Monday, February 15, 2010

Simulating a mixed hearing loss. Met an ASL interpreter. A little more stem cell news.

It's been a while since I updated this blog. On the stem cell side, there's nothing new since Chloe, but this will soon change in the next few months. I met an ASL interpreter while shopping for food. We had an interesting discussion and she was amazed at how well I read lips and speak. Several days ago, I simulated a mixed hearing loss by wearing a homemade earplug in left ear. I made an audiogram of this vs. my control right ear.

First, let me discuss my meeting with the sign language interpreter while I was in the store. She noticed I was wearing hearing aids and started signing to me. I spoke to her and she replied back. I think she at first thought I was HOH, not deaf. I removed my HAs and she spoke 6 inches from my ears but I heard nothing but silence. My dad says "of course you knew you wouldn't hear anything" I thought id hear a faint noise, but nope. Her voice was higher pitch and my loss is profound in that frequency range.

She says I should learn sign language and that it's fun. I told her I wasn't interested in being an interpreter. She says I can join Deaf culture and make Deaf friends. Im not a social person and besides, I won't fit well with Deaf culture. She also said that only 2% of the deaf can speak well and read lips. Once a deaf child is taught sign language, they stop speaking and become mute. I was surprised to learn this and why couldn't they be both oral and manual? She said it was easier to sign than learn to speak and read lips when you are deaf. But she did agree that learning to speak and read lips was important.

I thanked her and left. In the car, my dad told me he and mom spent over $5000 for me to attend speech classes to learn how to speak clearly. I learned how to read lips and talk at like 2 years old and dad said if I had learned sign language, I would have stopped speaking and reading lips and then I never would be able to speak nor read lips. My parents decided to choose the oral approach because the vast majority of people communicate this way. Hearing people don't use sign language unless they become interpreters and work with the Deaf. It's much easier to talk than bring a pen and pad and write everything down and have that person write too.

They also spent thousands on the best HAs. This is very important that you get as much access to sounds as possible! Too many people have the wrong HAs or HAs with insufficient volume/gain and they aren't hearing as loud/well as they should. There are people with better hearing than me who did worse than me because of this. In the last 5 years with the CI hype, doctors/audiologists are keen to push CI on deaf people, especially children. Many of those deaf people could have done just fine with HAs as I did. The original purpose of CI was to give access to sounds when you were 100% deaf. CI technology of course has improved, but so has HA technology! I have discussed CIs in detail in my previous posts.

I now understand why surgeons are reluctant to implant those who aren't taking an oral only approach. They do much better with CI if they learn how to speak and read lips. You don't need sounds to learn sign language. It's possible to be both oral and manual with HAs/CI, but you won't be as good with lipreading, speaking and understanding speech. My parents put their effort in an oral only approach and I wasn't interested in sign language as a kid, I certainly am not interested now. Many who start learning sign language then get CI simply drop the sign language and become oral only as they can hear some speech and find the oral route easier. Those who aren't given enough effort to learn the oral route with CIs then find their CIs useless as they grow and simply stop wearing their CI(s).

On the stem cell side, I learned that 6 people(excluding 20+ anecdotes) for the year 2009 pioneered in stem cells and 2 got a huge improvement(one of them is Chloe, 70db improvement) two got a moderate improvement(25db?) and two got little(10db?) or no improvement. Ill have to find out why not everyone gets an improvement, but then not everyone improves with CI and not every reason is known! Sometimes, it's just "bad luck" that CI or stem cells fails to help. There will be several other options(CI isn't one of them) should stem cells fail for me.

I also learned that the stem cell clinics have begun directly injecting stem cells thru the eardrum and into the middle ear. They viewed this as too risky last year. I guess technology advanced to the point where the risks are less and the benefits greater. Ive been in contact with stem cell centers and learned that the IV route gives you 20 million stem cells each treatment for ~5db improvement per treatment. The direct injection route gives you less than 1cc, less than a million stem cells, yet may give you ten times the improvement! Far, far more stem cells end up in your cochlea because they were injected directly into your ear and don't have to migrate great distances. The IV route does allow a tiny amount of stem cells to migrate to your cochlea. The stem cell labs in China give 4-6 treatments by IV and you get an average of 20db improvement. When they start doing direct injection, we could be seeing ~50db improvement with 1 treatment and a restoration with 2 or 3 treatments! To my knowlege, the best stem cells can get your hearing is to 20-25db HL and this was shown in animals, including birds who can naturally restore their hearing. But we will see in due time if any humans are getting to 15db, 10db, even 0db HL with stem cells. This would be amazing!

I probably won't get stem cells this year but there's a chance I will in 2011 depending on results of the pioneers. I am particularly interested in results done by direct injection and learning about the "unknown" risks. Im worried about losing some or all my residual hearing(which is why I won't touch CI, among other reasons) id have to see if direct injection of stem cells can cause any damage to residual hearing should it not work, would you end up worse off or the same? I might decide to only risk one ear with direct injection(plus get the IV) if any of the pioneers are experiencing complications going this riskier route. My parents and friends do say it's a good idea to wait out 2010 and learn from their results and I can decide what to do. Id have to weigh the risks vs. rewards of IV vs. direct injection. I should be finding out results from those 2 pioneers in a Mexican stem cell clinic in about 2 months. Ill try to get as much information as possible, including before/after audiograms.

This is my simulated mixed hearing loss. Ill try again with proper earplugs and reconfirm when it becomes vibrotactile. When I hold the earphones, I can feel vibrations at 55db, 75db, 100db, at 125, 250, 500Hz. Can't feel any vibrations at 110db at 750Hz and up. Wearing the earphones, I need 15db more to feel the vibrations around my ears. I read a website that says vibrotactile responses can be felt up to 500Hz.

Thanks for your comment guys! Someone mentioned connexin 26, I will discuss this in a new post with tons of facts! Nepsis is the stem cell center in Mexico, they may be treating at least 2 people and several more have signed up at that center. Should Nepsis be successful in treating several people, I am getting it done there, possibly next year. Chloe was deaf for 3 years and was recommended a CI, but stem cells restored most of her hearing. I am getting tired of the anti stem cell guys downplaying or dismissing her amazing success. Yes, stem cells isn't cheap but compared to CI, stem cells is a bargain plus stem cells is better across the board.