Sudden Hearing Loss, Deafness, Cochlear Implant Journey
HTML-код
- Опубликовано: 26 сен 2024
- If you are going through hearing loss in any degree, just know you are not alone. I hope this video serves you in some way, whether that be to comfort you, educate you, motivate you, etc. YOU GOT THIS!
If you are not hard of hearing, you're still welcome here! Thank you for listening to my story and educating yourself about this communication disability. Your efforts are seen and appreciated!
If you have any questions I didn't address in this video, go ahead and comment them below.
Although this is very different than my usual content, I felt it was a story I needed to share. I try to speak out about my hearing loss and advocate for this community as much as I can, but I don't tend to post regular youtube videos on it. Let me know if this is something you'd like to hear more about!
The doctor who conducted my second cochlear implant:
healthcare.uta...
Dr. Neil Patel
Follow me at kathrynannwhite for more updates.
Follow blob_mom for another bilateral CI journey
and/or follow the #cochlearimplant hashtag in order to follow this community.
Helpful FB groups:
/ ciexperiences
/ cochlearimplantusers
/ deafandhoh
/ 1574574379500364 (hearing loss community)
Devices:
www.hearmore.c...
TIP Look up the deaf and hard of hearing services in your area. You might have a community center near you. If you're in SLC, Utah... The Sanderson Community Center for the Deaf and Hard of Hearing is amazing and offers free classes for ASL, lip reading, support groups, and more.
![Frequently asked questions about cochlear implants [CC]](http://i.ytimg.com/vi/KEkXXVz6ht8/mqdefault.jpg)
![Frequently asked questions about cochlear implants [CC]](/img/tr.png)
Thanks for sharing your story. I also lost my hearing in one of my ears suddenly.They claim it was a virus that did the damage. I went 11 years with no hearing in my right side. I tried a Baja with little success. Last April I had to postpone my cochlear implant surgery for two months due to COVID. I finally had the surgery and two weeks later it was activated. After two months of therapy I ended up with 80% hearing in my right ear. Stunning, man does this work. Always stay positive!
How long does it take you before you were able to hear clearly through your CI? I have also been Right ear deaf for 11 years, had the BAHA for ten years, and I’m one and a half months into my CI journey, I am starting to be able to hear, some, (make out words) but it’s still not clear.
Some say that if you have no hearing in one side for more than a decade, then the cochlear implant will not help since the brain cannot process the sounds properly after no hearing for a long period. Also if you have a good hearing on one side isn't it uncomfortable when you listen to a robotic sound in another ear at the same time.
Cichlear implant laganeko bat 100% sun naisakte ho kiya ???
@@veronicaalta9462😊
thank you for your testimony your courage I have been deaf in my right ear for 20 years and the left is starting to go out as well. I am from Belgium and 58 years old...!! Your comment is very encouraging and interesting, thank you very much.
Wow same here I lost my hearing in the right ear over 20 plus years ago I'm waiting for my implant.my left ear is at 20 percent I'm 54
I am seeing this video after my cochlear implants surgery. I had same experiences as you almost. There were so many times I feel like I was so alone. Now it is recovery time for me and waiting for activation day ❤️
Thank you so much Katie for sharing your journey with us . I can totally relate myself to what you have gone thorough. I am yet to get my cochlear implant, but I can see the hope through you! Thanks again!
I've had Menires disease in my right ear and had surgery 25yrs ago so I've been deaf since. At the end of June of this year(2021) I had a major heart attack and was in the hospital a month. About 2 weeks after the attack I woke up and couldn't hear in my right ear and totally deaf. I have a lot of noise(tinnitus) and dizzy to the point I had to learn to walk again and I just turned 58. Was in good health, so I thought. Seeing an audiologist on November 5th to get an evaluation for the cochlear implant. I have never felt so alone not being able to hear.
I'm so sorry Donna. We're all here for you. We can exchange information if you'd like to talk. No pressures though, whatever you're comfortable with. Being alone through this is hard, and I just really hope that things go well for you moving forward. I really hope you get everything you want from your appointment!
Hi Katie. Thanks for sharing your story. I also randomly went deaf about a year and a half ago and received a cochlear implant. I'm in the UK so the process of getting a CI is a bit different and I've made some videos about my experience which might be useful to anyone going through this in the UK. :)
Could you please let me know your details about your videos I got SSD about a year ago and am thinking of getting a coclear implant in UK,I live in Ireland.
I was born profoundly deaf in both ears, and hearing aids helped me for 16 years straight until I lost my hearing COMPLETELY in both ears. I lost my hearing in my left ear back in 2019 and got surgery in July. After surgery. It was activated a month later. I was still wearing a hearing aid on the right ear until January of 2024. I lost my hearing COMPLETELY in that ear due to an ear infection. Now it April of 2024, I’m in the process of getting an another cochlear implant on my right ear and getting my left ear replaced with another implant for stronger magnet. I will be getting Cochlear America’s or Advanced Bionics. Iam currently using an Med-EL in the left ear since 2019. This device helped ear a lot better than hearing aids did. Now it started to drain and not work anymore. If I’m being honest, I actually had residual hearing in my right ear while I still had the ear infection, but it slowly started to fade away and now it just gone.
Thanks so much for sharing your story! I’m waiting for my CI eval currently and am both excited and nervous, it was nice to hear the details about your experience.
Hey Natalia, I appreciate you!! I'm so glad you found this helpful and it gave you a bit of reassurance for your own journey. YOU GOT THIS!!
I wore hearing aids most of my life. Got too deaf in my right ear and also started getting extreme vertigo last two years. Been dealing going to doctors appointments and things. They assume it’s Ménière’s disease and extreme senorineural hearing loss. I have my cochlear implant evaluation in two weeks so I’m really excited :)!
Thank you for sharing your story. I became suddenly deaf as well. I just scheduled an implant. I'm nervous.
Good luck! You will be glad you got this done!!!
Don't do it!
@@acadiestudiowhy did you say that?
Thank you for this. I have progressive hearing loss and hearing aids are slowly not cutting it anymore. This helped a lot.
I’m so so glad it helped in some way, Dakota. ♥️ can you update me along your journey too?
Kathryn - Thank you for your video. It is very helpful. I lost hearing in my left ear 8/1/2019. The ENT diagnosed it as Labrynthitis, and with intense treatment similar to yours, there was no improvement. I tried hearing aids for about 3 years with the left aid broadcasting the sound to the right, hoping some hearing might come back. But the left still tested at 0%. So we decided to go with a unilateral (single side) cochlear implant- surgery 8/16/22; activation 9/14/22. It is amazing! Still a long way to go for understanding sound on the left, but it is certainly making progress.
Thank you for the encouraging video. I look forward to seeing your Instagram posts.
I’m so glad you’re feeling encouraged. Praying for your progression and journey!!
I got labyrinthitis 12/30/22. Getting my CI on 2 weeks! Can't wait. Labyrinthitis is the worse illness. I'm still recovering from the dizziness
@@plantedwithkatie Hi I'm also suffering from both ears when I was born still have problem. Plz where should I go for checking up . Where is best surgeon in ur country, basically I'm from Pakistan
Just now I came across your Yt page and listened to your story of your CI journey! I’m hearing impeared Al my life and since I was 10 years old I got my first hearing aid. When I turned 18 I got my second aid and now I’m almost 45 and maybe needing 1 CI. Because my hearing loss went from explainable loss to complex loss. And the doctors have had trouble finding the right aids for me which was for the first time in my life. So they told me I need a 3 year check up instead of the regular 5 year check up. And in the near future I may need a CI. But I’m pretty concerned about this whole CI thing. I have always heard in the normal way only my hearing was never good. So if I need 1 CI I’m worried about not be able to hear like I always did. It scares me a bit.
I have just experienced rapid hearing loss in my right ear a month ago, and it is devastating to me ! I almost took the final route! Im still trying to figure out what the rest of my life will be like. All I can do is think about this horrible sound in my ear and now Im finding myself beginning to fear that the other ear will do the same. This is very difficult for me.
I just got my hearing tested and I knew I had mild hearing loss before but it's now in the moderate and some severe in high pitches. Low pitches are normal. I will be getting hearing aids but it also scares me that it'll get worse. I think joining communities who been through it and support each other will be a great way to cope with things. I'm still trying to come to terms with things myself.
My hubby is the same, go for a consultation, I highly recommend this. You will get your life back.
@@sct4040 I’m 18 and have hearing in only one ear and nothing was ever tested because my dad didn’t believe me so after 12 years I’m finally looking into why I can’t hear
It has to be fate I found your story! I am in the process of deciding if I want to do CI or stay with hearing aids for a few years before I can’t…. I’m already feeling they aren’t helping me comprehend words/sentences. I lost my hearing(not completely but a majority) when I was 25 & I’m 30 now. It’s been a struggle to accept myself, not going to lie haha. I’m so happy to hear yours! Thank you for sharing and giving me piece of mind while I’m on my journey! 💜💜💜💜
Oh man I’m just now seeing this but so so happy my story helped you in some way!! How is it going now? Did you get the CI’s?
Когда можно умыват волос после операци @@plantedwithkatie
I went deaf in my left ear 5 years ago when I was 18, (now 22), due to a series of infections, all over the body, I did initially having the ringing then it went silent, I had a surgery where they replaced the hearing bones with titanium instead of a cochlear implant, I got some hearing back but I now able to have a hearing aid, as I couldn’t before, they said the damage in my ear was so severe that the 3 hearing bones had eroded and dislocated inside the ear, now in the process of getting a hearing aid to help 😊
I am so sorry about that Chelsie! So glad you still have a positive outlook. Praying for your journey!🙏🏼
Update: i got a hearing aid for my left but i have, had another hearing test, yesterday and now. I am profoundly deaf in both ears.
I’m also death and I also have Cochlears thank you so much for this story and I can lip reading so yeah I love this video but stay safe 🥰👍❤️
The cochlea is not under the device that sticks on magnetically. The place where the external transmitter sticks on magnetically is simply a convenient location for the receiving coil under the scalp. Wires from that location connect to the cochlea, which is more or less straight toward the middle of the head from the ear canal. Glad to hear its working so well for you in terms of speech reception.
I had one of my ears shut off about 3 years ago - but fortunately in my case the other ear was not also affected. Both sides at once is actually very rare.
FWIW, in my case, year by year, I got a bit of hearing back in the affected ear - very slowly and gradually. I am still quite deaf in that ear, but I can understand very loud speech.
I am very glad you shared your story - the fact that the implant let you communicate better relieves some anxiety I have about my good ear failing.
Hi Jim - May I ask if you experience tinnitus in your affected ear?
@@philganser7141 Very much so. Caffeine exaggerates the Tinnitus. And I do love a good strong cup of tea :-(
@@philganser7141 Yep. I can (mostly) tune it out. But it is pretty strong...
@@jimmurphy5355 I see, thanks for your replies. May I ask if you ever experience sound distortions in the affected ear? Like the volume is there but not the clarity, sounds like a broken speaker almost.
@@philganser7141 Yep - that pretty much nails it. Some hearing is back in the failed ear - but along with the sensitivity still being low, the sound is very midrange, with no bass or highs, and very distorted. It does indeed sound like a damaged speaker, with a voice coil that partly burned up, lost it's clean cylindrical shape, and is now rubbing and binding in the gap it is in.
Thank you for this video! I’m getting my surgery this month!
It was interesting to hear your story. I was born profoundly deaf, I wore hearing aids until my early teens (12/13 years old) So I finally could have bi-lateral cochlear implants (I am with Medel Sonnet brand) I live in the UK. I agree with you, it's the best thing to happen. I am so grateful for technology because I can be included since the people I meet is all hearing I only have 3 deaf friends and speak to one regularly. I ended up getting a Hearing Dog (assistance dog that alerts me to sound) I don't know if America have assistance dog like that so maybe worth checking out if you're interested? Having hearing dog helped me for bed time mainly or busy/ loud environment because I can't always pick up some sounds. Thank you for sharing your story!
Hello, very interesting and helpful to those profoundly losing their hearing. At 72 years old, I'm scheduled for a cat scan in a week to try to determine what is causing my best ear to diminish rapidly. Did you have scans and did the physicians ever figure out why you lost hearing in both ears? Thanks for posting this video.
Thank you for sharing, great details.
Hi Kate thanks for sharing your experience , I have the same experience, its been 2months since I lost my hearing and I was devastated, I am going through several test and doctors and hoping my hearing will come back..
Same, did you have steroids injection??
I am getting my second one soon
Thank you Katie
For sharing your story...
I am deaf on my left ear, I don't hear nothing and my right ear comes and goes. I was recommended to get thw implants but I am very scared...
But I want to hear...
Lost my hearing about 6 years ago...
Thank you
Is your right ear normal now?
you know I don't know what is wrong or if there is really something wrong but sometimes my hearing will just cut out but always comes back more of less, I have this intense reining in my ears and I can't seem to hear people with deep voices. but I think you gave me some insight.
I experienced sudden lost of hearing on my left ear about 20 years ago. Doctors found nothing wrong and ultimately started having ringing on the same ear.
Now I know when I am around some dogs or in homes with dogs, when I have to work on a dusty room or where salt dust in winter collects or when gardening (pulling weeds), my left ear totally clogs and that can last weeks or months until I'm able to hear a bit. Don't have common symptoms of allergies (watery/puffy eyes, runny nose) but always react this way to these allergens.
When this first happened to me I had just adopted a beautiful cat who lived with us for 18 years.
Thanks for sharing!
Katie, what are your thoughts about getting a cochlear implant for the sole purpose of alleviating tinnitus sounds? I appreciate your openness in sharing your life with us all btw! Thank you!!
You're incredible bless your for sharing your story. Wondering if you had tinnitus at all before the implants? And if you did, we're the implants affective at removing the sounds?
Hey thank you for sharing this I had a very recent experience of this and it made my anxiety and depression go quite bad because out of nowhere I felt dizzy and nausea then really weak then developed tinnitus in my right ear I went to the doctor and my right middle ear is swollen and I’m waiting for an ENT but I got very nervous that my life would not have any more value
1) your doctors must deal with the inflammation 2) hearing aids and a possible cochlear implant will give you your life back. Hubby was dizzy, nauseous, has tinnitus. I am looking forward to this surgery for him in 1-1/2 weeks. Excited.
Btw, you might need vestibular therapy for the dizziness.
I can feel your pain Being deaf 😔
I’m sorry sataro! Praying for you!🙏🏼♥️
@@plantedwithkatie Thank You My surgery is after 2 months Insh Allah
Hey, I liked this video and where is next 2nd video ?
Hi Katie - Glad to see you're doing well, thanks so much for your story. I was just wondering if you have constant tinnitus/ringing in ears still? Did that ever go away? If not, how are you doing with it/how have you habituated to it, etc? Thank you!
Hey phil! I used to have terrible tinnitus (like a freight train) and quite literally thought I would go insane from it. I change my diet by going plant-based and since then it has lowered over time. When I got my cochlears, it completely disappears because I think my brain focuses more on the sound and voices coming through. I noticed this to a smaller degree when I had hearing aids but cochlear was a gamechanger for it.
That being said, if you’re not in a position to get a CI; try to manage stress, lower sodium, caffeine, and increase fruits & veg is your best bet.
@@plantedwithkatie Awesome thanks so much Katie - Wish you the best!
your an inspiration i am in the process of trying to get a coclear implant.just one question how does music sound Thanks Tony.
You said listening to audio books and reading along helped with speech recognition. What helped with music recognition? Did you listen to songs you remembered? Simple stuff? Happy Birthday, Jingle Bells, etc?
Definitely had to listen to familiar music only at first because I couldn’t quite make out the tune or words. Then as time progressed I was able to listen to newer songs and pick up on the tune/words!
@@plantedwithkatie hello 😊! I hope you are doing well. I'm very proud of you! You are a brave woman and you are a role model for me. It would be great to see more of your videos. Thank you for sharing such a sensitive and serious story of yours. I wonder if after getting used to the implants, the sound has become a little more natural? And what additional difficulties do you face when wearing implants?
Thanks for sharing your storry. I have a question: Did you have tinnitus before the implants? How did the tinnitus change after afterwards?
So, what caused the hearing loss? It was a stroke or...what did the doctors said? Did they found anything else beside the tierdness form the effort? Something more concludent?
Que ganas te entender para poder ayudar aca en Chile a lss personas con implante coclear
Hiii I just had coachlear implant surgery back in August 2020!!!!!! I made a RUclips video that why I got the surgery!!’
That's amazing! I'm so glad you're doing well. Gonna go check out your video :)
Hi My name is Andrew Joseph Hasty & I am 55 years old & I am a firefighter for Fort Wayne Fire Department & I have been a firefighter for 22 years now & I have been a captain for 14 years now. I am plaining on getting esteem ear implant which it will help me to hear again.
That's amazing, Andrew! My husband is actually in training for firefighting. Mind if I ask how you lost your hearing?
Hey, I'm in Salt Lake City too. I just had my Cochlear Implant two weeks ago and I tested to see if the Kanso 2 would attach #4 magnet. Cannot feel any magnet pull. Cochlear representative said it takes several weeks for the swelling to go down. I do not feel any swelling. A paper click will not even stick. Has anyone experienced this?
Thank you for sharing, I’m a lip reader I go in June for mine, I’m really nervous because I’m afraid I won’t do good at my job during the healing process any suggestions ❤
My left ears I can't here..what to be done fron Mangalore
Hi, I’ve had single sided deafness for 11 years , just got my CI implants activated August 31, still hear a lot of muffling, but slowly making since of it.
Is the muffling supposed to dissipate over time? Or are you supposed to get used to it? Sorry to hear about your situation by the way. I'm glad you got the implant though! Better days are ahead, I'm sure of it.
How does Cochlear implant help with SSD!? I mean will it be difficult for the brain to listen to a sound in two different tones (normal hearing one side and metallic sound on implant side) Does it feel uncomfortable or give you headache? Does cochlear implant help people with nerve damage SSD? Sorry for bothering you with questions, I have been recently affected with SSD and I'm looking for solutions.
우리아들도 인공와우 수술했습니다. 2017년 태어난지 14개월차에 했어요. 요즘 근황 궁금하시면 제 영상에서 확인해주세요 :>
Same symptoms as me. Except ears flip flopped. Doctors eventually said Covid 19 viral infection. Probably vasculitis and/or neuritis. Eye issue Probably uveitis. Same balance issues as well. All auto immune related. Went through so much prednisone in my journey. Recently approved for left side CI. Chose Advanced Bionics system. Right ear has a little hearing left and getting a Phonak Link M hearing aid with the CI system.
It’s Friday today and I lost my hearing on Tuesday. I’m so lost and I can barely understand the world I’m in - I’m a type 1 diabetic and told that this is what probably caused the almost sudden damage to the nerves to my ears. How did u cope initially, like communication with friends, teachers and parents?
I am so sorry Boe! I’m just now seeing this and praying you’re doing ok. How is your journey going now?
It was very hard to adjust at first but I took in the silence of my new world and focused on my relationship with God. Then once I got CI’s I had to cope with being a deaf hearing person and that was a bit strange too. It gets better with time though and you find your place. You are loved regardless!
I also lost my hearing (completely in my right ear) after working out and I was struggling with stress and depression. The doctors have yet to pin poin the reason, is there a way that it was correlated?
I’m so sorry!! That is so hard. It was a perfect storm for me of overworking myself, under-eating, protein toxicity, and probably caught a virus along the way with a weakened immune system.
Were your ears affected due to gym work out?
@lp8688 no I do not believe so, I think that it was a virus I caught, doctors are still unsure but to say exercise did it is a extreme stretch now that I look at it.
Im just starting to go through this ordeal of left and right hearing. I'm in Canada so even if this is an emergency it will take weeks to see an ENT then that will be to late however perhaps my journey will be like yours which sucks as my world is all about music and performing and at the moment it's hard to play because of the weirdness of hearing. So at the end of the day how is hearing for you now. Does it sound like you remember? how much was it for each operation? sadly thanks for the video, traumatized over here and being much older Im worried about my adaptability. Looks like you have done well with your trauma
Hey, how r u doing now? Same here experiencing the same issue and in Canada, the ER system really sucks. They treated my case as ear infection. So I lost the time to get oral steroid or ear drum steroid. And Im still waiting to see an ENT, which they won't consider my case as urgent. And most hospitals don't have an on call ENT. What a joke. Luckily I still have some hearing in my bad ear
@@djshxhsn sorry to hear that, ,yes the system is pitiful at best. What i did was see an audiologist once a week to get tests to show things were getting worse and even with that it took over 3 months to see an ent which led to taking prednisone for a week which was to late
@@DonAlderOfficial So how's life now? Do you have any hearing aids? R u doing well coping with this new normal
@@djshxhsn adapting, jury is still out as to what caused the issue i still have hearing in both ears, lost about 45 db of lower frequencies in the left ear now replaced with brown sound tinittus which makes things really suck and i have the usually severe high loss in both ears. Im just hoping my autoimmune disease chooses to back off but it will be of concern lifelong, It could easily take me to zero hearing. I have vitiligo which attacks the melanocytes where are in the inner ear. I have been trying various hearing aids still making a decision
Are you suffering hearing loss problem in both ears ...Your both ears implant done ....
And she haven't leave a comment about it.... yet. Many people regretted after.
@@acadiestudio ok
I just leave a comment dear not a complaint , sorry please ,
@@acadiestudio I'm too suffering this problem , should I go to surgery or should I come to your friendship 😊
@@acadiestudio I'm searching who can help me as a God form .... I need urgent help in this so I come to you and I leave comment in this blog but you seems anything else.....
Hey dear , listen me carefully, still I'm unmarried and unemployment in these days due to sudden hearing loss and failure after many trying as I can do whatever best to solve this problem so I hope to see you but you seems anything else.....Sorry again dear .... see you...👏😊
This happened to my Girlfriend about 6 months ago. Sudden hearing loss. No explanation. Possible but unconfirmed link to Pfizer jab (20 days earlier).
She is 21.
She is in the process of getting a Cochlear implant. Surgery in October.
The symptoms you described sound exactly the same as hers.
Really speaks to how rushed these vaccines were. I got the Mederna shot, and the first one was alright, but the the second dose sent me to the ER. It was a horrid experience. I'm sorry to hear about your girlfriend. It really sucks that her life changed in this kind of a way, but at least we live in an age where this is an option for her. Sometimes you just have to do your best to move forward and see the bright side of a bad situation. She probably has a long road ahead of her. Keep yourself available always, and hold her hand for this whole thing. These medical devices are miracles, and thank god we have them for when the rest of society fails us.
Hey everyone!
I wanted to reach out to see if anyone here has had a similar experience or can offer some insight. I have asymmetric hearing loss-my right ear is much more damaged than my left. For example, I can pick up lower frequencies better in my right ear, while my left ear struggles with them. On the flip side, higher frequencies are almost nonexistent in my right ear, but I can hear them pretty well in my left.
I'm currently on the path to getting a cochlear implant (CI) and have been advised to go for the CI in my right ear while continuing to use a hearing aid in my left. My main concern is the potential discomfort that might come from hearing "natural" sound in my left ear through the hearing aid and the more "robotic" sound from the CI in my right ear.
Has anyone here gone through something similar? I'd love to hear about your experiences and any advice you might have! Thanks in advance!
❤️
Hi
Hey friend!
😍
Cochlear Implant is the worst decision that you ever done and it is VERY dangerous. Educating yourself to learn more about Deaf community that they are NOT disability.
Can you elaborate on this opinion?
@@jacquelinebermudez536No one listens to the deaf community because they don't understand how that cochlear implant works. I'm lowercase deaf, and 25 years old. I wore Nucleus 7 and I spoke with a lot of hearing friends outside. There was no problem. I grew up in Memphis Oral School for the Deaf.
Oh I learned Cued Speech (Cued Language Transliteration) for 3 weeks lol!
@@SC_jamesbond007jua still not sure why the cochlear implant is dangerous. I am half deaf. Starting losing hearing in my left ear at the age of 26 and now at 45 my left ear is profoundly deaf. I'm considering a cochlear implant because hearing aids don't work for me. I need to understand the opinion of why it is dangerous. My right ear works perfectly fine, but it would be nice to not struggle with my left side.
@@jacquelinebermudez536 I think you choose Baha SoundArc (Non surgical) instead of the cochlear implant if you don’t want surgical
Hola😊😊😊
Does your implant sound like normal sounds now or does it sound different to before still ??? I am scared to have implants but I’m struggling with my hearing aids
I'm wondering about this too. Have you found the answer since posting that question? I have an upcoming doctors appointment regarding a cochlear implant on the 27th. I'll ask about it if anything and tell you what they tell me.
Not really. Many Deaf people who had that was immediately regret. Stick to hearing aids which is safe and no surgery at all.
Hi, Kate! 😊
Sorry for this comment after a years. But I hope you will answer it honestly. The implant and music. Is it really as horrible as everyone says? I'm wondering what your personal experience with this is and what you think?
Oh, it is horrible. Many do not want to tell the truth. I tell you. It's very dangerous. Please do your homework first before farther to have a surgery or not. I wouldn't do that.. ever.
THANK YOU for sharing your story! You are an inspiration to all going through this. I was just diagnosed with SHNL and it’s tough. Considering cochlear implants. Thank you! Did you have to cut or shave your hair down to your scalp for surgery?
Hello Katie thank you for sharing your story I have a question you said you also had inflammation of the eye I was diagnosed with a rear autoimmune call Cogan’s Syndrome (inflammation of the eye, red eye, sensitive to the light, and sudden hearing loss) have you ever been diagnosed with Cogans Syndrome?
That is what we have been leaning towards but not officially diagnosed! My eyes haven’t flared up for months now but gosh that was the worst! How is yours now?