I’m so glad to hear about the positive changes you’re seeing since your ES surgery. I hope your recovery continues to complete eradication of your left over symptoms. Our bodies all heal at different rates, & it’s very hard not to feel a bit discouraged when reading a post by someone who basically felt back to normal a week after surgery (this is rare but does happen). I was in your camp & it took 9-12 months for some of my symptoms to finally disappear. After awhile I resigned myself to the fact I would just live w/ them but at the same time, I also learned I could mostly ignore them as they no longer had the impact on my life that they did before surgery. Happily almost everything finally resolved.
As far as your blood pressure goes, I do recall at least one or two other members mentioning a reduction in bp post op (couldn’t quickly find their posts). It was to a more normal level not below normal. I had the opposite problem where my blood pressure would drop too low during exercise, & I would feel like I was going to pass out. That stopped after I had surgery. Of course, I blamed it on my vagus nerve, which it most likely was but could also have been rooted in some additional nerve irritation since they all work somewhat together. The fact that you’re now able to be off bp meds is great news. I hope your bp stays steady as your healing continues.
Hi Isaiah and Stella!! Stella it’s so good to hear you’re doing better!! Thank you for the updates and please continue to send them….Isaiah, Thank you for asking and caring. No unfortunately I have done neither. (BTW, I changed my user name to something shorter although that’s the look and feeling I got during each visit with doctors throughout the years “I’m the doctor you’re the dummy”) I have been diagnosed with hyoid syndrome which to me means I’m halfway there yet grateful. It has been a long journey to say the least. If it wasn’t for this forum I would not have known to ask the questions I did when seeing a new ENT. She was very kind and quite concerned of the array of symptoms I experience but she didn’t know where or why symptoms came from. One of which is the ice pick stuck in my throat at hyoid/tongue/carotid artery area with intervals of twisting and pushing further into my throat. She ordered a ct with contrast and because I asked specifically about hyoid and Eagles syndrome the results came back as normal styloid ( no measurements no mention of ligaments) and the greater horn of hyoid is long and could be the problem. I heard her talking with another dr that told her it was hyoid syndrome. She had suggested surgery shaving the bone but after talking with the other dr decided steroid injections would be better. Then in a follow up I told her amytryptiline was helping. She was glad med was helping and said if I didn’t want the injections at this time she understood but shaving the bone was off the table. I mentioned the styloid again and she abruptly interrupted and said the radiologist said it was normal, I said yes ma’am but if my pain continues and treatments aren’t working would you consider surgery again and if so would you be able to take out calcified ligaments attached to hyoid, she looked at me a moment and said the ligaments would need to be looked at first assuming by ct scan. I was happy to get this far! Even though I know it’s more. Again I would not have known what to say if it wasn’t for this forum. I’m so afraid of having the injections, I have done every kind of treatments during all these years. I’ve been injected with steroids and Botox in my face, around ear, jaw, neck and even in my rib because I had costochondritis, rib inflammation. I feel positive something gets infected in my throat like where the hyoid bone (or styloid) pokes me, or maybe from the ear, I can see the redness inside my throat and sometimes a drainage from somewhere that smells and taste awful, afraid steroids would make it worse. I’ve taken antibiotics several times during the years like several times in a year, that would make me feel better. I’m afraid of anyone sticking any of my arteries because I I feel I have a type of compression. I have had the symptoms of compression for years, the dizziness, weakness at times, swooshing sounds, bending over bowling ball head feeling like get so dizzy, vision changes etc. I have told drs for years the pain in my throat is right where an artery is, that I can feel it beating hard. A MRI from 2009 said I had mild chronic micro vascular changes, something that’s never been addressed. I don’t know if that’s related to compression or not. (I need the forum’s help with this in a big way!!) All drs have said it’s normal and one said because I haven’t had a stroke no need for further tests . I also had another thyroid ultrasound with same findings of growth on right and cyst on left both enlarged since prior in 2020. A needle biopsy was done on left cyst that hurt like crazy as my neck is so tender and sore! The result was insignificant or undetermined just like the prior 2 I’ve had on both sides of thyroid. The isthmus of the thyroid is a lot bigger. My levels are good per the drs. I sent my notes and ultrasound to a thyroid specialist in Florida, she said my right thyroid needs to be removed and maybe the left. She didn’t know anything about hyoid syndrome or Eagles. I feel it’s important that a dr should know about all of it so no mistakes will be made. The recent ent wants to do another ultrasound in May of this year. My throat and neck feels big and swollen and painful, and like something is slowly choking me. All that was May through December 2021. During the same amount of time, I saw another oral dr who specialized in Sjögren’s syndrome. A different oral dr sent me to this oral dr because she thought I had dry mouth. The new oral dr thought so too which I agree but It’s only in the back right corner of my mouth in one spot, the spot that has the ice pick stuck in it. I told him that area drys up at night when breathing through my mouth. He said if it’s dry in one spot I’d still have sjogrens. I asked about the ice pick feeling and he said dry mouth causes that then I asked about my styloids and his response was “ that’s old school and his were long, pointing to where his was, and that it wasn’t bothering him” , I told him that I’ve learned a lot about styloids and Eagles syndrome through an online organization, he said, while looking at the assistant in the room, that “ the organization was a California based organization that talks you into going there to have $20,000 to $25,000 of dental work done”…….I mentioned the ice pick in the next 3 visits with him until he suggested amytriptyline. I had tried this many years ago like 15 or so. It helped this time. On my last and 5th visit he said the insurance company is asking why he’s prescribing anytriptyline. I said so what did you tell them. He never said. I feel the med isn’t used for sjogrens that’s why insurance was asking. He said he couldn’t prescribe anymore …… so I down dosed with what I had and currently not taking. It did help but the pain would still break through and my stuttering (which is so annoyingly embarrassing) was getting much worse. Needless to say I’m not seeing him anymore. You asked if I saw Dr. Hackman, I have not. You don’t know how bad I want to see him but I am so afraid of rejection. As I write this it brings tears to my eyes, whew. I’ve had this problem nearly 19 years (first symptoms 8/2003) so you can imagine the doctors that I have seen during this time in my area, some of which have been at UNC. Some of my scans have been from UNC and I have not had an answer. Now during this time I never asked about the styloid or hyoid specifically. So now is when I need you guys to help me in being sure of myself because it is very important that I am. I have got great pics from my scans through the slicer download and a couple other downloads that I have. Btw Thank you so much for the information on slicer you guys, I had a hard time getting it downloaded and using it at first but I finally got it going good on my iMac. I will send some pics in another message because as you can see this one is very long, sorry .
So sorry that you’ve been given the run around for so long…Dr Hackman does seem to be very helpful so it is worth trying to see him, surely? When you post your images then hopefully we can give you the confidence you need to get a referral…
Ben’s Friends do also have a Sjogren’s Syndrome site too if you want to get info from there? I have dry mouth & eyes, it all started at the same time as the ES symptoms did, so can’t help but feel there’s a connection. My blood tests were okay & as it’s manageable I didn’t pursue any more testing though.
Hi Jules! I’m sorting through a gazillion scan pics now and like I told Stella in another post I’m creating another symptom, crossed eyes . a lot of them are on my phone so you know you’re looking down which causes symptoms to flair. The dry mouth started with this pain thing and it is always been throughout these years in a one spot it’s like it feels like it’s the size of a nickel maybe a quarter in the far back right little ways down, and in my eyes. they tested me years ago, the blood work and everything for Sjogren’s and it never tested positive, this doctor did mouth swab‘s then blood and then he took a biopsy of a piece in my mouth and it came back Sjogren’s because of the dryness. it was in an area that is pretty close to where my problem is. I’m not saying that I don’t have sjogrens, by no means, I probably do but I do think it was created by this long-term problem. I kept going to this doctor that was blowing off Eagles because you know I’m fighting and I’m doing everything possible to try to get an answer. I honestly think that Dr. Hackman can help me because he’s going to know where to look. the ENT I saw over the summer, like I said she was very good and very nice but she did not know anything about the syndromes eagles or hyoid when I showed her a bone 3-D picture she was alerted by it but she was also confused she thought the thyroid cartilage was the hyoid bone and she didn’t know what the Hyoid Bone was. of course I didn’t say anything but I thought to myself hmmm I don’t know. I know when looking at somebody else’s pictures like that it can be confusing I guess. I was very grateful to have her because she was giving me attention and believed me. It may be tomorrow before I can get my pics sorted and sent. Thanks again
Thank you for sharing your story. Long is fine. We like detail here and will look forward to seeing some of your images. Good work playing w/ the 3D slicer & getting it to work. I’m sure it would be lost on me!! (Thank goodness my CT scan came w/ four 3D images!!).
I am so very sorry for all you’ve been through but am giving you several rounds of applause for standing your ground & pressing for answers even from doctors who were more irritating than helpful. I firmly believe that Dr. Hackman won’t disappoint you. He is very kind, knowledgeable & helpful from what I’ve heard & the surgical staff at UNC are like-minded with him. I hope you muster your courage to make an appointment with him soon.
When I find my neck getting tired from looking down at my phone or computer, I prop them up on a stack of books which allows me to see the screens more straight on. There are also adjustable stands available if you want to buy something like that.
The doctor who said this forum came from a California based dental organization is confusing us w/ some other forum (that I’m not aware of!). Ben’s Friends was born in Texas & is still headquartered there though it now reaches around the world with over 40 forums for people w/ rare diseases & syndromes. What Ben Munoz started out of his own need has now helped fill the needs of over 800,000 people (or something like that!!) worldwide.
I’m so glad you’ve come back here for support & to share your journey. We look forward to your future posts. You are cared about & held up in prayer, MandS!
Isaiah, thank you so much for the information on the thyroid and everything else! I will definitely look into this and I have heard the same thing about the cancer and not having thyroid surgery. I think there’s something weird with my thyroid though and I think it has something to do with the Styloid or ligaments you’ll see when I send the pictures. I’m getting ready to send a whole bunch of pictures. I’m not going to elaborate much when sending. I have arrows that show things it’s just a lot I worked hard on this so like I said I’m calls out from looking at these days. I will send more messages as to the pictures and I want everyone to please ask any questions you like and suggest anything you like
Isaiah, you didn’t have to explain about Dennis friends are this organization but thank you for doing it know that Doctor had no clue to what he was talking about. It was a doctor at a school that is further east I’m not gonna mention it so I think that he was truly trying to impress his student. how sad
was thinking of you and came to see if you had posted any updates. my BP and pulse weren’t medicated “high” pre surgery but they were “pre hypertension” between my auto accident shifting everything in my neck and surgery. post surgery I stay around 110/67. my pulse stays about 10 beats lower than pre surgery and I also can bend over without the head pressure now. so I definitely have experienced that.
I started going to a chiropractor a few weeks ago because I injured my back and to try and work out the neck pain that still exists. I’ve found it is not helping me as all. my xray showed my c3 vertebrae is a bit tilted, the person who read the xray didn’t even mention it in his report. the chiropractor thinks I’ve got a calcification of a ligament happening there that’s pushing my vertebrae out. he says he’d need more images to be certain of that though. I don’t notice it on my pre surgery cat scan so thinking this is a post surgery development
I am sorry to know you have an issue w/ your cervical spine & back. I’ve gone to chiropractors for years & have found great relief in their care, BUT I’ve also noted that the relief is temporary. One wrong movement or walking too far, or lifting something in haste & not correctly, sends me back to the chiro. I’ve done PT, core work, glute work, lower & upper body strengthening over years to try to “shore up” what’s weak & allows the dysfunctions to occur but still end up at the chiropractor.
Like you, I was in an auto accident which, for me, caused a whiplash injury. When I did see my first chiropractor 10+ years later, she told me one of my cervical vertebrae (maybe C-3) had worn oddly because it had been pushed out of position by the whiplash. Those darn neck injuries can cause pain all the way down to the feet because of the way all the muscles, tendons & ligaments shift to compensate for the injury at the top.
something in my neck is shifting constantly? I never know what the day holds. sometimes it’s just sore and sometimes the nerve pain is immense. the chiropractor has made the wave of pain increase, so I think I’m just going to stop having him work on my neck. he’s throughly helped my back though. here is the xray of my neck
tp, I have the same issues in my neck. Like Isaiah, chiropractic is helpful but temporary. Some chiro’s are better than others. Listen to your body and use caution with neck adjustments after surgery. Perhaps a new CT scan of neck is in order since your accident?
My neck shifting can be worsened by how I sleep or doing anything physical such as simple yard work or even vacuuming. I follow the same path as Isaiah. It is a constant struggle and I always end up back at the chiropractor. Im considering getting a cervical collar and trying it for awhile and see if it helps.
I think Snapple’s suggestion regarding getting a new CT scan to take a closer look at your neck is a good idea. You could have bone spurs or a disc issue which wasn’t obvious when you had your CT scan for ES but might show up more clearly now. Knowing what’s going on would be helpful in getting the correct treatment.
yes, I can’t tell you how much I’ve spent on pillows and a new mattress, just trying to find something that gives me comfort. it’s miles better than it was last year, as I barely slept before my surgery due to my neck pain. it’s still there, but it’s duller and I sleep now. I just never know what the night or the next day holds pain wise.
immediately following my accident, my body wouldn’t let me sleep, it would jerk itself awake before it would let me. I ended up at the hospital after four days of not sleeping. now, if my neck pops a certain way, I will have minor jerks at night. I now think absolutely all of it is related.
I do have an appointment with my primary to start the process of getting new imaging just to know what’s happening in there.
Snapple’s suggestion of a neck brace/collar is also worth exploring. It may be that stabilizing your neck for some months along w/ some PT would allow muscles to strengthen & internal healing of other soft tissues to occur so that your neck would become more stable.
One thing I would encourage you to look into is cervical instability - if you are not holding a chiropractic adjustment, you could have concurrent issues (Eagles & CCI). I was seeing a chiropractor for years before I found out that I had vascular eagles syndrome, and was given TWO major diganoses: Eagles & CCI. I will say this, though, no traditional CT or MRI can catch cervical instability (I too had temporary relief from chiropractic appointments and then within days, sometimes hours, the help would be gone). I had to visit an upper cervical specialist, who DID order an MRI that showed my cervical spine had straightened (loss of lordosis), and then a digital motion x-ray showed the instability (mine is severe). I am (2) months out from ES surgery & am hopefully going to be able to start CCI treatments over the summer.
I’m definitely not a doctor, but something you may want to look into during your journey! I wish you the best with healing!
I think I just posted something on another thread about this. I have struggled with CCI for probably 45 years and I have tried it all including a period of years doing prolo-therapy and other types of injections. I agree, MRI and CT’s don’t show cervical instability. I got very little value out of the injections but I was desperate for relief. I suggest anyone considering going to some of these centers to get injections for cervical instability to look closely at the studies, # of patients, and their diagnosis’s. The devil is in the details. I personally do not believe there is a magic bullet there with these injections and suggest everyone use caution. Sometimes insertion of needles (such as dry needling) can produce the same effects to actual injections. A consult with a good Physiatrist (many are DO’s) might be helpful before going down this road?
tp, I have a new mattress too and probably spent thousands in my life trying out pillows. Ive never really found the perfect pillow but have liked the U-pillow. Those minor jerks at night don’t sound so good. Have you considered gabapentin at night? I hope you get some good imaging soon.
@Snapple2020 I totally agree! I have already met with one Physiatrist, who confirmed the CCI and suggested the injections, but my next consult is a second opinion and I am also going to ask to have the DMX re-done to ensure the diagnosis before going down that road. As you put it, it’s a LOT of money, and such a sensitive area, I want to make sure I know what I am getting into.
I’ll have to check into some different pillows. It’s BRUTAL to have CCI and have to sleep at a 45 degree angle from this surgery - I feel stiff all night and for most of the day.
I use a 45 degree pillow with a U-pillow on top of it which I found helpful after surgery. Its not the best but its the best I have found although I am growing tired of it. I think the U-pillow compresses after a time and Ive bought a few more. Im tossing and turning all night and sometimes end up off the wedge. If I sleep in bad position, I have horrendous headaches for days. It is brutal like you said. My wedge pillow is made by Medcline and has a removable center for shoulders. Its also good for GERD and does double duty for me. My mini-doxie loves to sleep above my head on it.
i recently saw an inflatable/electronic wedge that you put under your mattress. It’s kind of a cheap way to get an adjustable bed of sorts. I was thinking fo trying it. My daughter has POTS and we were able to get insurance to pay for her adjustable bed. I havent figured out yet how to get insurance to pay for one for me.