Hello again. Now a month after my intraoral surgery and I must say my symptoms of pain in front of the ear, neck and left arm have been a lot worst since then.
It seems that something happened during the surgery. All the left part of my face hurts like hell down to my left arm.
The only improvement I have felt is less sensation of foreign body.
Does anyone know what could be happening to me? I know for a fact that the surgeon cut 1.5 cm (which its too little) but why do I have more pain than ever? And even one month after surgery?
Is it too soon to sk for a CAT SCAN one month after surgery?
I want to preface my response by saying that almost everyone I know of improved significantly after surgery. My surgeries have each increased my quality of life a lot. I just wish the guy who did my first surgery got all the syloid out - if he had, I wouldn't be having my remaining problems.
But I do know of one person who seemed to get worse after surgery. She eventually found out that the surgeon missed her styloid completely. I believe she said that he must have taken out the hyoid bone instead of the styloid. She had a very hard time after her surgery. I think she eventually got another CT scan about 3 months after her surgery which showed the styloid was still there completely intact.
There is another person on here, Shaw, and I believe his doctor missed the styloid completely, even though he previously removed the styloid successfully on the other side. But I don't know if he felt worse after the surgery.
So maybe you do need another CT scan. Usually people are pretty well recovered after a month. I would guess though that any doctor is going to tell you to wait a couple more months.
I guess it's possible that the surgery could have hit some of the nerves and it may take a while until they "calm" down. I really don't know what to tell you - that really sucks. I wonder if you could have an infection? I think risk of infection is one of the reasons that some doctors don't want to do intraoral surgeries. What does your doctor say?
I am uploading a picture of what he said was my left styloid. He said is was elongated and not calcified. But he said it was hard for him to find the tip since it was straight as the other side. I hope it just inflamated nerves. What do you think of the pic?
My Doctor said no infection and he believes is a nerves problem that should go away.
On the other hand I did talked to Dr Samjis office (thanks for your help) and he wants to wait the 6 moths to operate on me. So I guess I would be doing that if I am alive by then :(
I want to preface my response by saying that almost everyone I know of improved significantly after surgery. My surgeries have each increased my quality of life a lot. I just wish the guy who did my first surgery got all the syloid out - if he had, I wouldn't be having my remaining problems.
But I do know of one person who seemed to get worse after surgery. She eventually found out that the surgeon missed her styloid completely. I believe she said that he must have taken out the hyoid bone instead of the styloid. She had a very hard time after her surgery. I think she eventually got another CT scan about 3 months after her surgery which showed the styloid was still there completely intact.
There is another person on here, Shaw, and I believe his doctor missed the styloid completely, even though he previously removed the styloid successfully on the other side. But I don't know if he felt worse after the surgery.
So maybe you do need another CT scan. Usually people are pretty well recovered after a month. I would guess though that any doctor is going to tell you to wait a couple more months.
I guess it's possible that the surgery could have hit some of the nerves and it may take a while until they "calm" down. I really don't know what to tell you - that really sucks. I wonder if you could have an infection? I think risk of infection is one of the reasons that some doctors don't want to do intraoral surgeries. What does your doctor say?
It definitely doesn't look like much was removed. I would get another CT and see what is going on. Perhaps yours was not all in one piece? Sometimes they are cracked so there are multiple pieces. A new CT scan couldn't hurt. Based on all my reading, if they don't take out enough of the bone then the remaining bone can still pull and irritate the nerves. You could be worse because the surgeon must move the nerves to get to the bone. I was told it can take up to 3 months for the nerves to settle down. Hang in there. I know this is a hideous disorder.
I will add one more thing. Intraoral surgery is tough on the neck and shoulder. They position your head to one side, clamp your tongue to the other side then cut pull and tug in your throat. I was in pain after surgery for over 3 months. I will also say that I came out of it with pain running straight down into my shoulder form my mid clavicle area. I still have it, but my doctor removed 2.8 centimeters of styloid. I am wondering if the intraoral surgery just has a negative affect on our neck and shoulders from the position. My surgery was over 18 months ago. I already have some degenerative disk disease so I really believe a nerve is pinched or a spur in my neck is now irritated. I have found that posture retraining and icy hot patches on the trigger point in my upper shoulder mid clavicle area relieve the pain. I can't take NSAIDS because of a previous stomach ulcer, but I have a script for NSAID patches. I cut them in half and use them occasionally. With constant attention to neck up and straight and shoulders back and down and some daily gentle rotator cuff therapy, I am feeling better. I have been working on this idea for 6 weeks. In a couple months, if I am not better from the therapy and posture work and patches, I will be able to convince my shoulder doc to do an injection or MRI. They don't want to do that until therapy does not work because most strains or small tears can heal themselves without treatment. I have learned the drill, it took a couple years to get to surgery for a torn hip muscle. And yes, when I have a patch on my shoulder, my ear pain goes away and if the foreign body in my throat comes back which it only rarely does. The patch on my shoulder alleviates it also. So thought we might try to investigate the shoulder strain or tear or weakness as a possible cause of symptoms after surgery. All my pain had gone away and being on a walker injured my shoulder again and the Eagles came back so it may not be the Eagles at this point, could be the shoulder strain. Patches keep me happy for now. In a couple months back to the orthopedist if I still need patches.
Our ENT's can't are not orthopedics and can't predict the possibility of shoulder or neck strain, I guess.
I am 1 week post styliodectomy but I had the external procedure where they went in behind my ear. Firstly 1.5cm seems very much to remove. Mine weren't particularly long but the surgeon said he removed the styliod completely. Secondly from how I understand the surgery. There are many nerves involved and there is risk of nerve damage resulting in nerve pain or numbness. Do you think its nerve pain? I have ended up with the later but the surgeon says it may improve. He says six weeks before we can make a decision on the success of the procedure. When are you due to be reviewed again?
I think you are absolutely right. I am having more a neck problem. I also think I might have Ernst Syndrome. It is a facility pain that comes after a surgery with open mouth. Many people have develop facial pain and ear pain after a dental surgery for example. My pain is not better yet but I don't think it is related to Eagles. It's more of a consequence of the surgery.
Tks for your feedback. Cheers,
Vanessa
emma said:
I will add one more thing. Intraoral surgery is tough on the neck and shoulder. They position your head to one side, clamp your tongue to the other side then cut pull and tug in your throat. I was in pain after surgery for over 3 months. I will also say that I came out of it with pain running straight down into my shoulder form my mid clavicle area. I still have it, but my doctor removed 2.8 centimeters of styloid. I am wondering if the intraoral surgery just has a negative affect on our neck and shoulders from the position. My surgery was over 18 months ago. I already have some degenerative disk disease so I really believe a nerve is pinched or a spur in my neck is now irritated. I have found that posture retraining and icy hot patches on the trigger point in my upper shoulder mid clavicle area relieve the pain. I can't take NSAIDS because of a previous stomach ulcer, but I have a script for NSAID patches. I cut them in half and use them occasionally. With constant attention to neck up and straight and shoulders back and down and some daily gentle rotator cuff therapy, I am feeling better. I have been working on this idea for 6 weeks. In a couple months, if I am not better from the therapy and posture work and patches, I will be able to convince my shoulder doc to do an injection or MRI. They don't want to do that until therapy does not work because most strains or small tears can heal themselves without treatment. I have learned the drill, it took a couple years to get to surgery for a torn hip muscle. And yes, when I have a patch on my shoulder, my ear pain goes away and if the foreign body in my throat comes back which it only rarely does. The patch on my shoulder alleviates it also. So thought we might try to investigate the shoulder strain or tear or weakness as a possible cause of symptoms after surgery. All my pain had gone away and being on a walker injured my shoulder again and the Eagles came back so it may not be the Eagles at this point, could be the shoulder strain. Patches keep me happy for now. In a couple months back to the orthopedist if I still need patches.
Our ENT's can't are not orthopedics and can't predict the possibility of shoulder or neck strain, I guess.
I know crmfghtr only had a partial removal and he is struggling after the surgery. He is still in a lot of pain. He believes he needs a full removal, not partial. We are currently trying to find a doctor in MN to help us as that is what our insurance covers. We have only been able to find docs that do partial removals.
@alibabac Those are some pretty old posts so you may not hear back from those folks. I can tell you from my experience with Dr. Nakaji that the amount of styloid removed is less about a measurement number and more about removing enough to free up the structures it is impinging upon without damaging the cranial nerves that emerge from the same part of the skull base. During surgery Dr. Nakaji moves the head through ranges of motion to make sure compressions are clear before closing.
My intraoral surgery left about 3 cm of styloid and even more of the stylohyoid ligament. At that time 3D scanning was not the norm. I continued to be in pain. In 2018, a 3D scan showed a 3 cm styloid withs a marble like growth in the remaing styloid. I underwent an external surgeryMy styloid and stylohyoid ligament are removed completely to the hyoid bone. 6 months later the same operation was performed on the opposite side.
The surgeries were successful. I had
a neck fusion 6 months before those surgeries so it took a longtime to fully recover. Due to a malformed jaw, I still have pain in my ear, but since 2019, I have learned how to adjust the jaw and release my muscles. The ear pain does not exist unless my jaw is tight or stressed.
I do self PT often for that.
Your back and shoulder use muscles that can be affected. I train and release those muscles routinely. I am doing well.It took awhile to figure it all out.
@emma thank you for responding! So sorry you continued to be in pain and had to go under again, but I’m glad it ended up working out for you. Can you tell me what your continued pains were from the remaining 3 cm?
One month is not a lot of time to recover from intraoral surgery. I was in pain for 11 months and eventually just had ongoing pain from 2013 to 2018. Arm pain can be significant after such a surgery. I think we have some nerves, I cannot recall the name that are associated with the cranial nerve. I think auxilary nerve 12 comes to mind. My pain was Glossopharnygeal pain was indicated by the surgeon, also had some issue with vagus nerve because after the second surgery, I no longer had severe acid reflux that I had for 13 years. The marble looking knot in the styloid was key to having the revision. I hurt badly behind my ear and had some lightning bolt pain to the top of my skull. That all subsided. I did continue to have jaw pain, but I learned how to work it out. Sometimes, it takes a bit of a rest. My jaw pain is from the birth defect that probably caused the Eagles. I am not focusing on Eagles anymore. I think that I have recovered from all of that. Eagles journeys are all different.
As far as the arm pain talk to your surgeon. If he is no help, wait awhile. Nerves get very angry after a surgery. If you cannot use the arm, you might want to have someone evaluate it. I had arm pain and I have found out that it is also associated with poor posture and aggravated by the surgery. After about 2 months or so, I highly recommend that you ask for some imaging to see if you have any physical issue. If you have nothing , ask to see a DPT, you may need therapy on shoulder, neck and back. Eagles affects the hyoid bone which is not attached to a bone. It is attached to ligaments that are directly attached to shoulder, neck and throat muscles. A member VDM quit the site, but if you can find those discussion, you might find some helpful information on that member’s dealings with muscles and theories on therapy.
I stretch my back and neck and do exercises daily to avoid pain. I do it less often, but I still do it. Therapy for the back shoulder muscles and posture, though weird, is actually a possibility.
Look online for Hyoid Bone syndrome. A pain management doctor wrote an article and highlighted the muscles and pains that are associated with Hyoid Bone Pain. I have worked exactly on those muscles. No joke, the relief can be amazing, but some of us need to retrain and keep those muscles from getting tight, because the hyoid bone stability is affected by Eagles both without the surgery and with the surgery. Without the surgery, I was in horrible pain, now I just have to manage my posture and stretch properly to be comfortable. It is ongoing, but the relief and strength that you gain is rewarding.
Some people like me have a problem that was not discovered before and with intraoral surgery. I needed that marble like bone removed before moving forward and needed the right side done as well. It was compressing a nerve to my eye and my eye hurt and my jaw hurt. It was tangled with my facial nerves and surgery resulted in 4months of facial palsy with my eye and mouth. My surgeon told me not to worrry, because I had no neurological damage, but the nerve suffered trauma and would wake up on its own in a few weeks. Well, the nerves did wake up as promised, just a few weeks longer, but when done the eye pain and jaw pain were gone.
I think that I have written a book so hope this helps you and others. The arm pain may go away or you may need to do some therapy. I wish you the best. This is a complicated and often, dismissed syndrome by doctors, family and friends. However, most of us do get relief. I do not know how many never get relief. One year for nerves to recover is only the beginning. I have been amazed at the progress and even at my age of 74 and after 7 years still getting stronger. Other parts are not so happy, but I have been awed at how persistance pays off.
Re @emma 's reply, the info @vdm gave was in this discussion: List of my favourite resources on YouTube to learn anatomy - General - Living with Eagle
There are links to retraining muscles etc, not sure how much was about the arm or shoulder, there’s alot about exercises to improve posture & restore the neck’s natural curve…
It’s the spinal accessory nerve which can get irritated during surgery.
I wouldn’t rush into doing any exercises yet @alibabac , make sure you’re healed properly first, it’s still early days.
Glad you’re doing well @emma , and thank you for still popping back on to help out
@emma - Thank you for coming back & giving such a thorough answer to @alibabac. It was good to refresh my memory about all you’ve been through. You’ve been very faithful on this forum for so many years. You’ve been a great support & blessing to a lot of our members.
