I was wondering if anyone has had any luck with medications to control the pain from Eagle’s? I’m currently on Gabapentin and they have increased it. It helped some of the severe pain, but not everything. My one head/neck surgeon is having me try Flexeril to try and loosen the ligaments. He wants to try to rule out everything before surgery.
I actually have surgery scheduled with Dr. Delacure in 2 weeks and wondering if I have jumped into surgery without trying absolutely everything.
Thanks!
Hi deezy456,
The symptoms of ES are caused by irritation of up to 6 cranial nerves that “live” in your neck in the same area as the styloid processes & stylohyoid ligaments. Elongation of the styloid(s) &/or calcification of the stylohyoid ligaments can cause irritation to these nerves. Alone each nerve when “upset” can create painful & sometimes scary symptoms. When more than one is irritated the symptoms caused can be downright debilitating. Additionally, vascular compression of the internal carotid artery &/or jugular vein can occur which creates other miserable & concerning symptoms. Obviously, the solution for recovery is to remove the offending bones/ligaments so the nerves &/or vascular tissues can recover.
Though there are other nerve pain medications you can try, only removing the styloids will allow you to recover from your symptoms. Masking them w/ pain medication is not the ultimate solution. We do recommend surgery for those whose symptoms are impacting their lives seriously. Some people are able to manage symptoms w/ pain meds for awhile, but often, surgery is still the end result.
I’m glad your surgery is scheduled with an excellent ENT surgeon.
I second Isaiah on this. Many of us have tried all this and spent years looking for relief before being diagnosed with ES. Most often these drugs are a band-aide and you get side-effects without little relief. If you have confirmed ES diagnosis, in severe pain and doc is ok with doing surgery, you should be fine. Once ES reaches a certain severity, usually surgery is the only cure. On the good side, taking these prior to surgery and getting neck to relax some, doesn’t hurt and may help in the long run.
My biggest fear is the surgery itself… And as the doctor said, it may or may not help the symptoms and it could cause other issues.
No one really talks about the recovery from this type of surgery. Will I be in bed for days? or longer?? (I know everyone heals differently) When realistically can I resume work activities, which is computer work as well as a personal trainer? Will I need to find a pain specialist for after the surgery to manage the time during healing?
You can search the discussions for what to expect after surgery…although it’s tricky as we’re all differently so healing can vary, & surgical techniques very too.
Dr DeLacure usually seems to do external surgery, so I guess yours will be- it’s a slightly easier recovery than intraoral surgery. Rest is important, keep semi upright ( we suggest using a wedge pillow) & regular icing will help keep swelling down, which will help. You might find chewing difficult so best to get soft food & smoothie ingredients ready.
I don’t think exercise other than walking is a good idea, for at least 2 weeks, probably nearer a month. Unfortunately many doctors are a bit blase about the recovery & think you’ll be back to normal in a couple of weeks, but it will probably be at least a month before you’re back to normal. I had to do a bit of lifting for work & definitely wouldn’t have been able to do that before 4 weeks, I couldn’t drive for 3 weeks either as turning my head was very uncomfortable. Computer work may well be okay after a couple of weeks though.
Pain varies- I only had pain relief the first night in hospital & then just paracetemol after that, but most people need more; hopefully you’ll be able to discuss this with the doctor & get some pain relief to take home. Some people have been prescribed steroids to help with swelling too. Some members have needed rest in bed for a bit, although as long as you don’t overdo things you should be okay to be up & about a bit. It does vary…
I agree with what the others said- surgery is the only cure; there are other nerve pain medications which can help but thet’re not a permanent solution. Whether to have surgery is a personal decision, deoending on your quality of life versus the risks. Most of us get to a point where the pain & other symptoms outweigh any risk.
Hi deezy456,
I’m chipping in my recovery story as well since it’s a little different than Jules’. I went back to gentle exercise (mat Pilates) 2 weeks after my first surgery & did a 15k (9.3 mi) running race at 6 weeks post op. I should have waited longer on both accounts. I think that pushing myself (I have a hard time sitting still) set my healing back. At about 2 months post op, I got my full energy back & started feeling pretty normal again though some of my nerve pain recovery & numbness took 6-12 months to resolve.
Healing from ES surgery can be a 3 steps forward/2 steps back process i.e. you’ll feel pretty good for a few days then suddenly pain/symptoms return for a few days then the good days return. In the end, the good days outweigh the bad as the body heals. The goal is to keep a positive mindset, LISTEN to your body & don’t push through when it asks for rest or you feel pain.
Finally, post op days 3-5 or 6 are when your post op swelling will be the worst. The first couple of days are usually less uncomfy because you’re still receiving the benefit of anesthesia, pain, & anti-inflammatory meds given during surgery. Those wear off about days 2-3. Keeping your ice packs at the ready to use intermittently throughout every day over the first week is important. Taking your pain meds on schedule is also critical for at least the first 3-5 days. Bear in mind pain meds are usually opioids so starting immediately post op, you will also need to take a laxative & stool softener or something like magnesium citrate to keep your digestive system functioning well.
I will be praying for a successful surgery & great results for you.
Thanks for sending your story and the tips about magnesium citrate or laxative.
Did your surgeon handle the pain meds for you post surgery and longer or did you need a pain management specialist or other doctor to handle anything you needed down the road?
It’s scary that it’s a day surgery and you’re on your own shortly afterwards.
:: Dee
Deez,
My surgeon gives RX for prednisone after surgery which in my opinion was a god send. This combined with wedge pillow and consistent icing and not overdoing it had me out walking the day after surgery. I took pain meds for about 24 hours for fear of having pain go out of control. On day 2, I was down to one pain med a day in afternoon. I think the prednisone makes all the difference in the world since it controls the swelling and keeps everyhting manageble.
I have pain issues after surgeries generally and had Oxycodone on hand to use when necessary. I just had 2nd external surgery and I had a pretty similar experience with the pain levels. Ive had about 20 surgeries in my life and this one was a walk in the park. It seems scary but if you have all the information, plan for post op and have the right meds along with having a good surgeon you will do just fine.
Im a month out and have found sitting at computer upright having to hold my head up to be a little bit of a strain. I’m probably overdoing it and when I rest on my pillows, it takes some of the strain and swelling away. Although some people go back to work 2 weeks after, I personally would not do it and even part-time at that. Your body needs to heal and the stress of work can impact healing. I feel ok but not ready to return to work and scheduled to return in 2 weeks. 1st time, I was able to take more time off and I didn’t feel 100% till about week 12.
I had my surgeries done by the same surgeon (Dr. Samji) who did Snapple’s surgeries. He does Rx both the pain meds & steroids & will refill pain meds as needed. I believe most surgeons will do that. Unfortunately, not all surgeons Rx a course of post op Prednisone. We HIGHLY recommend it & feel you should ask for that if it’s not offered.
I ended up needing Percocet for about 6 weeks after surgery though I started reducing the dose & increasing the time between doses after about 2 weeks. Dr. S also gives a really good instruction sheet for pain management post op. It includes the info you already have - ice, ice, ice! Get several gel packs. Ice your neck for 15 min on & 45 min off several times each day. Make sure to put a thin washcloth or towel between your skin & the ice pack even if the ice has a cover on it. DO NOT lie flat in the first week post op. Our doctor recommends keeping your head elevated to 30º. I found I needed to keep my head elevated for 6-8 weeks after surgery, or I would feel swelling in my throat. It’s rough learning to sleep nearly sitting up but it is doable.
I did end up needing extra recovery help after my second surgery because I had a cycling accident just prior to my surgery date that resulted in a head injury & ultimately Meniere’s Disease. My surgery was postponed, & after surgery, I needed to see the ear specialist in Dr. Samji’s office to help me deal w/ symptoms from that. Dr. Samji is the throat doctor in the practice. Doctors are very specialized these days.
Wow 6 weeks on pain meds is really long. We’re you functional during that time (able to do mundane things, drive)? I know anything with codeine makes me sick. Hopefully they find an alternative that works.
I fear the pain in my throat, which causes bad panic attacks now.
Thanks for all the I site. Will be helpful for sure.
The only thing that can touch my pain is steroids and NSAID - opioids only fog my brain which is miserable! Figure I have lost enough of that already 
I am on a blood thinner that has helped my pain immensely related to jugular compression via my styloid and/or ligaments. I take plavix 75 mg. My pain flared after a few months on the blood thinner and my doctor had me try flexeril at bedtime with the plavix and I feel good again. In the future he also has said i might try steroid injections.
Is this before having surgery or after?
Blossom, How long have you been dealing with the pain?
Unfortunately the flexeril doesn’t really do anything for me. They tried Norflex which apparently should have knocked me on my butt, but it was like taking a placebo. I thought at the very least my back would feel better 
The only thing that helps is Clonazapem or Xanax, but that’s not a realistic solution long term.
@deezy456 I’ve been dealing with it since March last year. But have had headaches for years that I now now are related to the compression of the vein. I had a ct scan, ultrasound of my jugular and an angiogram. My doctor wants me to try getting off the meds and see if i still feel ok. He is thinking maybe it’s the muscles/ligaments that were too tight on my neck causing all of the issues and the flexeril could have “cured” it. He still thinks removing the styloid will help. But wants to try other things first. Lately on the meds I’m feeling ok but not wanting to stop them and risk more pain!
This is after surgery for me 
One of my head/neck surgeons wants to keep trying options, but will do surgery as a last resort. Dr. Delacure just went right to surgery option assuming I had gone thru all of the other options already.
I’m just hoping my nerves aren’t irritated by the tooth extraction/implant I had done back in July and the styloids aren’t really the problem.
When I look back at an old Pano xray from 10 years ago, the styloids looked long back then. And they told me I had TMJ problems. And then it just kind of went away on it’s own.
@deezy456 it could also be both of those things (TMJ and styloid) they’re common together. That’s the assumption my dr is treating me with. He said he thinks removing styloid will definitely help but wants to get any other potential issues in that area sorted first. He actually put me on flexeril because he correlated my pain flare with going to the dentist! Holding your mouth open for long periods of time, for some turning neck certain ways, can really exacerbate the issue.
Hi Deezy,
I was operated on 2 times 2 years ago, but still probably not enough SP has been removed.
I still have pain that I would classify as primary and secondary.
Primarily I mean nerve pain, in the ES area. I would describe this as glossopharyngeal and trigeminal (2nd and 3rd branches) neuralgia. These pains range from tingling to stabbing and burning, especially in the back of my throat on the left side of me.
I would describe all other complaints as secondary. In my opinion, these are caused by the reaction of the fasciae and the tension of muscles, as well as a sloping posture. This would have to be nociceptive pain, in special places all over the body, e.g. Head, jaw, temples, neck, shoulder, lumbar region, pelvis, foot.
Because the primary pain got worse over time, I was about to take carbamazepine. I didn’t want that because of the many side effects. Instead, I tried a fairly high dose of CBD. So I took 120 mg from the Dutch company Lucovitaal as a single dose. This pain improved astonishingly significantly, so that for several months I have been taking 80-120 mg of CBD in capsules 2-3 times a day with good success. I don’t feel any side effects. At most, sometimes a somewhat queasy feeling in the stomach.
I also use THC from cannabis indica flowers.
The best strain I’ve found for my symptoms so far is Pedanios 20/1 aka LA Confidential from Aurora, Canada. Perhaps only the combination of THC and CBD is effective against the primary pain.
That also helps me against the secondary pain. I think they are the result of Primary Pain.
Movement without shaking or strong head movements also helps. Actually, only backstroke style crawl at a moderate pace works well.
I also take Wobenzym for anti-inflammatory and blood thinning, which also makes a positive contribution.
This is of course an complimentary approach that works for me to some extent and makes the pain bearable as long as I wait for the next operation.
Wow. It seems a lot of people still have pain even after the surgery.
It’s good to know the CBD THC combo has helped.