1 Year, 2 Months

Well, I'm finally getting around to writing my one year follow up!  It's amazing how much my new ear is still changing!!! I have photos, as well a some of my scars now that they have settled, but first, here are some updates:

1) The clicking and pain in my rib area that I had prolonged after surgery is no longer bothersome. It doesn't happen unless I reach forward and use my right arm a lot, and it's continuing to improve.

2) Except for the spot where Dr. Griffiths removed the nerves to cover the ear, I have complete feeling in my scalp! I still only have some feeling in the new ear, mainly around the helix and tragus, but I still get a lot of itching elsewhere, and I can tell the nerves are still regenerating because now, when it does itch, rubbing the area actually does help squelch the itch!  I especially like to let the shower water run over that side of my head... It feels really good with all the new nerve endings!

3) At one year post op, I sent Dr. Griffiths another batch of photos and everything is looking good. I will send more this spring at 18 months, at which time they consider it "fully healed".

4) After surgery, as you might recall, I had a rough time healing and with pain, and discovered it was because I had fibromyalgia.  That is more under control now as well.  I'm always in pain all over and have terrible fatigue, but as I have said before, that is all due to the fibromyalgia I didn't know I had before surgery.  As much as I don't like how much worse the fibro is some surgery, I'm REALLY glad all my "mystery" symptoms from before surgery have a tangible cause that I can work with and attribute them to.

5) Photos!

Left Leg Crease 

Right Leg Crease 

Rib Harvest Site, Upper Right Abdomen 

(About 3 inches long) 

Photo Update 27 Weeks Post Op

Time for some photos!  I've been making collages and posting them on Facebook, so most of these have been shown there already... But some went only in my wall.  Feel free to friend me if you like!  I update there more than here.  I need to let changes accumulate and fund the hours it takes to make these posts.  Facebook is faster for just one photo. But first, here's some news:

1) for not quite 6 months post op, my ear is doing really well.  Dr. Griffiths said that this is the peak time for the scars to be noticeable and red.  After that, they will begin fading.

2) the grossness behind my left ear where the skin graft was feels a bit lumpy but otherwise normal... Yay! Likewise, the additional great behind my right, new ear is slowly blending in better too.  As of today, there is finally starting to be a ridge behind the ear there now that the swelling is going down more!

3) my ribs still click when I use my arms a lot.  This is not typical and dr. Griffiths has never had it happen before, but I am also not a typical patient since I found out I've had fibromyalgia since I was 9 AFTER the surgery.  The clicking is more of an annoyance than anything else.

4) I've realized that I never felt I looked different than anyone else before surgery.  And, even during this healing process, I have not really felt self conscious about the ear.  This again shows me that I was being honest with myself when I decided to have this done. I totally get why insurance pays for it as medically necessary... This was not about my appearance, it was about getting whole inside.  This makes me happy... I LOVE how my ear is coming along!!! It's so fun to watch it change little by little.  As in some of my collages, you will see that sometimes I just like looking at the extremely subtle things that happen within just a few days... Look close...

Pictures!

Quick Photos

In the past week, I've noticed some subtle changes I want to share.  I am most excited that the new ear piece that connects to my lobe on the right is actually starting to protrude out so far!  I though maybe there would always be a big step there since I haven't noticed much improvement.  But when I looked at it yesterday I noticed it's flattening out.  I know I do have a bit of a jump there on my left ear, so it will probably never be completely flat, but it is improving!! 

It never fails, just when I start to don't it will ever look any better, I notice something like this!! 

The first two photos are comparisons I've put together since then to see what else has been changing the past few weeks.  The others are from Friday, April 18th.  When I get on my computer I will try to put some things side by side... But if you recall how uneven my ears were before surgery and even right after surgery, you will see that as the swelling subsides, they are becoming more and more alike in location!!!

Happy Easter Weekend!

18 Weeks

So I'm still trying to deal with the fibromyalgia pain and am not using my computer.  Bear with me, as I wrote you all a very nice post a while ago, but somehow it didn't save when I went to edit the photos and I lost it.. I'm new to doing posts from my camera!! 

1). Good news lately!  First, after looking at my ct scan, my doctor decided I do not need to have my jaw broken and extended!! Instead, he will just clean out both tmj discs by making two small holes in front of each ear... One for fluid in, one for taking out.  I am meeting with a physical therapist once a week until that surgery on May 7th, and will see her twice a week for about 5 weeks after surgery.  She is wonderful and came highly recommended.  After 26 years and many injuries, she is the first one to notice that I have really loose ligaments and joints.. Hence all the injuries.  Apparently I shouldn't really do much stretching, but only strengthening exercises... And we're talking my while body, not only my jaw.  Go figure.  This week my exercise was to put my tongue in the roof of my mouth where it falls when you say the word mine while keeping my back teeth apart wide enough to slip in a piece of paper.  I have to do this 15 minutes four times a day.  Who knew that could be so tiring!!

2). The other really good news is that the place on my new ear we were a little concerned that the cartilage was separating is indeed just healing.  It's looking less like it's jutting out of my head and pulling out the skin everyday now! 

3). I don't have much more feeling in my new ear, but I still have a lot of itching spells in it and where the skin graft on my other ear is as well.  The good thing is that I have just enough sensation that usually a little light rubbing followed by a little pressure helps call it down.  The key is pressure versus scratching.

4). Sleeping is pretty much back to normal now.  No matter which side I sleep on, there's not too much swelling.  The only thing that is a pain is that I have to be careful what earrings I wear to bed.  If they aren't small and smooth they irritate and rub into the new ear and it hurts... The good thing is I have enough feeling there to know it hurts so I can change it out!

5). Although I've said it here and there, I want to reiterate that the complications I had from surgery were not normal or preventable because I had underlying health issues that I did not know about into I had surgery and they caused issues.  It is no ones fault, and Dr. Griffiths has been wonderful about helping where he can since especially at the beginning we all assumed the surgery was the direct cause of the symptoms... But it was not.  I am also older than most people having the surgery, so of course my recovery is going to be longer and a bit harder just because if that.  I knew that before I decided to have the ear constructed.  I knew the risks, and was fully prepared to handle them.

But so you can understand where my story is much different than a typical recovery, hers the gist of it:  When I was coming out if anesthesia I had a reaction from being out for so long without my cpap mask on (not typical for sleep apnea).  It took two hours before it was under control.  Dr. Griffiths actually stayed until they knew it was OK... About an hour and a half, when typically surgeons do not hang around since a 13 hour surgery is very demanding and exhausting.  We did not know it, but this caused a large hematoma to firm in my abdomen, which is why I had so much pain and why it was so severe for longer than typical.  However,  I knew that I would be in pain and didn't really have anything to gauge if it was worse than it should have been, so it makes sense no one considered that I already had a complication from surgery... I had no extra bruising on my abdomen.  Also, because at that point I didn't know I had fibromyalgia (which I would never have found out if I hasn't had the surgery by the way) I thought I had a low pain tolerance because I've always been told that I can't possibly be in so much pain, etc etc... And I was young and didn't know so I he up believing that.  My ear was WAY more swollen than typical and my pain took longer to get better... Both of which can be attributed to the fibro.  And, BTW, at week 16, Dr. Griffiths told me my ear was right on track for 4 months out, so it did catch up!  My pain came back because we messed with an antidepressant that was unknowingly treating my fibro pain.  A week ago we started switching me from that antidepressant to another one that will hopefully help even more with the pain... And wouldn't you know it,  after we decreased the old one, for a few days I had a bunch of abdominal pain again!!  So by having this surgery, I learned I had some other physical health problems that I've had a long time, but went undiagnosed into the surgery made them worse.  But I'm so thankful for that because finally it explains my life and has made me more confident that I do indeed know my body and what it needs.  That has been a wonderful relief and very helpful in getting better treatment for all of my medical issues.  I also learned that I can put up with a lot more than i ever thought I could.  In general, I an a much more resilient, persistent, and confident person since the surgery... And none of that is related to my appearance!!  The ear helps me feel more whole inside, and I smile inside knowing that most people don't realize it's "not real", but I feel no need to show it off.  It's just part of me... Although it does still look weird and even creep me out sometimes when I look in the mirror!  From straight on,  it is almost scarily identical to my other ear!!  I actually hope it doesn't look too much more matchy matchy!!  Nothing should look 100% identical.. We are human after all!  I also met some really wonderful people that helped me see the good in people and learn how to ask for help in a way that doesn't out pressure on anyone to do more than they feel able.  I learned that despite medical issues, you can still lead a happy, fulfilling life.  The ear really is only a very small part of what the experience gave me.  So, just know that I don't regret the choice or what it caused at all.  I'm not sure I ever have.  From the moment I got on my flight to go out there, I felt more and more sure that I was doing exactly what I needed to do exactly where it needed to happen.  Looking back,  I see so much change from that month... Even if parts of it are hard right now, they will get under control and my overall life is better because of them.  What's to regret?  ;).  Just know that my pain, swelling, and complications were not caused by the surgeon or the surgery, buy because of underlying health issues no one knew about.  This was such a good experience for me,  and I have had such a positive experience with the surgeon I chose... Even 4 months later when i need to get a hold if him out talk to his staff... I don't want anyone hearing about the seemingly "awful" things that it caused and have it turn them off to the idea of surgery.  I would do it all over again if I needed.

As always, I wish you all the best along your journeys, and an always happy to entertain comments, questions, etc etc!  And now for the photos!!!!!

14 Weeks, 4 Days

Hello all!

I have been extraordinarily busy the past few weeks, and then went on vacation last week, so I missed a few weeks of updates.  I'm going to stick with the style from last time; I will give you some major highlights in the progress, or lack thereof, and then add some photos.

1) Dr. Griffiths agreed that the two pieces of cartilage near the top on the rim had indeed separated.  He said for now will we keep an eye on it (meaning I will send him pictures more often until we conclude it is okay), but if it needs to be corrected, it would be a fairly easy procedure.

2) My fibromyalgia pain comes and goes, but isn't really any worse near my incision than anywhere else these days!  However, the swelling I thought I had on my right side is actually just a permanent indentation from having some of my rib cartilage removed, which can happen (but not always).  For me, it's not too noticeable (unless I stand completely straight, not even my doctors can tell), but since it is my body, I do see it.  I don't really care, and I can't even see it very easily...one advantage of being female ;)

3) I have some feeling not only in my earlobe (which did not have any skin graft), but now it's also creeping up and into parts near the edge of the skin graft.  Some weeks it is itchier than others.  A week ago, I was worried I had all the feeling back I was going to get, but then a few days ago it started itching like mad again.  The break was nice, though!  When I lay on that ear, as new areas develop feeling, it feels weird!

4) I love having my new ear.  Despite the hematoma from coughing for 2 hours coming out of anesthesia, and the unfortunate discovery that I wasn't free of pain way beyond what the 'longest recovery' had been because I had fibromyalgia that had been increased from the physical trauma of a 13 hour surgery and painful recovery (I believe, looking back, I have had fibromyalgia for 16 years.  We just never knew because I was too young to know it wasn't normal to feel how I felt and I didn't know how to advocate for myself...plus we were accidentally already treating it with a medication I was taking for another reason), I would do it again.  The feeling of balance and completeness on my head is wonderful!  Yes, I could have worked through those feelings and gotten used to it, but I have a lot of other things I need to put that energy towards, and I had a great opportunity to get the gift of a new ear.  I'm an artist, and for me, there is a lot of artistry in having an ear sculpted out of my own cartilage.  I love it.  I am SO happy that I made this decision though.  I am thankful that my parents didn't have it done before I was old enough to get teased, etc.  It made me stronger to grow up that way, granted it was never a sore spot physically in school, which I know is not the case for everyone.  I also know that it is a lot easier to get insurance to cover the procedure when the patient is a child.  I know I'm lucky, and I also know that the timing was perfect for me.  However, everyone's life is so unique, there's no "right way", or "right time", etc. in general.  We all need to support everyone's choices, because there are too many variables for there to be any sort of chart telling us what is right for everyone.

...and now...some photos!!!!!

This last one you may have to scroll a bit to see it all, but I thought having the pictures be a little bigger would be worth that added hassle...

Long Over-Due Update

WOW, my life has exploded with medical problems...and thus I have been running around like crazy and stressed, so I have had to post-pone an update until now.  Don't worry...I didn't just go back to life and forget about my blog...I thought about it a lot actually, but was unable to get it together and update.  I felt badly that some people that have been following my posts might have thought I just moved on, but rest assured, that was not the case, and is still not the case.  In fact, since I am moving forward with jaw surgery for my hemifacial microsomia (which is related to Microtia and Atresia), I plan to just transition into posting about that experience as well as it moves along.

So, tomorrow marks 12 weeks post-op!  I am going to transition to taking my photos on Sundays, since that's also the day I have to take them when I send them to Dr. Griffiths once a month.  But for this week, I had already made up some collages from last Wednesday as well.  But first, here's what has gone on since I last posted:

1) I have decided I will move forward with jaw surgery to lengthen the right side of my lower jaw bone because it is becoming increasingly painful and is really starting to limit my food choices.  I have done more research and talked to some people that have had it done, and I think having it done will be best.  I had molds and x-rays taken yesterday, and have a CT scan this Friday.  After that, we will know if I need braces, and if so, for how long.  Then the fun part of getting prior authorization for it all...I just got approved for Medicaid, but luckily the hospital I see most of my doctors through knows how to work well with Medicaid and will do all that for me.

2) I received notice that my SSI (Supplemental Security Income - need-based disability income) was approved.  I applied in July 2013, so thankfully I did not have a long wait.  I feel extremely lucky, but it's bittersweet, since that means the government really felt I actually am too disabled to work due to my mental issues.  Basically, I look and act normal most of the time - at least outwardly - but it takes me all my concentration to keep my brain and thoughts and behaviors coming out that way.  If I try to do too much, then all hell breaks lose because I can't work/do too much AND keep my mental illnesses in check.  Luckily, I can at least do one of those...so I can not be a crazy lunatic all the time and enjoy life still :)  I know I have not really mentioned this piece of my medical problems on this blog before, and I don't plan on divulging much in terms of specifics unless I am asked privately, but it is an important, and very LARGE piece of my life, so I feel it deserves mention since it's having a big influence on my whole being right now.

3) I figured out what was causing my stomach pain, and thank GOODNESS, besides the hematoma (which is now gone), it is NOT directly related to surgery.  It has delayed my healing some, but that is not related to anything Dr. Griffiths or I did following surgery...except maybe my coughing fit, but no one could have predicted that, and they got it under control ASAP.  Basically, I have been on antidepressants since 5th grade (and here's where it might be helpful that I shared number 2 on this list).  Since then, I have had quite a few traumatic events happen, both emotional and physical.  I had a lot of emotional stress last spring and through the summer, and then in August starting having 5-7 day bouts of what we called a 'stomach flu'.  I would be so tired I didn't want to move any muscles, my whole body hurt, and I was nauseous.  I never threw up, had a fever, runny nose, etc.  Well, after surgery, these bouts got worse and closer together.  Since the summer I have been having other weird things happen (I can't remember common words, my hands are really cold, etc...things that are not typical for me, but alone didn't really cause any red flags).  So, in January, when we started Metformin for my insulin resistance and I suddenly had more energy and felt better overall, we were ecstatic.  We decreased some of my psych meds.  That is where we went wrong. Those medications take about 1-2 weeks to get out of your system.  About 1 and a half weeks after the decrease is when I noticed my stomach pain was coming back and getting really bad.  By 2 weeks, I needed prescription pain killers to help the pain, the pain was spreading all over my body, and was moving around.  Yes, the rib area on the right was the worst, but everywhere hurt.  Then, I got extremely fatigued again and nauseous.  During that time, I had mentioned to my physician that maybe my 'stomach flu' was something like fibromyalgia.  We had decided to just keep an eye on it since it had barely been 6 months since I had started having those episodes and since I was coming out of a rough mental patch, it could just be that.  When my rib x-ray came back normal, and then my ultrasound and bloodwork did as well.  I called off the search (unless my Doctor's could think of a reason post-op complications would still be a concern for wide-spread pain, etc.).  The pain increased because the psych med we decreased is also used to treat fibromyalgia pain!  We reinstated it last Sunday, and I have already seen a little improvement in my pain...I still need a lot of pain medication, but a lot less than a week ago!  I have an appointment with my physician next Monday to discuss other treatments for my fibromyalgia symptoms.  So, not only have I been in a lot of pain, but I have been so darn exhausted, there is no way I could keep up with anything that wasn't 100% necessary...thus my lack of updates on this blog.

4) Starting at the beginning of February, I have started regaining feeling in my new ear!!!  One evening I noticed I could feel that a cream I had just dabbed on that earlobe was cold, but I still couldn't feel touch.  By morning I had feeling back in the whole earlobe!  The rest of the ear is still pretty much numb...but very very slowly, I am getting feeling back around the edges of the skin graft.  I figure that since this skin was grafted, unlike the earlobe which was just re-positioned, it will take longer to get back feeling.

5) My large scar on my right thigh crease gets dry, painful and itch A LOT!  I really rely on my silicone scar gel to keep the area from drying out so that it doesn't hurt or itch.  As long as I keep it moist, I don't feel a thing.  The other scars get this occasionally, but not as often or as badly.

6) The back of my left ear is looking really good FINALLY!!!  The skin graft has thinned out, and doesn't look so gross anymore.  It's still not all the same color/thickness, but at least it's not so thick and shiny.  BIG improvement.  It does itch though...and again that scar gel comes in handy...

7) I don't always wear something behind the new ear to bed at night because I found that no matter what I used, it created problems like increased swelling and/or irritated the earlobe portion of the ear. However, I might have caused a different problem, or it may just have happened on its own.  The upper rim was two pieces stitched together.  That stitch broke before the cartilage healed together (or maybe it never bonds...I'm fuzzy on those kinds of details...I have an email into Dr. Griffiths), and the upper piece isn't held down anymore, so it pushes out and up into the skin a little.  This causes the curve to be a little rugged there, and sometimes if I touch that area it's a bit tender.  I can also push on the end of the cartilage there and it moves back into place...so I'm not sure if there's some way to fix it or not...we'll see.

8)  I LOVE my ear.  Even despite some bumps, I would do it again.  I didn't expect a perfect procedure, recovery, ear, healing, etc. as that's just not possible.  Nothing is 100% perfect.  However, my ear continues to blow me away everyday!  The more the swelling subsides, the more I see how awesome it is.  I'm in love!  I am used to having it there and I like that.

That's plenty for one update!  Here's the photos: