- 4.5 million people suffer from some sort of balance disorder. Of course not all of them have Meniere’s but that is a large number of people.
- The article explains why we become dizzy in layman’s terms “when you move your head, fluid in 3 inner ear canals swish around, bending the hair like cells that line the canals. The cells tell your brain which way they are flexing, which the brain uses to determine the direction you moved. Your brain then prevents you from getting dizzy and falling over, by, say, keeping your eyes focused straight ahead while you are jogging.”
- The problem lies when the hair like cells are damaged by antibiotics (gentamicin), aging and injuries.
- Dr. Santina’s prosthesis is worn on the outer side of the ear. It interprets head motion and sends electrical signals to the brain.
- Dr. Santina is trying to reduce the size of the device by 20 percent so it can fit under the skin.
- He has been working with chinchillas and monkeys during the experimentation. The results have been good.
- He wants to start clinical trials in 2013.
- Volunteers are already lining up to be in the trials (I don’t doubt that in the least!)
Thanks
Posts
39 comments:
David :
excellent work. I read the article and called the vestibular neuroengineering lab of dr Santina: he expressed to me that the device is now small enough to fit completely under the skin. The size is now smaller than a quarter and battery life is now 32 hours and they are trying to make the whole device wireless via an interface. Yes, still about 2 years away, but according to the lab all science aspects have been solved. They will be proceding to the regulatory phase next.
Ann
David:
you hit the nail on the head with this one. Yes, still about 18 months-2 years away, but it's coming. David: if you call the lab, they are very nice and helpful. I called and they told me the device is fully implantable behind the ear under the skin. It is about a half inch and that is it. Will be like getting shunt surgery behind ear.
David: if you get a chance you should call the lab, they are very nice; especially if Dr. Santina picks up the phone. Talked for about 10 minutes.
Ryan
David:
stay positive and patient. Try to manage every day and before we know it, help will be on the way. David: smart people don't waste their time on things they think are going to fail. Many other doctors are starting to develop vestibular prosthesis they know the market is huge.
You made my day, I want to call and than him.
Kathy
David: is that 4.5 million in U.S. alone or world wide. If this man can pull this off he will be a very very wealthy man. I know I want mine today. I find it better to call if you have questions, they have someone there to answer questions. I will put off that laby after all. I can survive on disability for 2 years.
Matthew
David:
perfect description of article for those that have not read it. I read it three times. I took the advice of so many and did call the lab. I am glad I did. They told me it is now fully implantable. The only thing visible on the outside of the ear now is the battery to be used to recharge the inner ear battery and than take it off. Was told battery life is now over 30 hrs. How cool. A new inner ear that is fully implantable all on a microchip the size of a quarter.
Rusty
David:
I started this journey over 20 years ago. I was told nothing could be done to help me, especially since I am bilateral. I have lived with this dream of a cure for over 20 years. I read the article and had to call, Spoke to Dr Santina and he told me I was a perfect candidate. I can't wait.
David: I encourage you to call the lab. They are very helpful and nice. They have someone there just to answer all questions.
Jennnifer
David: from your point of view do you think this is the breakthrough for all vestibular disorders causing vertigo.
David:
called the lab after reading article and blog entries to verify the size of device, battery life, fully implantable ect..... I found the only thing you must wear on the outer ear is the battery pact to recharge the device for a few hours in the evening before bedtime. I call the lab and talked to Dr. Dai, one of the chief engineers/researchers/designers of the device and he told me I could swim, scuba dive, and water skii with the device. I love the water. I will have balance like a normal person. He said just make sure you charge it up at some time every day.
Carla
David:
great post, this should be posted on menieres.org
found the article at library, called lab right than and foun out they have been building and perfecting he device since 2002. This is actually the third edition of the vestibular prosthesis. They are working out a few issues before regulatory approval and clinical trials. Their one goal now is to make it completely wireless. This is exciting.
David: you do a lot of research, is this the answer so many of us have been looking for.
Johan
David:
I encourage you to call the lab if you get a chance today. They really are helpful and take time to explain things to you. Spoke to a doctor, forgot his name for about 20 minutes. Very professional and very confident in the device.
David: call the lab with questions and make a comment on it in the blog. Good work to whoever came across the popular science article.
Rodney
David:
love it, maybe all vestibular problems and diseases will be a thing of the past in the next 5 years. What would possess someone to undertake a project like this. Where would you start, very smart man. Gives me hope!!!!
Stanley- bilateral 6 years.
David:
I can't drive to get article, total vestibular loss.
David: please call lab for me and ask more for us.
I trust you David to ask all right questions? David is this it, I can stay patient for a few more years. Please tell me more about it?
Phil
David:
I am at my MM support group in Chicago. Everybody is talking about this article and the blog postings. Everyone has phones out sending messages, this is great news, even if it is a year or two away. It seems the test results are solid and the research is first rate coming from
Hopkins. Many here read the article and have called the lab.
David: will this stop my ossillopsia, it appears this is my
answer. Tell me more David. Have you talked to Dr Santina.
Linda
David:
these vestibular prosthesis are starting to get more and more attention, especially the Hopkins device. Have seen several write ups on them and even heard about it on a health forum on radio. When they get this much attention, things must be for real and the science and research must be solid.
David: how did you come across the article. I have never picked up a popular science magazine before.
Great research David.
David if you call the lab, please post comments on blog, I would love to see what they have to say.
Bruce
David:
I have complete vestibular loss and am deaf in both ears. I have ossillopsia, cannot drive and cannot call lab because of deafness. I have had the MM beast for 26 years, homebound for the last 4 years.
David: please call lab for me and verify all that I am reading and seeing is correct. I am so happy to come across this I want to cry. Maybe I will get to fulfill my dream of going to Europe one day and drive across the country to see all that read about.
Thanks David: please call and verify for me?
Edward: bilateral vestibular loss, bilateral deafness: waiting for CI, but if I had to choose I want my vision and balance back. I can live deaf.
David:
I thought this was a joke, but everybody at my
support group is talking about it.
Tell me more details David: I know you have talked with someone at the lab?
Wow 2-3 years and it could all be over!!!!!
Rhonda
David:
homebound/wheelchair bound for the last year with MM.
I want to call the lab David, but can't hear basic phone conversation.
Please call lab for us deaf MM's and get more details David?
I want to scream I am so happy right now, but I would not hear it so I will just cry with excitement.
Cole- Indiana
David:
you dropped a bomb all people with vestibular disorders.
How did you even hear about something in popular science magazine.
Kathryn
David:
functionally deaf from MM. Please call lab for me to verify size, battery life, wireless and basic confidence in device. I want to call to get basic confirmation of these things, but don't have assistance now and cannot hear conversation on phone. I rely on your blog for so much, thanks David. Scheduled for CI in February.
Brad
David:
I don't care If it is 5 years away, it is a nice thought knowing this could all be over one day when I barfing all over the place and can't work.
I have found doctors don't like talking about it because they know their incomes will take a hit. This morning my doctor told me to consider a laby, In my mind I thought about the article.
Jason
David:
everyone is sending messages into your blog from my support group in Chicago. Thought I would send one too. This meeting has turned into a party.
Steven
David:
thank you for turning our MM meeting into one big celebration this morning.
We usually discuss the topic you raise on your blog as well as other things.
I know many people here were sending you messages. The meeting can at times get depressing with negativity, but you hit ahome run this time. Everyone left hopeful.
Thanks
Jeanne
David:
long time reader, first time poster on blog.
David: I trust your opinion, could this finally be the answer: what is your professional thoughts.
Nicole- California
David:
please call the lab for me to verify what I am reading on your blog post.
I cannot believe this. To find this in a magazine like popular science of all places. Are you sure it is not a hoax of some kind? I am excited!!!!
Let us know what the lab says if you call David.
Sarah-Oregon
David:
will this help patients with MAV. I hope so, that would be great if it did.
Mark
David:
tell me more, on my way to MM support meeting in Florida.
Did they give a contact number to call if you have questions?
Coming from Hopkins this must be promising. They have been ranked #1 in nation for ent for 20 years running. They don't just put out information like this for the he'll of it.
David did you call lab, what did they say. I would love to call.
Tony-Florida
tried to get this magazine edition the other day but the october one was already out. i plan to try to get by the library to get a copy. thanks so much for summarizing for us! it is exciting news but i knew it wasn't possible it was being trialed in humans now as others had suggested. but hey, i'm just happy something like this is on the horizon!
hope you are well!
David:
do you have an email or contact number we can call or email address of dr Santina. I would love to call and thank him.
David if you contact him/lab please put comments on blog post. I know many are anxious to know more, including myself.
Thanks
Cody-MM since 2001
David:
dr Rubinstein @ university of Washington is going to human trials this fall. His prosthesis is a pacemaker device that is implantable as well. His device pulls patient out of attack as soon as it starts.
Carl
Thanks everybody for the comments!
At some point I will try to contact Dr. Santina, if anyone has an email address let me know. I’d rather contact him by email instead of calling. I know a lot of people have asked if I think this is the cure that we are looking for. I just don’t know because I’m not a doctor or a scientist. Let’s hope for the best and be patience.
David
David:
will this help with MAV as well. Did the article say it if it will cure all vertigo.
Thanks/. Great news.
John
Great to see so many new commenters on David's blog! Keep it up, please - until a solution like this one finally arrives the main thing we can do is learn from each other's experiences.
I'm in the UK and I don't believe we have the magazine on the newsstands, so I'll try the libraries in case they take copies.
Hi David
His email address is:
charley.dellasantina@jhu.edu
Thank you for all your posts and the blog, I'm new to this whole mess, and it has been immensely helpful.
Thanks and regards,
Laura
Hi! I got hold of the magazine yesterday here in Sweden. Very interesting reading. It´s nice to hear that there is someone who spends time on trying to make our lives easier and that people with vertigo and balance problems is not a forgotten group.
Keep on writing and searching for information David!
Susanna
@Jeff,
You are right sharing experiences about this disorders with each other helps alot.
thanks
David
@Laura,
thanks for the email address, I couldn't find it anywhere!
David
@Susanna,
I'm glad you found a copy of the article it was really interesting.
thanks
David
David
just wondering if anybody has tried to contact dr Santina.
Unless I hear it directly from the source, I am always a little skeptical.
Your are so right David, very interesting and encouraging.
We all yearn to be normal again.
First time David, good blog, I will be a regular reader.
Paul
@Jeff and Susanna:
I was just wondering if destructive surgeries are performed in Europe, besides gentamicin. I am just very curious how different parts of world treat MM.
(I heard they shy away from vns and laby's)
thanks a million
Paul
@Paul,
I think in general there is a less aggressive approach to treatment here. It seems to be a case of letting things play out for a while and seeing what works for the individual to reduce the symptoms. (Healthcare financing is probably a big factor in the differences from the US.) In my own case I've never had to discuss any serious treatment options as whenever it's come to that point with my specialists I've been feeling relatively well.
I know a handful of other people with Meniere's and only one had a laby, and that was decades ago. I think there is also a different selection of drugs used here. My aunt had Serc/betahistine and I'm always surprised to read about people taking valium!
@Jeff
thanks Jeff, I'm glad you are feeling relatively well. Jeff I also heard about a prosthesis being developed in Europe called CLONS. Jeff, do
people in Europe feel there will be a breakthrough at some point. In researching, many European doctors involved in this prosthetic technology, especially at Cyprus.
Talk to you soon Jeff
thanks Paul
@Paul
I'm sorry but I can't tell you much about the feeling in Europe regarding prostheses and so on. I'm not involved in any kind of local Meniere's community - David's blog is the main thing for me - and the other sufferers I know directly don't take such an active interest in developments. This again may be down to the healthcare system - there have been improvements but I think a lot of people still don't feel empowered and tend to accept what the doctor tells/gives them.
Another interesting difference is that of the small number of people I know, none have really persistent and/or severe problems. They might have a few bad months from time to time but they haven't been debilitated by constant vertigo or very long attack clusters. I do wonder whether this is thanks in part to the slightly less pressured life we typically have in Europe, and a better diet?
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