Hi, I’m still not officially diagnosed, but a doctor did some research and alerted me about Eagles Syndrome and convinced me to go to my ENT. I’m on a path of getting test etc once everyone is back from Presidents’ Day vacations. I am a muti instrumentalist and singer. I haven’t been able to sing for 17 months. I was still able to play lead tenor in my big band. I took some time off and just started up with my band again, and the pain has become really bad. Maybe it’s wishful thinking, but I was hoping it wasn’t caused by Playing sax again. You see I haven’t had to talk much because I was working on a project that kept me isolated. Now that that project is done, I have friends coming out of the woodwork and I’ve been forced to talk more. Talking has hurt during this time as well. The pain used to lessen if I didn’t talk for a few days. It’s no longer doing that. I had an MRI a week ago that was really painful. I was told that it didn’t make sense for it to hurt. My band was so happy to have me back. We have a nice gig coming up mid March. I’m just wondering if I’m causing more damage by trying to make it to this last gig. It doesn’t hurt when I practice. I actually feel a little better, but the next day I’m in a lot of pain. Saxophones tend to have your neck turned when playing. My Harpo Marx impersonation is getting pretty good…
Are there other wind musicians out there?
I don't play any instruments but curious on why an MRI would hurt? Do you have ANY metal implants in your body? pacemaker?
Hi Kelx. That’s the million dollar question. I’ve survived a botched appendectomy where someone unqualified closed the surgery. I have extra muscles from being a wind musician and apparently they had never encountered this on a woman. I requested no staples and yet I had been staples internally using exterior type staples. It took a long time to figure out, until I set off the metal detectors at the airport. 3 surgeries later most of the damage was repaired and 13 3/4" staples were removed. I think one staple must still be there. I also have a titanium implant in my middle ear that is extremely unusual (I had a clausteotoma when I was a child). At the imaging center I was asked the standard questions and I’ve been through so much trauma that the titanium implant was a lifetime ago and I had forgotten about it. The majority of pain felt like my throat was being ripped out (sorry to be graphic). There have been some very good doctors who have helped me through the aftermath of the Doctor who did the appendectomy. Two even gave me the equipment to start my first recording set up. I’ve had to “start over” as a wind musician several times because of the surgeries. Ive had to reinvent myself, I’ve had to lean on God, but I am happy where I landed. I would like to have a voice again, to sing again to play wind instruments again and move forward. My heart is very strong in all aspects 
I should add that I am meeting with an Endocrinologist, Thyrroidologist with pictures in hand this Thursday. Perhaps she’ll have answers about what caused the painful MRI. My cranial sacral specialist and my chiropractor want me go staight to an Eagle Syndrome specialist.
Yes any type of metal in your body will cause some pain with an MRI....Thats why they ask if you have any metal implants inside you before one. Have you had a CT scan with Contrast too see if you have eagles? CT scan is the best way to diagnose eagles syndrome. If it is eagles syndrome I know exactly what your going through....Ive been seeing over 10 doctors over 50 appointments this past year and half, finally found a surgeon to remove this styloid. On the waiting list for surgury, seems like a lifetime. Horrendous pain I'm in. Im now having pain on the oppposite side....yey me!! Keeps getting better for me!
I am painfully aware. I was asked specific questions I don’t have a voice and it didn’t help the situation. Re:CT scan with contrast - yes my cranial Doctor agrees. The MRI was before ES was suspected.
The styloid processes act as anchors for the ligaments of the floor of the mouth and tongue, so that could well be why you feel pain after playing- I found that tongue movements really set the pain off, but sadly I'm not a musician!
Quite a few people have found that singing is affected- one member called 'eaglewontbeatme' is a professional singer and had both sides operated on a while ago. He's posted some info about his journey, operations and recovery, so you could have a look at his page if you're interested. It gives hope!
Hi MusicGeek. I'm not a musician, but hubby is so we have a very musical household. I'm writing because I had an interesting experience around thanksgiving when I was playing around with a baritone horn. I really enjoyed learning how to play, and as you know training your lips and breathing to get any sound takes a bit of practice. However after trying it for a while (with breaks for recovering :) I was able to get some consistent sound and notes. I was having fun, but stopped finally because I was feeling quite exhausted in my jaw, neck and upper back area. The pain developing is very familiar and chronic, but I could feel it increasing and changing in flavor (makes sense?). Anyway, the pain was so fatiguing that I had a terrible night of sleeplessness and sickness so deep that I felt as though my body was in a state of nausea; not my stomach, but actually my connective tissue. I felt quite ill for days following, but at the same time I felt as though that kind of workout could be beneficial in smaller doses. This syndrome has caused much weakness in my neck and upper back, not just from inability to exercise and have an active life, but also due to the chronic spasms. I'm thinking of trying the horn again, but as said in smaller increments and over a longer period of time to see how that impacts my symptoms. I agree that not speaking for a time (or chewing, swallowing excessively, or moving neck for that matter) helps somewhat, but it's such a lonely life....sigh. I have an appt. with Dr. Samji in San Jose, CA in one month. I'll bring up the curiosity of wind instrument playing and eagle syndrome to him and see what the good doc has to say. BTW, my eagle is vascular although I believe it developed into that over many years. Hang in there!
Hi MusicGeek! I too am an unprofessional music geek and have played the clarinet a long time. I currently play in a community band. My journey with Eagles started a little over 2 years ago with hoarseness, pain on the right with swallowing, chewing, talking, tongue movement such as playing the clarinet and neck pain. I have been getting steroid and lidocaine injections in my neck over the past year that help a lot. I get them every 3-4 months. I have seen several ENT’s but have not felt comfortable/convinced that they are the surgeon for me, should I chose to have surgery. I have also been doing some neck, throat and tongue exercises/facial yoga exercises that really help to stretch the muscles and ligaments. I take a muscle relaxer and Tylenol for the discomfort. I wish you the best of luck, and hope you are able to continue playing your gigs!
I forgot to tell Kelx that I am sorry for her pain. Hang in there! I will pray for you!
I found out the thyroid was a false positive. I knew in my heart it was. I will pray for things to get better for you!
To Jules: Thank you for the information. OMG I had to digest for a while. The tongue connection makes a lot of sense. I used to tell my family that for some reason when I get emotional the pain gets worse. Now I realize it's when I choke back tears my tongue is involved. It's also possible that this had to do with the MRI pain. I had to argue with the MRI technician to allow me to sip some water before the test. She was concerned about her schedule. I was choking back tears during the test so it probably pushed the pain button on me. Anyway Thank You!
To Caliris: There are many benefits to playing a wind instrument. You need to start slow and watch yourself in a mirror and it would be good to have a lesson on proper form. The key to learning an instrument is consistency and also not doing anything physically new for 5 to 6 hours once done practicing.(including using a mouse on a new software program). I play 13 instruments and used to be able to sing. :) If I am diagnosed with Eagles I was hoping to see Dr. Samji myself. (He specializes with singers, and my range had been mysteriously decreasing.) Learning to play an instrument is much more organic than mechanic. The old addage that our brains are computers is wrong. We are bioligical beings and the right nutrician and time spacing are just as important as the instruction. 15 min a day for 5 days beats 2 hours on one day. With an injury I'd start with 5 or 10 min every other day. See how you feel maybe even every third day. Keep a journal and slowly build up. This is all if your doctor thinks it's a good idea :) I'd also ask about water aerobics for strengthening. That's how I recovered from the series of surgeries I had to do from the botched appendectomy.
To Kay:
It's very nice to meet you! I admire clarinet players, that is one of the harder instruments for me. I am one of the extremely lucky people who is a professional musician. It didn't happen over night. The irony of all this is I used to have a musicial instrument repair biz where one of my specialties was helping injured musicians to be able to play again. I have customized and fabricated keys and devices to help make playing possible. But I am not able to fabricate a new neck for myself LOL. Luckily I also play some non wind instruments. I didn't respond to anyone earlier because I was spinning my wheels mentally for a few days. The new thyroid doctor I visited pretended to know what Eagle Syndrome was and spoke to me in an extremely condescending manner. Regardless of what I have I know that Eagle Syndrome needs to be ruled out or ruled in so that I can move forward. I know I need to concentrate on the wonderful doctors who have helped me so far. I've been unable to sing for 18 months. I used to also do Voice Over, so that is also off the table.My throat has become worse with stretching. Surgery is scary, I understand all too well. My family has been commicating by text at the dinner table. We look quite stange when we go out LOL. I write my dinner order on an iPad. There is an app called "Notability" that fills in the words better than anything else I've found. For me the possibility of being able to have my old voice trumps my fear of surgery. I love to make people happy and I need my voice for that. If you'd like me to pray for you on a specific thing, let me know how you want to proceed.
To everyone; I've been advised to create a paper trail of requests to be tested. I had not thought of this before, and I think it's a good idea.
Thank you everyone for your well wishes. I hope to find out if playing this last gig is a good or bad idea. I told a few band members what's going on and they became very upset - I know it will be OK, so I'm trying to handle it without too much drama. I will pray for all of you regardless of circumstances.
I played the flute for several years but sadly, it's been put away for many more years than I played it. I find it interesting that singing is painful for you as I experienced the same thing before my ES diagnosis/surgeries. My singing is mostly during worship at church so nothing professional. I'm a soprano & found that singing higher notes caused my throat & jaw to tighten up to the point that they were both painful enough I'd have to stop singing. I had hoped that after surgery that problem would go away, but it seems to have abaited only partially. I can sing one or two songs before I start to have trouble again. I'm only 6 months out from my second surgery (Dr. Samji did both surgeries) & was told it can take a year for all the nerves, etc., to heal post op, so I continue to hold out hope that the singing discomfort will subside completely with a bit more time. I did ask Dr. Samji about my singing symptoms, & he said he'd had a very few patients that had mentioned a similar problem. but he couldn't diffinitively say the problem was a result of ES.
I am so sorry your life has been so thoroughly impacted by something you have yet to identify. I will pray tht you will be able to get your CT scan ASAP & that it will help clarify what is ailing you. It does sound like you've been resourceful in how you've chosen to communicate both with your family & otherwise. It's my opinion that you won't do any permanent damage if you play in your upcoming gig as your pain is coming from nerve irritation stemming from the way you hold your jaw and use your throat when you play but probably nothing more than that.
God is good. He won't give you more than you can handle.
I guess I should make an update. I was diagnosed with ES on both sides and will be flying to San Jose to meet with Dr. Samji to discuss “options”. So here we go. I wish wikipedia would update their info. It’s insulting. Every day someone who knows my music begs me “to get a second opinion”. I’ve haven’t been secretive, but I haven’t exactly announced this diagnosis. Judging from the responses of from people if I did make an announcement they’d send me to a loony farm in no time. One friend just blew a short circuit and she keeps asking me the same questions every other day as if I didn’t already answer them. I feel so bad, it’s like I caused her to have a stroke with my “news”. The people begging me to not have surgery don’t know how long it took to be diagnosed and how many doctors I’ve already seen. They absolutely don’t know how painful it is. I know it will be OK. I also know this isn’t a picnic. NOW of all times job offers for places I would have loved to work are coming in. On the upside I do prefer to be freelance and I was offered a bunch of freelance work for the future. I believe in prayer, and would love as much as anyone is willing to do.
My next batch of questions ;
Has anyone heard of getting both styloids done at once?
What is the recovery time for just one side and how long does one need to wait before the second surgery, if it is recommended to have two separate surgeries?
How long does one need to avoid flying after surgery?
Has anyone experienced facial paralysis? I had a client in the medical field beg me not to have surgery today because he was afraid I wouldn’t be able to play wind instruments again… It really shook me up. I explained to him that two sides of Eagles is dangerous. I sure I’ll get some answers later from the Doctor. I just lost all patience LOL.
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 
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
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.