See into the inner ear
http://www.ecnmag.com/news/2014/07/...w-hearing-loss-therapies#.U7roaCBc0yI.twitter
http://www.ecnmag.com/news/2014/07/...w-hearing-loss-therapies#.U7roaCBc0yI.twitter
Im sorry for your nephew.Hi All,
This is Dev and I am from India. I am on this forum representing my 5 yr old nephew who has just been diagnosed with severe hearing loss (70-80%) in his right ear and moderate hearing loss (50%) in his left year. His reports came last week and MRI scans show a possibility of TORCH infection due to which he has probably taken it genetically during his birth.
Doc tells me that he has had this condition since birth and we are only observing it now but I choose not to believe this theory since his learning speed has been very high during the first 2-3 years. He spoke words clearly, recited poems in both hindi and english(which is not our mother tongue), talked a lot (asked for food, toys, gifts etc) very very clearly. I dont believe such learning was possible in 2-3 years. It is now that we noticed a change in his behaviour and his mispronunciation of words. It has progressively become difficult to teach him new stuff over the last one year.
He doesn't have tinnitus or we don't know yet as he has never described anything like that (atleast I hope so). Also its difficult for him to explain since he is just 5. I landed on this page and thankfully so, while researching new technologies that could cure hearing loss. I am so glad I did. Its wonderful to see people share so much information to help each other.
I was very sad to find out that there are no existing cures but I am thrilled at the latest research done by Genvec and Novartis. I really hope the drug comes out for commercial use in the next 7-8 years. Time is on my nephew's side for now but I am scared if this condition of his turns for worst. I really hope it doesn't.
I am more thrilled to read about the on going stem cell treatments which seem to be helping patients with hearing loss. I really want to find out more about it like what is the success %age and does the treatment has a lasting effect?
Does it have a side effect that one needs to be scared of? or are there any dangers while one is under going the treatment.
If it helps my nephew to regain atleast 25db in both ears then I am ready to take this chance since these are his learning years and I do not want him to fall behind his counterparts in any aspect be it academics or extra currics.
It will also help him utilize the years productively while Genvec and Novartis work on CGF166 trials.
It has been a week of ups and downs, mostly downs. Its really kills to find your little one go through something like this and I am determined to do whatever it takes to help him get out of this.
I really hope to extend a helping hand on this forum and receive some.
You guys are Beautiful !!
Regards,
Dev and Aarav (my 5 year old)
Im sorry for your nephew.
I also lost some of my hearing due to illness/infection when i was 7.
Get him hearing aids, it will work good in his moderate loss ear. Good cure wont be here in 10 yrs and he need to hear good in his age to learn properly
@attheedgeofscience I had a few doubt which I mentioned in the previous post. It'll be really helpful if you could shed some light on it. Like what is the success %age and does the treatment has a lasting effect?
Does it have a side effect that one needs to be scared of? or are there any dangers while one is under going the treatment.
As a Skeptic I feel really fortunate to be able to ask a pioneer these questions while being thousands of miles away physically. God bless Technology !!
Thanks in Advance.
Regards,
Dev
Hi ATEOSThank you for your account.
I agree that the audiograms you had in Portugal vs. the ones done by Dr. Wilden, show a huge difference (needless to say). I can offer explanations as to why there can be small differences (5-15 db) in this thread...
https://www.tinnitustalk.com/threads/am-101-tactt1-results-released.1994/page-20#post-38164
...but I cannot offer an explanation as to why there can be difference of up to 50-60 db. It makes no sense. Very strange.
I do believe that Dr. Wilden's audiograms are accurate and reliable; in fact his audiology facilities in Regensburg were in the top range, I would say (see photo below). And so, based on your most recent audiograms, I would say your hearing is very good (obviously). It is good to see that people who take care of their ears, can keep good hearing throughout their lives. You should remind your son (in your avatar) of that - if you haven't already. I don't have children myself, but I have a somewhat younger brother (he's 14, and I am 36), and I have told him several times to be careful with noise (videogames, iPods, and so on). There is too much noise everywhere these days. Also be careful with noise on the airplane (in the future). I recommend using earplugs for such events (as Dr. Wilden has already told you, I am sure...), but be careful about earplugs during the ascent and descent of the plane (pressure equalization).
When you are closer to making a decision about future treatments, let me know. You can have my private e-mail, phone number and so on. No problem.
Enjoy the holiday.
This is what a properly sound insulated audiology environment looks like (not that many clinics offer such high quality hearing tests). This is from Dr. Wilden's previous clinic in Regensburg:
View attachment 2027
I think we will start to see more and more gene and stem cell trials withing the next 10 to 20 years.I love how stem cell & genetic therapy are soon going to be commonplace very, very soon. Everyone realizes how much more powerful it can be... futuristic times here we come =)
Agreed, for most conditions you can think of.I think we will start to see more and more gene and stem cell trials withing the next 10 to 20 years.
I read something a while ago that they are testing artificial blood now or very soon. Imagine no more blood drives or contracting diseases from transfusions. That would be pretty cool.Agreed, for most conditions you can think of.
Imagine organs being grown from your DNA so if you need a new liver or lung they can transplant it to you with very minimal worries about rejection.
A Groundbreaking Procedure
Hannah Warren, aged 2, received a pioneering artificial trachea having been born without a windpipe.
The nine hour procedure took place on April 9 and is only the sixth of its kind and the first to be carried out in the U.S. It was approved by the Food and Drug Administration under rules that permit experimental operations when the patient has little to no chance of survival.
The stem cells used came from Hannah's bone marrow and were taken out with a special needle that entered in through her hip bone. They were then seeded in a lab onto a plastic scaffold, where it took a week for them to multiply and make a new windpipe.
Doctors are not entirely sure what happens after implantation, however, they believe the stems cells direct the body to send other cells to the windpipe, which then spread out and send the correct tissues to grow on the inside and the outside of the tube. There is no need for medications to suppress the immune system to prevent rejection of the implant, because the windpipe was made of Hannah's own cells.
1- Should be : Umbilical cord blood stem cells or Autologous stem cells?
Since the number and of steam cells delivered is an important issue, wich one should be done?
The questions are so much that I feel we need to talk by mail. phone or skype.
If it´s ok for you please send a PM with your contact and we can start from there.
If decided to do Autologous Staem cells I will need 1 1/5 to 2 months for the harvest. So I should start thinking on it
as soon as possible.
Autologous non-cultured stem cells (pros & cons)
1. "Zero" rejection risk
2. Volume of stem cells may be less than for cultured expansions
3. Stem cells are ususally re-introduced directly after stem cell harvest (from fat tissue in the belly region) which means that the stem cells are wasted on the injuries caused by the liposuction.
4. Surgical procedure is required ie. the liposuction (not so for umbilical cord stem cells which are obviously donated stem cells - unless you had your own stored at birth).
5. You get a free liposuction (whether you need it or not... ) - if you are athletic with little body fat, then you need to put on some weight (not often you will hear that - especially from doctors).
Autologous culture expanded stem cells (pros & cons)
1. Low rejection risk, but stem cells can develop a non-autologous "footprint" when undergoing an expansion process (= still possible to experience rejection even though it is your own stem cells).
2. High volume stem cells.
3. Stem cells are re-introduced later on - giving your liposuction wounds a chance to heal on its own.
4. Long treatment procedure required (ie. expansion process ususally takes 20-30 days - hence requiring you to stay in country or travel back and forth).
Umbilical cord stem cells (pros & cons)
1. Usually donated stem cells.
2. Low rejection risk even though these are non-autologous.
3. Procedure is "super-easy" because everything is prepared for you in advance; basically it is "plug & play"...
4. No need for liposuction.
5. Stem cell volume is usually lower; especially for umbilical cord blood stem cells as opposed to umbilical cord stem cells. However some hospitals do deliver a high volume eg. Hope Hospital China (but which I don't recommend for other reasons).
At this point, I have shared much information about the procedures and stem cell information in general (via all my posts). So in my opinion, it is now time for you to start contacting some of the stem cell clinics directly for their opinion. Your decision to go ahead with a procedure should not be based on my information alone; my information should only be used as a "source of inspiration". Your final decision should be made after having consulted with various stem cell clinics - thereby getting a feel of their input and feedback also, as well as the price, location, and procedure pros & cons.
I don't really want to be part of a decision making process. The reason is quite simple: you may end up not getting the results you had hoped for. In which case I don't want to be the one to blame.
No problem. Will send you my details shortly - although I cannot really provide much more insight than I have already done. I can forward you the details of the stem cell clinics I have been in contact with and the resource organization I used for my stem cell treatment in Bangkok. The resource organization maintains an inventory of stem cell clinics around the world which must live up to strict protocols before they can become part of the list. Be aware however, that you will not find many clinics available for hearing loss and/or tinnitus treatments as this is considered experimental (even by stem cell therapy standards).
Or they just realize that other companies are gonna do it first in other ways rather then naturally restoring haircells. Maybe there following am101 and autifony and are rethinking that naturally restoring haircells may not be the cure for T. Like @benryu said before, its gonna be the private companies investing millions of dollars on drugs that will be most helpful for T. The ata, hearing healthI just saw that the hearing health foundation changed their site. They got rid of the whole find a cure in 10 years and now have in our lifetime. I also saw they removed the year time lines from their research plan. In a way it's nice to see something more realistic, but in a way it's sad because they probably realize that it's going to be much longer.
Or they just realize that other companies are gonna do it first in other ways rather then naturally restoring haircells. Maybe there following am101 and autifony and are rethinking that naturally restoring haircells may not be the cure for T. Like @benryu said before, its gonna be the private companies investing millions of dollars on drugs that will be most helpful for T. The ata, hearing health
Foundation are big talk on finding a cure yet they change there quota from 10 years to a lifetime? Get your shit together and dont say one thing then another, and if they do they should explain themselves and be honest like you said and why they think its now "in our lifetime". Could be for multiple reasons, not just that it wont happen in ten years. Its competition out there.. And i consider a cure a 50-80% decrease in T which should definally be available via drug if its autifony, am101, or anything else in the next ten years. And theres even vagues nerves and all that other stuff! So yeah i think they know they wont be able to cure T in ten years cause other companies will be damn close in that time or less.
I'll say a couple things more. What you're seeing in the Pharmaceuticals industry currently is a bit of a race. Much of the basic discovery research has been done by academic and non-profit institutions. They have shown that it is possible, and quite probable, that therapeutic approaches to treating hearing loss and tinnitus will take place. The industry has noticed this. Many large companies have now devoted good chunks of funding to start ups or biopharmaceutical spin offs. It is now basically a race concerning who can get a efficacious drug or procedure approved first.
Once that happens, another huge round of financing will get dumped into the research from the industry. The patents on the old mainstays of the pharmaceutical industry are expiring (think anti-depressants, anti-anxiety medications, cholesterol drugs, blood thinners, etc.) and options for evergreening have been running out. The pharmaceutical industry has reached a point where they have extracted most of the lucrative profits from a lot of arenas already. They must basically "move the goalposts" into a new untapped market. Many companies see hearing loss and tinnitus as a major untapped market. Which it is.
I would not bet your paycheck on waiting for academic research to find the answers or best treatments now. Typically academic researchers don't do that part. They do the foundational research to show what might be possible before big pharma gets the guts to dump a bunch of money into it. The money dumped in this last year alone into several companies by large entities tells me that the money dumping is taking place and the great race can begin.
It's basically a matter of cheering them on now as to who will win the race.
Same as eye transplantation (even harder becouse cochlea is hidden behind bone)- we cannot reconnect nerveI read on their website they predicted stem cells treatments by the year 2020. It makes me wonder why they cant just transplant a human donor cochlea when they have transplant so many other organs.
Not yet at least although there is work being done on just thatSame as eye transplantation (even harder becouse cochlea is hidden behind bone)- we cannot reconnect nerve