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Eagle Syndrome - Online Support Group

Scary relapse


#1

Hi all,
About 4.5 months after surgery, all was going well. About a week ago,I started with acid reflux again. I was scheduled for an EGD thursday morning, but had to go in and cancel last minute
My ear pain came back and TMJ. I really do not know if it is TMJ or Trigeminal neuralgia,but my jaw is crooked and left side pops
I have been in pain since Wednesday night.
It got really bad last night. I am using my jaw appliance again, tried gabapentin last night, Took tramadol today. Not talking much eating soft food. Tramadol makes me a little itchy, and now I have shivers like anxiety or something going on before. Going to take Gabapentin and xanax tonight. Keeping the bite guard 24/7 for now. Not sure it will help.
Calling the TMJ doc Monday, but he does not take medicare so I have to private pay.
My right side neck is hurting like the left did just not as intense,yet
I have been trying since before Christmas to schedule the right for early March. The nurse finally returned my call on Monday. The doc’s schedule was not set up. She assured me that she would call on Tuesday. No call. He has surgery on Wednesday, so I called Thursday. She is never in the office or available. They work half days Friday still no call. My husband is going to call for me on Monday.
I have an office appt Feb 19, but she promised to get me the surgery date. We have to drive two days to get there and we really do not like Louisiana weather right now and do not want to be there unless we know we will have surgery soon.
I hope the surgery on the right side will help. I know my right side is getting worse,so I am not putting it off for years.
Geez, I hope I do not need jaw surgery or TN surgery when this is over. How would we know the right one and I am tired of this pain. I know you understand.
Opiods and Aleve or other similar treatments are off the table for me. Now with Glaucoma, steroids are more dangerous and antihistamines are not good. Thanking God, I had iridotomies that were successful in July, because I can take antihistamines and other drugs that are dangerous to Glaucoma but must be cautious.
Thanks for letting me vent. Getting old is not for the faint of heart.
Other than a bad sinus infection and cough that finally let up, I had been doing well the last few weeks. I feel like my blood is rushing through my body. Anxiety, I think.
Been excited about a plan for a family get together in July with my children and grandchildren. It is a first, not on a busy holiday. I was planning like I never had eagles,this is so discouraging,but hoping things will work out.
Still trying to get in my home Physical therapy and walk over 7000 steps a day. My hips do not handle 10,000 everyday, but trying to keep moving.
All of you are in my prayers and thoughts as I think we can all say that we feel the pain. The symptoms are very similar and relentless.


#2

Emma, I’m thinking of you & so sorry after all that you’ve been through you’re suffeing on here…I’ll be praying that the doctor will be able to schedule surgery for you soon. You’re so strong & brave, hang in there & we do understand, keep venting! God bless, & a big hug…


#3

emma!
I’m so sorry you are having a relapse - YUK! Good news is that you know what “good” feels like and bad news is that you know what “uh-oh” feels like. And of course we all know the possibility of the remaining problem child ramping up! Still doesn’t prepare you for it actually happening at random. Vent away my dear…you know we all get it and only wish the best for you. I hope you are able to get some relief with the resources you have available. Sending positive vibes for you to get back up and moving - hoping this is just a little glitch and it won’t intensify or last long! :persevere:


#4

Hi Emma!

More encouragement here. There are a couple of things that come to mind. First is that sometimes w/ nerve healing it’s 3 steps forward & 4 steps back, but over time, the healing does move in a forward direction. It’s the backward days that are scary & hard to face. Second, there can be cross over symptoms from the remaining side which can be worst than those on the side that still has an elongated styloid/calcified ligament. Our nerves have their own unique paths inside of our bodies, & since we’re each uniquely designed, what is painful/symptomatic for one person might not be for another.

I, too, will be praying that your surgeon’s office gets back to you this week and that surgery can be scheduled in the time frame you were planning to go for your follow-up.

I say look on the optimistic side & keep planning that family get together in July. It will give you something special to look forward to & may help “drive” you in a healing direction. Hopefully there are others in your family who will join in helping w/ the planning & execution should you not be totally healed.

So glad to be here for you. Feeling very sad for your big set back. Look up. Lean hard on our heavenly Father. Keep on trusting!! God has a special plan for you.

:hugs:


#5

Hi Emma!

We are all keeping you in our prayers. Hopefully all of this will be behind you and you will be able to enjoy your family. Keep calling and complaining because its the squeaky wheel that gets oiled​:hugs::hugs:


#6

Hi Emma,
I have not had surgery yet and apparently need to wait until it gets worse. I have TMJ too. But here is a thought on the jaw pain and crooked jaw. Maye it is not ES. I have had a muscle spasm in my jaw before ( I did not realize it was a spasm) I was sitting with my head slightly turned during a long conversation. That night my jaws started hurting. They next day it was worse and finally my jaw started to jut forward etc etc it was horrible and I could not eat anything other than mush. I went to a chiropractor to see if they could help me. They said it would be painful and their massage therapist massaged on the inside of my mouth and outside as well. Then the Chiro adjusted my jaw. I think I went a total of three times, maybe two. The pain subsided and I went back into place. ES or the surgery in general may make you more more susceptible. Just a thought and thinking outside the box


#7

I have tried twice to respond, but keep deleting because I am on my tablet. I am not well right now. Very up and down. 4months after surgery the steroids have worn off, but the TMJ and pain, I expect to be an issue in the future because my left jaw has no chewing muscle ( from MRI) because of the congenital deformity. Getting rid of the Eagles is a first step to ultimately diagnosing the source. The hinge is the only thing allowing me to open and close and I am afraid it is wearing out. However, I still need to get rid of the right side becasue of headaches and other pains and I need a clean foundation to diagnose the jaw and know what is going on. TMJ doctor today. No surgery schedule. I have an office visit, but nurse promised the schedule so I know when I need to actually do the office visit, She did say surgery could be quickly after the office visit, so we will have the office visit 02/19. I would rather be in Fl for the rest of the winter if the surgery is scheduled far in the future, but I cannot rule the doctors. This might take more than one trip and the trips are stressful as well.
Eagles surgery done as early as possible might prevent the nerves from permanent damage.


#8

The last sentence was meant for those thinking of surgery. Sorry, I was not clear. Best wishes and love to everyone on this site.


#9

Thinking of you Emma, & hope that you get a date soon…


#10

Emma, is the tmj surgeon Dr. Piper in Florida? If so, you couldn’t be in better hands. He is world renowned and the best in his field. He will do very thorough testing and imaging and won’t operate unless it is needed. I had bilateral tmj surgery with him 15 years ago and it took all of my pain away. I saw him this September as my jaw was hurting and I was having frequent headaches again and I was afraid that the fat grafts in the joints might not be good as anymore. They are still great and the 3D CT scan showed the calcified stylohyoid ligaments and helped me on my journey to be scheduled for surgery on the 25th to remove these bones. Thank you for all of the info. On what to eat post-op.


#11

ddemaso
Thanks for the info. I will check. Right now, I am just trying to have the right side styloid removed. My TMJ doctor adjusted my bite guard yesterday. I did not wear it at all after my surgery in Sept. Foolish of me, but all my pain was gone until January. I forgot about the fact that the 16 mg IV steroids that I was given after my first surgery would give me a false sense of healing. About 2 weeks ago, after I had eaten a lot of crunch holiday stuff and started talking to people about some business issues, my jaw started hurting awfully. I have been wearing the bite guard 24/7 now and I am feeling better. I still do not want to quit wearing it. As I recall, I wore it that way for a month when I first got it and after my appointment yesterday, I feel even better.
I asked how my joint is doing because it pops so badly and feels like it may be bone on bone from arthritis. He did an xray and says the joint looks good, but he took the CT scan and the MRI of my neck that was done before my eagles surgery and he is copying it and studying it. For now, I do not have to return for 6 months. That is about enough time for me to recover from the right side and we will see how things progress. One socket bone is shorter than the other side, in other words. My lower jaw on one side has difficulty reaching the top teeth in addition to a slight cross bite.
As long as I wear the byte guard and do not stay on the computer long, I am doing okay. Lesson learned, I have TMJ, wear the byte guard after surgery. I can find out later if I need it, but wear it for the first year after surgery so that I do not hurt. Steroids are good to not swell and get through the surgery pain, but they do wear off. I need to work on strengthening the sternocleidomastoid muscles, but that will be something I can better work on bilaterally after I am 6 weeks out of my second side. Thank you all for keeping this site going and helping me and others.


#12

So glad to hear about the help your TMJ doctor has given you, Emma & the difference it’s made for you! I totally understand the “false sense of security” given by the steroids used during surgery. I had onset of Meniere’s Disease symptoms between my 2 ES surgeries & was absolutely convinced they were being caused by my remaining elongated styloid & would leave w/ the styloid. I had my 2nd surgery a couple of months after the Meniere’s onset & voila! no more Meniere’s symptoms…until 3 weeks after surgery - the very day I had an appt w/ the ear specialist where I was going to proudly announce I was healed. It was a humbling experience. He was the one who pointed out it was likely the surgical steroids that had kept my Meniere’s symptoms away during that time. DUH…:wink:


#13

Thanks Isaiah_40_31, I am not the only one, who was fooled by the steroids. I am glad that I had them, though. The worst part of recovery went well. I have tinnitus and definitely some hearing loss. After this surgery and the healing time, we will see if some of the tinnitus goes away. I do not hold out false hope about it, but any improvements in my health would be welcome, tinnitus, eye pressure, and any of the the other normal improvements.


#14

My eye pressure did go away after surgery. Can’t remember if it was immediate or if it took awhile. I bet yours will go, too, & hopefully, all the other things you’re still noticing, as time passes. The details of my symptoms & recovery were things I thought I’d never forget, but I guess like labor & delivery of a child, the “painful” memories fade & only the bigger, happier picture remains. My tinnitus is significant but that’s the Meniere’s “talking”. I have had tinnitus much of my life so can’t blame ES but Meniere’s definitely takes it to new heights!!