This will be my 4th ES surgery. I finally found a doc here in Minnesota, Dr. Galer in Wayzata/Minnetonka at ENT SC. He said he can do both at the same time and the external approach.What can I expect from an external surgery in terms of recovery, lifting and load bearing, using my arms, lymphatic drainage, food, etc?
The first 2 surgeries were manual fractures of each styloid spaced 4 months apart and I will say it got me to about 80% better surprisingly. The bones fused back within 6-8 months. So my 3rd surgery was a shortening intraorally. This was done by Dr. Hamlar at the U of M who has since stepped down.
My right was 4.5cm and shortened to 3cm. The left is 4cm. I got the right side shortened 6 months ago but it’s still poking me and causing throat tightness.
List of symptoms:
-- throat tightness
– headaches
– face pain
– eye pain
– brain fog
– difficulty holding head up
– neck stiffness
– ear pain
– shoulder pain
– jaw tension / thudding
– arm pain
– hand pain
– chest pain
– gastro issues
– memory issues
– anxiety issues
– thoracic outlet pain
– difficulty taking deep breaths
– tinnitus
– trouble swallowing or clicking sounds
– burning sensation
– burning mouth on occasion
– shaky fingers
– nervy pain down the mid back
– fibromyalgia pain all over the place it seems
– weird systemwide symptoms
– pre syncope (luckily this has subsided)
– high blood pressure (has reduced luckily)
It’s weird because doctors say these aren’t the typical symptoms, but they seem typical for a lot of poeple. So I’m not really sure where doctors are getting their information. I’ve since gone on Low Dose Naltroxen and hormone replacement therapy to help.
I have a 9 month old son who is 21 lbs. I will have help and have had help with him because I haven’t had enough energy with the ES symptoms to sustain caring for him for a whole day. Carrying him has been super tough. I think a lot of my issues are stemming from having to do so much “manual labor” with baby care, which are exacerbating the symptoms.
This has been so incredibly hard. My family is not understanding at all and they think I’m making a mistake. But I cannot exercise or go for walks well. I can’t travel well. They want me to take it slow and wait til I’m 1 year post partum. Or just don’t do it at all.
@alibabac I am very sorry that your family is not supportive, your symptoms align with Eagle and I support your decision You should not have to live like that when there is an opportunity to resolve your symptoms. I had some of the symptoms you have that have resolved after my styloidectomies. Some took about four months to truly appreciate, like the brain fog and sometimes it feels like two steps forward and a step back, so be kind to yourself during recovery.
I’m sorry that your family aren’t supportive, and that you’ve had the previous surgeries but still have symptoms or they’ve returned, that’s really hard when you’ve got a little one to care for!
We’ve not heard of your doctor, has he done many styloidectomies? Having had previous surgery you obviously really need this one to be done right! There’s questions we suggest you ask a doctor in the Newbies Guide Section about surgery if you want to be sure that he’s the right doctor for you, here’s a link: ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
There’s also info about what to get ready before surgery, what to expect, and some links to post surgery recovery as well.
Recovery does vary quite a bit as different doctors have different techniques, and obviously if you’re having bilateral surgery there will be more swelling and so the recovery will be a bit longer. Some doctors put a neck drain in and keep you overnight- this helps with swelling, it’s something to ask about. Also some doctors will prescribe a short course of steroids, which would be helpful for bilateral surgery, so you could ask about that too. icing regularly will help with the swelling afterwards, and also sleeping propped up with a wedge pillow…
Eating is often tricky after surgery, as it can be hard to open your mouth wide, so we suggest getting smoothies ready, protein shakes, soft foods etc, usually for the first week- 10 days, but not everyone has this.
Lifting will slow down any healing, and could bring symptoms back even if they go quickly after surgery, so it’s good that you’ll have help lifting your son. gentle exercise like walking is good, but any household chores really can cause pain after surgery, so would be good to avoid these for a couple of weeks at least, the lifting for longer ideally. I couldn’t turn my head well enough to drive for a couple of weeks as well, so that’s something to bear in mind as well. You’ll likely be pretty tired after surgery too, although obviously you’re used to that…
There’s a link in the Newbies Guide about lymphatic drainage, and massaging the scar with oil is advised too, but not until the scars have completely healed.
There are a couple of nerves which can occasionally get stretched during the surgery- the facial nerve can cause facial muscle weakness, a lopsided smile for example or difficulty closing your eye, this usually resolves fairly quickly. Also the spinal accessory nerve is another one which we sometimes see causes problems after surgery, which can cause arm weakness.
Your symptoms sound like ES, & probably vagus nerve irritation, but also possibly vascular compression. Did you ever have a CT scan with contrast to look at the blood vessels? If you do have vascular compression it’s really important the the styloids are removed as close to the skull base as possible for best results, and also if there’s any scar tissue from your previous surgeries compressing them then this should be removed too…
@alibabac - I agree w/ @Jules that you want to make sure Dr. Galer will do a surgery that will allow you to heal more completely & more permanently from your ES symptoms this time around. Your symptoms do sound like you may have IJV compression. You need to ask him specifically if he’ll resect your styloids above the transverse process of C1 which could give your IJV(s) a chance to open up. If the styloids aren’t cut back that short, it’s possible any nerve pain you have will improve, but the vascular compression symptoms will not. Those include
headaches, brain fog, heavy head feeling, memory issues, tinnitus & extreme fatigue. Gastro issues, anxiety issues, breathing issues, & weird system-wide symptoms are likely from the vagus nerve being compressed alongside your IJV.
In case you don’t know why IJV compression causes the types of symptoms I suggested, here is an explanation: Your IJVs drain deoxygenated blood & toxins out of your brain while the internal carotid arteries take freshly oxygenated blood into your brain. When the blood can’t drain out as fast as it goes into your brain due to the IJVs not being fully open, a situation of intracranial hypertension (IH) occurs i.e. high pressure in your brain can cause swelling of the optic nerve (papilledema), other types of visual changes, brain fog/derealization, tinnitus/pulsatile tinnitus/hearing loss, migraines & even possibly cerebrospinal fluid leaks. There can be terrible occipital pain (base of the skull) which is caused by collateral veins that have developed to “help” the IJV(s) drain blood more quickly, but unfortunately, because they’re doing a job they’re not meant to do, they cause pain. The vagus nerve can also be squashed along with the IJV(s) because they exit the skull side by side so tend to suffer together. The vagus is the most extensive of our cranial nerves & affects many body functions so it only adds to the misery the lack of proper blood flow through the IJV is already causing.
I’m also concerned about your thoracic outlet pain as some of our members who have IJV compression also have TOS (thoracic outlet syndrome) that also needs to be dealt with surgically though symptoms can sometimes be reduced via the correct types of PT.
We want you to get well & not to have to deal w/ your symptoms anymore so that’s why I have put some emphasis on your need to find out if you do have IJV compression being caused by your styloids/C1 vertebra before you have surgery. Knowing if Dr. Galer has experience in dealing with this situation if you have it is also important before you go into surgery with him.
Thank you for your insight! Does the spinal accessory nerve send all that pain down behind the scapulas? I already had that arm weakness last time after the shortening 6 months ago. It’s finally getting strong again… I seriously hope I don’t have to go through that again. However, both of my arms have arm weakness so not even sure…
Yes, the weakness behind your scapulas could be from your spinal accessory nerve. You can see from its location in the drawing below that it could cause pain under the scapula.
I believe we’ve had members who’ve had low back/hip pain which went away when their styloids were resected. Having elongated styloids can throw the body’s posture off to the extent that spinal alignment from skull to pelvis is a mess. That can cause unleveling of the pelvis which in turn can cause hip pain.
Hi. This is my first comment on the site. This is such a horrible disease, I’m sorry for all of us dealing with this.
My journey has been long, however, I am just beginning to actually get treatment. I’ve been begging doctors for help for quite a long time and finally have a very experienced ENT doctor on board to decompress my segmented calcified stylohyoid ligaments. My calcification is at the top of the chain through the carotid sheath as well as at the bottom near the hyoid bone (which remains unfused). The way the rest of the ligament “rubber bands” my jaw in and out of place is unbearable, but we all know the horrible pain this diagnosis comes with.
My calcified SLs are severely compressing my jugular vein on the right side. I have had VERY similar symptoms to you, but also even more neuro symptoms… the whooshing in my ears turned to 24hour/day pulsatile pounding sounds with high pitch frequency ringing that is one step away from permanent hearing loss and the visual disturbances and grey-outs would also pound with every heartbeat. The vertigo is insane. Oddly I never passed out just got close. My ENT insisted that I see a Vascular Neurosurgeon Interventional neuroradiologist before he would touch me. The vascular neurosurgeon said that CTV and MRVs are great but often miss things in our cases and insisted on a catheter guided cerebral angiogram where he goes in by hand and injects contrast dye while taking digital motion X-rays and CT scans and then I could move my head and capture images as well. He told me there was a significant blockage from the right SL, but that higher up in my brain there was some scarring/stenosis/CVST likely from an old blood clot that dissolved likely from pregnancy. Even with already poking around in my brain, I don’t think he knew how bad it was because when I woke up from him doing a second angiogram to measure the pulse manometry while under anesthesia, he stated that I actually needed “extensive vascular repair” and he installed a total of 160mm length of stents (approx 6.3 inches) through my transverse sinus and jugular foramen. His official diagnosis was only “pulsatile tinnitus” and it’s miraculous how I instantly do not have that anymore, but the rest of the symptoms are still so strong if not stronger. I will be able to have my styloidectomy in about 8 weeks when I can get off the blood thinners. It’s hard to explain, but my brain feels like it can breathe. I’m finally hungry and colors and scents are more vivid. But more importantly, my 6” of veins that were 70%+ blocked are open and getting healthy and my ENT will feel it is safe to operate now.
Sorry for the long winded explanation, but I agree with the other comments from the experienced moderators about you having IJV compression. They’re starting to think that my calcification began nearly 25 years ago when I had a tonsillectomy. I have since gone through other serious surgeries with horrible complications and many other things when ES could have been the culprit the whole time. But if you have had this for quite some time it explains the symptoms going all down your back and if your IJVC has gone on for years like mine you likely could have narrowing of the veins and a blood clot could have gotten stuck as well with your new baby hence why you’re spiraling so quickly. There seems to be a debate amongst surgeons about removing the ES external blockage before or after getting stents installed internally but my doctors agreed ES comes second.
I truly hope this helps you and does bring you some permanent relief. I’m 2 weeks post stenting and am in so much pain, the headaches and trigeminal neuralgia is much stronger than before, but I finally have the brain power to participate in this wonderful forum. Please advocate for yourself and great job not giving up after all your attempts.
@LoganG I’m sorry that you were feeling so ill, & that it took so long to get diagnosed, but good that you’re on the right path now! Can I ask who was the Vascular Neurosurgeon Interventional neuroradiologist who did your stents? And who are you seeing for surgery? It’s interesting that you’re feeling better with the stents in- usually doctors feel it’s best to do the styloidectomy first to relieve the compression and head pressure, as doing a stent where there is bony compression can be dangerous, but it sounds as if your stents were higher and not in the IJV?
I hope that you’re able to have your surgery soon and that it helps with the trigeminal nerve pain, have you tried nerve pain medication? Take care & thinks for your info
Proceed with caution. You have had 3 surgeries already. When you say “you finally found a doc her in Minnesota”, that worries me. These are complex conditions. Was vascular involvement ruled out? C1? Did any of these surgeons recommend you do a cerebral angiogram venogram in hospital prior to any surgery? You need someone who has done hundreds into the thousands of these surgeries. Have you watched the 2 webinairs that are available to view to you with the specialists? I would not do two at the same time. Same reason my dr did not want to do two hip replacements at the same time. I would proceed with caution. The more surgeries, the more scar tissue and complications happen. Get an appt with one to two of the drs recommended. You also sound like you have much more going on than just ES. Most of us do. Those symptoms are all not related to ES. Sounds like dysautonomia. Have you had an emg? Had pulmonary function test? Ruled out TOS and CCI? I honestly would not be proceeding with any surgery (this group knows how I feel about that and my experience,) without getting workups in all co conditions. Get into a neurologist, get an emg. I have had 13, all abnormal. You want to know the full picture of what you are dealing with so you do not end up needing a 5th surgery.
I see so often many going to the not recommended drs and having repeat surgeries. Also, not exploring all the co morbidities that come with this. Each surgery with poor outcomes, creates more complexity down the road and then possibly, nothing more can be done to fix the initial issue. I have my repeat venogram with Dr. Gordon on Sept. 2. We will have more info of what is going on and what was missed. C1 I believe was not done correctly based on before and after images my Dr pointed out to me. I am also curious about my left transverse sinus. I think its important that patients get this procedure done in the hospital prior to any surgery. :Plain ES is a much simplier complex and easier surgery. It seems based on my knowledge, many do not follow through and rule out vascular and C1 issues. I will keep you all updated. Thank you.
@alibabac your symptoms are very similar to mine. I’ve had 3 surgeries with the most recent (January)being bilateral external approach with the styloids being cut down to a small nub at the skull base and scar tissue addressed. My most disabling symptoms were from IJV and vagus nerve compression. I never had imaging done to prove that is what was going on but it was obvious from my symptoms. I also had all kinds of musculoskeletal pain in the shoulders, upper back, rib cage, and low back particularly on the side of my first surgery (2011 left intraoral) due to scar tissue, styloid regrowth and chronic pain which messed up my body mechanics. I was in PT for severe rib pain when the PT and I figured out it was from ES. I would very much hesitate to use a surgeon who has not done hundreds of cases particularly when prior procedures have been done. My second surgeon who did a right intraoral resection in 2024 declined to take on my left side by external approach because he felt it was too risky and I had too much scar tissues. I’m so glad he made that decision which forced me to find my way to the most experienced doctors. I had to travel across the country and would do it again in a heartbeat. I’m still healing and experiencing some symptoms but with the IJV decompressed, I’m living a life worth living again.
As far as post-op, I wasn’t allowed to lift for 6 weeks. It was either a 5 or 10 lb limit - I can’t remember.
That would be me, but it was out of ignorance. Vascular compression syndromes/symptoms weren’t as frequently discussed 12 years ago when I joined this forum, & my symptoms seemed to me to be mostly nerve related. I’m sorry now that the doctor I saw for my initial styloidectomies didn’t, & still doesn’t, take an interest in discovering if there is a vascular component to a patient’s ES symptoms.
@Jules I’m doing pretty well. I got a new job requiring far less phone use to accommodate my continued vocal problems. I’ve made several attempts to get back to my paddling sports but I’m still struggling with pain around my carotid artery, pain under the jaw joint, inner ear pain, clavicle pain, and rib pain. I have occasional first bite syndrome. I need to build more strength, work on posture, and keep trying to paddle. I feel good each morning but as the day goes on the pain increases. By the end of the week I’m usually in pretty bad shape by Friday. Weekend rest starts the cycle over. I’m off gabapentin and just using CBD and ice packs. Despite everything, I consider my surgery successful. My body was dealing with this for a long time so I’m not surprised that I still have some pain. Having my brain fully functioning sure is fantastic though!
You should not have to live like that when there is an opportunity to resolve your symptoms. I had some of the symptoms you have that have resolved after my styloidectomies. Some took about four months to truly appreciate, like the brain fog and sometimes it feels like two steps forward and a step back, so be kind to yourself during recovery.
