Mobile development & webdesign
Hi there,
If your interested in my story on Microtia, Atresia repair, you’ve come to the right place.
Over the next couple of month I’ll post my story and my expirences when I go the USA to get my right ear canal reconstructed by Dr. Roberson at The Ear Institute in California.
In the menu above this post is link to some small videos I will make along the way. And you can use the menu on the right for navigation.
All the best,
Jakob
I’ll post relevant links, hope you’ll find them useful:
Article on the importance of two ears:
http://www.atresiarepair.com/education-single-sided-hearing-loss.html
European Microtia and Atresia group on facebook:
https://www.facebook.com/groups/544526898947447/
It’s been a while since my last post. That’s mainly because I’ve been extremely busy with two kids and a new job as iOS Developer.
Right side sound processing:
I think my right side hearing has reached it’s max and my head is slowly getting used to sounds coming directly from the right. It’s clear that since I got the operation so late in my life my head has learnt that sound mainly comes from the left ear. So when the canal was done and sounds started to arrive I often get a bit confused and sometime slightly dizzy, simply because my brain doesn’t know right away how to process the sound signals from the right side. Now that’s said I sense that the processing part is getting better and better, it’s really fun, fantastic and sometime also challenging.
The right side sound:
I’m often asked “so, how dos it sound, that new ear” ? My first response is always “well, it sounds amazing” Because that’s how I feel about it. But there’s obviously more to it and I’ll try and explain it here.
First off I’m 25dB ‘short’ from my left ear, that’s means that some details in sounds are missing, if I was only to hear the sounds with my right ear some sounds of low volume would be lost. For this I quickly after the operation found out how the ears corporate and where one takes over when the other lacks. In situations with lots of noise or many people talking I can now navigate through the different sounds and focus on the conversation or sound I want to. Also speech and other language’s is much easier to understand now while speech goes very clear through the right ear also when it’s not coming directly from the right. Also the sense of sound direction is almost if not 100%
The isolated sound, when I put a finger in my left ear, or lay on a pillow with my left ear down. Tent to be more nasal and with less loudness than the left. Other than that it sounds the same. I think the difference where bigger in the beginning but now it evens out more and more. Also my subjective experience of the sound doesn’t correspond to the audiograms, which states that the hearing is right below my left ear. I don’t think about it when I play with my band, the new fullness in the sound from two ears is just so great I got use to it right away and its such a joy!
After care
I’ve been to 2 cleaning sessions since I came back from US in January, there has been a little material that needed to be sucked out other than that everything looks great and feels great to. I don’t think I have any pain nerves in the new ear canal so the cleaning is only a very loud noise with no pains, that’s quite nice. The local ENT doctor suggested that I schedule half year appointments so he can follow my ear and clean the it if needed. I feel comfortable to have found a Danish ENT doctor that wants to treat me and don’t think I was a fool getting this operation done and thinks I was wise and brave to believe in the operation and the fantastic result.
I got the opportunity to get a new audiogram done today. It revealed some improvements but also some areas where the last test where better.
The doctor cleaned my ear and found a little unhealed spot on the eardrum that he treated, which could be some of the cause for the diversity in the audiograms. The doctor and I discussed the situation where I had to pay for the whole operation in USA myself and he agreed that from the initial evaluations (Jharsdofer scale, I’m a grade 9) – reconstruction of the ear canal was the right treatment for me. But he couldn’t help me with the granting that the Danish helthcare system could pay for treatment abroad. But that fight is far from over, I’m determined to try my case in court, it’s come to my attention that other danes have gotten the treatment paied, so why should’nt I?
Well, Back to the good stuff, my ear canal is totally healed and the spot the doctor found will self heal in a week from now. All is good, my hearing is fantastic and I’m very very happy. Looking forward to see Dr. Roberson this Saturday in Holland!
Im very excited as I’m going to the Microtia conference in the Netherlands this weekend. Where I will get a chance to speak with dr. Roberson and show him my progress. I will also be holding a shot presentation about my experience with Microtia and Atresia. And off cause the surgeries. I’m really looking forward to meet a lot of great people and visit the nederlands, I love that country. I will try a take some pictures during the event and post them on the blog soon.
more info at: http://www.atresiarepair.com/conferences-registration-holland-2015.html
Hearing loss from listening to loud music with ear plugs can be avoided with this simple guide: http://m.huffpost.com/us/entry/6755058
I’ve been meaning to write an update sooner but I wanted to get the appointment with the ENT done before making this update in order to give you the full picture of what has happened so far. And don’t worry everything is fantastic.
Meeting with local doctor
I started out with a visit to my local doctor the 9th of February. He examined my ear and ear canal and was amazed by the result, the ear canal looked clean and almost fully healed he said. I also needed him to make a pre-appointment with the ENT at Gentofte hospital, who Dr. Roberson had recommended to carry out a more detailed examine of my ear and to clean the ear canal if necessary. But as it would properly take a month or two before this ENT would have time to see me, it was recommended that I would find an independent local ENT.
New mold
In the beginning of March the custom mold that Dr. Roberson did before I went home, wouldn’t fit anymore. The ear canal and outer ear had slightly changes shape altogether. And now the mold did hurt when I put it on. Luckily Dr. Roberson and his staff had thought of everything and in the bag I got to take home from there office I found material to make another mold. I got my wife to help me and after seeing the video on how to make a mold on www.atresiarepair.com – we accomplished to make a new mold that fits much better. It was quite hard to make a mold that goes behind the ear, so we went for a mush smaller mold that only takes care for the canal.
Elevation of the ear
The upper ear is well positioned and most of the puffiness and swelling is now gone. But the lower pole just above the ear tip is still tucked into the thick. I did massage the area and lightly bend the ear back and forth doing recovery up until now as the plastic surgeon asked me to do. But it keeps stuck in there… That was not the result I was hoping for and I expect to have a chat with the doctor how did this part for my surgery to hear if he can help me with this last part. As I see it this is the last thing I really need to get right before I can truly say I’m satisfied with the result. On the other hand I’m overall extremely satisfied no dough.
Taking care of the ear canal
Since I got back home I’ve been using some antibacterial drops before putting on the mold at night and I have only experienced small drainage from the canal, there are small spots about 30mm into the canal that still need to heal up fully. I’ve been showering with a cotton ball with Vaseline on it inside the canal to keep it dry up until the 7th of March. Its nice to shower normally again and I just dry out the canal after shower with a clean cotton ball, just to be sure. I’ve been trying different headsets and found that there is really much difference in shapes to fit in the ear canal. And in just a month my ear canal has changes shape so some headphone-buds won’t fit anymore. The ones that fit the best were those with a silicone head that forms easily to the canal shape.
Meeting with local ENT
My local doctor was right the first time slot for the ENT at Gentofte hospital is the 16th of April. Therefor I contacted a local ENT instead just to get a fair check of the ear canal and to be sure everything was okay. He was very impressed and thought the work of Dr. Roberson was amazing. He examined the canal and was very pleased with the shape and how clean it was. He was so amazed that he insisted that we did an audiogram to see the progression.
Early audiogram
First off his conditions for making an audio test/ audiogram was by far optimal. So the test is just an indication and a full and correct audiogram should not be done before the end of April as then it will be about 4 month from my surgery.
The audiogram reviled what I also feel, that my hearing has improved a lot. I went from around 70-80dB to 0-10dB. The ENT was like me very impressed and we agreed that it’s like a miracle… He spoke very highly of the procedure and assured me that I made the right choice by getting the surgery. He even said that I my case the ear canal reconstruction was the only and the right procedure for me from his point of view. It meant the world to me that I finally found a local ENT that approved my decision, simply fantastic experience. I will post a picture of the audiogram as soon as possible.
Hearing and experiences
Overall improved hearing, its so amazing that my hearing keeps improving, nuances in music and speech gets more clear, especially higher notes definition has improved a lot. I have also had a sense of bass frequencies but they are also much clearer now than before. My sense of direction in noise ha improved almost to perfection. I keep putting myself in situations on purpose that I before my surgery was unable to handle. Now I can sit in any chair at a meeting and still hear everybody even while turning my head away an only having to use my right ear. It’s such a joy and I often catch myself smiling because it makes me so happy. Also in bigger crowds with lost of talking I would have been lost before, but now I manage much better, it’s still on of the few situations where my head gets really tired, but I can go longer an longer in noisier environments now than the first weeks after surgery.
My self-esteem has gotten a boost, I’m not constantly thinking of how to stand in a crowd to be able to hear everyone and not having to turn around if someone where to speak to me from the right. I’m quite amazed how much energy I did spend on this earlier… my quality of life has improved tremendously and that was one of the goals when I started off with my journey of Atresia Repair, was to boost med self confidence and my quality of life and it truly has.
Music in Stereo !
Listening and playing music is still a big joy to me. It’s so fantastic to hear music in true stereo. The nuances in audio are amazing and I hear new things in musical pieces that I have known to a long time. I had some very great headphone that’s become my new best friend, they are so great at serving fantastic sound to my two ears.
Playing music is still a bit hard, my guitar sound has changed for me, and I’m still trying to figure out if its for the better or if I need to changes it to make it more like I was before… It’s a great challenge and I’m looing forward spending a lot of hours tuning in my new perception of how my own sound is and should sound in my own stereo world.
Really fantastic video on Med-por
I would have chosen this procedure if I had the choice…
I got home to Denmark all right – It is nice to be back with my family after 3 weeks away.
My hearing as improved alot since my last check with Dr. Roberson. The hearing is still lower than on my left ear and that’s okay. The sounds on the two ears is also different – but it sound more and more alike. I tend to go on small sound adventures and listens to sounds first with my left then with my right ear and lastly with both ears to hear the difference. Its amazing. simply amazing. I love hearing music with headphones and experiencing the stereo world 🙂 On my job I often attend meetings with lots of people and now I can sit in the middle of the room and hear people on both sides. Its so great to not have to turn my head to hear speakers from right side.
At home I thought I knew a lot of sounds, but I can now hear things I couldn’t before or had ignored. A lot of everyday sounds is so loud that I put cotton balls in my ears. I try to get as much sound impression as I can get, but when it comes to noise I’ve become more aware and often put fingers in my ears or leave the room. Its all part of adapting 🙂
When I go play with my band I’ve started off with double protection first form plugs and the hearing protection headphones. It was crazy at first but quickly it felt fantastic to experiencing our much in stereo.
I’m still waiting for my first consultation with a danish ENT doctor. in the meantime I have been to my normal doctor who examined the ear for infections and found that everything looks good.
The outer part of the ear is still recovering and still easily gets swollen. The elevation of the ear tip and lower part of the ear still doesn’t meet my expectation. But the upper part of the ear stays in a good elevated position.
I met with dr. Roberson and he did a check of my ear and cleaned out what’s been leftover from the healing, that opened op the hearing some more, fantastic and joyful. He then made the mold that I need to wear every night for 4 month. It’s made from a two component rubber kind of material that when mixed together it gets hard and stays in shape after 3-5 minutes. It’s also capable of taking care of the ears position as it goes in and around the ear, almost covering it. dr. Roberson told me that the healing is at about 80-90% at this point, so everything is great and as it should.
We agreed to keep in touch over the next months and I will send him both pictures and Audiogram when I get that done. It has been a fantastic experience being here and get treated by such a fantastic person as dr. Roberson I can’t explain how great full I am for what his done for me. Also his amazing staff, they where all so welcoming and helpful. It has truly been an amazing incredible fantastic journey and it’s just at its beginning.
Lastly I met with dr. Schendel how feels comfortable with the healing and position of the ear and thinks that in time the ear will get into the right position and look good, I really hope he is right. Overall I’m happy with the result of the plastic surgery but I would have been fully happy if the position of the lower part of the ear had been more out by now. But the hearing part outshines all the bad.
Now I’ll go catch my flight back to Denmark. Thank you for reading along. I’ll keep writing when time allows it. Because the hearing journey of mine has just begun and there are so many sound situation I need to explore.
Mold:
