Are there any saxophonist or wind musicians out there?

Hi, great news that you have a meeting with Dr Samji! Sorry to hear that you are facing so many questions/ comments from family and friends etc. It is hard to explain how the symptoms of ES can affect you, and that there are different aspects… Nerve pain, inflammatory pain, impact on blood vessels giving different symptoms… My family can’t understand why I’m having a second surgery when the first hasn’t completely healed the nerve pain- I’ve tried to explain about the compression of the jugular veins and the symptoms that caused, but I don’t think they get it! Surgery might not heal everything and make it all go away, but it will hopefully improve things overall!
So, your questions: firstly there have been some members who have had surgery both sides all in one go, but not all doctors do this. I have a feeling that Dr Samji doesn’t- I’m sure Isaiah had her surgery with him and he recommended waiting 6 months for everything to heal. There can be a risk from all the swelling to do it all in one go. I certainly wouldn’t have wanted to do both together, but like I say, some members have and have been okay. My surgeries will be a year apart, but that’s more from the UK’s waiting times rather than choice!!
Some members have flown a couple of days after surgery- heidemt has done this, so you could message her (if you can work out this new site!!). Maxence also recently had surgery and he was asking the same question.
There have been members who have had some facial paralysis, some with trouble with facial expressions, and some with problems with tongue weakness/ movement. There are some risks with surgery, Dr Samji will discuss this with you, but at least you know that you’re in very experienced hands! I think that this has improved with time for members. There have also been a couple of members who have had shoulder and arm problems as the nerve controlling this is close to the styloid process as well. It is a worry going into surgery, as it is such a confined area, but then not having surgery can lead to inflammation and compression of nerves and then potentially damage anyway! I had a very numb cheek and ear post surgery, but even if that had never improved I would still have said it was better than the symptoms before surgery. Although I appreciate that you play music for a living so obviously any problems with those nerves will have a big impact. We have had a member called ‘eaglewon’tbeatme’ (I think)- if you can find any of his previous posts he did some quite detailed ones about his post surgery experiences. He’s a professional singer, so had similar concerns, but as far as I’m aware it all went well for him and he’s still singing!
I will certainly be praying for you, and let us know how it goes with Dr Samji!

I think Jules did a good job of answering your questions & has a good memory as far as Dr. Samji’s “rules” go. Dr. Samji did both of my surgeries (11/14 & 8/15). I did have a problem with my tongue after the first surgery although that is not the norm. My glossopharyngeal nerve was wrapped around my styloid & he had to partially unwrap it to shorten the styloid (I had elongated styloids as opposed to calified stylohyoid ligaments). The nerve was irritated by the unwrapping process & the right side of my tongue was partially paralyzed for about 6 months. The more normal “paralysis” is in the facial muscles that control the lower lip with the result being a droopy-to-one side (as if you’d had a stroke or Bell’s Palsy) lower lip. This is also somewhat rare but more common than tongue problems. These problems all resolve with time as the nerves heal. Healing to the point where I felt pretty normal again took me about 2 months (but I’m no spring chicken so a younger person might heal more quickly). I think I pushed myself to get back to exercising, etc. a bit too soon which may have delayed my recovery a bit.
Nerve healing took longer - 9-12 months for face numbness (no paralysis just numbness) to disappear.
As Jules said, because of the significant swelling in the throat post-op, Dr. Samji will only do one side at a time. I gently argued with him about doing my second side sooner than 6 months after the first side, but he was quite adamant that he wouldn’t do it sooner because he had tried a shorter time between surgeries on an earlier patient and the results were less than desireable (i.e. lots of throat swelling). I think he is wise to do the surgeries separately & with lots of space between so the first side is fully settled before the second side is agitated.
I live near Dr. Samji’s office and presently see one of his associates for a hearing problem that is unrelated to ES. I’ve recently talked to Dr. Samji about setting up some sort of a local support system for people who come from out of town to see him for surgery. He & his medical assistant have my permission to give out my email address if you’d like to make contact when you’re in the area. I met with Bella when she was here for her surgery & spent some time with her today before she heads home. It was wonderful being able to chat face to face with someone else who’s going through what I went through.
I will absolutely pray for you as you travel here to see Dr. Samji & contemplate surgery. He is an excellent doctor and a nice person to boot.

“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understaning, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7

I am finally replying to the very kind messages. Replying with the new website set up is a little confusing. It appears as though I’m typing two messages at once.
So hubby and myself decided to stay in San Francisco for a couple of days since we had to do the trip. My ENT’s nurse had put together my files. Last I knew she was just going to print everything off and I would sift through the files on the plane. I had colored tabs ready to go - but as it turned out I discovered the sweet nurse decided to do some word associated parameters and so the printed out papers ALL had to do with symptoms. It was about 1 1/2" thick. Here is why it’s taken me so long to update: once I figured out that every paper had to do with Eagle Syndrome, I was shocked. I’ve had three ENT’s who have retired while I’ve been going through this. I’ve been telling ENT’s for 30 years that there is a bone in my throat. So I’ll try to choke this out - upon further realization I was going into ENT’s in what looked like random order with this complaint, as well as ear aches and other classic symptoms ( I’m really shocked about the shoulder pain, it was noted as well). I discovered it wasn’t a random order. It was a timeline of tragedies. Every time I had a hard cry I would be symptomatic. Every loss of loved ones, every flu, abusive work situations, a couple attempted assaults - some really bad stuff all made worse by the symptoms of ES and I would go to my current ENT at the time asking for help. If it wasn’t for the fact that I was in a plane I would have burst into tears from the realization. Each ENT said I had acid re-flux and prescribed pills. The pills gave me acid re-flux from the rebound affect of stopping them - when it wasn’t the problem in the first place. I am a spiritual person and I know God loves me. I know that in my life the good has outweighed the bad. But that file was the bad, every bit of it and it took my breath away.
I met with Dr. Samji and the first thing he said was “I’m not an Eagle Specialist - I am an oncologist!” He was a bit frustrated by all of the attention he’s been getting. I don’t think he realizes how few surgeries the other doctors have done. I don’t think he realizes how much better his outcomes are in comparison as well. My images were workable, but apparently there should have been 64 slices and not 32 that the technicians in WA state had done. Dr. Samji said it was likely the the auto incident that happened 2 years ago ( when my symptoms became really bad) most likely fractured the already elongated styloid with the seat belt. (a mechanic forgot to hook up the U joint and the drive line came out on the freeway. Luckily hubby is an awesome driver and the vehicle didn’t flip) I have two elongated styloids and the left side just feels like a bone in my throat. It’s nearly poking out where my tonsil used to be. The right has done a funny sort of hook and it’s bent and poking as if it will eventually poke through the front of my neck next to my voice box.
Dr. Samji looked at my file and what I did for a living and he actually said “I don’t want to be sued”. I was surprised. He wanted to know if I’ve tried other methods of help to avoid surgery. I eventually understood his extra concern, when it seems surgery is inevitable with the styolid positions. He used to be a tenor saxophonist, and he knew that if I get the lower lip paralysis that it would ruin my woodwind playing career. He encouraged me to go back to playing - but it’s just too painful. (I told my band that it was asking too much to wait for me and that I should be replaced. They sent me a card a couple weeks ago stating that when I’m ready they plan on taking me back. It was very sweet.)
-Back to Dr. Samji, besides being encouraged to go back to playing ( which I can’t do in this condition) I’ve been put on gabapentin and told to wait two months and see if the pain reduces enough to skip surgery all together. Dr. Samji also didn’t like how my voice had been lost and said it didn’t make sense. He didn’t look the files further than the recent tests and didn’t see the years of acid re-lux (ppi) meds that have been issued. It all makes sense to me now. I haven’t lost my voice since weaning off the ppi meds, I do get pain from talking after a little while but it’s not a vocal chord pain, it’s stabbing flaming swords pain, ear pain, painful swallowing and sometimes shoulder pain. He doesn’t think the cyst under my tongue is related or the cronic back tooth pain. He’d like me to “handle” those things with other doctors during this two month waiting period. The doctor was also concerned that I was thinking the surgery would fix the current fibromyalgia. He wanted to make sure I knew the surgery had risks and that it might not fix anything other than the throat pain (oh please fix the throat pain, I thought. I can live with the rest I’ve proven that).Ironically I’ve been on gabapentin before for fibromyalgia and was taken off of it after the car incident because of doctors trying to figure out what was causing my “acid re-flux”. Back then I was feeling quite a bit better on gabapentin before the car incident. I’ve been on it now as well as steady Advil for 2 1/2 weeks. I’m now feeling back to where I was before the doctor felt for my styloids. It basically took 2 weeks to recover from that. It didn’t seem that horrible in the office. it was painful but then it grew like some sort of broken bone pain. Wow it was bad. So typing this now makes me think "Absolutely I have multiple symptoms from the styloids!“
At one point Dr. Samji said “I wasn’t as good as you, I only played in high school and college”. I could’t let that go. Wow, have I heard this too many times. You see I used to own a musical instrument repair shop and I had some amazing clients 5 of which were Grammy winners. I learned that sometimes the difference between a good and great player was simply the instrument being maintenance correctly. I told the doctor that I doubt he wasn’t good with that kind of background and also being a doctor. I’ve heard this story from many great doctors who didn’t get their instrument repaired right. When my husband and I left I put out my hand and said I need to shake your hand. He shook it. I said “It’s always great to meet another member of the SSS”. He looked confused. I said “The Secret Saxophone Society”. He laughed as we left the room. Then he said “Yeah, me and Bill Clinton!”. I said oh NO! You know as well as I- that Bill could only play a D Blues scale and that’s ALL he could do!” Then Dr. Samji laughed hard. He told me to call him in two months.

Thank you for the kind messages. Sorry for the typos. I guess I need to learn how to edit in this new format :slight_smile:

Well, I’m glad that you have clarity from reading through the files and linking all your symptoms, and can now see that you’re not mad! Shame you have to wait/ be put on hold for another 2 months… Hopefully the Gabapentin will help- what I would say though is that the back molar pain you describe could well be a symptom of Trigeminal Neuralgia. You can get the constant aching with Type 2. I have it (it is easing a year after surgery, but still there) in 2 back molars, and it’s worse on the side where I had the worse symptoms. So that is unrelated- the styloids can cause pressure/ irritation on the Trigeminal Nerve as well as everything else. Whatever you do don’t think about getting any treatment for that tooth pain without checking with a dentist knowledgeable in TN- it could make it a whole lot worse! If it is nerve pain then the Gabapentin should help with that, or if it doesn’t help there are other similar medications which might.
At least you’re ‘in the system’ with Dr Samji, and hopefully even if you’re more comfortable with the medication he will agree that it’s not a long term solution and be prepared to operate!

Heya MusicGeek!
First, I’m glad you have a DX and are seeing Dr. Samji. I hope you get some answers real real right now soon.

If you don’t feel comfortable, or this doesn’t pan out, I Absolutely encourage you to at least speak to Dr. Cognetti in Philadelphia, PA. He too is just as confused as to how he became the go-to guy for ES surgery, but is familiar with this message board and embraces this new path that has been thrust on him, Hahaha! He’s doing a Lot of study in the area of DX and treatment now, although he admits this is not where he thought his career is going. When you go to his office for ES you consent to possibly being part of a medical study and fill out a questionnaire about your ES symptoms. This dude is on his game.

Second, don’t freak out about surgery. It’s not that bad. Especially in the hands of someone experienced like Dr. Samji or Dr. Cognetti. I felt better Immediately after surgery (one side), but it took me about 2 months to really get a lot of benefit from the surgery. There was some initial facial paralysis but it cleared up faster than the pain did. There was some drooping in my eye and mouth, as well as some definite mush mouth speech. Even so in comparison to my speech before surgery it was a major improvement. That wait was well worth it and it turned my life around. Experienced surgeons like Dr. Samji and Dr. Cognetti will tell you it is a risk of permanent damage, but a very small risk. They know the territory well.

Dr. Cognetti had me out of the hospital and said I was well enough to fly or travel just a few hours after surgery, but I don’t know if Dr. Samji feels the same way.

Also, I’m one of the peeps with shoulder/arm problems that were effected by ES. The nerve bundle in that area is SO DENSE! The surgery didn’t fix it OH man do I feel way better. I had/have vascular ES, and the use of my arm would cause immediate stroke like symptoms. The doubter doctors were blown away by my improvement after ES surgery. I could feel my fingers again. My hard-ass PT cried when she saw me. That tiny bone can mess up a lot of stuff.

I used to play woodwinds back in school (oboe, bassoon) but haven’t done so for some time. Up until my arm injury and ES problems I was a professional fire breather tho, which I found the breath and mouth control to be very similar to playing my oboe. Except on fire. I probably would have stuck with oboe longer is there was more fire…
My blasts started to set off a lot of pain and symptoms, eventually losing a lot of control in what I could do. Like Jules said, I figure this was because of the intimate connections between the hyoid and the muscles at the bottom of the mouth and tongue. My ES also caused a lot of weird facial nerve stuff that made one side of my face a lot less responsive than the other.
I also began to lose my ability to sing and project my voice (which Used to temporarily make me feel better) likely for similar reasons as well as the involved throat tightness and inability to move my hyoid as scar tissue built up. As it progressed further I lost a lot of ability to have vocal intonations or do voices as well.
This aspect is something I’m still struggling to get back. However, my surgeon, Dr. Cognetti, is Very familiar with ES post-ops and says this is unusual. I don’t know how experienced he is with singers or musicians, so I’m Really glad to hear the Dr. Samji knows that turf well!

The part of your post about having to re-invent yourself over and over as you dealt with injuries and the progressive ones really struck me. I make my living as an artist and performer too, and have been building up my business for years before I got sick. My main biz is as a bench jeweler, and I’ve gotten very crafty and finding ways to accommodate my injured arm or weak hand. Still, Yes, you can’t compensate for a neck!! (also, What a flipping awesome job you have!!) It’s really soul shattering to think I, or Anyone dealing with this weirdness, may not be able to go back to it. I’m sure that you know that doing your craft is far more than just a job or a hobby. This is the first time in my life I’ve had to confront “Can’t” rather than “Not right now”.
The fact that you’ve been able to pick back up So many times before is very inspiring. And from the sounds of it you’ve risen like a phoenix from far worse wreckage! This isn’t an end, it’s just a really crappy road block.

You’re likely to run into a lot of these doctors who don’t want to lose face on your road to recovery, but I hope you can keep the same mindset. You need to know your options, “I dunno” is not an acceptable answer, and if there’s a Name for it than someone out there knows how to deal with it.
My mantra for years no has been "Do Not let someone’s professional problems get in the way of your recovery."
The misery of surgery, honestly, is not even on the same Planet as to how miserable the suffering makes you. A neck wound will seem like a walk in the park.
You are spot on, even well wishers don’t get it. They still mean well. I had some friends INSIST I not get surgery and go to them for specialized massage. In hindsight, allowing them to try and break up the “muscle knots” in my neck could very well have damaged my carotid or given me a stroke. My elongated styloid had been broken at some point (likely by me jabbing at it) and was free floating as well as the calcification from my hyoid rubbing precariously above my vasculature. I’ve also heard the words “yoga” and “gluten-free” so many times that they now makes me break out in hives.

Follow your gut, listen to your body, and remember people’s Feelings aren’t going to fix you.

Also, Isaiah- You are Amazing! That’s very giving of you to offer your expertise. I would have been so relieved to speak with you in person about your story before and after surgery. I hope the local support system pans out, you would do So much good.

Hi Snappleofdiscord, thank you for your comprehensive letter.

You are right Isaiah is amazing!

Thank you for letting me know about Dr. Cognetti. It’s good to know someone is putting together per the puzzle. It sound like you’ve had a Forest Gump type of life as well!

I am feeling much more centered now. I wish I could calm my family and friends.

Thank you for the compliments about reinventing myself. I just got a letter today from a friend who was in several bands with me in High School. He’s a drummer and guitarist. He reminded me that I can play other instruments if I need to and then told me if I get brain damage I can play drums! HA! What a crack up! It will be OK. It’s just really inconvenient. Both hubby and I are self employed. That means flying to San Jose with me 3 more times could be a hardship, but I guess we’ll let God work that out.

Hubby had to remind me that I heard Dr. S with my own filter. He thought it was good to have a doctor spell out the dangers. My husband didn’t think it was as much of a focus as I remember. OK six weeks to go until I’m allowed to say the drugs don’t cut it. Thank you for the pep talk :slight_smile:

I play sax and sing. Thirty three days ago, I had surgery to remove the left superior horn of my Adam’s apple which was bent inward, intruding into places it shouldn’t. It was visible on the video camera when I swallowed. Poke, poke. It’s just underneath the hyoid bone. Basically, it’s the left wall of my voice box, and currently sitting in a specimen jar in a hospital lab in Seattle.

I’m not saying my experience is the same as if it were a styloid poking around in places it shouldn’t. The angles may be different. But it’s approximately the same neighborhood, so my story might apply to your case.

Playing and blowing my sax hard triggered symptoms. Playing softly was no problem. Eating and swallowing triggered symptoms.

After surgery, my voice range gained two whole steps at the low end, but lost 4 or 5 at the top. I can’t hit middle C, which puts a major damper on any ensemble singing. Thirty three days after surgery, I found another 1/2 step at the top end, but it really, really hurts to sing up high. I’m sorry I tried. I need to heal some more before I attempt that again.

The surgeon did not warn me that I might have voice changes, but even if these are permanent I would still have agreed to do the surgery. The benefits outweigh the costs. It’s sad that I may never sing in public again. I was a church musician and you know how important (sometimes exaggerated) the whole vocal worship experience has become these days. Are we a church or a performing arts group? There’s a lot of conflicting emotions surrounding that topic. But my health comes first. So does yours.

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! :laughing: 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. :slight_smile:

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.

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. :grinning:

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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!

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.

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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. :blush:

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. :sunglasses::notes::smile:

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

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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.

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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.


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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! :grinning:

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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 :heart: