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Hi All,
I am new to all the EDS stuff, but I have not had a hearing test in more than a decade. The last time I had one was around the time I was misdiagnosed with Ménière’s disease. Now I am guessing that was all due to my EDS. Anyways, should I get a hearing test? Is hearing loss one of the problems EDSers have?
Thanks,
Shondai have hearing problems too, but i don’t know what it’s from! sometimes i can hear fine and other times i can’t hear anything. it’s funny b/c now my kids can look at me and tell i can’t hear them! maybe they want money and i now have selective hearing!!! Ha! Ha! i’ve noticed in large crowds with lots of noise i have a harder time hearing and so does my mom who appears to have eds (while other people in the same situation are not having problems). at 85 yrs young she can still do 4-5 things on the brighten scale. if i’m really tired i can not hear at all. i had ear exam and was perfectly normal i think the dr thought i was nuts for how well i could hear-i went for vertigo too and the rocks in my head were not out of whack. most of the time i don’t tell anyone whats going on b/c i even have a hard time believing the dumb things that go on in my amazing body!!!!???
Some of us actually have “Super-sonic” hearing (me, too!). But if we get CSF in our middle/outer ear, all bets are off! Sticklers syndrome can cause hearing loss (video coming out on that next week). That may be worth exploring if your hearing loss consistently stays in the dumper… My husbands cousin may have that! Talk about ‘inbreeding’! ha.
I do have a problem with loud noises and certain noises bother me. They really, really, get on my nerves. I only have trouble understanding some conversations when there is a lot of back ground noise present, and sometimes I have troubled hearing conversations on TV.. I though I read somewhere where the small bone and joints in the ears can be damaged in persons with EDS. I can not remember if I read that or made it up. I ask because my Geneticist kept asking when my last hearing test was and if I had hearing problems. I should have asked her more questions about it. Is hearing loss a concern in EDSers?
Thanks,
ShondaSome of us actually have “Super-sonic” hearing (me, too!). But if we get CSF in our middle/outer ear, all bets are off! Sticklers syndrome can cause hearing loss (video coming out on that next week). That may be worth exploring if your hearing loss consistently stays in the dumper… My husbands cousin may have that! Talk about ‘inbreeding’! ha.
Dr. Diana,
Since Sticklers syndrome is caused by the same Collagen deficiency that is seen in the classical form of Ehlers-Danlos, is that something that people with classical EDS need to worry about?
ShondaI do have a problem with loud noises and certain noises bother me. They really, really, get on my nerves. I only have trouble understanding some conversations when there is a lot of back ground noise present, and sometimes I have troubled hearing conversations on TV.. I though I read somewhere where the small bone and joints in the ears can be damaged in persons with EDS. I can not remember if I read that or made it up. I ask because my Geneticist kept asking when my last hearing test was and if I had hearing problems. I should have asked her more questions about it. Is hearing loss a concern in EDSers?
Thanks,
ShondaShonda, Hydrocephalus can cause this problem, as can Sticker’s. I’m sorry I don’t recall if you have hydrocephalus? Some of us with EDS have “super-sonic” hearing!! 😉
I do have a problem with loud noises and certain noises bother me. They really, really, get on my nerves. I only have trouble understanding some conversations when there is a lot of back ground noise present, and sometimes I have troubled hearing conversations on TV.. I though I read somewhere where the small bone and joints in the ears can be damaged in persons with EDS. I can not remember if I read that or made it up. I ask because my Geneticist kept asking when my last hearing test was and if I had hearing problems. I should have asked her more questions about it. Is hearing loss a concern in EDSers?
Thanks,
ShondaShonda, Hydrocephalus can cause this problem, as can Sticker’s. I’m sorry I don’t recall if you have hydrocephalus? Some of us with EDS have “super-sonic” hearing!! 😉
Hi Dr. Diana,
I will find out soon if I have hydrocephalus. I have an MRI tomorrow. I believe I do. After filling out your symptom check list I had all the symptoms. Plus I always have a fullness in my ears and head. My son also has extreme noise sensitivities. He is always plugging his ears. He and I both are always in search of a quiet place.
Shonda
Hi Dr. Diana,
I will find out soon if I have hydrocephalus. I have an MRI tomorrow. I believe I do. After filling out your symptom check list I had all the symptoms. Plus I always have a fullness in my ears and head. My son also has extreme noise sensitivities. He is always plugging his ears. He and I both are always in search of a quiet place.
Shonda
Hi Shonda, Please don’t forget a copy of your MRI disc while you’re there, OK? Then we’ll arrange a visit to the specialist with everything in hand and get you started. As far as the MRI report, we can almost just throw it away, if we’re expecting the radiologist to pick this up! This is one reason we’re running the study — to gently remind the doctors about this “forgotten” form of hydrocephalus. The other reason is to run these special tests on the eyes to see if we can get some objective measure of this pressure. We really should try to avoid lumbar punctures (they don’t heal well with us, and they can cause a Chiari — Yikes). I can hardly wait to get you started!!!! 😉
Wow I did not know that a LP could cause Chiari. I had a LP in 2007 when I had a brain bleed. After the LP everything went south for me. Of course the ED doctor failed to do an opening pressure. Later my Neurologist wanted me to do a repeat LP. I told him so sad to bad , but I was not going to volunteer for another one unless it was a medical emergency. After the LP I could not sit up right for weeks and I was left with a headache that lasted nine months. None of the stupid doctors could find the source of the bleed or decide if they should do a blood patch. Now I know that the bleed and all the complications were because of EDS. Still I can’t believe that not a one of them could figure it out.
ShondaWow I did not know that a LP could cause Chiari. I had a LP in 2007 when I had a brain bleed. After the LP everything went south for me. Of course the ED doctor failed to do an opening pressure. Later my Neurologist wanted me to do a repeat LP. I told him so sad to bad , but I was not going to volunteer for another one unless it was a medical emergency. After the LP I could not sit up right for weeks and I was left with a headache that lasted nine months. None of the stupid doctors could find the source of the bleed or decide if they should do a blood patch. Now I know that the bleed and all the complications were because of EDS. Still I can’t believe that not a one of them could figure it out.
ShondaWow, Shonda, that is horrifying! That is sort of medicine 101, you know? Even with blood patches, many of us don’t heal right… Some of us sprout leaks without punctures! I’m actually quite horrified to hear that they didn’t ‘get’ it. None months? Gads….
It was an ordeal to say the least, and I spent those months wishing I had just died. Because of the pain and swelling I was put on high does steroids. It was not long until I was thrown in to full blown Cushing’s. I gained so much weight. I did not even look like myself, and my memory from those months is still vague. I was just existing, and by the end of that year I could no longer work. Between the headache, Cushing’s, and my bad knees I could not function. I needed knee surgery and I went off the steroids and I think maybe that in conjunction with the anesthesia needed for the knee surgery ended the headache cycle. To this day I really don’t know what made the headache stop. I have always been prone to migraines/headaches and I still get them.
Shonda
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