Quantcast

Eagle Syndrome - Online Support Group

Eleven Weeks Post-op

Hello everyone,

Today I am 11 weeks Post-op. As much as I read and search for answers on this site, sometimes I just find I have more questions. My energy is way better. More good days than not. But I have questions.

Quick Summary:
Left side, external, skull base, calcified ligament - all removed.

What I am wondering:
1). In the healing process, especially nerves, even on good days do people experience some nerve sensations (like crawling in skull above ear)?
2). Is it normal for your neck to still have some tension? Sometimes the back of my neck muscle tension is really tight. And my the end of the day I find my head very heavy.
3). When you are between surgeries can the side that hasn’t been removed still be causing pain on the said that has?
4). My incision is finally starting to look better - but it is tight. I massage is 3 x’s a days for 10 minutes. Sometimes I wonder if it is really that tight or is it the numbness over the incision that makes it feel tight? Anyone tried laser therapy for this?
5). I have read about people not being able to sleep on effected side. For the last couple years I have exclusively slept on the right side. Now that the left side is removed - I am finding the right side is becoming more uncomfortable to sleep on and still can not sleep on left. Others experienced this?
6). I can laugh now, talk and the thought of crying still makes me not do it (hurts to much, as does yawning) - but if I talk too much or for too long I am in pain. Is this just a time thing?
7). When I wake up, I feel pretty good. As the day progresses it gets tighter and tighter. By bed - I am ready to lay down. Am I still healing?
8). Has anyone had the “tethering” side pull their jaw to point of maligning jaw - causing TMJ like issues?
9). I worry about (everything) scar tissue causing issues in the underlying tissues. Wouldn’t I be passed that before 10 weeks?

I know you all aren’t Dr’s. but experience is priceless as is shared knowledge. Thank you to those that have these answers and respond.

Sheila

1 Like

Hi sjlash,
Here’s my best shot at answering your questions.

  1. Nerve healing can take up to a year (or more) post op so the strange nerve feelings you have are a normal part of nerve recovery.
    2-3,6) It’s possible that the back of your neck feels tight because you still have an elongated styloid which is making everything a bit “cattywampus” & thus causing tension back there. And, yes, the remaining styloid can cause cross-over pain/symptoms to the side that’s already been removed. Our fascia is laid down in a spiral pattern in our bodies & many of our nerves & vascular tissues follow those spiral lines as well. In my mind that would allow for a problem on one side of the body to refer pain/symptoms to the other side. I suspect your throat/talking symptoms are related to the remaining styloid & it’s orientation to nerves, etc., in your neck.
  2. Massaging your incision is good, but I’d add some coconut or other natural oil into the massage to help lubricate the skin. I have tried laser therapy for scar & nerve damage & think it has helped some but hasn’t been a cure-all for me. Others have had amazing results w/ laser therapy (MusicGeek for one).
  3. It took several months post op (don’t remember exactly how many now) before I could sleep on my post op side. I do sympathize w/ you not being able to find a comfy position at night though. Hopefully w/ time that left side will fully settle down so you can lie on it.
    7, 9) Healing can take a number of months. I had nerve & some other issues that didn’t resolve for 9-12 months post op. Recovery from ES surgery is a test of patience for sure. I believe that what you’re experiencing will gradually disappear w/ time.
  4. I have read other posts on this forum where jaw misalignment seemed to be an ES symptom. I can’t say that it is for sure, but if you didn’t have the problem before your first surgery, it is possible it could be the result of the pull from your remaining styloid & s-h ligament.

Even though you’re approaching 3 months post op, there is still healing going on. Imagine your recovery as a beautiful work of art that is in progress. It will take awhile for the full picture to be revealed. If anything seems very wrong or amiss, it would be worthwhile to visit your PCP to address it.

Sending a hug w/ encouragment. :hugs:

1 Like

Hi surgery buddy! I think of you from time to time and wonder how you’re doing!

On one hand it’s good that we have each other to compare to - being that our surgeries were only a couple days off. But on the other hand - this is a good example of everyone’s recovery being slightly different.

I still feel some zingers to that are of my neck, one every other day or so I would say.

I still don’t have alot of feeling on the skin around my incision.

I hate sleeping on my side that remains. So clicky.

Yawning hurts alot - sometimes there’s even a “pop” on the remaining side. And chewing pancakes tonight makes my remaining side jaw hurt. My remaining side jaw clicks when I chew. It feels like I’ve been punched in that cheek.

Thinking of you.

I agree with all Isaiah says, so will just add in my personal experience!
I had 1st surgery nearly 4 years ago, I had some strange nerve feelings post-op up my ear & a little up my head, actually I still get a little ‘whoosh’ up my ear if I get startled, even now, weird!
Neck tension I have anyway from a bulging disc, so I do simple stretches to help. The scar area still gets tight from time to time, so I massage the whole area even now, probably once a week .
It did take quite a few months to be able to sleep on the 1st surgery side, I used the wedge & V shaped pillows I think for a year after my 2nd surgery as it all still felt a bit pressured. And I definitely notice this worst in the evening- I’ve always put it down to the neck taking alot of strain through the day, plus my posture’s not great, so you feel it in that area. (I think it’s common with any op site; I had 2 C-sections years ago & notice numbness, tightness & aching with that every so often, only a little reminder!)
So try not to worry, but if you do feel you might have scar tissue building, it might be worth looking into the cold laser therapy, I don’t know what it costs, but it did help Musicgeek.

Dear SJLASH,

I had ES surgery 26 days ago. First 3 weeks after I still had to take my anticonvulsant pills because it still hurt?? Some people get immediate relief and some people have to wait and some people don’t get any relief ever. Which means ES was not the issue. I recently just started to reduce my meds by 1/4 then today I reduced by 1/2 and sadly today I had a few short bursts of pain when I talk. I can’t function on the meds they truly SUCK. My neck is numb on one side from the surgery. I’m hoping this gets better, Ive suffered for 10 years - and some of the Dr’s I see believe it’s Glossopharenygial Neuralgia. Brain surgery if I don’t get better from surgery. Good Luck and hang in.

Jeff

Hi Rufus,

I’m sorry you’re still in a lot of pain. I am glad you’ve been able to cut back on your pain meds, even a little. ES is notorious for causing glossopharyngeal neuralgia. If you’ve been suffering for 10 years, it’s going to take awhile for your glossopharyngeal nerve to recover - maybe even up to year after surgery. If you have bilateral ES, it may require having surgery on the other side to remove that styloid &/or calcified ligament as well. In bilateral cases, people often don’t recover well till both sides are removed.

I had a nerve issue which took 9 months to get back to 90% of normal post op. It is an exercise in patience!

Never give up hope! It will get better, just takes time. I never took pain pills and
went thru a lot like you. Finally, after surgery 1 yr 4 months later pain free.
I’m sure it won’t take you as long as sounds like you are doing a lot better than I was.
Best wishes!!

Hope that you do recover soon…
Ben’s Friends also have a Facial pain group if you want to look for info on their site too. GPN lists ES as a possible cause , so hopefully the surgery will help in time. I have/ had type 2 TN (constant aching burning pain); it was getting worse before surgery, since surgery it has improved, although not totally gone. Some of the numbness post-surgery took quite a while to go, I still have a couple of little patches.
Are you consulting with your doctor about reducing the medication? it sounds like it might be early as yet to try to do that, although I appreciate with the side effects they have you must want to get off them…Thinking of you

Sjlash, sounds like you are on track. Rufus, stop worrying, for awhile. Glossopharyngeal neuralgia takes awhile to go away. Keep a diary of what you have going on at least monthly and relax. I think you will see many improvements with some backsliding as you go. In 6 months and again in 12months still healing.
Rufus do not even think brain surgery unless you have healed and if you have bilateral
eagles both sides are done and then only if you have had external surgery and then double checked that nothing has grown back.
An early member, Deleone, had MVD. He posted some you tube, I do not know if he ever recovered, but ES is a main cause of Glossopharyngeal pain. That is what caused all of my left side pain until I had the external surgery. The Glossopharngeal nerve was crossing over my carotid artery. 5 months after surgery, I was still having a few episodes. It scared me. I may or may not have more,but not going to worry unless it comes back bad and hard. I will probably have PTSD over all this the rest of my life, but I will try the wait and see approach.
Sjlash, right now,my brows, my cheek muscles, eye muscles and smile are all out of alignment. I look like my face has been tugged right and left and right. It is beginning to improve. I think the surgery itself tugs on you and areas swell etc. I cannot say much about the TMJ yet. Will message you when my facial paralysis improves.
I am noticing a bit of improvement today. 18 days post op.
I am hoping to take the next year to treat my Glaucoma and recover from 3 surgeries in one year. Neck fusion and 2 external eagles.
Excited that we are all moving forward. Prayers for healing for everyone.

1 Like

Emma, you’re so supportive of others & such a source of good info & encouragement, considering what you’ve been through; thinking of you & really hoping & praying for massive improvements for you!

1 Like

Emma,
Kudos to you for your great attitude. I think long term suffering teaches us patience. It’s not a nice way to learn it but it forces us to cease expecting “instantaneous” results when we have surgery or try a new medication or therapy. I think a lot of people have been initially discouraged by the outcome of their ES surgery because they still had pain post op. We, who’ve had surgery, have all learned that recovery is a game of patience. Thankfully, being patient generally pays off, & we do recover completely or nearly completely.

I’m praying for your complete recovery & also appreciate the wisdom, insight & encouragement you regularly give in your posts & have given for years.

:blush:

1 Like