I saw a previous post regarding this but I wanted to ask if anyone here has actually lived with this without getting surgery for many years? As of right now I have EXTREMELY minimal pain (I probably have more pain in my knee from an old IT band injury randomly than I get from ES). It hurts a bit on certain days when I turn my head and also is much more sensitive during my period (Which I will actually make another post about if no one has because it definitely is something ive noticed).
The pain is EXTREMELY minimal and thats why I took so long to bother to get it looked at because it really wasn’t an issue for me i was more worried it was something like cancer (eek). So when I got the CT scan they told me I had ES. The doctor told me the surgery, if I wasn’t really in pain, would not be worth it at this point…but I don’t know how much he knows about the issue…(he was the one who suggested it before I got diagnosed so I assume he knows quite a bit). I ASSUME it isn’t pressing on my veins because I feel the doctor would have told me about it if it was and suggested I get it removed…I have no lightheadedness or headaches or anything but he said it was 4cm long which apparently is quite long so I have no idea how I am not getting more symptoms?
As many have mentioned on this board it seems to worsen with stress and inflammation (I won’t feel it at all while I am on vacation for example or just having a good time, but then as soon as gradschool starts again…here she comes haha). It flared up around late February when corona virus was just starting to show up in Norway and I was having scans on my right leg for a stress fracture related to overuse in running (I am a huge runner and fitness nut) and that was causing EXTREME distress. : /
I guess my question is, I know this CAN be dangerous but it seems less likely especially if I am not having symptoms and my quality of life is not impacted at all, but the ENT sounded almost TOO non-committal to it and was like “it is more of a bothering thing not a dangerous thing”. OFC I am communicating in English to someone who doesn’t normally speak English so this could also be a factor as well.
I am 28 currently and I would never choose to have the surgery for the “pain” because its so intermittent and mild, the only reason I would choose to do this is if it was going to kill me if I didn’t…(at this point, that ofc can change as I get older).
I was wondering the same thing. I have been living with this a short time, since April. 2020, but my symptoms have been intermittent, but ramping up at times. I don’t know if it’s life threatening if I don’t do surgery or it can be controlled with meds. Trying to get appt with Dr Brian Burkey at Cleveland Clinic. My Styloids are very long 4.7 and 4.6, I’m thinking I’ve been living with them for a long time and then just lately causing symptoms. You won’t know the status unless you have an evaluation. I highly recommend you do this for your piece of mind.
Welcome to our forum! I agree with your assessment that surgery is not necessary for you at this time. Most people wait to have surgery until ES is impacting their lives in a significant way. Not everyone gets vascular symptoms, & even people w/ very long styloids sometimes have minimal or no symptoms. What it boils down to is where your styloids are & how they move in your neck in relationship to 6 cranial nerves & some vascular tissues (particularly the internal jugular vein & carotid artery) that also share the same space. Full or partial immobilization of the hyoid bone can occur if there is stylohyoid ligament calcification. This will also create symptoms that are among those suffered from ES. If the hyoid, nerves & vascular tissues are minimally impacted by the elongated styloids &/or calcified stylohyoid ligaments then surgery isn’t necessary.
In very rare cases, people have had strokes caused by ES but that usual occurs when the styloid erodes through one of the vascular tissues mentioned. Since you have no vascular symptoms, I feel there is practically zero threat of this happening to you. I will say, that besides vascular symptoms, the only way to know for sure if you have vascular impingement is to have a CT scan w/ contrast. For this, your head needs to be in the position that provokes the vascular symptoms as a neutral head position generally won’t bring on vascular symptoms. Again, this seems unnecessary in your case.
Yes, ES symptoms as w/ all other types of pain & health issues increase w/ stress because stress causes inflammation. The fact that you’re on the younger side & so active bodes well for your body to be able to manage your symptoms better & for a quicker recovery if/when you do have ES surgery.
I was 58 when I had my first ES surgery. I am also very active, & my symptoms were bad enough I was having to limit my physical activity. Just prior to my second surgery I had a terrible cycling accident which postponed that surgery for several months. I believe my accident happened because my head position while cycling moved my styloid into a position where it compressed vascular tissues which caused me to blackout. I have no memory of the incident except I was riding down a hill & woke up in an ambulance. Prior to that I really hadn’t had vascular symptoms, just pain & pressure.
Bottom line: Listen to your body. As an athlete, you probably know yours pretty well. If you notice significant changes occurring during exercise or after (heart palpitations, abnormal shortness of breath, light-headedness, excessive pain, etc.), pay attention & don’t be too quick to dismiss them. ES could be the cause.
I’d had ES symptoms for a while before I was diagnosed, & was told the surgery was really risky & should only be done as a last resort. I was given amitriptyline to help with the pain, & it did & helped me sleep too which had been a big problem. So I didn’t consider surgery & settled to live with it. A year later after a prolapsed disc in my neck, I started getting vascular symptoms & felt really quite ill, so that prompted me to look into surgery. It worked really well, & I’m glad that I had it done…in your case if the pain is minimal & you’re not getting any vascular symptoms the it may be best to leave well alone. It’s not just the length of the styloid processes which can cause symptoms but the angle they grow too- so in your case it sounds like you’ve been ‘lucky’ that they’re not impinging on any nerves or blood vessels!
Yeah : ( it’s crazy before knowing this I was totally fine moving my head around and now I’m terrified to do it because what if these crazy mammoth tusks my body decided to make like pierce my veins and kill me . It’s such a dumb thought but it’s like once you know it’s so scary with so little info. . This group has really helped me, and if it got worse I would do surgery for sure. Atm it’s at the level of annoyance I would get wirh breast swelling pain which I also get during PMS and my period. So it’s not a big issue. I think it’s the psychological stress at this point. Of KNOWING these weird things are in there. Maybe after a few more weeks I’ll calm down and stop thinking about them constantly. But as of now I’m laying in bed like perfectly stiff and straight because I’m trying not to move them . I wasn’t even thinking about it at all prior. Bluh.
Totally sympathize w/ your premenstrual issues. I had breast swelling/tenderness & ultimately fibrocystic breast disease starting in college. It was no fun. On the upside, it’s all gone now that I’m done w/ all the hormone cycling!!
Relax about your spikes. You’ll know if they start creating “bad” symptoms. Full steam ahead w/ your activities, just listen to your body a little more acutely.
First, welcome! This forum has helped a lot of people (including myself). I’m 23, a figure skater, and a week out of surgery for this. Based on what you’ve described, I would follow what Jules and Isaiah are suggesting and wait.
In my case, symptoms were severe and there was concern because my internal jugular vein was involved. I knew there was something wrong and based on research surgery was my best option.
Some other things I’ve found - the biggest danger when you have elongated styloids is sudden sharp neck movements like falling on the ice or a car crash. Everyday life is generally not dangerous unless there’s vascular involvement, which doesn’t seem to be your case.
Hopefully this helps, and the initial panic subsides. Feel free to read up on mine and other’s stories here as you make your decision.
I have had styloids that are much longer than yours and they were discovered back in 2013 by my dentist in an xray. For many years all it did was cause neck pain when I would look down for extended periods of time, it was more of a nuisance and Advil would usually help if I had a flare-up. Now, many years later something has caused it to get worse so I am looking into my options again. I am no doctor obviously but I would go with your gut on this one. Back in 2015 I was scheduled for surgery but then another ENT talked me out of it and said it should be a last resort. If you seemingly have no vascular symptoms and the pain you are experiencing is minimal I would hold off unless it becomes a necessity.
Just busted by Cardiologist for annual check up and told about new ES diagnosis. He reviewed all my records and was adamant not to do surgery unless symptoms were bad. As my symptoms are intermittent and the worst part is numbness on sides of neck, I’m inclined to agree with this Dr. Surgeons like to do surgery. There are lots of nerves in the neck and not excited about making things worse with surgery. Could trigger other problems. I’m inclined to live with it.
That’s a great decision if your symptoms aren’t hampering your lifestyle. Most of us who’ve had surgery had a significant reduction in ability to enjoy & manage our lives &/or jobs so surgery was the “no-brainer” choice we made. For the vast majority of us, surgery was amazingly restorative, but as you noted, not w/o some post op challenges. Though nerves do heal, it’s a slow process, & the older we get the slower recovery is. Best to wait until your symptoms truly challenge your ability to face each day with enthusiasm.
I. Challenged to get anybody to offer medication as an alternative to surgery. Is anybody out there controlling their ES with meds and if so, who do they get to prescribe them. My ENT says there is no medication. Did you try meds before opting for surgery?
We do have a very few members who’ve controlled their symptoms w/ medication. The types of medication used are nerve pain meds which fall in two categories - anti-depressants, & anti-seizure meds. There are MANY medications in each of the two categories & what works for one person may not work for another. Also, over time, the medication dosage often needs to be increased or medication changed to another type. Sometimes it takes several months to find the right medication & dosage.
Some of the names we see most often on here are Gabapentin (Neurontin), Amitriptyline, & Pregabalin (Lyrica). I will add that some people also simply take prescription pain meds.
Here is a link to discussions from this forum about nerve pain medications that will give you more information: Nerve pain medication
Thank you for the information. My Cardiologist reawakened by terror over having Both sides of my neck opened up and playing with all the nerves in my neck. I think my pain would have to be constant and unmanageable before I would agree to surgery. The lack of knowledge within the medical community is very concerning.
Interesting use of the term “playing” there, eastmas1. I will assure you that the surgeons are very careful in dealing w/ the nerves that need to be moved so the styloids can be removed. They electronically monitor them as an extra precaution so they know when they are even touching a nerve they can’t see, specifically so the doctor can prevent damage. Nerves don’t like being moved or touched so they do react, & that’s why we get some nerve pain post op. Thankfully, our nerves, like the rest of our bodies, are designed to heal, & unless they’re grossly damaged, they usually do heal over time.
Thanks for keeping me honest. I go thru periods of complete terror at the thought of having both sides of my neck opened up… mostly due to poor information I get from my PCP and ENT Doc here. I picture myself with facial paralysis, drooping lip, eye switches and no voice with a swollen tongue from surgery. I wish my body would give me a clear signal whether to do surgery or not. Today , the right side of my head is numb and I have a wicked headache, but no throat issue, no ear ache. I do have ringing in my ears too. Everyday is different. Very frustrating. Starting to think I need a neurologist. I’m finally approved for Cleveland Clinic , but until they finish in the financial department, can’t schedule an appointment. Lots of red tape. Hopeful answers will come soon. As Im 72, just figured out this year that I’m elderly, I worry about my ability to heal. Always been very active until the virus, so want to get back to that lifestyle and don’t want ES to slow me down.
I did control my Eagles symptoms for a year with Amitriptyline- it helped alot & helped me sleep too! But then the vascular symptoms started & those I couldn’t live with.
There have been a few members who’ve had the steroid / lidocaine injections into the tonsil area which can help, & have helped them for a while- they don’t always work though.
I hope the you can come to a decision you feel comfortable with.
I can’t remember, but wasn’t the doctor you saw for ES concerned about vascular compression? Did the cardiologist see the results of those tests? Would be interesting ro see if they agree?
You remember correctly, my ENT thought carotid artery was pinched by styloid. The angiogram showed that the styloid was not pinching it. The ENT was so worried he wanted me in neck brace and told me to keep my head straight. After that fear faded, the emergency surgery need ended. My Cardiologist looked at Angiogram and thought the arteries were beautiful. He did have me hold my arms out to sides and take a deep breath, and couldn’t get a pulse when I turned my head to sides, only if I looked straight ahead . What that means, He didn’t know. Hmm , was his only response. I’m learning so much, whether I want to or not. I just started Gabepentrin at my own suggestion to PCP Dr. so far, it makes me dizzy. Not sure it will work for me.
I’m sorry for the lack of knowledge among so many doctors about ES & the surgery to help w/ symptoms. There are certainly risks but we’ve had far more members w/ good, healing outcomes from surgery than those who’ve had bad outcomes. The not so great outcomes often are because the surgeon wasn’t well versed in what a proper ES surgery requires.
If the head is in a neutral position during an angiogram, it’s possible compression will not show up. You need to have your head in the position that causes vascular symptoms (i.e. headache, dizziness, pulsatile tinnitus, heart rate changes, etc) for the compression to be visible. Your cardiologist could have been onto something when he noted a lack of pulse when you turned your head to the sides. Getting another angiogram w/ your head turned to the right then to the left might be worthwhile but only if you’re having headaches or other suspicious symptoms on a regular basis.
Gabapentin & other types of nerve pain medication do have side effects & will take some getting used to. Usually doctors start their patients on a low dose & gradually increase it, both to let your body gets used to it & until it reaches a dosage level that works for you. If the side effects are too bothersome, you can try another type of medication. Amitriptyline also seems to be work well for some of our members.