Looks like you will be getting attention. Good luck.
HOORAY! & BOO! HISS!! So glad you’ve finally gotten a more definitive diagnosis but sorry that it’s more severe than at first thought.
Did the scans you sent to Dr. Samji show this? He usually takes on situations such as yours. Perhaps it will be better for you to see someone closer to home though. If you aren’t impressed w/ Dr. Osborne, or if he feels he can’t take care of your situation, please pursue Dr. Milligan in Phoenix as he’s done a number of ES surgeries with good outcomes. There’s another doctor in Los Angeles who’s done some ES surgeries & I know of at least one person on this forum who had him do her surgery. He’s at UCLA Med Center - Dr. Chhetri. There, now you have 2 back-up options.
Amazing! Thank you! For the doctor referrals. But the actual call came right when I needed it. Today was super rough and I didn’t have my wife pushing me to keep up and moving. So I’m laying there feeling super weak like I’m just conscious enough to lay awake but the idea of turning over sounds like chore. Wondering if… anyway. And then my phone rang and he was all “be careful you can stroke out if the plaque breaks free.” Then I was wide-awake-ish. That means I’m going to nationals to watch others compete. Which is this weekend, but hey who knows if I didn’t get the call I coulda stroked at the competition instead of choking . But let’s get real I’ve got two 7 sum-odd cm of bones choking me:sweat_smile:. I just want that contrast CT to hit the system so they’ll call quicker.
Timing can be everything when you’re feeling awful! I hope you’re able to enjoy the finals. Imagine yourself there next year participating! I’m glad you were symptomatic & diagnosed before you put yourself in a seriously compromised situation which could have had “terminal” results. I’ll be praying for you to get that CT w/ contrast & an appointment w/ Dr. Osborn ASAP.
Mixed blessings- obviously what you’ve been told is very scary, but like you say, it’s good that someone’s finally listening & you’ve been vindicated…
Isaiah’s given you some good advice about doctors- make sure you are very confident with your choice of doctor, & that they’re experienced.
So strange that this hasn’t been picked up before!
Thinking of you, & hope that the time passes quickly for you having the extra tests & consultations!
Wow Shanef89…wonders never cease!!! That’s exactly how I feel - how has this situation been missed for SOOOOOO LONGGGGG??? Test after test after scan after scan! So glad you have that information now and you can move on to the next battle - finding a doctor you are comfortable with. Best to you my friend and look forward to your progress/posts about your journey.
UPDATE: The VA is a hot mess! a month ago my doctor called me telling me that both my ligaments are actually completely calcified and he is worried there might be plaque(fat build-up) in my arteries because of the pressure and extent of my BSHLC (tired of writing Bilateral StyloHyoid Ligament Calcification). He ordered a CT Angiogram of my Neck and said that I would be contacted to schedule it. fast forward 3 weeks still no word, I don’t deserve it, so i called around not getting anywhere for at least a week my ENTs office was calling the VA trying to figure out whats going on. they said i needed to get blood work done before they could schedule it! what!? where was this info a month ago while im twiddling my thumbs waiting to be contacted by someone. who can’t be bothered to call me and say “hey you need to go get blood work done at any VA facility. K Bye.” anyway blood work done! took 30 min. then the VA decided to “hot potato” my CTA back and forth between them and try west. so ive been feeling shitty and was fed up so i went to the ER said that ive been here before for a whole slew of problems, you guys have been making it extremely difficult to get this scan. i need it and im not going to wait another month just to get scheduled for a scan a month from that. so just give me the CTA. they obliged! surprisingly i only waited 9 hours at the ER. but thats better than 2 more months. now im waiting on word back from my ENT. i am so disgusted with the VA’s Health don’t Care professionals
I love your closing line Shanef89! - the VAs “don’t Care”
professionals. I’m sorry you’ve been subjected to a system that’s supposed to be helping you but is hindering you in this case. I know some people have had good support by the VA system but not everyone. I guess that holds true even for people outside of the system depending on what insurance they have or which doctors they see. Nonetheless it’s TERRIBLY FRUSTRATING!
I applaud your brazenness at the ER in demanding a CT scan! Good for you! That will go far in helping to get the ball rolling toward surgery. Dr. Samji would be more receptive to you if you were able to send him a CT scan & report. He doesn’t work w/ anyone without a “visible” diagnosis first. You may not want to “go there” w/ him again, but now you have hard evidence for your case (assuming the radiologist who reads your scan has a clue about ES). At any rate, even if you choose a different surgeon, I’m sure you’ll feel better once your calcified ligaments are removed.
Please keep us posted about how your case progresses!
Soooo frustrating for you, sounds a bit like the UKs NHS, witing for months to have a scan, then more months to see someone for the results…they’re organised with doing pre-op tests, but then you wait so long for the op that they’re outdated! Anyway, at least you’re one step forward with having the scan done- I know you’re feeling rough, but well done for persevering & fighting for yourself. Unfortunately we’ve all had to do this, so keep strong & don’t give up!
I hope that you hear back soon, thinking of you…
And the CTA was “degraded” . I’m at a loss, was it machine dysfunction or human error!? Either way, “hope” has officially left me to help an easier problem to solve like world peace. I’ll let you know if something else happens.
If I were you, I’d go back to the ER & tell them you’d like a “re-do”. If they can’t do it right the first time, they owe you! That’s ridiculous & sounds like an excuse for an inept radiology technician. If you get charged for that CT, fight it!!
Won’t your primary care doctor Rx a CT scan for you? I’m feeling FRUSTRATED about your situation alongside you!
Just for the record, can you tell us what diagnostic scans you have had & what they showed? You must have at least had an x-ray or something for your ES diagnosis. I’m sorry I’ve forgotten if it was an ENT or dentist who gave you the ES diagnosis.
I love that you have a sense of humor in the midst of all this.
Humor is our best friend in these times! You can’t make up some of the stuff you are going through Shanef89!!!
First there was my neck X-ray, the VA radiologist didn’t notice the bilateral calcification. So my doctor told me there’s nothing wrong with my neck. The VA has this online system where you can actually download your X-rays and look at them yourse lf. So I did, I and saw the bony structures later to learn of ES. After that I began hounding my doctor asking like “how can they miss this!? It’s so plain to see!” But VA primary doctors and ENTs cannot look at the scans themselves, they don’t have access. Or at least so they tell me. I called their bullshit to their face. Asking and begging for a CT of the neck, I went to the ER(the first of many) and because I was confused and delirious they CT’d my head. I then went back and got one of the neck. I took it to my ENT that is in our directory Dr Scott Manthei. Once I gave him the 3D reconstruction he called and said I had the worst calcification he’s ever seen(so in that way he gave me the diagnosis, but I knew from the first X-rays). He then ordered the CTAngio. Which is where I’m at now. I think I will go back and be like I need a redo!
You’re closer than you think - these things have a “it’ll get harder right before it’ll get better” kind of phenomenon for whatever reason. I wrote alot in my journal, typed up actually, my feelings/thoughts since September when I first saw “the white lines” on a dental x-ray and there were three separate occasions where I told the universe “how much more can I take of this”? The ENT telling me “it’s not really true ES unless you have elongated SP”, the painful chiropractor neck massages that did nothing, handing an acupuncture doctor $200 cash and having no change in symptoms after treatment, paying for a TMJ mouthpiece with no change…after all these moments I would catch a small (small) break the next day. A cancellation at Emory to get me in sooner, a reimbursement for a CT scan that I paid for and ended up being covered at 100%. Little things like that would keep me going. Now I’m 41 days away from surgery with a surgeon I really like. I would not have believed I had made it to this point back in October. I was so lost. When you’re going through hell…keep going - Winston Churchill
UPDATE: thank you! makes a lot of sense and that is how everything is going. just yesterday i finally got a call out of the blue from the surgeon’s office that i am going to be going to(Dr Ryan Osborne of Osborne Head and Neck in LA). they didn’t even hear from the VA about me i think it was from my out in town ENT that hit him up about me. he said a video consult would be $175, but when he was gracious enough to waive the fee when he heard my story. so now i’m waiting for them to get my scans and for him to review them. things are finally looking up since i also learned of this back in september as well. SewMomma im very happy for you that you have your surgery scheduled! i can’t wait to have my date. SOON!
There ya go, you caught a break! More to come! May the “hiccups” be minimal from here on!
I’m so glad to hear about this step forward, Shanef89! SewMomma got it right! In life we often experience what feels like 1 step forward & 2 steps back but eventually the tables turn & the progress is 2 steps forward & 1 or none back!
Keep your chin up (if you can…depending on what your ES symptoms allow…). I’ll be praying that Dr. Osborne is your man for surgery!!
Really glad that you’re getting somewhere & that someone is listening to you & willing to help you! I hope that he takes on your case!
hahahaha Isaiah_40_31 Keep your chin up…if you can! so true. i live in this constant “chin too high, bring it down. too low! pick it up! why are you looking left look right! too far right! stop!” so that was too funny thanks for that !
My son accuses me of having an accidental sense of humor. Glad I was able to tickle your funny bone, Shanef89!