I am new here. I was diagnosed with ES in Early 2020. Original symptoms were throat pain, tinnitus and headaches. They were manageable, but the tinnitus is finally drove me to seek out a specialist for surgery. I live in Florida, but am originally from the Philadelphia area so i found a specialist at University of Penn. Dr. R Dedhia was who I saw. He had agreed to do the surgery, but it was postponed due to the pandemic. Over the last year my symptoms seemed to subside so I kind of just decided to go about life as normal.
I recently went to a chiropractor for back pain and im not sure if this is what caused a flare up or not, but they adjusted my neck a few times and all of a sudden i have been in excruciating pain. It has been so debilitating and I am unable to get into a ENT locally for 2 more weeks! I went and saw my primary care physician and of course he had never heard of it. He prescribed me mild pain medicine and steroids. Neither have worked and my symptoms have only gotten worse. I am at the point now where the pain is so intense i am worried and have considered going to the ER. I do have an appt. on Aug.11 with Dr. Bunnell in Jacksonville, but I don’t know how i can make it that long!
If anyone has any recommendations on managing this pain I am all ears!
Thank you.
WOW! I’m so sorry for the pain you’re in. Neck adjustments w/ ES are not recommended for the very reason you’re experiencing. When the styloids are elongated or the stylohyoid ligaments are calcified (or both), having “neck jerk” neck adjustments runs the risk of breaking the styloids or causing their position to shift putting them in greater contact w/ nerves in the area.
You can call Dr. Bunnell’s ofc & ask to be put on a cancellation list which may allow you to get in a little sooner. Dr. Dedhia did surgery for a couple of our members when he was in Georgia. He’s a good surgeon. I’m sorry you’ve relocated as it would be nice for you to see the doctor you started this ES journey with.
For immediate help, try icing your neck - 15 min on & at least 45 min. off. If ice makes the pain worse, then try heat or try alternating heat & ice. Moist heat often helps more than dry heat. There are gel packs available that can be frozen or microwaved. Use a thin towel or washcloth between your skin & the ice or heat. You may also want to try sleeping w/ your head elevated for a few days to see if that helps.
Another thing that could help is getting an injection of a lidocaine/cortisone mix either at the skull base or in the tonsil area of your throat. This is usually done by an ENT or neurologist w/ ultrasound guidance so the meds are placed appropriately.
If your pain gets too severe, do go to the ER & they can give you something stronger than your doctor Rxed.
Thank you so much for your suggestions. Yesterday was by far the worst day have had yet. I am going to try the either the ice or heat method and see if either one gives me some relief. I will say today is much more tolerable, but still would like to find some ways to get by until I see Dr. Bunnell.
Can’t really add much to what Isaiah has suggested, only that some members have found that lidocaine patches or topical cream have helped, and depending on what’s causing the pain nerve pain meds can help, like Gabapentin, Lyrica, Amitriptyline etc (more info in the Newbies Guide Section). Personally heat helped me, ice made things worse (although more people find ice helps), & sleeping partly upright with a wedge pillow helped too.
I hope that you can find something to help!
Hi! I live in Jupiter, Fl. Just went to see Dr. Bunnell this week in Jacksonville. One thing I learned is to never have anyone work on my neck because the out come can be the styloid can be pressed into nerves. I have had back pain for the last 4 year and right hip pain along with my right Eagles Syndrome. The doctors can not find anything wrong with my back or hip, so I think the Eagle Syndrome is misaligning my body causing my entire right side to be inflamed. Right now I am working on having surgery to see if it will help with the throat, neck and shoulder discomfort.
I have been using steroids’ for my face and back pain for years and they usually start to work within 24 hours. Steroids’ work on lowering inflammation in your body. I would keep taking them if you still have them sometimes they take longer to kick in. Other then steroids’ I use muscle relaxant called Flexoral but I do not know if that would be helpful to you.
Normally you ice injuries for the first 48 hours then use heat after that. I also use a stim machine that you can get at a drug store by you do not want to use those on your neck just your shoulders and back.
I cant add much either but can tell you my experience. My first bout with pain I finally after going to several docs in severe pain was loading doses of dexamethazone (and pain meds) and it seemed to knock it down quickly however the next times I tried it, it didnt work as well. I dont know if type of steroids and dosage might make a difference for you? You mentioned “mild” pain killers. Well this is when you have to get more demanding and request stronger pain meds.Easier said than done Because of the addiction issues, it is so much harder to get docs to give RX for opioids. When I have had some of my worst pain flairs, oxycodone barely takes the edge off. Muscle relaxers also a good suggestion.
Worst comes to worst, take a driver and go to ER and ask for shot of morphine or demerol.
I have been getting a variety of injections into neck and jaw. Primarily botox, steroids, & nerve blocks. The nerve blocks wear off quick but give you some relief even a few hours of no pain. Steroids take a fews days to a week to kick in. It usually takes the right type of docs to do these type of injections. It will realistically take weeks to get into these kind of docs to get these injections. Its unlikely an ER would have a doc on staff to do them either unless you go to some major medical university setting with lots of specialists on staff. I can suggest trying to get your PCP to refer to a pain center that does these kind of injections and get an emergency appt for you? Some here get pain meds such as gabapentin or amytripline which you might have your PCP call you RX for.
Even though I had my ES surgery, I also have TMJ. A few weeks ago, I had an emergency tooth extraction that put me into the kind of pain you speak off. After multiple visits to dentist, oral surgeon and then to my TMJ specialist, I did get the injections I needed as well as an RX for a topical pain ointment which I had to pay out of pocket for. This stuff had combo of ketamine, lidocaine and amytripline. I also got an rx for nerve pain called baclofen. It takes a special kind of doc to give RX like these for pain and months waiting to get in. After all this, I still ended up in the emergency room. I can relate to your pain. It is awful. I just wanted to go to sleep and not wake up until it was all over.
When all was said and done, a friend suggested I might have had more relief from drinking some good shots of vodka. I might just try that one next time.
Alternative options: accupuncture, cranial sacral therapy, light massage, cold laser therapy. As a side note, i have gotten chiro adjustments before and after ES surgery but have a good doc I trust. There are some more gentle chiropractic adjustments. Hang in there Hatty!
Jules,
Thank you for you suggestions. My doctor prescribed me Amitriptyline and it seems to be the only thing that has actually helped so far. Thank you so much!
I really appreciate you taking the time to reply. At first my doctor prescribed just a few days worth of Hydrocodone. It hardly helped at all. Since it was just my primary care physician he was not familiar with ES. After he did some research I went back and he prescribed me Amitriptyline. So far this has helped. Especially at night it has helped me get some sleep. The emergency room type pain i was feeling last week has subsided and now I am just hoping to make it a few more weeks until I see Dr. Bunnell.
Thank you!
It is difficult to find the entrance to the building because it is not the main building but one off the garage so leave 15 minutes to find the right place.
I had to wait in the waiting room for awhile so be prepared in case it is busy
Everyone was very nice and first you meet with an assistant telling him everything and then you with Dr. Burnell. Since it is a second surgery, the first side was in 2009 by a different doctor he did not need to explain everything to me. He did request a X-ray which was done in the office. And he did review my CD and agreed surgery should help my symptoms.
After surgery you can go home or stay the night. He does not use drains after surgery and if you are traveling far away he will do a Tela visit for follow up.
Due to covid and Jacksonville is the epi center of Florida he was unsure if there would be a hold on surgeries. I would ask what the stats is of currently booking a surgery. If I choose Dr. Burnell I would be having surgery in mid September and he felt that would not be a problem.
If you have any questions let me know and good luck with your appointment
I have found steroids work to knock down breakout pain. My doctors have come to the realization that I can administer my own steroids as needed so they give me a Perscription at the start of the year. When I have dentist work it always flares my trigeminal nerve so I start taking 10 mg of steroids 3 xs a day and usually after 3 days I am fine. If it is major extraction work I will take a medrol dose pack. I have not gone the injection way because steroids work so well for me with out side effects. My doctors were amazed I reversed my osteoporosis while on steroids.
HI Ann,
Thanks for your insights and experiences! I met with my TMJ doc yesterday and we had discussions about the steroids prior to any work orally just as you have suggested. No doubt my entire trigeminal branches were highly inflamed. I had a few blisters come out on my face below my mouth 3 days after extraction and bone graft. They went away within 3 days. I never have had any kind of herpes breakouts my entire life. We discussed some type of virus coming out of the nerve, even gullian-bare. We will never know because no culture was ever done. We did have a discussion about an autoimmune reaction to the bovine bone graft material. It can sometimes inflame the nerves? Not usually to the extent I had. Im sure the trauma and assault of all the attempts to numb me before a root canal on a “hot” tooth didnt set the stage well for this reaction. I would take Eagles surgery any day over what I had to endure.
I am very curious about your reversal of osteoporosis which I have. How much steroids have you been taking and for how long to achieve a reversal?
I started treatment with Prolia, then the past two years annually gotten an infusion of Reclast. So far it has kept it from progressing. I was concerned about possible rare side effects of Reclast such as jaw bone necrosis even prior to Eagles surgery and discussed it with Dr. Samji before surgery. So far it has not impacted me that I know of but always in the back of my mind. My TMJ doc suggest when I have my implant, that I do it several months prior to my next infusion of reclast to be safe(r). I generally do not like taking drugs long term for anything however steroids can work like majic for me and can work quickly with loading doses. Long term regular use of them can have a down side…just like any drug.
As a side note, I have been getting quarterly jaw and neck injections of botox, steroids & nerve blocks. My TMJ doc mentioned that BOTOX does calm nerves. I knew it paralyzed the muscle to help it relax but didnt connect it calming the nerves. We have alot of tools in the tool box to calm our jaws, tmj, neck and eagles pain. Finding the right combo that works can be a challenge. Thankfully we can all share what works for us to help guide us thru the pain flairs.
Hi! I take about 60 ml of steroids over a month to control a flair up when it happens…the concern with steroids is over use and bone loss…I reversed my osteoporosis by going on hormone replacement therapy, I excluded fizzy drinks, started bone growing sippy and swim 40 minutes and walk most days. I also am very careful in getting the raw data of my bone density tests. The radiologist just plug in numbers and give you a report which is not raw data. My radiologist produced a crazy report and when I got the raw data I sat down with him to sho him he put the wrong numbers in the wrong columns. My ES Cts were also incorrectly read 2 times so I have realized you need to double check people’s work.
You’re a stellar self advocate! Thank you for sharing your experiences! I have also had some reversal of my osteopenia (almost porosis) after starting HRT (bio identical, of course). I really want to stay away from the injections & pills that force bone density enhancement because my mother-in-law went through a year of bone grafting & gum work in her lower jaw after getting necrosis in her jawbone from the one she was taking. I know it helps many people but there are some who are harmed by these medications.
I did not. When I called to make the appointment i had explained to them that I had seen a specialist previously who did imaging and diagnosed me with ES. I do not know if that was the reason they took me in or not. Hope this helps and you can get in! He was a pleasant to meet with.