By Kathie Sharpe on Monday, June 05, 2000 - 04:36 pm:

Greetings!

My "official" dx is EDS type 3 (hypermobility) but I also have the teeth problems of type 8 (i think?).

I have been experiencing hearing loss over the last ten years or so. When I finally had to turn the closed captioning on, I went the an audiologist. He tells me that I
have significant lower-range hearing loss, both outer ear and inner ear.

He also tell me that EDS is responsible. Now I have never heard of this... so I spent an hour researching on the net this morning. Nothing that I can find anywhere.

The last thing the doc told me is that because of my EDS, if he was to operate and put new, artificial bones in my inner ear, I would have a high probability of going
deaf from the surgery due to poor wound healing. Does anyone have any experience with ear surgery and EDS?

Thanks for any help you can give :)

By Sue C. on Monday, June 05, 2000 - 04:36 pm:

I think I read something on ednf.org about hearing loss and EDS. It was probably buried in the text somewhere, rather than being a separate topic. Perhaps calling
or e-mailing ednf would get you the info quickly.

Also, do YOUR wounds heal poorly or is it an EDS assumption? (I'm on a "remedial" recovery plan from knee surgery to safeguard against EDS, yet my healing is
normal.)

By Kathie Sharpe on Monday, June 05, 2000 - 04:37 pm:

> Also, do YOUR wounds heal poorly or is it an
> EDS assumption? (I'm on a "remedial" recovery
> plan from knee surgery to safeguard against
> EDS, yet my healing is normal.)

It depends on the day, literally. I've had little tiny cuts turn into gaping tears that took weeks to heal, and I've had horrible ones that seemingly healed overnight.
There's no rhyme or reason to it. However, anytime in the past that I've had surgery, I've taken a very long time to heal "inside" even after the skin looks healed...and
then after a few months, if I move wrong, the scar will stretch out and start to look papery and yukky. So it's not a risk I will take unfortunately.

By Jen on Monday, June 05, 2000 - 04:37 pm:

Yes you can develop hearing problems with EDS. There is an excellent article on this on the UK website

By Kathi Sharpe on Monday, June 05, 2000 - 04:37 pm:

Jen wrote:
> Yes you can develop hearing problems with EDS. There is an excellent article on this on the UK website.

Jen, thank you! I just found it.

If the theory is that the little inner ear bones have dislocated, is there not a way to put them back the way they belong? Any chiropractic or other treatment that may
help?

Thanks to anyone!
Kathi

By Hilda on Monday, June 05, 2000 - 04:38 pm:

Have you tried searching for "osteogenesis imperfecta" ?!Symptoms due accure in certain types.
Good luck, love Hilda

By Patrina on Monday, August 21, 2000 - 10:44 am:

Hi. There's a new method (small implant behind ear) to restore natural-sounding hearing which should be available in a year or two. I read about this within the last week or two in science news somewhere. If I were you, I'd consider holding off on the surgery you're currently considering. I'll see if I can find a link to this new remedy & post back with it for you.
Glad to meet you all, Patrina

By Barbara on Wednesday, November 21, 2001 - 11:59 am:

Marge Tamas is currently conducting a research study on EDS and Hearing. Here's the details:


EDS and Hearing.
Study Title: EDS and Hearing.
Study Contact: Marge Tamas, HBSE.
E-mail: mtamas@mindspring.com
Phone: (770) 439-6037

Purpose:

To investigate risk factors for hearing loss and connective tissue problems.

To participate in the study, you will be asked to complete a 5-page survey and provide copies of any audiology tests you have had done, even if the audiologist said "your hearing is normal."

If you would like to participate in this project, please contact me. Feel free to forward this information to any individual or list-server you think would be helpful to my study.

Thanks!

Marge Tamas, HBSE mtamas@mindspring.com
(770) 439-6037