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Eagle Syndrome - Online Support Group

Devastation in Dallas


#1

Morning All,
I saw Dr. Chan of UTSW in Dallas yesterday. They seem to be very efficient there and also brand new building. Dr. Chan told me she did not believe me to have ES. She says my SPs aren’t long enough to warrant surgery. She did not mention anything about thickness or angle being factors and I just didn’t have any fight left to argue the point so I didn’t bother to mention it. She says she never heard of anyone with the symptom I have of the ligament getting stuck on the hyoid or whatever is going on when I have that “something is terribly wrong” thing happen the front/side of my neck. She did tell me that my symptoms could be more than one thing going on and that several of them indicated Ernest Syndrome - (anyone else been told this)? When I asked her what that was she just said it’s even more rare than ES but did not elaborate or say that she treated it or knew of anyone (because there aren’t any as I found out when I got home to do a bit of research)! And with my devastation, I didn’t even realize she didn’t answer the question about Ernest Syndrome until we were on the way back to Oklahoma. I think she may have gone back to the computer screen and changed the subject - don’t remember. Basically it is injured Styloid Ligaments and given my history of various head trauma, that would be an easy diagnoses for a small handful of my symptoms. She offered to refer me to a Rheumy friend of hers to further look into autoimmune (no thank you…been doing that for YEARS)! I know in my heart and knew it the moment I started my research into ES that it is most definitely the cause of all my pain/symptoms and I am having a hard time accepting that I cannot do anything to remedy the situation. I have no more fight… Dallas was my last hope. I will no longer add to my household’s financial burden with more medical bills and more time off work to chase this thing. Looks like I am back to crazy - spent the last several years there so I know it well. This group has been a lifeline for me for the last few months and for that I am so grateful.


#2

Dear kiZe6159,
:sob: :sob: :sob: :sob: :sob:
I am SOOOOO SORRY for all you’ve been through & especially rejection after rejection. I would still recommend you send your scans either to Dr. Samji or Dr. Cognetti to get their opinions. Sadly, there are some doctors who think the styloids have to be excessively long to be problematic. Sounds like Dr. Chan-Leveno might be one of those.
I BEG YOU not to quit trying to get your situation taken care of. Sometimes there is a financial burden that is necessary for oddball health problems. You can’t live like you are & knowing that surgery will potentially make all the difference for you, please leave no stone unturned in finding someone to help you.
Dr Samji’s medical assistant’s email is kim @ camino ent . com & the office number is 408 - 227 - 6300 (extra spaces are required so site doesn’t block email & phone number. Disregard them if you do send an email). You can send an email & a copy of your CT scan & request a phone consult. If he feels your case could be helped by surgery, Kim will email you back to set up an appointment. I know CA is far away for you but perhaps having confirmation of your ES from a very reputable doctor will go far in helping you find someone more local to do surgery. (Or, you could come to sunny, CA for a visit :wink:). I’d be your welcoming committee!
:hugs: Big hug to you & again, please don’t give up. I’m praying for you to be encouraged not discouraged.
Always here for you.


#3

That’s so tough, especially having seen a doctor with experience… I think that there have been a couple of members who have been diagnosed with Ernest Syndrome too- it might be that the steroid/ lidocaine injections would help that, I’m surprised she didn’t suggest that. It would be a cheaper option to try first? You could use the magnifying glass icon to search discussions for Ernest.
But I do agree with Isaiah that it could be worth sending your scans to Dr Samji, it’s not going to go away, & I can totally understand the financial situation, but equally you being in pain all the time is not going to help your family financially or emotionally if you leave it. Have a few days to mope & feel sorry for yourself (you deserve it after that appt.), & then try & find that fight to keep going.
And feel free to rant here any time, we understand & are happy to listen!
Big hugs to you… :hugs: :hugs: :hugs:


#4

My scans did not show an elongated styloid process necessarily, I have a long line of broken califications in my neck that she said was more than likely the calicified ligament but she said it definitely would cause rhe same type symptoms. She offered “exploratory surgery” as she said she would basically have to make sure she found all of the pieces of calcification and remove them. While she was at it of course she would check my styloid. I have other calcification the scan showed in my parotid gland and other spit glands as well. She was willing to do my surgery though. Although I have suffered for years she thought of exploratory surgery in my neck is a bit scary to me so I opted to wait it out as long as I possibly can. I’m sorry your appt didn’t go better.


#5

Hey Jules,
She did offer the steroid injections and I refused. I’m not interested in more “masking” and if steroids are like cortisone, I’ve been told that stuff crystalizes after a period of time and I sure don’t need more junk in my neck. Got a cortisone shot in my neck/shoulder during my recovery of whiplash and it was awful. Didn’t do anything but make it hurt more. I am now 59 and had the whiplash accident at 28. I have never recovered from that injury and at least now I know why.


#6

Morning Shanna_W
Thanks bunches for responding to my inquiry! I hate to hear that you didn’t have the confidence for her to do an exploratory, though that’s how I felt with our local “professional”. And I think it depends a lot on the day…some days are good (which was the case on Thursday) and some days not (like yesterday). Yesterday I would have let someone cut off my head to put me out of my misery!
I really had envisioned a perfect visit with her - both of us sharing what we know and coming together to fix this thing. As soon as she said I wasn’t a candidate for surgery and that she would not do it, I shut down. Didn’t have the energy to even argue anything with her. I wish I would have asked her all the questions I planned to ask about surgery itself and I would maybe have gotten a better feel for her actual knowledge and abilities. The only thing I asked her before she exited the room was whether she wanted to be on the list of possible surgeons for ES. I told her I found her info on an online support group. She said yes and that she seems to be the only doctor in the area with any experience on it.
So, about your issues…have you progressed any or remain the same? Have you searched for any alternatives?


#7

Morning Isaiah_40_30
I know giving up isn’t going to get me anywhere, but then again neither is getting all stoked up for another disappointment! This thing truly is maddening. I will at some point consult with one of the experts - most likely Cali…sounds like an area I would like to visit anyhow! I know that I cannot live with this, but I really am just running out of steam. So frustrating that I am putting my 110% in but I’m getting back maybe 50% from my health care professionals. I cannot figure out why (if I actually do have Ernest Syndrome) there isn’t a remedy of removing the “injured” ligament. The ligament is removed with ES surgery. Then I think about that and realize that I don’t just want the ligament removed if they are going in - just get it all.
I sure don’t want to become a pill-head, but I seem to be headed there. Having to take 3 and 4 tramadols per day rather than the occasional daytime dose. Always have to take one of those and a flexeril to even think about sleeping but I’m afraid if I have to take it all day long that it won’t work at nite. Oh the frustrations of it all…thank all of you guys for being my sounding board! I’ll say it again…you guys have truly saved my life!


#8

Happy Saturday kiZe6159!

WHEW! You had me worried but then I need to learn which types of posts for each member are “venting” & which are really sincere. Do as Jules suggested: “Have a few days to mope and feel sorry for yourself (you deserve it after that appt.), and then try and find that fight to keep going.”
I’d love for you to come to CA. It’s a must do at least once in your lifetime. We’re close to the same age, & I had a whiplash injury at 23. Bet that’s where our ES started!!
You’ll beat this! Baby steps over time amount to forward leaps later!
:two_hearts:


#9

kiZe6159, I am so, so sorry that things did not work out for you in Dallas. I gave up so many times when I was going through that merry-go-round down in Houston. I will tell you, Yah gives us all a window to go through and then He closes it. My life was so miserable and I was literally dying.
Because I could not get diagnosed for 17 years, I realized that all I was doing was going to the mechanics and not going to the manufacturer…Yes, I had to go back to the one who created me. Not the mechanics who could only do small repairs.

That was a turning point for me. Yes, it was exhausting and I had to “wait” for Him to answer me. If you are low on your hope, go to the Father…You have nothing to lose. He knows what is wrong…I was full of fear and His Word says that He has not given us a spirit of fear. Fear is of the enemy! Fear keeps us from moving forward because it makes us bow down to it. It is not of Yah. He has given us all power to defeat the enemy. I am not a “religious” person, I just know what His Word tells us about us.

I pray that you will press in and allow the Father to order your steps. It will not be easy because the enemy wants us to not walk in health. I would love to meet with you in OKC or Edmond. I want to help you. Do you have my tel#???


#10

Best to private message each other- the site doesn’t like the phone numbers being put on, you have to write them as words!
@kiZe6159 - I had a whiplash injury nearly 25 years agao, had an experimental treatment of traction & manipulation when it hadn’t improved after 6 months- & boy did it hurt! I think that on top of the injury has caused the problems… I can see that you don’t want to try the steroids if you’ve had problems with that before- sometimes it has helped members, & there’ve been a few who’ve had them to tide them over until they can find the right doc for surgery, but if it’s not helped you before with your neck then fair enough…
I hated the idea of taking pills, but eventually accepted that it had to be done- not just for me but for my family too, as being in pain wasn’t great for my mood!! You put it very well when you said you’d happily let someone cut off your head!
& I completely get it about the disappointment of seeing the doctor & shutting down while there- I always advise everyone to take info with them to argue their case, but that wasn’t something I could do very well- I would always be intimidated by the doctors & then my mind would go blank!! Did you have anyone go with you? If you have someone , sometimes that can help.


#11

Thanks Jules for advising about the phone numbers. I hope kiZe6159 does get in contact with me. For those of us who have had a good outcome after surgery, I want the same for all ES sufferers. I sometimes feel like I get a small sensation but, I pray about it and I try not to dwell on the negative. Thank you for always being positive and encouraging for the rest of us. I hope kiZe6159 does get together with me at least to just lift each other up. Life sucks when you don’t feel good.


#12

@Jules & Isaiah_40_31
Yes, I think that whiplash injury finished me off. Was kind of a kaddy-wompass kind of whip…not straight on front to back. I’ve had lots of different types of therapy - especially in the first years (neuro even bullied me into a cortisone shot). I frequently get muscle spasms in my neck and mostly under my shoulder blades. Have been getting chiropractic care with all of it for years and years. Sometimes I lock up and that is really something!
I did take my husband with me to see Krempl and Chan-Leveno. We both agree that somehow the subject got changed when I asked Chan what Ernest Syndrome is and she never really answered my question other than to say almost under her breath that it is even more rare than ES and much more difficult to find someone to treat. What I most regret is not asking her my surgical type questions that I had prepared. Again, knowing the answers but testing her so I could have given everyone here a better idea of her and whether she actually knows what’s up! I am so sorry for that because I know how important it is.
Massage, flexeril and tramadol are what have saved me this far and I suppose I will have to up the anti and hope for the best. Went and purchased CBD on Saturday and I am giving it a whirl. Good News is that the hubby is agreeable to San Jose if that’s what it takes to get my life back!
@Hadassa…Thank you so much for your kind words and offering your support. I work a full time job and also do nails on the side (evenings & Saturdays) so I don’t have any time available for much of anything. All my spare time goes to trying to maintain my share of the household chores and keeping myself moving foward. I literally don’t have any sort of social life - friends or family these days. Even my lunch hours are usually spent running errands. It’s been so long since I felt good, I’m really not sure how I would react to being pain free - always just grit my teeth a bit harder and move on.


#13

Good Girl! I like this attitude much better than in your Devastation in Dallas post (though I totally understand your mindset after that long & discouraging trip!!)! Your’re back on your game!
It’s good you keep yourself busy but it would be nice if you also had “a life” apart from work & pain. It’s also good you have a regimen that’s keeping you in your feet but I wouldn’t opt for being on Tramadol forever myself! Had a bad experience w/ it a few years ago. Not appropriate to post publicly. :stuck_out_tongue_winking_eye:
Keep on the ES warpath! You’ll find the right surgeon & be able to put this behind you hopefully sooner than later!
:two_hearts:


#14

That’s okay kiZe6159, I too am somewhat busy. It seems, the older I get, the busier I am! Today, I was out there by Shartel and Classen with my husband for some tests. It was basically an all day thing. I got home and went out to do all of my bedding. I am exhausted. I am now just checking my emails and I’ll do some face booking with my friends and then, try to get some sleep. The offer still stands in maybe getting together sometime so that we can give our testimonies. Mine is a doozey…LOL.

Just an FYI, I love La Baguette on Main Street in Norman. Best place to eat quiche.


#15

I don’t know how you’re holding down a full time job, & doing evenings as well! I was only doing part time voluntary work & that was enough with the ES symptoms… I take my hat off to you & can understand that you felt so weary after your appt. Good that you can maybe consider seeing Dr Samji! Keep strong!


#16

As I am lying in bed 8 days post op, it angers me still to see how we are being treated. Dr Samji is a good start. In your shoes, I would try to get another copy of your scan, so you have two. I would contact Dr Samji, but I would also contact Dr Keith Sale at University of Kansas. Dr Samji is a long flight from Louisiana and Kansas. He accepted me for only one side. So I still had one side, the most painful side to plan for.
Another member had surgery with Dr Keith Sale at the university of Kansas. Had I not been led to the surgeon in Louisiana, I planned to try Dr Sale. He is head of the department, I believe, and a skull base surgeon. He was recommended on this site by a member. My only contact was to see if he accepted my insurance,because, I found my doc. You might want to google him at U of kansas, see if you can speak to his assistant and find out if you can send your records and a disk to his office for review. That way you have two irons in the fire. Are there any other states closer who have skull base physicians listed or mentioned?
It is great if Dr Samji ultimately accepts you and will operate on the worst side, but why wait to put out other feelers. Make several copies of pertinent consults diagnosis and anything relavant. Keep originals together and handy for future copies. When you send your cd out, make sure to have your address on it and ask them to upload and return. After a reasonable time call and ask if it was received uploaded and returned so you can have it in your files. Once mine was returned to the imaging company and destroyed. Also, sometimes,they file them. You want them returned.
The styloid just removed was 3.0 cm and what was left and/or possibly regrew since 2013,when 2.8 was removed internally. My doctor did not pay as much attention to length as he did thickness and symptoms.
There is help, it is incredibly hard to find.


#17

Emma!
I know about the anger…grrrrr! I was so angry all the way home from Dallas I didn’t speak! My husband was afraid to even turn on the radio! LOL Thank you so much for the info on Kansas. I am currently working on getting my pan-am radiograph disk back from OKC. that seems to show a much better picture of what is really going on. I am a bit skeptical about the CT scams these days. Once I have that I should be good to go. My primary care nurse practitioner is awesome and will help me send scans and notes anywhere I need her to. I hope you continue to do well with your recovery…I will hop over and look see if you’ve posted anything new. Thank you so much for your post and the great info on moving forward.


#18

Hi @kiZe6159
I’m sorry for what you are going through.
I searched for four years after unknowingly breaking an ES bone from a car incident. Prior to that I had two separate whiplash incidents over a 30 year period. There were strange problems that now make sense, but not back then.
Don’t give up. The doctor that said ‘Ernest Syndrome is more rare’ must have failed her beginning math class. Many ENT’s call it a cross over condition and it is considered more common than ES. That doctor is also a narcissist who had forgotten her oath of first do no harm. There is such thing as psychological harm. I am infuriated.
I think I may have had something that was similar to you.
I had scar tissue that rubbed across the hyoid bone. It was apparently the stands that formed an off center sort of ‘triangle’. It sounds like you could have something very similar. I had surgeries for both styloid shortened. The broken styloid was a surprise to everyone. No one could figure out the loss of voice or the pain across my hyoiid.
My surgeries were; two years ago on one side and 18 months ago on the other. The scar tissue crossing the hyoid wasn’t known until 2 months ago. It broke and catapulted the hyoid into part of my tongue and it was scary to say the least. Here’s the good news - it needed to happen. My improvement had stalled a year ago, but now that the strand of scar tissue head broken, I am getting better. I can sing for the first time in four years. Not a lot, but 6 choruses.
No two necks are the same. Muscles and nerves, etc can be in different places. If a doctor can’t handle individual changes in the neck then perhaps they need a different specialty.
My symptoms were very bad before the surgeries. The two weirdest were 1) the feeling that boiling water had spilled on my shin 2)A feeling that I had been stabbed in the side. #1 took a few months after surgery to subside. #2 has not happened in two years. Everything else is much better than before surgery. I can take a power boat ride and not be sick. I used to be sick for at least three days after such a ride. I can dance. I can laugh hard.
There’s a little thing called a “carotid body”. There are two; one located on each side of the neck on each of the carotid vessels above the carotid sinus. They look like a science fiction knee pad lol. They monitor blood pressure. Apparently the broken ES bone on my right side created quite a bit of damage to that ‘Carotid Body’. It basically took the damage and was the thing that kept my vessel from being ruptured. This is the 4th potentially life threatening problem caused by my ES. It truly boggles my mind.
I have to say once more, I’m not a fan of posting images. I beg of you all to please only share them privately. It was because of an image posted on this site that I nearly did not survive this journey. My doctor sent me home to “think about it” because he thought my image was a fake. Someone before me took an image from this site as part of an elaborate scheme. My doctor thought I was part of that group because after four years of a broken bone in my neck, I was just too tired to cry. Please don’t post images. You may not know how they are used, but trust me they are stolen and used - resulting in hurting everyone’s chances of being believed. Please only share them privately to people who have earned your trust.
Hang in there and don’t give up. Keep looking until you find a competent doctor. It used to be public record to look up a doctor’s test scores in college. It’s how my mother used to choose my family’s physicians and dentists lol. Doctors and surgeons are people. People make mistakes. Some should never have received a degree. I have found some gems, but it took time. Hang in there.


#19

I truly don’t know what I would do without this awesome group. My husband is amazed every time I read him a snippet and so impressed when someone responds to me directly(someone actually cares and makes sense!). I am sure he was beginning to agree with all the docs in that I surely must be imagining much of this crazy ES thing. He is just amazed at the camaraderie and support - and so am I. You all make it impossible for me to slip back into the darkness.
And yes, I believe though we all have many symptoms in common, there are those odd-ball symptoms that don’t even make sense, but they are real and they happen - often! It took me a number of years to stop making an appointment everytime something else weird popped up. I learned that if I waited, it would stop in a few weeks (usually right about the time I would have shown up to the doc’s office for my appt). Then the time comes when things don’t go away and I cannot imagine continuing to live my life like this. I do hope that I find the right surgeon soon. Fingers crossed my neuro will be able to help when I see him tomorrow.
That scar tissue thing across the hyoid sounds like what I am experiencing MusicGeek…I’ve thought it to be the ligament, but scar tissue sounds feasible! Yes, the pain is crazy though I noted during the last incident that I can speak - just can’t swallow. I surely don’t know what I will do if it sticks like that and stays stuck. Terrified that the ER staff will not know what to do to help me! How did that episode play out with you as far as what happened start to finish(if you don’t mind sharing)?


#20

Hi @kiZe6159
I’ll write a private message. Sorry it’s taking me a while.