'm not the type to jump onto something because someone with a "title" (Dr, etc) "theorizes" it to be true because to me it seems as if money controls why things are the way they are and are not. Think of the NFL football player who got treated and is doing exceptionally well. He was hypothermia induced which they speculate was what sped his recovery but my hypothermia was natural. He received surgey same day, I didnt for 5 days.
Also thanks for the link I will add it to my research of my diffuse axonal injury and store it. However it doesn't address in enough detail about glial cells or demyelination which I think has much importance and would like to know more that refers to those aspects. But, I'll stop here because its getting lengthy.

McCann,

Excellent, more information...welcome to the group, I look forward to more discourse. BTW, your football reference, is one of the rare cases of a walking SCI after a debilitating hit in the NFL, check it's history, college and high school as well, not many walk away.

Every injury is different, thats the beauty of the human body, its uniqueness, it's also one of many reasons injury and diseases haven't been cured yet.

Question, why did you play the hiding game with us, why not just share the devises name, the companies name, their website, the use/therapy implemented...right up front in your first post...what were you afraid of, I don't understand your need to play games like you did.

The shit hits the fan for all of us when SCI changes our lives, your not alone. I'm glad we found the device you spoke of, maybe it will help someone here.

Be well,

Jerry

You got that right McCann. About a year ago I was conned by a quack who came with the endorsement of my Aunt who had been successfully treated by him for something different. I was under the impression that I would be receiving dietary information for bladder infection prevention. Once I got there and after a dodgy "test" I was told I would have to do more complex treatment which would have either killed me or not worked at all (a cure of sorts in the death from treatment option I suppose). If I hadn't known as much as I do about my body I would probably not have had the confidence to question the treatment. After spending $600 on his treatment and $3000 in total I think now you can see why I am very cautious of and will publicly critique any "cures" or "treatments" I feel are dodgy on any website. I later found the "good doctor" had been struck off the medical register for a year in the country I was visiting.

[quote name='StillFingers' date='Jun 21 2009, 02:42 AM' post='115791']
McCann,

Excellent, more information...welcome to the group, I look forward to more discourse. BTW, your football reference, is one of the rare cases of a walking SCI after a debilitating hit in the NFL, check it's history, college and high school as well, not many walk away.

Every injury is different, thats the beauty of the human body, its uniqueness, it's also one of many reasons injury and diseases haven't been cured yet.

Question, why did you play the hiding game with us, why not just share the devises name, the companies name, their website, the use/therapy implemented...right up front in your first post...what were you afraid of, I don't understand your need to play games like you did.

The shit hits the fan for all of us when SCI changes our lives, your not alone. I'm glad we found the device you spoke of, maybe it will help someone here.

Be well,

Jerry
[/qu

I didn't play any hiding game at all. I simply didn't have all my documents in place yet for this site (pics placed on share site, etc). Even when I did, I posted the visit my sharesite address incorrectly,etc. I also didn't have further time to continue with more info/writings due to poor prioritization on my part for things that I needed to do (of time requirements, I'm overly zealous and my abilities do not match with my desires/realistic time frame). All of this, before being bombarded about my supposed spam-likeness or money hungriness as though I prey on individuals in this site or elsewhere in life, writings length, etc.
I kow my NFL football story is one of few, but only recently has it been known/found in the "medical community" that in paralysis cases there is a great degree of inflammation present around the injury site. And that has proven to be problematic to the patient's recovery. The inflammation causes pressure of the spine along with defusing the signal trying to pass through to the body's parts/extremities. Hence inducing hypothermia helped to "control" the swelling/inflammation. Of that much wasnt spoke of, yet its only been accepted and known for a recently short amt of time.

The thing is, I will not get more technical on this response but will post the more technical aspects in a new thread, so others can view it with greater ease if desired. I'm glad that the device I spoke of has been found by Simon and his readings/search, but that is irrelevant (to me) without the understanding of what, why, and how it works. All that is known is the Who and When it worked (for me). Before anything further could be explained, 'wow' was my first response to the written responses, but I'm glad that some as yourself take the time to exchange thought & info with me.
Look forward to continuing this on the new thread.
Thanks, McCann

Understood, thanks for helping me know/see why your perspective was.

McCaan,

If I remember correctly cooling the spinal cord has been studied for a decade or more, with some studies in the late 90s in various lab's on mice/rats with some positive success. And yes, here in the last 5 years the technique seems to be reaping benefits for human beings.

Again I'll reiterate the importance of the NOGO Receptor, unless I'm missing something, cooling/freezing of the cord to reduce swelling thus reduces sustained contact with the rough interior of the spinal column and therefore reduces damage; not unlike the damage that results in a pressure sore, ie. lose of circulation resulting in scar tissue and/or dead tissue. I'm thinking the cooling down might retard the NOGO Receptor's ability to block repair. And if I remember right, Simon may have posted a link, or I may have read an article regarding a specific protein that triggers NOGO into action.

All of this is very cool, no pun intended, and bodes well for new injuries. It would indeed be wonderful if no one had to live with SCI for very long.

As one with an older injury, I'm not holding my breath that a "cure" will be available in my lifetime. Given the complexities of our nervous systems, the damage done to other body systems due to extended paralysis and the plethora of medications doctors seem to hand out like candy to help us deal with failing systems and pain...can a body actually recover; I don't know.

I'm an optimist and a realist, thus I've moved on with my life. I'm a positive and open guy. Meditation, alternative therapies and methodologies for rehab, physical, chemical, mental and spiritual practices are a part of my daily life. I do have hope we humans open our minds to more than the obvious...we use so little of our metal/spiritual capacities, who knows what we really can achieve.

Would I like to walk again, yep, is it necessary to live a happy, enjoyable and productive life, nope.

I'll seeya round the site and look forward to more informative posts.

Jerry