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!!!!!
