Are there any saxophonist or wind musicians out there?

[MusicGeek]

Hey Mark7b Thank you for writing!

I followed your thread when you gave the update on your surgery and wrote this response that remains the same - I AM SO HAPPY FOR YOU! Wow I’m so glad you are feeling better. I am also so happy this group helped you navigate to a diagnosis.

Yes, it is different and yet the same. You had many similar symptoms. 30 years ago I had a “seizure” after our car was rear ended. I was awake at the time, but couldn’t stop the shaking and my extremities curled up. It was surreal. Then the poor kid who hit us saw me after he jumped out of the car and saw me that way. He had a terrible time of forgiving himself. My hubby eventually lied and told him I had a miraculous recovery because we didn’t want his life to be ruined as well.

Back to ES and Saxophone and Surgery. Did you try playing recently and that’s what triggered symptoms? Please don’t play for at least 3 months. I do not want to be responsible for you hurting yourself. You may need to handle some “survivors remorse” - but please don’t feel bad or need to to anything on my account. It will be OK. I am learning to have a good attitude while waiting. Once you are healed for a couple of months I would love to know how your musical skills are feeling!

It might be too soon for singing as well. I know you want to get back to life, but just a little more patience could pay off huge for you. I spoke with a voice teacher who even sang on the Ed Sullivan show! She told me to practice softly for several months. She thought it would give my range back. This was all before the ES diagnosis.

Yes the whole vocal worship thing can be a land mine. I find myself quoting the “Boundaries” book by Dr. Cloud and Dr. Townsend frequently. Another good one is “The verbally abusive relationship”. That book gives an idea of motives and how to handle bad behavior. I have a feeling after I’m on the other side of surgery I’ll need counselling for how to speak to some previous acquaintances and also how to forgive them. I’ve had to remove myself from some people who were horrible to me. Some said I was faking it etc. I can’t say much more without becoming symptomatic again.

Regarding the vocal worship changing church to a “performing arts group”. I’m a jazz musician. I can call up 4 people and not rehearse the group - go to a performance and we would sound like we had rehearsed for years. Knowing how to read music was a basic foundation. After that we all had encyclopedia sets worth of info memorized. I practiced my craft for hours every single day for decades. It is so weird to step into a group that doesn’t know a major chord from a Sus and unfortunately the music they downloaded didn’t know either. It’s an absolute shame. So much discourse that could be avoided. So many rehearsals that could be simple at most.

I currently have an awesome supportive group of friends and family. Some really want me to not have surgery. That part is so hard to handle, but they haven’t been living in my shoes (or flip flops LOL). They won’t remember the ball and chain affect they had later either. LOL.

Thank you! I’m so glad your health came first. I’m currently trying to have that same attitude. I just recovered from 3 days of severe symptoms and cancelled some hard work I was suppose to do today. Thank you for your letter.

[Exel_Gano]

I have a surgery scheduled with Dr. samji on Oct 10 and would love to meet another Eagle patient. My wife and 14 month old baby will be with me for support. I’ve never had surgery so I’m extremely anxious and my mind is running 100 miles an hour. I would love to gather info from someone going through the same thing.

[MusicGeek]

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.

[Jules]

Glad that you are seeing improvements- it is a major surgery, and we should give ourselves time to heal. Look forward to hearing you’re back on the sax again!

[heidemt]

MusicGeek - so happy to hear from you! I’m glad that you’ve seen significant progress so far. Good signs. Hopefully the worst is behind you. Take care and get lots of rest. Please keep us updated on how you’re doing.

[MusicGeek]

So hey, I’m sort of giving the State of the Music Geek update.
If this could benefit someone else, that would be good.
Two weeks before the second surgery I played my tenor and a very strange and wonderful thing happened - Coletrane and Charlie Parker very tricky to play excersizes and for lack of a betterment word “licks” fell from my fingers so easily it was as if I were breathing. Material I had memorized 13-15 years ago came back to me. I also had memories come to me that I didn’t know were gone. My ENT wanted me to tell him anything I was experiencing and I was hesitant to tell him since it sounds crazy. He thought it was awesome. He told me that it’s likely the impingement on my carotid artery wasn’t enough to stop brain flow completely and now that the bone that was impinging is gone that part of my brain is getting a more healthy amount of blood flow and healing. It took about 3 months. There was also a lot of "extrapolation " type of reasoning that came along with the memories.
With the second surgery my surgeon had to “dig deep”. The right bone was much larger and easy to follow its path. The left bone created more pain. Once home, all my doctors were hit with the flu that seemed to to hit everyone’s in the Seattle area. It made it so I didn’t have the cold laser treatments I had before. I soon couldn’t speak without pain and it became worse. I’ve been handed off to a specialist in rehab who’s bedside manner needs much improvement. I was given a swallow test and it was a bit of a fiasco. I was told by the scheduling people and reminder call to have no food or water for 8 hours before the swallow test. Lack of water means I no longer can talk without a great deal of pain. I asked many times to please check the area of pain. They didn’t. When I was told the test was over I couldn’t believe it. Everyone left and the area that had pain was not checked.
Here’s what I figured out- not everyone can multitask. When I remember what the people were doing when I asked and told of the specific area of pain- the medical workers were doing something else. I believe if I insisted they look at my face when making my request they would have done a much better job.
Once the doc who uses cold laser therapy was available again, I started to improve again. I’m still not where I was before the second surgery with my voice and I cannot blow a horn again; however, my Rhumatologist who is an expert on Fybromyalgia now is thinking that the Eagle Syndrome may have caused my Fibromyalgia. She was thrilled with my improvement. So I need to make clear that the rest of me is doing amazingly well.

I’d love to sing and play again, but I need to continue to have a good additude and wait. Last surgery took 14 weeks before I was able to play and talk without pain.
This surgery I probably pushed singing too soon.
There was a few weeks where I was sure that there must still be a piece of bone in my neck. I am extremely surprised it no longer feels that way. I’m amazed at how much pain and trouble scar tissue can cause. Earlier The doc who needs a better additude told me that the right side was “Done scaring”. He was wrong.

I’m thinking clearly enough again to compose well without singing. If my healing is like last time, I have four weeks to go before I should be overly concerned. There’s a college near by where I’m invited to jam with the students once I’m up to it. I will be looking forward to this happy kind of therapy.

[Isaiah_40_31]

So sorry you’re having some setbacks but so thankful for how far you’ve come!!

[MusicGeek]

It appears my “Journey” has been referred to, and so I feel I better make an update. I have avoided the forum for awhile because it was very difficult to not get upset. Music is a way of life for me. Singing is extremely important to me as well as playing wind instruments. A few people have written to me privately not understanding that it is harmful to tell me that if they lost their abilities it would be the end of the world. I need to make a statement. IT’S NOT THE END OF THE WORLD. Yes I had to reinvent myself. Yep it was hard. Yes I needed to fire my ‘Specialist’. I guess the lesson that was most strongly learned by me is ‘Listen to your gut’.

My surgical notes were not sent to my doctor until just 3 months ago (that’s 18 months). Once my GP saw them she told me to stop everything and heal. Everything. Apparently I had come very close to dying two different ways. Both my jugular and my aorta on the right side had been damaged. My GP was distressed that not enough information had been told to me for an informed recovery. Quite frankly Yogi Bear could have told me what to do, and I wouldn’t have remembered. I was very sick, and ‘not myself’ LOL. So I took doctor’s advice and let everyone poke and prod me. As it turned out I had a sort of “hidden pneumonia” that isn’t caught much for wind musicians because of our lung capacity. I was also anemic. Sooooo that might explain the exhaustion. Sheesh. My doctor ordered some serious vitamin B capsules (because that was the anemia cause) and also I became the owner of a brand spankin’ new nebulizer and some medicine to inhale - so that the lungs would once and for all heal. The nebulizer worked as well as the vitamin B.

I have healed well enough to be overconfident with flute LOL. I created a flute library for myself to use - not so much because I didn’t think I could play, but so that if a neighbor used a studio wall breaking Leaf Blower, I had some of my own personal recordings to use. I broke up the time to record everything by a couple of new fence and new roof, neighbor nailing weeks. I guess I hurt myself a little bit. It’s not serious, just annoying. When I showed my doctor the embouchure for a wood flute, she rolled her eyes and said, “Uh YEAH! That would cause the muscle you are pointing to to hurt!!” She used cold laser on it and It’s already much better after less than a week.

Update on saxophone playing and speaking. I had a serious set back the end of September. A dental visit tore out some of my healing. I would like to HIGHLY RECOMMEND TO NOT HAVE DENTAL BONE X-RAYS. The assistant didn’t listen to me. What my GP doctor and I think happened is that when the assistant forced my jaw open with her hands and put the ‘crow bar’ of a device into my mouth under my tongue - it tore the weak point of my right side surgery at the tongue root level. So I was mute for another 6 weeks.
No amount of ranting will suffice as to how I feel about this LOL.
So here’s the bright spot: ( I know this sounds so bizarre) When my tongue was torn within my neck, it also tore some really bad scar tissue. I was able to have cold laser treatments and I have improved much faster, and have been much more successful with the PT exercises. After six weeks I was able to talk much better and without pain for a substantial amount of time, as long as I did not raise my voice.

People no knowing what a voice injury is like will probably think I must be yelling all the time to be concerned about not being able to raise my voice LOL. People have NO IDEA how much you need to raise your voice in everyday life. So many people talk over you and walk away. Cars nearly back over you in a parking lots. People call out to you from a distance and you just forget what it does to you until it’s too late and you talk back.

Game plans need to be made for what to do instead of yelling. My family and some of my extended family know that when I raise my hand it’s the same as “speaking up”. I’ve had to avoid some people in my life in order to heal. We are living in a strange world. You find out who your friends really are. I am thankful that I have some special friends.

Update on Saxophones - my main instruments. I am playing Alto sax in a “different way” once a week for 20 to 30 minutes without consequences. Yes I miss playing in a group, but this time away was a great lesson. I was a big fish in that group. It was holding me back. I really want to start my own group and I have a lot of ideas for that ‘new group’s’ future. I was trying to force practicing several times a week, but I just wasn’t healing well. My lesson on this is, no matter how everyone else feels, you need to make sure you are listening to how you feel. Everyone wants a happy ending quickly. Not all happy endings happen when you want them - some are delayed.
Some are ruined by the pressure of too soon. I am learning to be selfish about that not happening. I am not allowing a band leader or individual to force me to play before I am healed enough to play without consequences. The “different way” of playing is holding my Alto sax in front of me instead of the side. It was requested by my doctor. I’m a bit ‘vertically challenged’ for this, so if I play sitting down; I need to sit in a way where the horn doesn’t hit me in the nose instead of the mouth. I use a pillow. I sound good. I’m shocked in fact at how good my tone is. The size of the throat and its form is a big deal with wind instruments. I apparently have not suffered any loss, it seems to actually sound better.

The state of singing - Wow this was the toughest. I had to make sure everything was aligned so that I didn’t injure myself. I had to have a warm throat. I had to start soft. I just started singing a chromatic scale two notes at a time. So I would sing softly C - C# until it was smooth and then sing C#-D the same way. I did each note pairings three times. If it was difficult to hit the note I meant to sing, then I would end with singing that note correctly and not push it any further. There have been a couple of times I have burst into singing (it used to be my habit) and didn’t realize I was singing until I hit something painful. So my singing voice is Definitely coming back. I am not at performance level yet.

There was a door that opened up to me, that is such a surprise I am stunned. It seems my experience and my journey made me a good candidate as an ‘expert witness’ for voice identification. I didn’t look for it. I had an attorney approach me. I’ve already earned my first pay check! Who would have thought that all of the research I did for my own sake and also all of my equipment in my sound studio plus all of the education I needed to use virtual instruments while I was loosing my ‘abilities’ - resulted in the fact: I have a new skill that is sought after. There’s are many good things happening. I just need to stay on course.

So my Eagle Syndrome buddies - don’t give up! Be your own advocate as much as your health can stand. Fire the bad doctors. Communicate will with the good ones! Hang in there! If you need prayer, let me know and I will be your prayer advocate.

I need to add more - so sorry, but it’s the most important thing. I was an EXTREME case. Please do not be afraid from my long recovery. My doctors are very happy I did not die. I had a broken ES bone that was very large. It even made them squeamish. So please know that if I can get better - even if it takes years; than anyone can get better. Hang in there.

[Isaiah_40_31]

AWESOME POST, MusicGeek! Thank you so much for coming back & giving this comprehensive update. I’m sure it will be an encouragment to many people on this forum - especially the musicians.

[Jules]

Thank you for the update- & a good reminder that although some find symptoms improve quickly after surgery it’s not always the case, & that patience is needed… & that we are all different, heal differently so comparing healing with other members (or have friends/ relatives input) is not helpful at times.
Really, really glad that things are improving, glad that new dooors are opening for you, & hope that you’re soon able to use your God-given talents completely!

[MusicGeek]

Thank you @Isaiah_40_31 and @Jules1 !

I should have added that I also found much improvement with acupuncture. My acupuncturist was an ENT surgeon and she is awesome! I’m going to disappear again for a while. I have a lot of work that I need to pace out. Thank you for your help and encouragement ️