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Eagle Syndrome - Online Support Group

Day 15 post op


#21

sjlash, Since your surgeon went to the skull, it seems a bit normal to have pain to the touch. My skull hurt so bad before surgery that I could not lie down. I had to sit up to sleep for about 3 months because of the pain. I wore a soft collar and on top of that a travel pillow like the ones you use on an airplane. Both of them together filled out the neck area and I was able to allow the neck to touch the pillows behind me but never the skull. After surgery, my skull was tender to the touch for several weeks more than a month. I slept sitting up again for awhile. I kept trying to lie down, but it was uncomfortable. I would say I was finally lying down about the 4th week but I still needed the travel pillow for support for about 6-7 weeks. Remember he took the styloid off the skull base and that area needs time to heal. The electrical pain is the glossopharyngeal nerve letting you know that it is there and awake. It will calm down. I am almost 5 months out and I have good days and bad days. The nerves gradually wake up and when they do, they are not very happy at first. I am no longer numb, I massage the entire area a lot and there are some hard lumps that need to be massaged softly as time goes by. These lumps are mostly scar tissue and they are tight and the nerves will be unhappy until all the swelling is gone, the scars are massaged and the neck area is not so tight. Slowly massaging where you can is helpful, but do not push it, you can overdo. My neck is still weak, but the other side is keeping me from getting a clear stretch. I am going back for surgery on the other side in March I hope. I feel much better, I can sleep again and I can roll over in bed. I have not been able to do that for several years. The other side still hurts when I roll over, but not as much as before. I just could not do it. The skull and neck were so tight and painful. I cannot say that I am fully recovered. I know from experience that just about every surgery takes about a full year to be able to forget about it, but 4 to 6 months, you should be much more confident. There will be more good days than bad days as you go along, and you will do too much on some of those good days and think that you reinjured yourself. I think most of us do. Just rest and take it easy when you do.


#22

Emma,

Thank you, I truly appreciate your response. As my the area above my incision is still numb, I figure I should not be massaging it as I could apply to much pressure and possible delay the healing in the lower levels. I do try to move my neck around to get some range of motion back - I had done my best to stop turning my head in early December.

Wondering - did you have TMJ issues as well? If so how has the surgery impacted this/mouth guard?

Hope today is a good one,
Sheila


#23

Yes, I do have significant TMJ issues from a badly formed jaw. One socket short the other long. I thought I was great, but after 4 and 1/2 months, I found out that my TMJ is still going strong. I had not been wearing my bite guard. 16 mg of steroids in IV during surgery gave me a confidence that I was fine. It wore off. I do still need the bite guard. For now, I need it 24/7. Now I am able to pull and stretch all the tissue behind and around my ear. It is helping to loosen the jaw. I have no, yes no masseter muscles on the left side because me teeth do not meet on that side. They have atrophied to fat. Doc says that I can still function because the jaw is the only part of the body with a bony hinge. I am staying away from things difficult to chew and cutting my food a lot. The pain that came on at 4 months is now much relieved and the nerves around the area are not always painful, but I must keep on massaging and not letting my jaw tighten. I will do surgery on the right side soon, hopefully, but I am also contending with Glaucoma so that becomes a problem to manage the Glaucoma versus the danger of steroids and other drugs. My goal get the styloids and stylohyoids out so I can heal and have a fresh foundation to truly evaluate the jaw, and be able to manage the Glaucoma better. After 3 months, you can pretty much massage away. I found that massaging the areas that were beginning to get feeling worked. I would have some pain and be careful, but by massaging the area, the tightness and pain subsides. You will still have pain from time to time, but think about some things. Has the spot been numb and now awakening? This will probably subside and maybe even some massaging will help. Is the area now alive and well but very tight then massaging, ie gently putting motionless pressure on the area for about 30 seconds and breathing fully in and out to relax, may just dissolve the tightness. I find this to be the case a lot and the pain usually goes away. I have tight leg muscles and this is the same around the incision or the surgical site. The internal scars feel hard and just a little extra pressure and breathing can release them. I will be 5 months on Tuesday, so it takes time. I think I will probably have some issues long term where the jaw meets the ear. However, my shoulders and neck are free and I can move chop vegetables, lift a book, drive, and type on the computer. The last one is still bad, I await surgery on the right side to improve my ability to move. The sternocleidomastoid muscle is the major culprit for the lack of mobility. It was being impinged by all this mess.
I was allowed to go to therapy at 6 weeks, 3 weeks for the shoulders down to my waist, The therapy was great for the operated side, not so great for the side awaiting surgery. Good luck, remember if they gave you steroids, you may have some low points as the steroids wear off, but not nearly as bad as if they did not give you steroids during the surgery.
Stay on this site so you can encourage me when I have my next surgery. It is easier to say remember things than to remember. We do not want to remember the journey. We seem to jump to the freedom and realize uh oh. I get depressed every little down turn. I think most of us get scared. So far today has been good. Thank you. The doctor said that I could be numb for 6 months to a year. Most of the numbness is about gone. Then comes tingling before full feeling comes back sometimes.


#24

Just a note to add to Emma’s post - I had my second ES surgery almost 4.5 years ago. I’ve been numb along my jawline pretty much since that surgery. Recently, I’ve been seeing a chiropractor who’s working on the leftover nerve damaged spots on my face. To my great surprise, that numb jawline is “waking up” after all this time! Who knew!?!


#25

Safe travels to your appointment and back! Fill us when you can!!!:heart::heart::heart::heart:


#26

Thank you. I hope you have your second surgery soon and your recovery is easier. My pain moves around too much to think about - I would drive myself crazy. Time will tell.