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TT- 05-10-2007
Animal Testing Research
There is very little known on what can improve ENS and of course if money was available research would be of utmost importance. If money was available this company would probably be a good place to start for getting research done on ENS. They do all sorts of animal testing and surgical testing on animals from mice to rabbits. Of course this is done for a fee. http://www.criver.com/research_models_and_services/research_models/index.html

TE- 05-10-2007

nice link, although I do want to clarify one thing: ENS is not a mysterious disease with many different possible reasons, like cancer, or even like atrophic rhinitis. It is a simple and clear as day light: Resection of turbinates. In the nose : Form = Function. Build back structures, similar in form proportion and location to the turbinates, and rich with vascular supply, that will remain in place and not shrink or absorb, and you have a pretty good solution for ENS. All the implant studies that have been done for over 100 years for atrophic rhinitis, and in the past few years for ENS prove that this solution works. Those who have significant amounts of their ITs left can reach quite a satisfying solution already now with alloderm, and those who have most of the ITs absent can reach some significant improvement too. Those with MT resections have impressively improved with Dr Houser's implants too. Of-course the more vascular incorporating the implant material the better the results. This is all available now. Besides that there is the long term through tissue engineering and stem cell technology and there it would be wise to invest in research. Theorethically un-known number of years from today it should be possible to cause a turbinate stump to regenerate. Can it regenerate to full size, or even half size, I don't know, but that the research worth investing in. Anothe important investment for a more immediate solution is to identify better implant materials than Alloderm, although that's not to say that one cannot benefit from Alloderm.

canada110- 05-10-2007

i wonder if someone shoud contact them and ask them what kind of cash flow we would need to get them to experiment on animals with turbinates etc etc

TT- 05-10-2007

TE, You need to work on your people skills. I think everyone knows that getting our turbinates back would cure our ENS. We just don't know what putting different types of implants or injections in our nose will do to us and if they will help. I am not saying only alloderm but other biomaterials, stem cells, or even lab grown tissue. This is posted under Research Ideas because it is a "Research Idea". Naturally if I had a prosthetic leg, I would still want people to do research on how to grow my real leg back. The point of this forum is for improvements to what is available now. Whether it is improving the implants or testing regenerative methods. Everything that is currently done and that has not been done can be greatly improved by animal research. Reasons for alloderm shrinkage could be determined, better implant material could be tested, and stem cell injections, and other novel therapies could be tested. The reality is that there are therapies with potential to help ENS right now. Without animal testing we will never know the safety, and efficacy of these therapies. If stem cell injections could simply heal the turbinates an prevent more atrophy that would be huge. Hearts, livers, kidneys, brains, spinal cords, limbs, etc have all been injected with autologous Stem Cells with varying results. Could an animal test help prove safety and efficacy of regeneration or repair of damaged turbinates from a stem cell injection? I think everyone here would like to know the answer to this even if it does not help ENS.

Anthony- 05-10-2007

If this organization supports animal testing in any way, I will no longer support this association, and I will disassociate myself from it COMPLETELY. HAVEN'T YOU GUYS LEARNED ANYTHING FROM ALL THE SUFFERING YOU'VE GONE THROUGH. COMPASSION IS THE RIGHT PATH. ARE YOU GUYS REALLY WILLING TO CAUSE MICE AND RABBITS TO GO TROUGH WHAT WE'VE HAD TO GO THROUGH JUST SO THAT WE CAN FIND OUT THINGS WE ALREADY KNOW? IF WE SUPPORT THE EXPERIMENTING ON ANIMALS, THAN WE ARE NO BETTER, MAYBE EVEN WORSE THAN THE DOCTORS WHO MUTILATED US. There are already solutions that are available for ENS, and testing on animals won't accomplish anything except more suffering. I've supported this organization since day one, and I have always thought it was such a great organization, with the same goals I had in mind. I've already donated money every so often to The Empty nose syndrome association, but I will stop if this org starts sending money to this company(or any other) that does inhumane experiments on animals. DOES ANYONE ELSE AGREE WITH ME? PLEASE VOICE YOUR OPINION.

canada110- 05-11-2007

anothony i agree as i wouldn't wish my conditions on my worst enemy(well just the doctor who did it.lol)and I dont' believe harming animals is right.on the other hand though I think if it helped get a cure for this that would be huge for a lot of people in the world and help them live normal lives. Anthony its a bit different for you since your almost at a 100 percent and enjoying your life again after your implants so I guess I'm just in the middle or I guess on the fence with this one. I don't want you to leave this site as your a fountain of information for us and you've helped me lots already.Also I don't even think this company would help us and we don't have the funding for it so I don't think we need even worry or discuss that option.. I hope you understand my view and don't get mad...

TE- 05-11-2007

TT, Please do not get personal and then lecture me about people skills, OK? When you said "we don't know what improves ENS", I thought you meant - how should the empty nose be implanted..., I did not understand that you were referring to the different material possibilities of the implants themselves. You could have made that clearer in your post... So I made an honest mistake, and you don't need to get personal because of it. PS: Alloderm itself, at least in Dr Houser's series has not shrunk in eight patients he followed up, with more than 20 imlants combined. This data Cannot be fully published until the article is published, a few months from now. Two days ago Dr Houser witnessed that a new implant of a few months old had shrunk in an area he has not implanted before (the posterior nasal floor). This incident remains an exception and the reasons for it can be many. Other researchers like Friedman that reported some shrinkage, reported it occurred in patients who had no ITs and therefore were grafted into their lateral walls, which has a very thin sub-mucosa and is a very hard area to implant. Dr Houser, in those cases, prefers implanting the septum which has good results and shows no shrinkage at follow ups of 4 years. Other researchers like Mendoca and Rice have reported sustainable success in the lateral wall with many different materials including Alloderm. In an important study of implants for atrophic rhinitis from 1958, Cottle reviews hundreds of studies of implants for AR published until that time and concludes that although there is some shrinkage of most materials (auto grafts and exografts) after time, it is never a complete loss of material and one or two more procedures usually make the results much more stable and permanent (note that his study did not include Alloderm as it wasn't invented yet).

canada110- 05-11-2007

y dont we contact them and ask what kind of dolars would be needed to spend on something like this. I agree with Anthony on doing this to animals but I mean we would all like to be cured. I know an animal will have to suffer and I mean I would totally be the little piggy to try it if they wanted to help you guys out as I"m suffering already what would be worse..

TT- 05-11-2007

Anthony, I relate to your beliefs. Certainly you know that Alloderm and Cymetra were first tested on animals before being FDA approved. If you could not have use these products because they used animal testing would you still feel the same? I have killed several rodents in my home in the last year just because they were not safe for my family. I think to harm a rodent to potentially stop the suffering of thousands of ENS patients is a much more meaningful cause to kill an animal. Or to kill an animal for food for one day is far less meaningful than if that single animal could improve the lives of thousands of people for the rest of their lives. After all every year thousands of frogs are dissected in high school biology classes all in the name of science. Dr. Houser himself has stated that if he had the funding, animal testing would help greatly in improving implant results.

TT- 05-11-2007

TE, Thanks for your response. Please do not take every post on potential new technologies as an attack on what is available now. It certainly is not that at all. Just as researching limb regrowth is not an attack on prosthetic limbs developers. I think this is a fair analogy.

TE- 05-11-2007

TT, Lets get some things straight please, just for the record: a) I do not take any post about new technologies as a personal attack on current therapies, and why should I do that anyway? Do you think I do not want better therapy possibilities? But, that's not the attack I was referring to. I think you are the one who attacked me personally, for your own reasons, which I cannot begin to guess, and haven't even apologized. That's the only "attack" I found in your posts, which I protested about. b) If you have been following my posts at all in the last three years, and if you have perhaps talked to David about my beliefs, you would have understood that someone who calls himself TE (for "Tissue-Engineering") will be the last person to object to looking for solutions in cutting edge technologies. I have been talking to tissue engineers as far back as 2000. And if I think you are who I think you are, then you know that very well. The problem I had with your post regarding Alloderm was something else all together. If you have noticed my post to "3" a few days ago, you would have noticed that I only get annoyed when people spread disinformation about Dr Houser's implant procedure. When I started reading his board about 3.5 years ago, I kept on noticing something weird: Here he was telling everyone that he has done some Alloderm implants and they really helped some people. Obviously many people began to wonder if they haven't shrunk and Dr Houser said they haven't, but those people including someone who called himself "knows" (sounds familiar?) kept ignoring what the good old doctor said and kept on insisting that Alloderm does shrink. "Well", I thought to myself, they must know this for sure if they state the opposite from the doctor, otherwise why aren't they all rushing to get an implant?.... So - I approached all these people personally and asked them if they had read it in any published study, have they heard this from any doctor who has witnessed it himself, and all I ever heard was this lame excuse: "no, but it's common knowledge...", well then - that left one option - Dr Houser doesn't know of this, but as it is "common knowledge" they must be right and the Alloderm will shrink over time. As you can imagine, over the years, people kept on asking Dr Houser - have any of your implants got absorbed yet, and more and more people had them implanted, but the answer remained - "never". For some of those implants, it had been after 3 and 4 years of follow up already. When Dr. Houser asked me in last September to help him write his research article about this Alloderm implant series, he supplied me with all of his data and personal observations in his follow ups, and I realized that at least 4.5 years down the line the Alloderm did not get absorbed. More than that, we couldn't find a single study that claimed otherwise, in-fact we found many studies of Alloderm, albeit not in the nose, that assured that Alloderm does not get absorbed. Further more in the official FDA trials on Alloderm they claim themselves that it doesn't get absorbed (I can't remember the number of years they checked but it was more than one or two). This is what Dr Houser says, except for the one that is an exception from a few days ago (which was planted in a very unconventional and problematic place to begin with and it shrunk immediately): I haven't seen any of it absorb even after 4.5 years. Perhaps it will eventually, after 10 years or fifteen years, I don't know because my follow up is not that long yet, but what if it does? - then you can just get a new one good for another 10 years, just like getting a crown or doing a root canal for your teeth. 10 years, or even eight or six is a long time to gain, a time of better well being and much less suffering, can you put a price on that? I have been wondering why American patients don't simply rush to him to get those implants, at least as a temporary solution until something better comes a long? Dr Houser made it clear that these implants won't be in the way of anything else, and if they do absorb than that won't be a worry anyway... Furthermore none of the patients which he implanted became worse, so what's there to lose , I wondered? I discussed this with him and his answer made sense: First of all, he thinks that as we have all had a negative experience of a surgeon letting us down, we are all traumatized and don't believe anything doctors say any more, including him. Second of all he thinks that the more traumatized patients amongst us are obsessed with voicing their fears all the time, but they forget to mention that it is only their unsupported personal belief, and they state it as if it was a well documented fact, thus spreading much disinformation and frightening patients who would have otherwise considered it. So, this is the only thing I wish - for the facts as we know them today to be presented correctly, without hysteria, beliefs, and contemplations. Facts - yes or no. As simple as that. Straight forward, so everyone can make up their mind knowing the actual facts. He further said something else, which I found hard to accept initially, but I'm becoming persuaded that he is right about that too: He told me of patients that came to see him already, and made and were scheduled for surgery and simply freaked out in the last minute. OK, this is very understandable fear. But, these patients had to rationalize to themselves why they simply got cold feet for no rational reason besides their normal fear, so they began posting on this board that they know for a fact that Alloderm absorbs. Dr Houser put it this way: they have become used to there state of misery, as it is all they know and remember now. Any possibility of change is unknown territory that frightens them, therefore they prefer not to take any risks at all, even very well calculated risks, and remain in their present state of misery which they have become accustomed too. I'm beginning to think he's right. c) by the way, I must support your approach to animal experiments. I know that there are no alternatives to it, and I can't accept the distorter morality that an animals life is as sacred as a human life. I'm not a vegetarian, and I eat animals to survive, yet I love animals and there is no contradiction. Anthony, you had Alloderm implants yourself, and you knew that Alloderm was tested on animals before it was FDA approved for humans, didn't you? Take for example the exciting news about the pig bladder that was used to regenerate finger tips. Some pig was slaughtered only for his bladder, and this might be the key for regenerating resected turbinates in the future. I would like to see the ENS patient who would refuse accepting this pig bladder in his/her nose just because it cost some pig's life.

canada110- 05-12-2007

Te, I would have to agree 100% on your comments about the animals. I mean I know I would take the bladder in a heart beat if it help my nose out..

TT- 05-13-2007

TE, Let me start by apologizing to you. It was a personal jab and was not called for. I appreciate you explaining your reasons for all of your feelings regarding implants. It does make sense to me now. I respect your knowledge of ENS and I am glad to hear your thoughts and opinions. I for one am encouraged by Dr. Houser's implant results and am grateful for his efforts to help us all. My posts on new research are meant to provide hope to everyone with ENS and definitely not to discourage them from getting implants. I agree that implants greatly help those who have gotten them and Dr. Houser is the best surgeon to do them. Hope is extremely important, as without it ENS sufferers often fall into depression. Regardless I think we want the same things.

TE- 05-13-2007

Thanks TT, Again, just to make my opinion as clear as possible: I by no means am expressing my private opinion about the Alloderm implant therapy that Dr Houser provides. Every one should make their ownmind on that, based on the facts. All I want is for people to get accurate information, as reported by Dr Houser. People kept on asking Dr Houser for years about a report of statistics of follow ups on his Alloderm implanted patients, and now he has it and will present it in his upcomming article in a few months. He cannot publish the table of results until the article is published, because of copy right demands, but I can tell you that the results are quite encouraging, and Dr Houser himself commented on them many times stating the most important results clearly: No one became worse. Everyone improved to some degree. The smallest improvement of self reported ENS symptoms was 15% and the highest was 90%. The implants seem stable at 4 years follow up and 3.5 for at least the two patients that reached this time. Other patients at arount 2.5, 2.5, 1.5, etc', are stable too.

3- 05-18-2007

I don't agree with you Anthony on this. Animal testing is very important if we ens victims want to progress anywhere. Aren't you already cured, so why are you worrying about it? I am not trying to start a debate or anything.

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