No relief PLUS new affected areas after surgery

I had my right styloid process removed on August 2, 2021. I waited a month before I allowed myself to decide whether my surgery was a success or not. Not only did the surgery not relieve my chronic headache (I was given a 50/50 chance of getting relief) but I now have additional pain, pressure and numbness on the right side of my head, my right jaw, my right ear, my neck and my mouth.

Lori, I’m so sorry that surgery hasn’t helped, I know we’ve tried to give you encouragement before that it can take time, it’s rotten that you have some extra nerve issues too…Have you tried any nerve pain medications? (I’m sorry I can’t remember) If not that might help with the new symptoms.
Some members have found massage & dry needling can help, & also cold laser therapy in case there’s some scar tissue formed, maybe it might be something to look into if you can?
Has your surgeon said anything about the new symptoms?
I do hope that with time you’ll see improvements, I think I’ve said before that we have had members who have noticed improvements even a year after surgery.
Sending you a hug, & will keep praying for you :pray: :hugs:

Hi Lori,
Im not sure what the details are of your surgery such as lengths removed and which surgeon performed it. Also what is status of other side? I will say at 8 weeks out, it is too early to tell in some regards. Id wait until at least 12 weeks and then up to 6 months. Nerve irritation can take months (maybe even 1 year+) to resolve but often you still are left with some residual numbness. I had surgery 1 in April 2020 and 2nd in Dec 2020. I still have numbness and tightness in my neck. I had some good success with some gentle massage especially on the scar tissue and the neck and shoulders. I also had an acupuncturist who put a tens like unit on the needles in my neck and jaw which I felt helped wake of the nerves.
It is not uncommon for this surgery to kick up jaw problems especially if you have any TMJ issues. I had a major flair after 1st surgery. I personally also have neck instability and chronic headaches from ehlers danlos hypermobility and had 2 whiplash accidents early in my life.
Side of head stuff may be related to trigeminal nerve. For the chronic headaches, I get regular massage and what is called cranio-sacral therapy which I highly recommend especially for headaches.


Hello Jules. I wanted to thank you for your help and support. I am still riding out the aftermath of surgery (8/2 right styloid). I had thought that the entire styloid had been removed. Not the case. My surgeon said he took off as much as he could. Sigh……

I did not mention that I have autoimmune diseases. I have been experiencing almost constant “flares” since my surgery. It is certainly possible that the autoimmune diseases are complicating recovery. I do see some positive changes despite my other problems. The headache that was constant before surgery is not constant now. I still have pain specific to the Eagles syndrome and it does get pretty nasty from time to time but I am relieved that it seems to be somewhat improved.

I will give an update as things progress. Happy holidays to you! :snowflake::snowman_with_snow:

So complicated with auto-immune issues too, that won’t be helping with healing, I feel for you…I’m glad that you can see some positives, I hope that you can hold on to those to give yourself some encouragement…better that your surgeon didn’t push it & remove all the styloid if that would’ve meant possible nerve damage though. Hang in there :hugs: :pray:


How disappointed you must be to learn that your surgeon didn’t do what you expected. As Jules said, it’s good that he didn’t remove more than he thought was safe. Different surgeons have different comfort levels when working in that part of the neck. Some take risks where others won’t.

If you’re able to take nerve pain medication, that might help a lot in toning down your ES pain flares. Anti-seizure meds such as Gabapentin & Carbamazepine or anti-depressents like Amitriptyline, in low to moderate doses, have helped a number of our members quite a bit.

I’m sorry that you have autoimmune challenges added to the mix. I hope you continue to notice symptoms healing. It’s great that your headaches are less frequent. :hugs:

Hi Lori,
Hope things have improved for you since your last post. Has your constant headache got significantly better since the surgery only I have a Constant headache and ear fullness with my ES. Was your surgery intra oral or external via your neck. Have you got to have the other side done ?. My surgeon attempted the intra oral route and removed my tonsils both sides only to abort. I am now looking for another surgeon. The Billion Dollar question for us all is whether surgery is going to help or make things worse. Its all a bit of a gamble isnt it ? .
I am struggling to find anything to help my headaches or ear pain. I have tried everything and Its all very hit and miss. Most stuff except Paracetamol (Tylenol) makes it worse. Oh well, just keep soldiering on, Count your Blessings, there is always somebody else worse off.
All the Best.

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Hi sparky,

There are many discussion here about what has helped people w/ ES-caused headaches. It depends on their source, of course. If your headaches are coming from trigeminal nerve irritation (which could also be causing your ear pain) then a nerve pain medication such as Amitripltyline or Gabapentin can be really helpful. Ice or heat on your neck (you have to test them both to see which helps more) for 15 min at a time several times a day can help, too. Determining if there are certain head positions that make the pain worse is helpful so you can avoid those.

If the headache is coming from vascular compression (most often the internal jugular vein (IJV), then sleeping w/ your head elevated, taking a low dose blood thinner, & again determining which head positions make the situation worse & avoiding those, can be helpful. There have been many recent discussions by @vdm & @KoolDude about heat &/or cold therapy to help with symptoms of IJV compression. “Military neck” is another topic that has arisen in conjunction w/ IJV compression. I you look up posts by these two members or click on the “Research Papers” link under the General category on the home page, you will find links to articles that cover these topics as well.

I hope you’ve found a doctor who can help you & have an appointment to get started toward helping resolve your ES symptoms.


Sorry I have not been good about staying connected. I have additional health problems that are affecting my ability to figure out what is causing what. I continue to have more symptoms of ES than I had before my surgery to “trim” the styloid on my right side. The headache that prompted me to find a solution before surgery was constant and varying in intensity. It was disabling most of the time to force me to stop working or volunteering. I am forever grateful for my husband who has supported my decision and carries all of the financial responsibilities. That headache is no longer chronic but has changed slightly as to where the most serious pain is when I experience the symptoms. I do still have the :face_with_head_bandage:. I am nearly 5 months out from surgery and the new/additional symptoms are all on the right side of my head. The ear, jaw, neck and cheek bone are now involved….I think (?). Therein lies a question. I was diagnosed with Mixed Connective Tissue disease this year. Is the continuing issues from my ES diagnosis and surgery due to ES or MCTD?
Autoimmune diseases, as I have learned, can have triggers such as surgery. It didn’t occur to me that I could feel worse by getting the styloidectomy. :thinking:. Boy have I felt worse! Fortunately, I think after several trials, I am starting a new medication and my severe symptoms have abated. Right before the holidays thank goodness.
The headache reoccurs still. I “think” that the ES IS an unsolved problem in itself, complicated by the autoimmune disease. I am not going to have the left side styloid removed….ever. I am going to go back to my surgeon to see if he has any solutions before opting for surgery again.
Good luck with your headache. It is really a show stopper for all of us that are effected.:v:t2:

Hi Lori,
Thanks for the update,sorry to hear your surgery hasn’t worked out too good. Did you have internal surgery or external ? and how did you cope with the initial pain of the surgery ?. I similar to you, have other muscular body isues and dont know how its all connected or even if it is connected. I like you, dont know if ES is the cause of my symptoms or it just happens to be present. Its a tough call because I already feel lousy in my self and dread taking onboard extra stuff I didnt have before. At the end of the day, its all about trying to make any surgery less of a huge gamble. It good that we can all learn from each others situations. All the Best, hope you can feel better soon.

Lori, I’m so sorry that surgery hasn’t helped you & seems to have triggered an autoimmune disease…I hope that this new medication does help, & hope the surgeon has some ideas- is it worth trying the steroid/ lidocaine injection into the remaining side?
Will keep praying for you, sending you a hug :hugs:

Hi Lori,

How difficult for you to still be feeling crummy after styloid removal. I was tentatively diagnosed w/ MCTD a few years ago, but after a couple of years of follow-up blood tests, all my markers for that disappeared along w/ my symptoms. Mine showed up several years after my second styloidectomy, so I don’t see a correlation between the two in my case. It’s really difficult to know if your remaining symptoms are from the MCTD or ES. My MCTD symptoms were all below my neck i.e. shoulders, elbows, wrists, knees, lumbar & lower thoracic spine. At one point, I had a couple of cortisone shots in my spine which gave me 3 months of heaven i.e. my back pain was GONE! I was so thankful!!

I’m really glad to read that you have found a medication that is helping w/ your pain. Hopefully the headache will continue to decline, too. I found that some of my post op nerve symptoms took 6-12 months to resolve, & my First Bite Syndrome is still in the process of resolving even 7 years later.

The areas you mentioned where you still have pain sound like they could be caused by accessory, trigeminal &/or facial nerve irritation. These are all nerves commonly irritated by an elongated styloid. I don’t know if MCTD affects those or not. I understand your desire not to have the left styloid removed because of the outcome of your first surgery & hopefully your doctor can help you with some alternative to keep your symptoms down.

How great that your husband is able & willing to support you as you walk through these health challenges. You are very fortunate to have such a fantastic man in your life.

In case this would help - the Ben’s Friend Community does have a support group for facial pain & another for people w/ connective tissue disorders of various types. I’ve included the link for the facial pain community below but need to double check which one the MCTD fits under & will send you a link when I have the info.

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HI lori,
I have Ehlers Danlos-Hypermobility and familiar with connective tissue disorders. I have family member(s) struggling with a variety of health issues as a result of it. One with likely autoimmune issues and POTS.

I personally have struggled for DECADES with neck and jaw pain as well as severe headaches.Ive tried just about everything available with a minimum of success although massage and cranial sacral therapy on a regular basis has helped. More recently botox and steroid injections as well as TMJ appliance have been helpful. My eagles surgery #1 inflamed by TMJ for 4-6 months but I recovered. A recent tooth extraction sent me off the deep end and still struggling.Im afraid to have my teeth worked on at all.
As for your left side, maybe a different surgeon might be considered? Really depends on what your scan say ie: length, thickness, direction.

I have found it all weighs heavily on surgeon, level of expertise, anesthesiologist, and level of pain meds,eyc how one does after surgery.


Well, here I am again. You were all right. As time goes by, the symptoms I was having due to Eagles and the surgery to remove calcification on the right styloid, have improved. I am still
getting the headache that I have associated with Eagles and I am having jaw pain on the right side. The headache, at least, is not chronic. The jaw pain is new since surgery. I was finally able to see Dr. Van Daele for a post-op visit. The only thing that came out of that meeting that was unknown to me was that he found the calcification had attached itself to my jaw. Hmmm……new jaw discomfort and pain. Also, Dr. Van Daele did not recommend a styloidectomy on the left side since I am without symptoms and because of my autoimmune diseases.
Speaking of autoimmune diseases, I found 1 support group in Ben’s friends that might be helpful but have not gotten any response from the moderator. I think his/her name is Ben. Is this the founder? I do belong to a group that specifically deals with MCTD. I don’t find a lot of medical information (specialists, medication, treatment options) on this site. Most members want to discuss symptoms which are so many and so different from person to person that I don’t find the information that I think would help me. If anyone has knowledge of support for autoimmune diseases that is more research based, I would love to hear about it.
As always, thank you all for donating your time to help! Your support really makes the diseases not quite so harrowing. :heart:


I’m glad that some symptoms have improved with time at least! The post op consult perhaps explains the new jaw pain, it sounds as if the stylomandibular ligament was perhaps calcified then?
Sorry that you didn’t get any response from the Ben’s Friends group- yes, Ben is the founder, each group has moderators who admit new members, did you apply to join & not get a response? If so occasionally there can be technical glitches with IP addresses, so might be worth trying again with a different email address if you have one?
Thank you for coming back to update us, I hope that with time the rest of the headaches ease & the jaw pain too :hugs:

Hi Lori!

So glad to hear your good news! I am sorry for your new jaw pain but, hopefully, that will fade in time as the other symptoms are doing.

I agree completely w/ Dr. Van Daele about not removing the remaining styloid if that side is asymptomatic. We’ve had some members get an asymptomatic elongated styloid removed & that process set pain in motion. “if it ain’t broke, don’t fix it.” I always say.

Wow , so many of you have this constant headache also! And with ear pain/pressure. I’m so sorry to hear (hahahah) this. My affected side is also severely affected by hearing loss , I truly am sorry. You know all about it. I am not the only one. I’m new here. Many emotions happening within me reading your stories. So thankful for all the info. Hang in there Lori!

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