Recovery update. Mostly great news so far

It has been about a month since I reported about my external surgery results.
Now 3 months and about 1 week ago.

1 Immediately no longer had TMJ pain that began about the time I was diagnosed with Eagles. So I am not using my splint.
2 Immediately could chew on the left side. I had not done that for years. My bite has corrected itself in that my teeth on that side now meet. Still have the jaw that extends to the left when I open the mouth, but it does not hurt
3 Left shoulder and neck pain mostly gone after a few weeks.
4 Nagging ear pain gone
5 The insane itching deep into the ear that I was always trying to scratch with my pinky— mostly gone…
6 Scar almost gone
7 Outer ear and earlobe numbness and swelling almost gone. I have feeling again. I did a lot of massage
8 Excruciating pain at the base of the skull gone
9 Something sticking in my throat gone
10 First byte syndrome gone after about 2 months
A little bit of sharp pain if I massage the bottom of the earlobe and around it, but the more I massage the less pain. No pain if I do not massage
Right side — now have something sticking in my throat, some minor ear pain and a little itching.Pain becoming more noticeable near the skull base, but not as intense as the left Pain in the right shoulder and down into the back, but I can type, cook, chop food. No longer feel almost paralyzed. Tinnitus on right side still remains, left side is not as pronounced. I notice some hearing loss on the right side.
My evaluation of the surgery on the left 100% success and I was really scared because I had been in so much pain for so long.
I will be going in for the right sometime next year. Right now I am fighting an awful sinus infection and cough for the last month. I am experiencing something that I believe started as cold weather rhinitis and blossomed into misery for the last month,but I hope the 3rd doctor visit will be the successful one. And one other note, with the sinus infection, I have experienced a few hours of glossopharyngeal neuralgia from my shoulder to my skull base and up to the top of my skull. It happened twice in two days, but since some of the swelling is gone, it seems to be gone. I am saying that because I have heard from others in the past who are no longer on the site that colds and other illnesses can cause some symptoms to reappear, so do not panic if it happens to you, just wait for the cold or flu or infection to subside.

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Emma that’s great news! So pleased that after being in pain for so long things have improved alot for you! And it’s very encouraging for others thinking about surgery :grin:
I hope that the sinus infection soon goes, & that you’re able to have the second surgery soon.
Have a great Christmas! :christmas_tree:

SUCH WONDERFUL NEWS!! Your journey has been long & hard, & you’ve helped so many people along the way. So glad there is a “bright light at the end of the tunnel” for you!


My dear emma, you have so inspired me to try and move forward with pursuit of my ES surgeon. I think the Baton Rouge venue would be much better for me as well though I must admit like the San Jose state of mind. I will let the holidays go by and maybe start anew with my ES in the spring. Wondering what the wait time is for Dr. Nuss once contact is made.
Things have been really frustrating of late and I just decided I could only do one thing at a time with my medical issues. My neuro surgeon is very receptive to the whole ES thing and agrees that I do have problems there. But I also have problems with my cervical spine that need surgical remedy - fusing 3, 4 & 5. Is that similar to what you have addressed in the past? The traction therapy that he ordered (so we can check off all the"insurance boxes") hasn’t gone well so far but we are going to try manual traction rather than that nasty little contraption they hook you up to. That thing pressed in on the sides of my neck and about did me in! I am so far refusing the steroid injections…just something telling me not to do it. I’ve heard really good and really bad things about those. At the end of the day I can’t figure out which surgery to do first. I think I’ve had more surgeries than one probably should and I want to make sure all future ones count - my body is really good at making scar tissue. You having been through much all the same issues, wondering what your thoughts are on what should be primary and what should be secondary.

Thank you so much for your post. I am having so many of the same symptoms as you and will be having surgery on January 25th. My ears are so itchy deep within and I have a lot of jaw and skull base pain that is not TMJ. Very encouraging to think they can all be gone. Thank you!

ddemaso -

I’ll put your surgical date on my calendar & pray for you especially that day. I’m sure you will notice a BIG difference once you begin to heal from surgery & maybe as soon as when you awaken from the anesthesia.


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I will be praying for clarity for you as you decide which surgery should come first. So hoping you find a surgeon you’re 100% happy with & that 2019 is a year of recovery & less pain for you!


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Thank you so much!

Morning Isaiah_40_31
Thank you as always you are such a good advocate for all of us. Didn’t you also have some cervical spine issues that you had to address? Actually, I think there are a few of us with those issues…wondering what was addressed first by those that are dealing with it.

Hi kiZe6159 -

My C-2 vertebra rotates out of place regularly from an old whiplash injury, but so far I don’t have any disc or nerve damage that causes constant pain. I see a chiropractor as needed when my neck gets too out of sorts & that helps for a few days to a few weeks. I think in your case, the hard thing is knowing how many of your neck symptoms might be as a result of your having ES & how many are truly cervical spine related. Until you have surgery, there’s really no way to know. Jules did/does have some cervical spine/disc problems. Hopefully, she’ll address your query as well.


I had a disc problem C5/C6, which started at the same time as the vascular problems with ES . It was also causing alot of muscle tension in my neck & shoulders, which in turn aggravated the Trigeminal Neuralgia & Occipital Neuralgia I had…I had to give up exercise, & saw a physio, who gave me gentle neck stretches to do. They really helped, enough to settle my neck right down, so I didn’t have to have any further treatment for my neck. So not as compicated as your neck issues! (Which is why I didn’t chip in earlier!)


Good luck with your decision on your surgery. I know it’s hard to decide what to tackle first. I also need cervical spine surgery, C4/5, C5/6 AND C6/7 fusion. I was scheduled to have this surgery last August but canceled it to have my left side ES surgery with Dr Samji in San Jose. I was hoping that some of my neck pain was from the ES but I didn’t get neck relief from the ES surgery. I have had improve in jaw pain, ear pain, facial nerve pain and most of all my left sided headaches. Though my headaches are not completely gone, they are much improved and less frequent. I think I made the right choice because now I am actually able to get some things done. The headaches I was having would completely debilitate me. I couldn’t concentrate on anything. I think my next step is going to be cervical surgery and eventually my right side ES which has become more noticeable since I had the left side removed. After the holidays I’m going to try to find some good neurosurgeons in my area to get additional opinions on my surgery options. The problem is knowing who to see and which opinion/option is the right one for me. Anyone know of any excellent neurosurgeons in Southeast Louisiana?

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eaglesnest! thanks so much for your response and info. That same area is pretty much what I am looking at. Been building to this very thing for quite a few years and am now listed as severe. My headaches render me quite useless as well…feels like my head will surely explode with a secondary explosion coming from my ears! I have got to get some kind of relief on something and my neuro surgeon is a doc that I am comfortable with and I trust his abilities. It’s so hard to tell which is what at this point, I just want to dig a hole and crawl in (except that I am claustrophobic-LOL)! It’s likely that I will move forward with the cervical spine surgery in the spring and will of course pass along the outcome - good, bad & ugly with relation to it’s affect on my ES. I will say that I am quite concerned about the affect it will have on the ES after doing some research and watching a couple videos. Looks pretty much like they will aggravate the heck out of the whole area if going in through the front especially. I have not discussed the actual procedure with the doc yet, will know more at the end of January.

May I ask who’s your neurosurgeon? It would be nice to find a neurosurgeon who is also experienced with ES. Since they are cutting in the same area, maybe they could do a SP removal at the same time as the disk surgery. Just wishing. I’ll pray for you. By the way, I live in Slidell. Go Saints!!

My neurosurgeon is Dr. Daniel C. Cochran in Norman, OK. The dentist that did my pan-am spoke very highly of him - did a brain tumor removal on his Brother-in-law that nobody else would touch. He isn’t schooled on Eagle though…mostly just from me. He has looked at my films and fully agrees with the ENT here in Norman that diagnosed me. I really like him because he is very smart and not at all cocky (youngish and good looking as well)!

I can sure think of worse places to be than Slidell…at least the food is fabulous! I’ve been land-locked here in Oklahoma my whole life and I can’t really think of anything worthy to brag about!!! LOL Maybe our Thunder Basketball Team or the Univ. of Oklahoma Football Team!

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It has been awhile since I have reported.
I did get my TMJ back and I am wearing my TMJ guard, I think that I should have been more careful. I have been wearing the stuff for about 6 or 7 weeks and I am feeling better. I believe the left sugery is a success.
I am able to tolerate many more foods. My acid reflux though not totally gone is so much better. I am almost 100% sure that the Vagus nerve was impinged.
I am having surgery on the right side on March 14, so I am not out of the woods yet. This skull base surgery is scary, but I know this will all get worse if I don’t stop it.

Kize6159, Eaglesnest, I brought my surgery report from my Eagles surgery to my neurosurgeon. He had never heard of it, but he thinks he should be considering Eagles as a reason for neck and shoulder pain. He was very receptive of my report. I went to a dentist who was not interested, funny. I do try to tell my doctors because I do not believe this is that rare.
I am sorry that I did not get back on earlier. I really cannot address which should surgery should come first. Neck or Eagles. I think I should have done the Eagles first because I do not think my c6-c7 was that bad and I did get worse. I had to do the Ealges to get better. Thing is, I doubt that there is a right way. Hindsight, both are better now, but the last year was very trying. I think it is wise to have a plan for both surgeries because they are in close proximity and they both involve the neck and nerves in the vicinity of the neck. On March 14, I will have my third surgery in a year and a 14 days. I believe that I am on a better plane now than I was last March and last September. The good news is that all my blood work on my annual exam shows less markers for inflammation, higher platelet counts( mine have been ranging just below normal for several years) and now they are up into the normal range, just 6 months after my Eagles surgery and my cholesterol dropped to its best range ever and I have done nothing special in the last 6 months. I do try to exercise and walk daily and eat very healthy, but I have been doing that for years.
ddemaso, how are you doing?

I’m so glad to read this wonderful update, Emma! I know you went through some turbulent waters during the healing from your most recent ES surgery, but with time and patience you’re seeing what we hope for each time someone has ES surgery. Choosing a surgeon who does the most complete eradication possible of styloid & s-h ligament seems to make such a difference in the end result of surgery.

Emma, glad you’ve turned a corner, & that things are improving…I hope that your 2nd surgery goes well & that you have an easier recovery- will be praying for you!

Hi @Jules - just found your very old post! Yesterday, I saw the pain consultant after a year’s wait. Explained that the face/jaw pain really improved after the arthrocentesis but the head and neck problem was getting worse. Turning my head is increasingly difficult to the left and pain is concentrated to the right of the head, neck, shoulder. He told me I have occipital neuralgia and has put my name down for a nerve block (GON). There is another 6 month wait for this. Did you have this treated? Is it delaying tactics to avoid saying it’s ES? I think I’ll die of old age before getting all the answers! I have extensive degeneration at c2 where the nerve starts. Apart from gentle stretching and heat pads, what can I do? My shoulders ache and my right bicep burns, with pins and needles in my little and ring finger. X

Mine went, TBH I can’t exactly pin point whether it was the physio & exercises I did or the surgery! The exercises I had to do were very gentle chin tucks, just 5 at a time laying down with your head on a thin pillow, then gentle head turning 10x one way & then 10x the other. Although someone (sorry, can’t remember who) posted that chin tucks can be bad if you have jugular compression. I did but never found it a problem for me, but just wanted that cautionary note added in! My neck was really stiff & I had limited movement but the exercises really helped. It sounds like you could have accessory nerve issues too with the pain/ pins & needles in your arm & hand? Just so frustrating for you when so much could well be ES, although hard to say exactly if you have C1/C2 issues too… :hugs:

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