@Shanef89. Hi! I just read thru ur posts. Just want to say i had ur exact same symptoms and plus some. Stomach. Head. Stroke feeling etc. went thro the same as u. Er doctors. Family. Noone believed me for 2 years til i got a diagnosis. I was fully calcified on both sides. My tmj caused it. It is really horrible and noone can understand it unless they went thro it. The symptoms r horrible. My own father and husband when after years of dr and er visits and noone finding anything they both told me i lost it and i should check myself in to a mental insisitution bc “ i really lost it”. Their exact words. I was suffering and noone believed me. Most horrible experience ever. I am so surprised about dr samji. I went to dr cognetti. Please push for surgery by an experienced surgeon asap. I truly felt like i was going to drop dead before i made it to surgery. Luckily somehow i made it. Through both surgeries. Feel a lot better. Now and then some syptoms still come n go. Im only a few months out. Stomach issues up and down too. I hope everything settles down eventually. But i feel for you. U are not alone. I believe all of ur symptoms including stomach r all caused by eagles bc im going thro the same thing. Plus heart issues. Just to warn you right side surgery no issues. Left side - 1 week aftee surgery i had severe heart issues and ended up in ER and put on beta blockers. My heart went crazy, really thought i was going to die again. But it calmed down n im not on pills anymore Thank God. I hope those symptoms go away n never come back. I had severe right eye pain before surgery which went away after surgery. But getting some right eye pains again this week makes me nervous but trying to stay calm. Hopefully it will pass. Hugs and prayers and pls feel free to reach out at anytime. We have to get eachother thro this awful journey! Wonderful people on this site have been much more knowledable and helpful than any doctor ive talked to. Good luck! One day at a time
Cupcake5 thank you for sharing your story with me a lil. Your a trooper for sticking through like that it’s not easy being alone like that, and not even having your “day 1”, “ride-or-die”, significant other believe hurts so much more. I do have more things I just forget most of them in the midst of typing. I misplaced money I don’t remember having in the first place, and it wasn’t mine to lose. The other day while I was driving it felt like I got sliced down my face with a knife! My jaw feels stuck in a vice. It’s caused weird fluctuations in my sexual drive(trying to be medical). When I’m laying down i can feel the pressure of my calcification on my styloid process which causes some wicked skull pain. Im writing this because I have to accept the pain In order to lessen its…well… pain. So I accept and analyze the pain and in this it helps me stay more relaxed. So writing about it helps. The most consistent is the weird eye/surrounding-area throbbing pain athat feels like I’m being punched In the face. It’s different from congestion. It’s sudden like a punch. The other day while eating breakfast I started crying/tearful throughout it like it would be so easy to go on a water fast. It hurts so bad to eat! I try to still exercise but I feel so drained when I’m just getting started. Probably because I’m not eating enough to sustain such a workout. There’s also this fun pain I get in the forehead area where it’s like I’m repeatedly being stabbed in the face with a needle. It’s not all the time but I just get a random face pain a day and it’s like a box of chocolates… I get these weird arm tingles. Sometimes it’s almost like my body forgets to breathe. We’ll see if that’s sleep apnea but I’ve had it happen during the day if my neck is in a weird spot. I hate the sinuses… OWWW!!! Right in. The cheek bones!!! Now the eye throb!!!
Hey Shanef89 - Hoping Dr. Osborne gets back to you quickly. Everything you’ve mentioned can be chalked up to ES & your calcified ligaments pressing on or otherwise irritating some cranial nerve or the other. There are 12 after all though some don’t “live” in the area where they’d be affected by your ligament calcification. I had the crazy eye stuff, though mine was a little different. Felt like my left eye was being pushed out from behind. Kept expecting to wake up one morning, open my eyes & find the left eye ball dangling (). Never happened, thankfully!! Had issues w/ exercise but mine were related to (& yours could be, too) blood pressure dropping instead of rising during exercise although your thought about not eating enough to provide the energy you need is also plausible. Arm tingling is likely accessory nerve.
You could try a liquid diet if eating is tough but you need to make sure you get adequate calories. There are a lot of high calorie protein powders on the market at this time for body builders. You could try one of those, add some fruit & veggies to the mix & voila! a healthy meal in a cup. If it’s too thick, thin it w/ water & work on drinking it over an hour if necessary.
I feel so sorry for the tough go you’ve had. Wish I could wave a magic & wand & fix this for you!
he is actually getting back to me very quickly! i have a Skype appt with him in an hour. its weird hearing about others pains, just because i understand it completely. earlier today it felt like i had someone tapping on my eyeball. the pain is so random and extreme. thank you for sharing it helps me remember that i can make it through and i am not alone. surprisingly enough i was able to make it through the semester without failing my classes which i really thought i was going to do. i just wish i could get one of the surgeries before next semester. and you could be right about the blood pressure during exercise because mine does drop a little bit. you give a lot of good advice. i wanted to reply sooner but its been finals week and i had a lot of catch up work to do. which sucks because i have to accept the fact there is no position that is without pain, and i have to accept that im going to spend most of the day in positions that just exacerbate the pain and symptoms. this whole semester ive done without studying because i can’t do the pain. anyway. 45 min to kill. thanks for reading.
WOW, Shanef89! I can’t imagine having to do school work while enduring ES. You are one determined guy! Good for you for persevering even if you didn’t do as well as you would have otherwise. You didn’t quit! That’s the key to conquering ES, too! You have done your due diligence & fought for yourself. Please, please let us know how your Skype appt., w/ Dr. Osborne went. I’m so hoping it was positive & you have a surgery date set.
no date set yet. I really like him though, he definitely will get the job done. He’s concerned about my arteries and want to wait to hear from neuro after they conduct vascular studies on me. And he wants the new CAT scan that I’m getting monday. Then we’ll reconvene there. It’s almost there
I’M SO HAPPY FOR YOU! What a crazy ride this has been! I’ll be praying everything lines up & test results are provided quickly so the surgical ball can get rolling!!
Your persistence is inspiring!!!
Shanef89, so glad you are getting the doctor. I like that Osborne is getting vascular studies, new CT and checking with a neuro. That is something my surgeon did. He did not get vascular studies, but he ordered an MRI as well and checked with a neuro. He wanted to rule out as many complications that might happen, and make sure nothing else was going on. You are on your way. Even though I did not appear to have a vascular problem, he did find the glossopharyngeal nerve crossing my carotid and he moved it and tucked it in some other tissue.
We will be thinking about you and SewMomma, that you both have great surgical outcomes.
UPDATE: I got the new CT Angio results saying that the internal carotid is not directly compressed by the calcifications. But there are smaller arteries that are being affected in that area. Dr Osborne said that he believes there are surgeons in Las Vegas that can handle this surgery for me. But since the VA won’t pay for him at this point he won’t be doing the surgery on me. I have an appt with a Las Vegas surgeon Dr Weingarten, Randall. So hopefully when I see him in 2 weeks I’ll get a surgery scheduled.
Sleeping is getting harder and harder. Last night every position I tried lead to various pains in my neck, base of skull, and face. I woke up feeling choked and like my right eye was slowly being spooned from its socket. Everyday I get to experience a new pain with extreme intensity but there is no wound to show for it. Like this one I feel now where it’s like someone’s fingers are pressing up in the soft spot under my jaw. Does anyone know any remedies that worked for their pain?
I’m very sorry to hear about your insurance issues. I hope so much for you that Dr. Weingarten has the experience to do your ES surgery. Perhaps you will be able to give us the name of a great ES surgeon in LV to add to our list!
As far as solutions for your pain/symptoms, for some people ice helps, others, heat. There’s always ibuprofen, acetaminophen, naproxen (Aleve), etc. Head position can make a difference though it sounds like you tried that w/o success. Sleeping w/ your head elevated (even up to the point where you’re almost sitting) can make a difference. A neck pillow like you’d use on an airplane (U or V shaped) placed behind your head or under your chin (to help hold your head up) might also be worth trying.
Hopefully others will pitch in w/ things they’ve tried that have helped.
So glad your next appt is only 2 weeks away & that your CT angio didn’t show any huge problem w/ your carotid arteries.
Sending you optimism for 2019 - It will be a year of healing for you.
Happy (almost) New Year!!
So sorry that you’re having such a hard time getting some treatment…I hope that this new doctor can help you.
As for sleeping, I ended up sleeping semi upright, either propped up with a wedge pillow & a v shaped orthopaedic pillow (they’re quite good as they take the pressure off the sides of your neck), or otherwise I would have to sleep in a recliner chair.
As for pain relief, there’s suggestions in the Newbies Guide section, & Isaiah’s given you some suggestions. One member tried lidocaine patches stuck on her neck, that might be worth a try?
Thinking of you…
UPDATE: yesterday I met with Dr Randall Weingarten. He isn’t qualified to perform my surgery, although he was able to actually diagnose me, something that previous doctors have been unwilling to do. But now I’m left with no clear direction to go. Dr Osborne is unwilling to pursue becoming a Veterans Choice Program provider, and the Doctor that Weingarten recommended is also not a provider. I believe I need to get a referral from doctor Weingarten for the specific surgery required, then the VA should be able to actually do its job, and find me a qualified surgeon.
At the very least my primary care doctor entered me into a pain management contract. So now I can manage my pain a lil better with the help of opioids. It’s funny to me how afraid doctors are of performing this surgery. And how completely devoid of fear I have towards it. My mother in law asked me how I could want to go through with the surgery when the risks are so scary. Without hesitation I said “I don’t care about the risks.” I’m more afraid of living with this condition, than dying in the operating room. Opioids or not, everyday is a torture. Either way after surgery I’ll have peace, and that’s all I want. As well as to feel whole again. I hope that’s possible.
HOW RUDE OF ME! I’m so sorry, I asked for your help and then I don’t thank you for all your help! Inexcusable! I know it’s late but thank you so much for all those wonderful tips, a lot of them I was doing already. But there were a couple that I hadn’t tried, and they did help me. Y’all are the only people that actually understand what I’m going through, so again I’m sorry if i made you feel like I was taking you for granted. Words can’t express how appreciative I am to have such amazing people in my life. So again thank you Isaiah_40_31 and Jules
Don’t be daft! We’ve all been there, I wish I could do more to help you, it’s so frustrating for you.I’m UK so I don’t know the US system and so I can’t really give you any suggestions about where to go from here…are there any forces charities which might be able to help you at all, either with appealing any decisions, getting you to be able to have surgery outside or funding it?
Thinking of you…
WOW! Shanef89!! You’re traveling one rocky & twisting road. I’m so sad you’re having to go on this winding path to get to a point where your ES can be taken care of. The good news is you have a definitive diagnosis now.
I second the first sentence in Jules response…
You might try Dr. Samji again since you now have a clear diagnosis. I think I told you that I know of at least two veterans from this forum for whom he’s done ES surgery. I don’t know if insurance varies among those who’ve served our country, but I would expect your coverage should allow you to go out of network if there is no one in your network who is competent to do this surgery. Dr. Samji is very specific in what he needs as far as a CT scan & a diagnostic report before he’ll even consider someone’s case. Perhaps the info you gave him initially wasn’t satisfactory. I’m sure he’d reconsider with the info he expects in hand.
You have a great attitude about surgery. That’s how I felt. The risk was more worthwhile to me than having to deal w/ the debilitating symptoms for the rest of my life.
I’m glad you have pain management in place. Just beware of the havoc opioids can wreak on the gut (especially long term) & make sure to stay super hydrated & use some sort of laxative to keep your intestinal system moving. Opioids tend to make the gut “lazy” as part of their action in suppressing pain.
Keep pushing till you have a surgeon in place. It may be easier w/ your pain under control.
Still hoping for the best possible end to this story for you!!
UPDATE: today is one of those really crappy days. only slept about 5 hours before I was woken up from the pain, and my dog being a spoiled cuddler who won’t let me sleep unless I hold him and give him a massage for an hour. but anyway, I decided to call the VA to see about this referral for surgery. low and behold they haven’t seen it. and if it wasn’t marked as urgent then they can take 2 weeks to process. so its been 11 days since my appointment and now they’re saying it can be an additional 2 weeks for them to look at a piece of paper and go “ok he needs a styloidectomy.” for them to then take another week to build up the courage to call me and ask for my availability. and another week for them to schedule that appointment that will most likely be scheduled about a month out from that point. all this, just to be told by who ever i get the displeasure of seeing “yeah i can’t help you. its too thick for me to cut it. you need a transoral robotic styloidectomy.” but that doctor isn’t going to write a referral for that, instead he’s going to say some other shit, thats going start this shitty all over again. every ENT visit is exactly the same. you ever see a grown man break down and cry from complete lack of hope? you know what. i think im going to contact Dr Manthei’s office…(holy shit all fucking morning it sounds like someone is slamming a bowling ball on the side walk outside my house and i can’t find the stupid source of this noise. im loosing my mind its so annoying i can’t think) and hope he’s willing to write a referral that says exactly what i want it too. they probably won’t. i just want a transoral robotic styloidectomy. so i can go back to having a life.
Your situation is truly unbelievable! Why do some vets get great medical coverage & others not? Your situation is appalling! I’m so sorry this is happening to you. On the bright side, when you do have surgery & recover, you’ll appreciate your good health more than ever.
Contacting Dr. Manthei’s ofc w/ specific instructions is a good plan. I hope they’re compliant.
Wish we could knock some heads together for you & really get the ball rolling toward surgery!
Lucky you to have a cuddly dog to help you deal w/ this!
Oh and I got the letter/recommendation that he sent the VA. Upon reading it, all was fine except for the part where he said that I had NO facial pain, headaches, trouble swallowing, or pain when swallowing. Which is completely and utterly fucking wrong!!! Now I have to go back to them and start a fight to get them to fix there inherent incompetence. Can I get ONE thing to go right. Just ONE!
I’m glad you checked in Shane. I keep hoping you’ll post some amazing, good news. That day will come, we will all celebrate for you when it does. I can totally relate to noises grating your very last nerve. I had to leave the room when my kids played piano before surgery. Now I like it and that’s only after one side. Keep fighting, you know it’s worth it.