Has anyone who had ES had these symptoms and have them relieved by surgery?
Forgot to mention that my styloid on this side is 5.1 cm so I do have eagles, but not much ear pain, Lots of tinnitus and stiff neck so not sure that ES is causing my chronic neck and shoulder blade pain, but nothing has shown up as a cause in 3 years. Very rarely, I do have an ear twinge and a burning sensation in the back of my tongue, which were familiar on the other side and exceedingly painful, but I am not ready to go to Surgery for that yet. I am more interested to find out if anyone had the back pain in upper shoulder blade and neck relieved from surgery.
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The pain from ES can cause a general tenseness and that can cause stiff neck and muscle pain- some members have had a bit of pain relief with Baclofen or medication like that. If ES is vascular, you can get pain radiate along the carotid artery, so that can make the front of the neck painful down to the collar bone. There’s also nerves to the shoulders which can be affected by styloid compression/ irritation, so in that case it can cause shoulder and arm pain r weakness. I have a disc problem in my neck so surgery hasn’t stopped all my neck pain, but physiotherapy exercises have helped it a lot.
Hi. I have had chronic neck and shoulder pain on the same side as all of my other symptoms. I have been told that the most likely origin of this pain is the insertion points of the levator scapulae muscle. It can be at the top of the shoulder blade on the side closest to spine, or under the base of the skull. One theory is that the Spinal Accessory Nerve which innervates the upper trapezius and SCM muscles is one of the nerves that can be affected by the styloid. The upper traps are supposed to carry a lot of weight of the shoulder. If they are weakened, then the small levator scapulae can get very painful. What I get is like a burning/spasming of the muscle. When I stand in front of the mirror, it is also obvious that this shoulder sits lower than the other side. Stand naturally in front of the mirror straight on and look where the tips of your fingers are. Are they lower on one side? Mine sit about an inch lower on the affected side.
I had intraoral surgery to shorten the styloid but the surgeon only managed to remove a small part and it didn’t help with my neck and shoulder pain. I have never had tingling or numbness. Neurologists have not managed to see any obvious weakness in the upper traps on my affected side, or any other abnormality for that matter. The answer that I got when I pointed out that my shoulder sits lower was “no body is completely symmetrical”. It sure is a coincidence though. I also would love to hear if anyone has had this type of pain reduced after surgery. I have not managed to find a surgeon in Australia willing to perform a more complete removal of the styloid yet and even if I do I’m not sure I will have the courage to follow through with it.
Based on what you have gone through since your first surgery, I sure don’t blame you for feeling leary about a second surgery on the same side!! I still pray that you’re able to find a medical professional who’s willing to look at everything that’s going on in your neck/shoulder area creatively & perhaps offer you some sound medical help that will ease your pain & discomfort.
I have these symptoms and I just had surgery 12 days ago. I’ll let you know how I feel soon, it’s too early to tell.
Hi Aussie77 -
Thanks for that detailed description of your set of symptoms. I learned a lot!
I had acute shoulder symptoms before surgery - pain, muscle spasms, weakness, tingling. I didn’t have many of the classic ES symptoms but styloid elongation was obvious in dental Xrays & CT scan. I opted for surgery, & the external method allowed for removal of a large section of calcified ligament.
There was immediate decrease in pain and this is a great relief. But I am still - two months out - waiting for relief of the neurological symptoms - tinnitus, tingling, weakness. It seems that the trapezius muscle is barely working & I experience the effect you describe - those other muscles are filling in & overworking, very painful. Loss of muscle mass is obvious - the shoulder region is thinned & bones protrude on the affected side. I am hopeful that I will slowly recover function over time. I have heard it can take many months.
I would be interested to hear any more information or detail about your situation - thanks again!
THH
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Hello Agordon0726 -
I also had these symptoms, neck & shoulder blade, & am 8 weeks out from surgery.
I’d be interested in hearing about your progress - I have had improvement. It is slow, very incremental.
Thanks & I hope your recovery & healing are going well!
THH
Keep us posted THH. Yes nerve recovery is of course very slow. I had some symptoms of facial nerve damage after my intra-oral surgery to shorten the styloid and it took a good 6-8 months for this to improve. The neurologist that I saw said anything up to 2 years is normal. Hopefully things will continue to improve. I will be very interested to hear how you feel in another couple of months.
When I was doing a lot of reading about Eagle’s, I found very little information describing neck and shoulder pain. Occasionally an article would mention it but never really the nature of the pain or where is was isolated to, and nothing that matched my symptoms of levator scap pain.
I do feel like the right side of my body (where all of my symptoms are) is weaker. I often find myself slouching over to the right. And the right shoulder sits lower as I mentioned previously.
Despite this I have seen 2 neurologists in the past who didn’t feel that any of that was significant. The answer I got in BOTH cases was “nobody is symmetrical”. In the case of obvious muscle wasting then it is a bit more clear cut. My 2 neurologists did a basic clinical exam where they ask you to do a series of manouvres (eg shrug your shoulder etc) while they are applying pressure in the opposite direction with their hand. This is to gauge whether there is weakness. It seems like you would have to have substantial weakness for it to be obvious and also seems to be a pretty subjective way of testing. I wonder whether there is nerve irritation that could result in pain and weakness that is considered subclinical in these tests. In my case I also had a Nerve Conduction Test on various muscles in the shoulder including the upper traps. These tests showed nothing abnormal, but the neruologist went on to say that this does not necessarily mean that there is no issue with the nerve higher up, just that the brachial plexus is fine.
So, there is nothing to prove that my shoulder and neck pain is at all linked to any of my other issues. If there was I think it would be a lot easier to convince surgeons (any myself!) that this is due to Eagles as it is one of my major symptoms. If it wasn’t related then it would have to be a hell of a coincidence.
It is even harder over here in Australia where there is limited belief in Eagle’s Syndrome and radologists seem to go out of their way to convince ENT surgeons that elongated styloids are an incidental finding.
Agordon0726 and THH,
Keep me posted on your recovery. I have been leaning towards having surgery to remove a spur in the cervical spine, but nerve block did not indicate that as a problem. The pain management doctor suggested that I have some facet joint diagnostic injections to help instead of surgery at this point. This is chronic, I cannot swim, dance, pull weeds or carry anything heavy. I have recovered 100% of my range of motion after rotator cuff surgery and my shoulder is strong. Shoulder doctor believes and told me before surgery that it was my neck. I told him about Eagles. He googled it while I was in his office and saw some really significant pictures. He was amazed. I said, yes, it can basically strangle you from the head to the hyoid. He said, “no kidding you are right, I learn something new every day.” Love my shoulder doc, but then he is in his late 50’s and has been around enough to know he can still learn a thing or two. I am going to bring the pain management doctors recommendations to the neurosurgeon and get his take on the neck. I think I have found a great neuro, great shoulder doc and a decent pain management doctor. One of them is in a different state, but not giving me any headaches, which is impressive. Once I get the neuro’s opinion and maybe a few more tests, we will see. I hate injections that just mask a problem, but if they can pinpoint a nerve issue in the neck, I will go for it. This will still take a few more months. As long as I do not dance, swim, move my neck incorrectly, I am okay. All this and chronic lower back issues. I just don’t feel that old in my mind and body. I have lots of energy, should be out there helping others instead of in PT all the time. Of course, I can also go across the country to Dr. Samji, he is willing to do the surgery. Just not ready to jump to surgery in either case without some sense of what direction I need to go. Jules, sometimes, I hurt like crazy, others I go with very little pain, so it is not the worst thing like the other side that hurt all the time. I am thankful for that. I am leaning towards the neck as the cause, but do not want two surgeries if I can avoid one. I cannot take narcotic and I am supposed to not take any NSAIDs so I am mostly using ice and Tylenol. Sometimes a little Aleve, but it can be dangerous for me longterm. Will check in with you all, soon. Keep me posted.
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aussie77
Dr Samji told me that the 11 th cranial nerve could cause pain in the neck near the trapezius.The trapezius muscle run up to the base of the skull. The accessory nerve is the 11th cranial nerve, so we are in agreement there. He, of course, only explained that it could be a problem not that it is the problem. He had my CT scan and he consulted with me over the phone. It costs the same as an office visit. I am grateful that his nurse ordered the CT for me in Fl even though they are in California. Also the burning pain is directly under the shoulder blade closet to the spine near the top of the wing, if you get my description .Dr. Samji is willing to operate and my insurance pays for it, but to do that,and find out that it is not from the styloid, I am doing my homework to rule out the cervical spine first. Did you have any pain symptoms relieved from your intraoral surgery?. Who was your doctor? I believe you have been fighting this for a couple years, am I correct? Take care. This helps the muscles, put a tennis ball in a ladies knee high stocking. It does not slip on the floor. Put the ball near the pain in the shoulder blade with the open end of the stocking on the front of the shoulder. It will anchor the ball. Get the ball near the pain point in the back of the shoulder blade,then stretch the affected arm across your chest area to open the shoulder blade so you can get the ball under the blade as much as possible.The muscle is deep under the blade and not easy to massage. Just lean on the ball for a minute or two. It may be extremely painful at first, but do it as much as you can. Within a day or so, depending on your ability to stand the pain, you will find that you feel better. I have found that the pain is not so much in that spot, but I tend to lean on the ball, and roll it upwards along the line of pain, closer to the collar bone and shoulder blade. That is where I think the most of my pain occurs. I push on the ball with force, now, practically crush the ball and the pain subsides. Keep the ball on the pain point for several minutes to release the tension. I also notice that when I do this the pain also refers up to the base of my skull near C1 or C2 but not on the spine, more to the side and under the base of the skull. However, this does really help reduce the pain. I can do more work during the day, but still cannot do a significant amount of anything without pain, but it sure helps to relieve the burning pain. Look online for therapies for the “serratus superior posterior muscle,” you may find a video. If I get a chance in the next day or two, I will find a site and attach it. That muscle is close to the levatus scapulae. Good luck
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Thanks Emma. My daughter’s name is also Emma! I will give those exercises a good try thanks. Just came out of yet another ENT appointment with a new doctor. He didn’t believe that further removal of the styloid would help. Said Eagle’s Syndrome is controversial. Said that given that I have had previous surgery, the chance of him causing nerve damage would be very high and the chance of further removal of the styloid giving me relief is next to nothing. I don’t even bother trying to argue any more. He wasn’t going to be the person to help so no point in taking it further.
I would love to get Dr Samji’s opinion but the costs of flying to the US for surgery from Australia would be too much I imagine. If I was single I’d probably save up and do it but it is harder when your the sole wage earner for a family. I might put a post up to see if anyone has gone down that path and approximately how much it cost. All the best, Mark.
I didn’t answer your questions. The surgery gave me some minor relief of the direct pain in that back of my throat. The tinnitus in that ear is also a bit better. The surgery did cause TMJ problems which I didn’t have prior. Not sure if it was due to a structural change or whether the jaw was overextended during the surgery. Also I has worsening of the tongue symptoms. Seems related to the TMJ somehow as when I open my mouth wide to eat say a burger, I gather tingling along the right side of my tongue for the next few minutes. Also I can feel an altered sensation along that part of the tongue all the time but it is quite minor with my mouth closed. I first started getting symptoms about 7 years ago. Mark
Dr. Samji tends to err on the side of caution as far as doing revision surgeries i.e. it seems he doesn’t often accept revision cases. If you were ever to consider coming this far to have him do surgery, it would be imperative that you have a phone consult or consults first, &, of course, make sure he had your most recent CT scans in hand prior to the consult(s).
I am so sorry that you’re meeting with such resistance to even exploring the possibility of a revision surgery from the doctors you’ve seen. heidemt had a similar situation here but finally found a doctor in Pennsylvania (I think) who did her final ES surgery & removed all of what remained of a problematic styloid. This doctor was willing to take a risk & did a somewhat difficult surgery to remove her styloid stub. I believe the surgery was successful in helping resolve some of the symptoms she was having.
Sadly, doctors today are stuck between a rock & hard place when it comes to taking risks. We live in a lawsuit happy society (at least in the U.S.). Even when a patient knows the possibility of a less than ideal surgical outcome, malpractice lawsuits all too often come into play when the desired result isn’t achieved. A talented surgeon - even if he/she is capable of doing a particular surgery - might decline to do so because of the fear of a malpractice suit in the end. No doctor wants his/her reputation ruined by something like that. It is a lose-lose situation.