Hey Exel and all,
I’m week three post 1st surgery. Exel - I will write to you privately.
I’ve been praying how to fill people in and how to hone my “perspective”.
I have experienced immediate “perks” post surgery that were quite surprising. My whole body doesn’t ache like it used to. My right shoulder no longer has chronic pain. I can smell again. Food tastes stronger. I had grown used to these things, so I am quite amazed.
I am very grateful that I traveled to a good surgeon. There were no promises, but I am without paralysis or nerve damage (things a wind musician really needs). When I awoke the doctor said “That was one BIG bone!” It was apparently tangling with my carotid artery and I was told that was probably why I was “so symptomatic”. I really don’t know exactly what symptoms are being referred to. My doctor back home is concerned about the soft tissue damage I encountered from the bone. It apparently had been fractured in the auto incident 3 years ago and things must have tangled into and around. For me it felt a bit like yarn that caught inside of a partially broken tree branch if that makes sense. My doctor at home believes it will be a couple months for the soft tissue to heal.
I had a very bad reaction to the anesthesia, we knew this would be a problem - tried to make sure steps were taken, but unfortunately there was a miscommunication. My doctor at home has promised to be my advocate to avoid this the next surgery. I have a gut problem so, bottom line I was sent home unable to take the pain meds - which is not a good idea. Again my doctor at home will be my advocate to keep this from happening again. I don’t want to scare people, but I want to be truthful. Both of these problems could be avoided if one has an advocate who is versed in what to do. I was told by a friend who used to manage a big hospital that if I was sent home sick to go to an ER of a big hospital. I didn’t get this across to my husband ahead of time. Fortunately the B&B where we stayed was owned by a doctor and she looked in on me. It was a tremendous blessing. The managers there also had a cold laser device that helped my gut problem and again I am blown away how it all worked out. What could have helped the situation was for the anesthesiologist to have noticed that I was out of state and not to call my home phone. So I cannot stress enough to make sure the anesthesiologist group knows the correct number to call and to harass the anesthesiologist group if you do not hear from the anesthesiologist in a timely matter. The office called the correct number the anesthesiologist did not.
Isahia_40_31 was so sweet! Met me and KCanady and loaned us both the needed wedge pillows. My husband was also amazing and made sure KCanaday got to experience California a bit LOL.
I’d like to address something: Drug affected “memory” and pain affected “memory”. My husband had to correct me on some things that I swear were real and true. My perspective was messed up for a few weeks. Now before you say “that wont’ happen to me” - um this is why drug addicts exist LOL. They all think it won’t happen to them. I had a bad reaction to the steroid. I had also focused on something said to me after surgery that grew in my mind to unreal proportions. I just want to make sure people know that the medical pros really tried to do their best for me. They were caring and very good at their jobs. I’m glad my husband was able to set me straight on some of the bad stuff I misinterpreted.
I don’t know when my voice or wind instruments will be part of my life again, only time will tell. One of my band mates has written and asked me to hurry up and get better LOL. I am normally the person who sees things straight and calls it as it is - making rehearsals go quicker and fix mistakes before they become habits. So for me to have my perspective be “off” is really amazing.
My doctor at home believes I have earned some “closure” so once I am healed she will be ordering an image just to make sure I can see that the area around the voice box is clear of foreign objects LOL. I can talk for about 15 minutes without pain (this is new) the feeling of a big double edged crewel embroidery needle in my throat is gone. The pain of a something that felt like a big pointy triangle is gone. My husband says I snore much less - which is surprising since my throat is still swollen. I wear a Samsung “fitness manager” that tracks my sleep. I get much more motionless sleep during the night. I still get sudden exhaustion. My doctor at home thinks it’s partially the soft tissue healing needs and also my brain really doesn’t like anesthesia. I’m actually prescribed a game called “noodles” to play to help the brain heal.
The pain from surgery is getting better day by day. I still have clicking when I swallow once in a while (it used to be constant). I can turn my head to the right much further. I had to stop driving before surgery because I couldn’t turn my head far enough. I have exercises I do each day from my doctor at home. I also just started cold laser therapy again. I’m supposed to have my thyroid checked but the 1st appointment available is med October, so I don’t have anything to tell yet. Re: brain - I am still complimented on all that I remember and can do. It’s the exhaustion that my doctor and I want to make sure is handled well.
I truly appreciate this forum and the help and encouragement that has been given. I didn’t want to scare people by writing while super sick on the steroids. I probably would have written a lot of paranoid stuff. I found out some things that are troubling, and I’d like to encourage everyone to be careful with their personal information. Also my surgeon no longer tells the patient the length of the bone removed because of the “competition” of lengths being thrown around. Size doesn’t matter LOL. There’s a lot of uncharted waters with this syndrome. It’s too bad it hasn’t been studied more effectively.
For now I need to be patient in the hopes to being able to sing and perform on wind instruments again. I am planning on taking up bass so that I can perform while I’m healing. I already play 13 instruments - I’ll spare your the details, it is a logical choice.
I have been riding my bike in my driveway and this really gives me joy. You see when I had the surgery for a tumor in my middle ear as a kid, I had to learn how to ride a bike over again. I also had to learn to run over again, drink with a cup and I completely forgot how to do fractions. With this surgery I still remember everything LOL much to my husbands dismay LOL. It is such a relief.
So there you have it. I can still smile, my wound is quite large - but I’m OK with that. I believe the surgery should be in a hospital, but that’s me. Sometimes healing takes longer than two weeks. You can bet that once I am playing saxophone again I’ll be posting a link to soundcloud LOL.
Thank you for your prayers. Please let me know how to pray for you. 