I realize (sheepishly) that my last few posts really aren't all that wonderful or reflective of the life I have with the Esteem. I've been pretty self-absorbed in the "poor me" aspect of it and wanted to put out there that I really am not that disadvantaged because of the complications I'm experiencing. While I muddle through the frustrating and not so fun part of the implant surgery and revision, I also want to point out the good. I still love being free. Free to shower, free to exercise, free to swim and play in the rain. Free to sleep at night and hold a quiet conversation with my husband before falling asleep. Free from constantly changing dead batteries or always buying batteries. Free to turn my ear off completely should I need to veg from the hearing world. I have so many good options!
My hearing is at least as good as, if not just a little better than aided hearing. Although I can only be on level 2 or lower, it is functional and I don't struggle terribly. I did a little experiementing too while listening to certain far away or quiet noises. Things like my cat purring, or birds chirping off in the distance, or the clock ticking. I plugged my Esteem ear to see if I could hear these noises with my hearing aided ear and I could not. So these little noises I'm picking up with the Esteem are confirming that I still have gained something, despite the fact it's not perfect. I am frustrated and joyful all at the same time. For every bad thing, there is certainly a good thing too. Just a gentle reminder to myself that the implant really is a blessing, it's just the hiccups along the way, the side effects of the surgeries, that are preventing the complete joy of the implant's full potential.
Monday, March 4, 2013
Friday, March 1, 2013
Dizzy
Not a whole lot of change. I have been notably dizzy though. Off and on since the last few months, but especially since early on in recovery from the removal of adhesions. It's vertigo like symptoms, minus the nausea and vomiting. If I lay down, the room spins. If I roll over in bed, the room spins. Sometimes just standing and looking up can cause a violent whirling around me and I have to steady myself by grabbing something. Even noticed that if I'm really tired/fatigued, certain ringtones or higher frequency noises will make me feel lightheaded. The symptoms only last several seconds thankfully, but I am starting to become concerned that it's not going away.
Hearing is still decreased
Ear still feels full
Occasional ear pain
Right sided migraines
Vertigo like symptoms
Occasional autophony
Feedback and whistley tones in programs 3 and higher
Hearing is still decreased
Ear still feels full
Occasional ear pain
Right sided migraines
Vertigo like symptoms
Occasional autophony
Feedback and whistley tones in programs 3 and higher
Monday, February 25, 2013
Waiting, waiting...
I saw Dr. K last Friday. He determined my ear looks healthy, but does feel based on my description of my prior symptoms that I did have an ear infection most likely. He thinks it's lingering and not quite all gone, so he put me on a 2 week, twice a day antibiotic (Augmentin) and then I will come back when it's finished to get a hearing test and follow up with him.
He's also putting me on a new steroid nasal spray, Qnasl. It's an aerosol mist instead of liquid spray. I really like it a lot better. This will hopefully continue to help with swelling in my ear and help keep the eustachian tube functioning better.
One thing he did notice is that my eardrum is retracted on my stapes. He's not sure if this is causing my issues or not. He feels my adhesions probably are coming back. At this point, if that is the case, we both agree that no further surgery should be done to my ear as I am making too much scar tissue as is. I emailed an FYI to Dr. S so he is in the loop too. Hopefully I'll have good concrete info to update with when I go back for my hearing exam.
I'm on day 4 of the antibiotic and it feels slightly less full/pressure in my ear.
He's also putting me on a new steroid nasal spray, Qnasl. It's an aerosol mist instead of liquid spray. I really like it a lot better. This will hopefully continue to help with swelling in my ear and help keep the eustachian tube functioning better.
One thing he did notice is that my eardrum is retracted on my stapes. He's not sure if this is causing my issues or not. He feels my adhesions probably are coming back. At this point, if that is the case, we both agree that no further surgery should be done to my ear as I am making too much scar tissue as is. I emailed an FYI to Dr. S so he is in the loop too. Hopefully I'll have good concrete info to update with when I go back for my hearing exam.
I'm on day 4 of the antibiotic and it feels slightly less full/pressure in my ear.
Monday, February 11, 2013
Back To Square 1
Down to C2 again. Everything at 3 and higher sounds too whistley again, and at night when I lie down on the Esteem side I start to get feedback...ugh!!!!! I'm not sure at this point what to do. I guess the first step is going to be emailing Dr. S just to let him know and getting in to see Dr. K to see if there is anything wrong with the ear.
Decrease in function of Esteem
Vertigo like symptoms (room/floor seems to tilt and spin)
Ear feels really full
Some ear pain, a little achy and sharp
Ear pain when blowing my nose
Occassional headache only on my right side and right behind my eye and above ear.
Small amount of bloody discharge on my pillow a little over a week ago.
Decrease in function of Esteem
Vertigo like symptoms (room/floor seems to tilt and spin)
Ear feels really full
Some ear pain, a little achy and sharp
Ear pain when blowing my nose
Occassional headache only on my right side and right behind my eye and above ear.
Small amount of bloody discharge on my pillow a little over a week ago.
Saturday, February 9, 2013
Setback
I had a bit of a setback since the last post. A few weeks ago, I started getting noticable swelling of my right cheek and also had either a really bad cold or sinusitis/ear infection. One of the doctors I work with looked at my eardrum too and she said it was really red, but no fluid that she could see. It really started to affect my hearing and I had to put the Esteem on C1 and get a z-pak antibiotic. The antibiotic helped, along with a slew of other meds like flonase, Zyrtec-D, dayquil, nyquil, and mucinex. Since then the swelling has gone away as well as the cold/infection, but I still have dizziness and the sense of fullness or fluid in my ear. I have been able to get to C3 most of the time but even that is pushing it. I'm getting a lot of the same shrill sounds that I had prior to the scar tissue removal surgery. I will admit, I'm frustrated. There doesn't seem to be a whole lot of sense in getting an adjustment yet either because the West Bloomfield audiologist is not trained to adjust, so it would be an Envoy engineer. Audiologists are better at knowing what works for hearing. I'm kind of at the mercy of Envoy for that.
I am pretty sure I also have a dysfunctional eustachian tube, which I think was the case even before I had the Esteem implanted. I'm just noticing it a lot more now that the Esteem is in. I think it stays open when it's not supposed to, and then my breathing sounds like it's in my ear and I can't stand the sound of my voice because it's also right in my ear and so loud. Swallowing or chewing gum doesn't relieve it. It just eventually goes away on it's own.
I feel so bad complaining since I am pretty fortunate overall. The convenience is still so wonderful and I am so grateful to be able to hear all the time.
I am pretty sure I also have a dysfunctional eustachian tube, which I think was the case even before I had the Esteem implanted. I'm just noticing it a lot more now that the Esteem is in. I think it stays open when it's not supposed to, and then my breathing sounds like it's in my ear and I can't stand the sound of my voice because it's also right in my ear and so loud. Swallowing or chewing gum doesn't relieve it. It just eventually goes away on it's own.
I feel so bad complaining since I am pretty fortunate overall. The convenience is still so wonderful and I am so grateful to be able to hear all the time.
Tuesday, January 8, 2013
I'm W-hole
I followed up with Dr. K today to check on the status of the hole in my eardrum and great news to report! The hole has completely healed, the paper patch has been removed and he said the eardrum is so clear he can see into my middle ear and identify the prothesis and stapes, etc. He said there is very minimal scarring and things couldn't look better. There is no fluid and no swelling either. I asked about the lingering achy, slightly sharp pains that I'm getting and he said based on how the eardrum looks (which is great) it's likely still healing. It has only been 5.5 weeks so that makes sense, and the pain really isn't pain, it's very manageable and I don't need to take anything for it.
I'm still hearing very well but have been slacking on really listening and being aware of my surroundings when people are talking, because a few times I've been caught "daydreaming" and asking "what?" a lot again. Old habits are hard to break...
The only negatives, if I can call them that, are that I'm getting significant feedback when I blow my nose everytime and some of my own internal noises are slightly shrill sometimes. But, being that these were noticed a couple weeks ago and nothing else has come up, I'm feeling pretty confident that this is the worst of it!
My next plan of action now is to set up an adjustment in West Bloomfield and get adjusted properly for what my ear is able to hear now, without the scar tissue impeding it. I think insurance would cover the audiologist visit at HFWB hospital, so I'm hoping that all I'd have to pay is the $40 copay and use my "one" visit they granted me to follow up with Dr. S as well.
As of now, this is what I use for settings since the removal of adhesions:
Daytime/everyday settings - C4
Sleeping/showering - C2
I am still in a learning curve and don't recognize a lot of sounds I hear now, but the important thing is, I'm hearing them! It's up to me to learn what I'm hearing and to learn to pay attention to my surroundings now. I've "tuned out" for 30 years and now I need to retrain my brain to tune in. Luckily, it won't take a lot of effort since the Esteem has taken the work out of hearing. It feels good to be w-hole :)
I'm still hearing very well but have been slacking on really listening and being aware of my surroundings when people are talking, because a few times I've been caught "daydreaming" and asking "what?" a lot again. Old habits are hard to break...
The only negatives, if I can call them that, are that I'm getting significant feedback when I blow my nose everytime and some of my own internal noises are slightly shrill sometimes. But, being that these were noticed a couple weeks ago and nothing else has come up, I'm feeling pretty confident that this is the worst of it!
My next plan of action now is to set up an adjustment in West Bloomfield and get adjusted properly for what my ear is able to hear now, without the scar tissue impeding it. I think insurance would cover the audiologist visit at HFWB hospital, so I'm hoping that all I'd have to pay is the $40 copay and use my "one" visit they granted me to follow up with Dr. S as well.
As of now, this is what I use for settings since the removal of adhesions:
Daytime/everyday settings - C4
Sleeping/showering - C2
I am still in a learning curve and don't recognize a lot of sounds I hear now, but the important thing is, I'm hearing them! It's up to me to learn what I'm hearing and to learn to pay attention to my surroundings now. I've "tuned out" for 30 years and now I need to retrain my brain to tune in. Luckily, it won't take a lot of effort since the Esteem has taken the work out of hearing. It feels good to be w-hole :)
Saturday, December 29, 2012
One Month Post Scar Tissue Removal
Merry Christmas all, and Happy New Year! Today I'm one month post op and things are still going relatively well. My ear still feels a bit congested, and still has the sound and feeling of fluid in the ear.
Whenever I sleep on the Esteem side it feels like my ear fills up with fluid and when I lift my head there is a feeling of suction or inward pressure and a pop that releases the pressure and then a second "normal" pop. I asked Dr. S about this and he thinks it sounds like the eardrum is healing, so alright! I'll take that!
I have noticed a slight shrill sound associated with myself, my internal noises, and louder high pitched noises again, which I'm guessing is scar tissue forming. I hope that it isn't going to get worse than this. I go about on C4 for my daily routine and turn it down to C2 at bedtime, and this seems to work well. I like C5, but the sounds that I notice are shrill are magnified so much at this level that it just isn't enjoyable to stay on.
I blew my nose gently for the first time this past week and had major feedback. That sounded awful! I'm also still showering with a cotton ball covered in vaseline in my ear until I see Dr. K again (Jan. 9th) to determine if the hole has healed in my eardrum.
One good thing to note is that my PCP requested that my insurance pay for me to have a covered visit with Dr. S and they agreed for ONE visit approved through mid March, and then from there they would need to be notified again if I needed to be seen by Dr. S to decide if they'll pay for more visits. I'm crossing my fingers that this will open the door to them paying for the Esteem on my left ear eventually.
I still have several more weeks of healing left to do and potentially my hearing could go one of 3 ways; worse, status quo, or better. I'll be very happy with status quo or better! God has blessed me with a very caring and talented surgeon who has stayed with me every step of the way and much better hearing than I could have dreamed.
Whenever I sleep on the Esteem side it feels like my ear fills up with fluid and when I lift my head there is a feeling of suction or inward pressure and a pop that releases the pressure and then a second "normal" pop. I asked Dr. S about this and he thinks it sounds like the eardrum is healing, so alright! I'll take that!
I have noticed a slight shrill sound associated with myself, my internal noises, and louder high pitched noises again, which I'm guessing is scar tissue forming. I hope that it isn't going to get worse than this. I go about on C4 for my daily routine and turn it down to C2 at bedtime, and this seems to work well. I like C5, but the sounds that I notice are shrill are magnified so much at this level that it just isn't enjoyable to stay on.
I blew my nose gently for the first time this past week and had major feedback. That sounded awful! I'm also still showering with a cotton ball covered in vaseline in my ear until I see Dr. K again (Jan. 9th) to determine if the hole has healed in my eardrum.
One good thing to note is that my PCP requested that my insurance pay for me to have a covered visit with Dr. S and they agreed for ONE visit approved through mid March, and then from there they would need to be notified again if I needed to be seen by Dr. S to decide if they'll pay for more visits. I'm crossing my fingers that this will open the door to them paying for the Esteem on my left ear eventually.
I still have several more weeks of healing left to do and potentially my hearing could go one of 3 ways; worse, status quo, or better. I'll be very happy with status quo or better! God has blessed me with a very caring and talented surgeon who has stayed with me every step of the way and much better hearing than I could have dreamed.
Saturday, December 22, 2012
Amazement
I put my device on level C2 for bedtime because I'm a really light sleeper and my hair makes too much noise against the pillow when I sleep on the Esteem side and our furnace kicks on every 6-7 minutes (it's COLD in Michigan). These noises keep waking me up, so taking my Esteem from C4 to C2 makes it more tolerable and I sleep better. I can still hear, just not so acutely :)
What I'm amazed by is that C2 used to be what I was on all the time, and at the time I thought I was hearing fairly well. Now that I've had the adhesions removed and can enjoy C4 and 5, C2 sounds so quiet! As in, I strain to hear, quiet. It is and was actually "work" to hear. With C4 I'm very relaxed and don't work to hear. It isn't as exhausting in social situations to stay in the conversation, and for that I am so thankful and blessed.
At work eating in the cafeteria was always confusing and frustrating due to the noise level. Now it is enjoyable again and I can follow and understand conversation much easier since the noise is not so distracting and roaring in my ear. And the volume is down to nearly the quietest level on my phone in my office, and all voices so far are easy to understand.
It's been an amazing 11 days since I turned the Esteem back on. Merry Christmas everyone :)
What I'm amazed by is that C2 used to be what I was on all the time, and at the time I thought I was hearing fairly well. Now that I've had the adhesions removed and can enjoy C4 and 5, C2 sounds so quiet! As in, I strain to hear, quiet. It is and was actually "work" to hear. With C4 I'm very relaxed and don't work to hear. It isn't as exhausting in social situations to stay in the conversation, and for that I am so thankful and blessed.
At work eating in the cafeteria was always confusing and frustrating due to the noise level. Now it is enjoyable again and I can follow and understand conversation much easier since the noise is not so distracting and roaring in my ear. And the volume is down to nearly the quietest level on my phone in my office, and all voices so far are easy to understand.
It's been an amazing 11 days since I turned the Esteem back on. Merry Christmas everyone :)
Monday, December 17, 2012
Finally, 5!
I have conquered level 5! I decided to bump up to the final level today and so glad I did. I can't believe how much the scar tissue impeded my hearing before. I finally understand the true miracle this device is! Although 5 is loud (!) I think I'll be using it and 4 the most. 4 is comfortable but 5 has umph ;)
For instance:
I heard my husband's feet hitting the treadmill in the basement while I was on the main level with the TV on! Tell me that isn't cool?! I started paying attention to TV conversation today, and I am catching probably 95% of what's being said. Wow! There is still room for improvement too, so I'm going to work at really training myself to recognize words.
My ear at this point feels pretty good. I still have a slight fullness in it, which I guess is probably due to healing. I'm also finding myself swallowing a lot to pop my ear, which helps relieve the pressure but only lasts a very short time. I don't think the hole is affecting the sound, but then how could I know, as I was not benefiting from the Esteem in full anyway? I have no way to know either about the 35 dB gain I got back but maybe it's hearing things like what I mentioned above about my hubby running?
Anyway, so pleased at the outcome for now. I am so happy I was allowed to turn it back on before going back to work which will be in 3 days.
For instance:
I heard my husband's feet hitting the treadmill in the basement while I was on the main level with the TV on! Tell me that isn't cool?! I started paying attention to TV conversation today, and I am catching probably 95% of what's being said. Wow! There is still room for improvement too, so I'm going to work at really training myself to recognize words.
My ear at this point feels pretty good. I still have a slight fullness in it, which I guess is probably due to healing. I'm also finding myself swallowing a lot to pop my ear, which helps relieve the pressure but only lasts a very short time. I don't think the hole is affecting the sound, but then how could I know, as I was not benefiting from the Esteem in full anyway? I have no way to know either about the 35 dB gain I got back but maybe it's hearing things like what I mentioned above about my hubby running?
Anyway, so pleased at the outcome for now. I am so happy I was allowed to turn it back on before going back to work which will be in 3 days.
Sunday, December 16, 2012
4 For 4!
Bumped up to level 4 today after church and again, going well :) I am confident level 5 will be just fine too. I'm using my eveyday setting which is C. For church I had to go back down to level 2, but when I got home I went for my forth program bump and 4 is great. I heard my phone text sound, a quiet swooshing, from 4 rooms away! I kinda feel like I have a secret agent ear, haha :) I haven't been paying attention to how well I'm understanding speech though. I don't think I've been saying "what?" or "huh?" very much. Once I get settled into level 5 I'll start paying more attention to that detail.
I'm cautiously optimistic that this will last and be able to maintain the clearer less screechy sound. However, I say cautious because the growth of scar tissue happens over time and if I grow a lot again then I'm worried I'll notice a decrease in quality of sound. But, I'm determined to enjoy how amazing it sounds now! And as Dr. Seidman stresses, think positive thoughts to promote good healing. I can do that!
I'm cautiously optimistic that this will last and be able to maintain the clearer less screechy sound. However, I say cautious because the growth of scar tissue happens over time and if I grow a lot again then I'm worried I'll notice a decrease in quality of sound. But, I'm determined to enjoy how amazing it sounds now! And as Dr. Seidman stresses, think positive thoughts to promote good healing. I can do that!
Friday, December 14, 2012
Good Progress
I'm enjoying and tolerating level C3! Yeah! This is going very, very well considering. I shot an email off to Dr. Seidman that I turned on the device earlier than instructed and although he "scolded" me, he was pretty excited things are looking up.
I plan to try level C4 either tomorrow night or Sunday. I will be elated if I can tolerate C4!
TBD...
I plan to try level C4 either tomorrow night or Sunday. I will be elated if I can tolerate C4!
TBD...
Thursday, December 13, 2012
2 Weeks Post Op
Two weeks, and I've hit the mark where I can turn on my device. I actually turned it on Monday evening, just out of curiosity since the packing was out...at first everything sounded really bad, kinda like a wind rushing noise. But I forgot to query, so I did, and that made it better. But I was on C2, and it was too loud, so I switched it down to C0 and that was really tolerable! I've been "on" since! And now at 2 weeks post today, I'm comfortably at C2. I tried C3 but it is too loud and actually seemed to make my eardrum ache, so back to C2. Everything sounds normal so far, a little fluid and ear congestion but nothing too bad as yet. And my tinnitus isn't so distracting now, whew! Hoping in the next couple days to get used to C3 as I've never had success getting past it or staying on it. I know that I have to keep in mind that the ear is still healing from surgery AND I have a hole, so those will affect my hearing quality but so far, it's not too bad. Anything is better than lopsided hearing :)
Monday, December 10, 2012
Hole-y Eardrum!
Today the packing came out of my ear. Not an uncomfortable procedure at all! I saw my hometown ENT so I didn't have to drive to Detroit to see Dr. Seidman for a short time only to turn around and drive another 3.5 hrs home. I'm 11 days post op now.
Dr. K removed my packing and cleaned my ear for me. He also noted a 2-3 mm hole in my eardrum. To be sure he knew what needed to be done, he called and spoke with Dr. Seidman and between the two of them, decided that a paper patch would be best. He performed the procedure right then, also not uncomfortable. I'm to follow up with him in 4 weeks to make sure the patch healed the hole. If the hole is still there, Dr. K felt I'd need to go back to Dr. Seidman unless they feel he can do whatever needs to be done. I really don't know at this point what will happen if the hole doesn't heal.
I have been in communication with Dr. Seidman since and I'm to follow restrictions for 2 more weeks (no lifting anything over 10 lbs, sneeze with mouth open, etc) and need to shower with cotton ball covered in vaseline for 4 more weeks until Dr. K can confirm the eardrum has healed. Dr. Seidman did say this likely will affect how the Esteem sounds once I turn it back on. I guess I'll see on Friday.
**Just spoke with Dr. Seidman shortly after writing this. If the eardrum does not heal in four weeks, the next step would be surgery to repair the hole. POSITIVE thoughts only!! Keeping my fingers and toes crossed that the hole heals!
Dr. K removed my packing and cleaned my ear for me. He also noted a 2-3 mm hole in my eardrum. To be sure he knew what needed to be done, he called and spoke with Dr. Seidman and between the two of them, decided that a paper patch would be best. He performed the procedure right then, also not uncomfortable. I'm to follow up with him in 4 weeks to make sure the patch healed the hole. If the hole is still there, Dr. K felt I'd need to go back to Dr. Seidman unless they feel he can do whatever needs to be done. I really don't know at this point what will happen if the hole doesn't heal.
I have been in communication with Dr. Seidman since and I'm to follow restrictions for 2 more weeks (no lifting anything over 10 lbs, sneeze with mouth open, etc) and need to shower with cotton ball covered in vaseline for 4 more weeks until Dr. K can confirm the eardrum has healed. Dr. Seidman did say this likely will affect how the Esteem sounds once I turn it back on. I guess I'll see on Friday.
**Just spoke with Dr. Seidman shortly after writing this. If the eardrum does not heal in four weeks, the next step would be surgery to repair the hole. POSITIVE thoughts only!! Keeping my fingers and toes crossed that the hole heals!
Thursday, December 6, 2012
1 Week Post Transcanal
Sore throat. Check. Ear congestion. Check. However, I one upped the congestion and got some Mucinex-D and that has really helped! Much better than Zyrtec-D ever did. I guess by thinning the secretions it helps to get it out of the sinus cavaties easier vs just drying it up.
The intensity of my throat pain is going down finally and I haven't gotten any fevers. Highest temp over the course of the week was 99.3.
Hearing only out of my left ear is tiring. I feel even more so now since I have had the advantage of the level of the Esteem for a year. I don't feel like being social and I panic when the phone rings! Thankfully I should be able to use my Esteem ear again soon, within the next 2 weeks.
The most annoying thing now is the cotton ball in my ear and slathering it in vaseline everytime I want to shower. Yuck. And itchy! But I have to be careful not to scratch at my ear...ugh! Ear pain is nothing so that's great! Most concerning thought now is, will it feel uncomfortable when the doctor pulls the packing out of my ear??? Details to follow on Monday!
The intensity of my throat pain is going down finally and I haven't gotten any fevers. Highest temp over the course of the week was 99.3.
Hearing only out of my left ear is tiring. I feel even more so now since I have had the advantage of the level of the Esteem for a year. I don't feel like being social and I panic when the phone rings! Thankfully I should be able to use my Esteem ear again soon, within the next 2 weeks.
The most annoying thing now is the cotton ball in my ear and slathering it in vaseline everytime I want to shower. Yuck. And itchy! But I have to be careful not to scratch at my ear...ugh! Ear pain is nothing so that's great! Most concerning thought now is, will it feel uncomfortable when the doctor pulls the packing out of my ear??? Details to follow on Monday!
Monday, December 3, 2012
Post op Day 4 (Monday)
I lied. Today I feel the worst. My throat feels like I've got one giant sharp serrated knife grating up and down in it everytime I swallow or drink and eat. My voice is getting better once it starts getting use. It's pretty scratchy. But really, shouldn't I be feeling better about my throat by now, not consistently worse? And I'm terrified to do anything they warned me not to: sneezing (can sneeze with my mouth open), blowing my nose, lifting more than 10 lbs, being careful how I bend over, and no straining with bowel movements. How easy it is to forget and do any of these things! I haven't sneezed yet, just keeping kleenex on hand for drips, I'm sure I've lifted more than 10 lbs already (oops) and I have been taking mirilax since I got home to help not strain during a BM.
On to better things; Dr. Seidman phoned me the other night to check on me and answer any questions I might have had. He told me the adhesions were rock hard, something he's never really seen before. Leave it to me :) I wanted to know if there was anyway to prevent the adhesions from coming back and of course there is no known way, just hope and pray! I asked about the cotton ball with vaseline during showers and if I could stop with doing that once the packing is out. He wants me to keep that up at least 3-4 weeks just to be sure everything heals and no infections will begin. We went over the pictures and also how exciting it is that my dB gain went from 5 to 35 dB according to the Envoy tech's testing. Turning on the device will be at my comfort and I won't need to see anyone to do it. If I feel I need an adjustment then I can call and set an appt up. Dr. S thinks 3-4 weeks before I'll feel like I can turn it on without interference of fluid, but the Envoy tech wrote 2 weeks, so I'm going to start there! I promised not to get too upset if it didn't sound great right away though.
Looking forward to the 13th :)
On to better things; Dr. Seidman phoned me the other night to check on me and answer any questions I might have had. He told me the adhesions were rock hard, something he's never really seen before. Leave it to me :) I wanted to know if there was anyway to prevent the adhesions from coming back and of course there is no known way, just hope and pray! I asked about the cotton ball with vaseline during showers and if I could stop with doing that once the packing is out. He wants me to keep that up at least 3-4 weeks just to be sure everything heals and no infections will begin. We went over the pictures and also how exciting it is that my dB gain went from 5 to 35 dB according to the Envoy tech's testing. Turning on the device will be at my comfort and I won't need to see anyone to do it. If I feel I need an adjustment then I can call and set an appt up. Dr. S thinks 3-4 weeks before I'll feel like I can turn it on without interference of fluid, but the Envoy tech wrote 2 weeks, so I'm going to start there! I promised not to get too upset if it didn't sound great right away though.
Looking forward to the 13th :)
Saturday, December 1, 2012
Post op Transcanal Day 2 (Saturday)
Ughhh, I almost think I feel worse today than I did yesterday. My throat is so sore I can hardly swallow and I have no voice. My ear just feels full and once in awhile there is a sharp pain in it, but it's managable. I've noticed my tinnitus to be waaaaay worse now that the sound is off in my ear. My taste is once again really metallic and bitter. The post op instructions say this could last days to months!! My guess is that since it was damaged before, it's going to be months. Blech....just when I was getting used to the way things were tasting. I'm not liking this! But at least I have taste at all.
I've changed my cotton ball 3 times now, but the drainage actually isn't much. I hope it won't be uncomfortable to get the packing taken out of my ear! Sleep is still pretty fractured so I'm really fatigued during the day. I think I'm more worn down from the anesthesia this time than the actual Esteem placement surgery.
I am praying my scarring doesn't go crazy this time and actually allows my device to work as it should. Countdown is on til December 13 when I can turn this on!!!
I've changed my cotton ball 3 times now, but the drainage actually isn't much. I hope it won't be uncomfortable to get the packing taken out of my ear! Sleep is still pretty fractured so I'm really fatigued during the day. I think I'm more worn down from the anesthesia this time than the actual Esteem placement surgery.
I am praying my scarring doesn't go crazy this time and actually allows my device to work as it should. Countdown is on til December 13 when I can turn this on!!!
Friday, November 30, 2012
Post-op Transcanal
I had a very good experience yesterday, success to be determined!
My surgery went on time at 2 pm, out of OR at 4:30 and in recovery til 7:30. Dr. Seidman told me it went well but it was right as I was waking up so all I could do was give a half drunk thumbs up. I did not need the full revision, so I still have all my hair!!! (and so does Dr. seidman ;)!!!!) According to what my husband told me, there were a lot of adhesions. Some right on the driver and stapes and some on the ear drum too. He removed it all with a laser (Activate the laaaser...anyone who's seen Austin Powers would appreciate that). Then he also noticed part of the driver was sticking out from the stapes so he recemented it back in place with some Envoy cement.
The Envoy rep that was there tested the device before surgery and said I was only getting a 5 dB gain. Normal is 25-35 dB gain. After surgery it was tested and I had a significant improvement to 35 dB gain! Praise God! Everyone was ecstatic! Results to be determined at 2 weeks when I can turn the Esteem back on. Yep, 2 weeks, not 6-8 like originally thought!! I'm very happy with that. I have packing in my ear that will need to be removed at 10 days post op and Dr. S is kind enough to let me do it at my audiologist who is close to home vs driving 3 hrs to see him for 5 min to remove the packing. Love this guy! He gave me 4 pictures with explanations from the surgery. It was very cool to see.
My pre-op nurse and recovery nurse were amazing! They were so kind and did everything possible to make me feel confortable. After surgery I couldn't pee (I was expecting this) and had to be straight cathed again. My nurse gave me some good advise about this. I should go to my pcp or a urologist and get a signed letter stating I have to have a catheter for all procedures no matter how short or small it is d/t difficulty urinating. It's a good idea. I'll probably see about doing this.
Over all this whole thing was very positive.
I couldn't have had it go any better I think.
The most discomfort I have right now is a sore throat that feels like strep throat from the ET tube and my ear feels like it has a bad ear ache. No neck or shoulder pain like last time. No incisional pain. Instructions are similar to a stapedectomy; no lifting objects over 10 lbs for 4 weeks, no strenuous activity for 4 weeks. I can shower right away but have to have a cotton ball with vaseline in my ear to keep water out of my ear. No blowing my nose and must sneeze with my mouth open for 3-4 weeks. Appt to take out ear packing in 10 days. And the best instructions; don't make anymore adhesions!!!!! Hahaha
I will add the photos here:
My surgery went on time at 2 pm, out of OR at 4:30 and in recovery til 7:30. Dr. Seidman told me it went well but it was right as I was waking up so all I could do was give a half drunk thumbs up. I did not need the full revision, so I still have all my hair!!! (and so does Dr. seidman ;)!!!!) According to what my husband told me, there were a lot of adhesions. Some right on the driver and stapes and some on the ear drum too. He removed it all with a laser (Activate the laaaser...anyone who's seen Austin Powers would appreciate that). Then he also noticed part of the driver was sticking out from the stapes so he recemented it back in place with some Envoy cement.
The Envoy rep that was there tested the device before surgery and said I was only getting a 5 dB gain. Normal is 25-35 dB gain. After surgery it was tested and I had a significant improvement to 35 dB gain! Praise God! Everyone was ecstatic! Results to be determined at 2 weeks when I can turn the Esteem back on. Yep, 2 weeks, not 6-8 like originally thought!! I'm very happy with that. I have packing in my ear that will need to be removed at 10 days post op and Dr. S is kind enough to let me do it at my audiologist who is close to home vs driving 3 hrs to see him for 5 min to remove the packing. Love this guy! He gave me 4 pictures with explanations from the surgery. It was very cool to see.
My pre-op nurse and recovery nurse were amazing! They were so kind and did everything possible to make me feel confortable. After surgery I couldn't pee (I was expecting this) and had to be straight cathed again. My nurse gave me some good advise about this. I should go to my pcp or a urologist and get a signed letter stating I have to have a catheter for all procedures no matter how short or small it is d/t difficulty urinating. It's a good idea. I'll probably see about doing this.
Over all this whole thing was very positive.
I couldn't have had it go any better I think.
The most discomfort I have right now is a sore throat that feels like strep throat from the ET tube and my ear feels like it has a bad ear ache. No neck or shoulder pain like last time. No incisional pain. Instructions are similar to a stapedectomy; no lifting objects over 10 lbs for 4 weeks, no strenuous activity for 4 weeks. I can shower right away but have to have a cotton ball with vaseline in my ear to keep water out of my ear. No blowing my nose and must sneeze with my mouth open for 3-4 weeks. Appt to take out ear packing in 10 days. And the best instructions; don't make anymore adhesions!!!!! Hahaha
I will add the photos here:
Wednesday, November 28, 2012
Transcanal Tomorrow
Transcanal revision tomorrow at Henry Ford West Bloomfield! I'm to arrive at the hospital at 12:15. Dr. Seidman is certain he will not have to access the auricle incision (original incision behind my ear) to fix the scar tissue but it always is a possibility. I am going to tell him that if I wake up with half a shaved head like last time, he better have a shaved head too!
Basically he will be peeling back the eardrum, shaving off any adhesions and removing bone and cement dust that may be impeding the full potential of the Esteem device. He figures on about 2 hours operating time. I hope it'll be smooth going and no need to do the full revision. Regardless, I have to leave the device off for 6-8 weeks. That's going to be extremely hard now that I've become so dependent on this ear. Bye bye phone conversations!
I'll have a 1 week follow up on Dec 7 at the office to remove the packing on my ear and then just waiting on re-activation. I kinda hope I can just turn it on myself and move on...I really don't want to pay for activation fees! This surgery will be paid for by Envoy, for which I am terribly thankful. Beyond that I've got to hope and pray with all my might that everything goes swimmingly and works and I can HEAR without issues and not need extra visits that I'll need to pay for. I keep working on my insurance to cover any part in this whole thing. I've been denied, so I'm on to the appeals process and have my pcp helping me. Fingers crossed it gets me somewhere! Considering Dr. S is only 1 of 11 surgeons who can provide the services required for the Esteem, I'm thinking I might have a fair shot at Priority Health picking up some of the tab.
"Hear's" to a smooth surgery tomorrow!
Basically he will be peeling back the eardrum, shaving off any adhesions and removing bone and cement dust that may be impeding the full potential of the Esteem device. He figures on about 2 hours operating time. I hope it'll be smooth going and no need to do the full revision. Regardless, I have to leave the device off for 6-8 weeks. That's going to be extremely hard now that I've become so dependent on this ear. Bye bye phone conversations!
I'll have a 1 week follow up on Dec 7 at the office to remove the packing on my ear and then just waiting on re-activation. I kinda hope I can just turn it on myself and move on...I really don't want to pay for activation fees! This surgery will be paid for by Envoy, for which I am terribly thankful. Beyond that I've got to hope and pray with all my might that everything goes swimmingly and works and I can HEAR without issues and not need extra visits that I'll need to pay for. I keep working on my insurance to cover any part in this whole thing. I've been denied, so I'm on to the appeals process and have my pcp helping me. Fingers crossed it gets me somewhere! Considering Dr. S is only 1 of 11 surgeons who can provide the services required for the Esteem, I'm thinking I might have a fair shot at Priority Health picking up some of the tab.
"Hear's" to a smooth surgery tomorrow!
Thursday, September 27, 2012
A Thankful Thanksgiving
I have a date! November 29 will be my revision, or transcanal approach, on my right (Esteem) ear. Happy dance!!
Tuesday, September 25, 2012
Changes Ahead!
Envoy has changed their business model. That is what all the fuss and anxiety was about. The CEO has been replaced, and many staff/customer service reps have been let go. I have 2 familiar contacts left with Envoy, so that is a comfort somewhat.
Envoy has decided to cut back out of the picture and let the implanting surgeons take the lead on recruiting appropriate candidates for the device. They will no longer sell the device to the consumer, nor place a consumer with a doctor. It is up to any new patient/consumer to find the doctor and have the doctor decide if the Esteem will work for them. The docs are loving this part. I agree that it makes so much more sense to go through the surgeon vs going through a medical device manufacturer for important medical questions/advice and doctor match up.
One thing Envoy has done to cause a bit of a stir is to follow their LOU (letter of understanding) that all patients signed, to a T. That means only the activation and one adjustment are included in the purchase agreement of the device. All else (further adjustments, revisions, etc) will be the responsibility of the patient now, which had not been the case before. There were many of us (including me) who were promised much more than what the LOU stated. Some promises were in writing, most verbal. While Envoy has remained elusive about these promises, stating they cannot be upheld, they have come through for me one last time before I believe I will be responsible for everything else.
They have agreed to let Dr. S do my revision at their expense! It is a transcanal procedure which involves peeling back the eardrum and scrapping scar tissue and bone dust out of the ear and doing a little exploratory work. I'm told to expect about 2 hrs under general anesthesia and approximately 6-8 weeks with the device turned off to allow for healing/fluid drainage. He will not have to cut the original incision behind my ear on my head, which means no hair will be shaved! I'm so thankful that Envoy has decided to help me out and I'm also very happy to be able to stay with my implanting surgeon.
Next step is scheduling surgery, which should be right around Thanksgiving d/t other unavoidable circumstances...I'll be spending the holidays in quiet observance!
Envoy has decided to cut back out of the picture and let the implanting surgeons take the lead on recruiting appropriate candidates for the device. They will no longer sell the device to the consumer, nor place a consumer with a doctor. It is up to any new patient/consumer to find the doctor and have the doctor decide if the Esteem will work for them. The docs are loving this part. I agree that it makes so much more sense to go through the surgeon vs going through a medical device manufacturer for important medical questions/advice and doctor match up.
One thing Envoy has done to cause a bit of a stir is to follow their LOU (letter of understanding) that all patients signed, to a T. That means only the activation and one adjustment are included in the purchase agreement of the device. All else (further adjustments, revisions, etc) will be the responsibility of the patient now, which had not been the case before. There were many of us (including me) who were promised much more than what the LOU stated. Some promises were in writing, most verbal. While Envoy has remained elusive about these promises, stating they cannot be upheld, they have come through for me one last time before I believe I will be responsible for everything else.
They have agreed to let Dr. S do my revision at their expense! It is a transcanal procedure which involves peeling back the eardrum and scrapping scar tissue and bone dust out of the ear and doing a little exploratory work. I'm told to expect about 2 hrs under general anesthesia and approximately 6-8 weeks with the device turned off to allow for healing/fluid drainage. He will not have to cut the original incision behind my ear on my head, which means no hair will be shaved! I'm so thankful that Envoy has decided to help me out and I'm also very happy to be able to stay with my implanting surgeon.
Next step is scheduling surgery, which should be right around Thanksgiving d/t other unavoidable circumstances...I'll be spending the holidays in quiet observance!
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