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Eagle Syndrome - Online Support Group

Bilateral - one out, one remaining - still causing problems?

This Monday with be 4 weeks post op. The incision and a small area above the incision is hard. I have been massaging the hard areas and my numb chin to my jaw gently several times a day but the tingling pain becomes unbearable.

Last night I had what I would describe as my typical flair up. I seem to swell up making it painful to swallow, there is a lot pressure in my nose and in my ears and when that happens I cannot breathe and I get very lightheaded. The remaining styloid on the right was making its presence known with the poking and sore throat pain and when swallowing. I also had a spot pain on the left side that I felt when I swallowed.

I have read on this site that its possible that I would not feel real relief until I have the right side done, but all of this is very discouraging. I was so hoping that most of this was all behind me.

Thanks for listening,
BG

I found the week between 4 & 5 to be just awful - felt like surgery didn’t work. Then I remembered how many times I have read on this site about flare-ups during this time. Stay patient - this too shall pass.

My second surgery is Monday and I feel like there is a constant tug of war in my head and neck. The left side has been removed and was healing nicely. The right side decided it was its turn and is just pulling everything out of wack.

A friend told me yesterday to view it as a journey (if you have bilateral). The first surgery is the beginning, the second surgery in the middle and the finish line is 12-18 months out with recovery.

Hope this week passes quickly.

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Good day @BrooklynGirl!

Darn…I was hoping you were slowly moving forward out of this wacky stage but sounds like from others and as @sjlash has said, this is not uncommon at this phase. Comforting and straining at the same time :neutral_face:

I sounds like you may have some lymph drainage backup resulting in continues swelling and thus irritation of the surrounding nerves and vascular structures. Finding a PT with lymph drainange skills or some other person who specializes in that type of treatment may be helpful. I have attached a couple of You Tube links below that are easily performed on your own but …

please use with caution- start slow, maybe only 5-10 times with each stroke (this is less than what is said on the videos!)

This will seem like you are doing nothing as the touch is ultra light but trust me it really can improve the flow and of the fluid in your lymph system which acts like the disposal system for all the garbage in our body. It can be done in a reclined or sitting position with awareness of good head posture, slow and easy rhythmic breathing. Start with once a day and increase as tolerated - STOP if your symptoms increase in any way.

Listen to your body
Hope this is helpful, hang in there - thinking of you :sparkles::purple_heart:

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Hi Sjlash,

Thank you for your response. I was thinking that the surgery was all for naught. It is a long journey - one that really can test one’s patience but it is good to know that the end of the tunnel is out there.
I’ll try my best to be positive and keep my “freak outs” to a minimum.

I wish you all the best on your upcoming surgery. I will be praying for you. Please let us know how it goes.

Peace,

BG

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Hi JustBreathe,

I remember following this exact same video last year before my diagnosis. I don’t remember it helping but I will try again. It makes sense. Thank you for your input. I hope you are well.

Peace,
BG

BG,

Just an after thought…it might be best to try on the surgical side first if you have vascular involvement on the other side (which may not flow as well for structural purposes until those are addressed).

Good luck, let me know if it is helpful! Cheers :sunflower:

@sjlash,

Will be thinking of you and sending prayers for you and your surgical team Monday! Thank you for being a supportive voice of wisdom given your experience so far. Hope this second time around is ultra smooth :purple_heart::sparkles:

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Feel free to vent on here, we understand how frustrating this process is! One step forwards, 2 back…I’m sure you’ve read Sewmomma’s posts; her issues are different but the ups, downs & fears are the same. So please try to not doubt the success of your surgery, & as sjlash puts it so well, you’re on a long journey & still have a way to go…sending you a gentle hug, thinking of you & praying for you…

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Hi BG,

I’d like to offer another massage suggestion but this is for the numb part of your face. I have a friend who is getting certified in a therapy that works on stimulating cranial nerves that are not fully functional. I still have some numbness in my face (along jaw line) 4 years post op. It doesn’t bother me at all, but my friend wants me to work at waking the nerves up using gentle massage BUT NOT with my hand. She says using different textures like a soft washcloth, a soft toothbrush, a Q-tip, & even something like the blunt end of a toothpick (the flat kind that is pointy on one end & more rounded on the other) to gently stroke or massage or poke the numb area is the most effective way to stimulate sleepy nerves. You can do this several times per day w/ 3-4 passes using each item. Honestly, I haven’t started trying it yet, but her reasoning & argument for this approach is scientific & makes sense to me.

Take courage, dear friend, you will get through this & once your remaining styloid is gone full recovery will be in your future.

I’ll pray for you to be encouraged by seeing healing progress as this week continues.

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Hi! How is your smile looking these days?

Hi SewMomma,
My lip is slooooooly getting better. It is best in the morning, though still not normal. How are you doing?! Are you seeing relief? Sending hugs.
BG

Hi Isaiah,
Thanks for your input. The chin/jaw line is coming back but the “tingles” are painful when rubbed. I tried a washcloth and it was almost too much to bear, but I will keep at it and try other textures. Directly above my incision has no feeling at all.

My flair ups are crazy. I so appreciate everyone’s encouragement, but last night felt like I was back to square one with my severe symptoms similar to
before surgery. Inflammation seems to come out of nowhere - with inflammation in my sinus cavity (no mucus), pressure in my ears and dizzy, tightness in my neck… Thankfully, I feel somewhat better this morning but that is my pattern. It was always worse at night.

The remaining elongated styloid is longer then the one removed, but really wasn’t that painful until two months before my surgery. Maybe it was the silent stalker causing these problems. I had the left removed first because it was the one that seemed to cause additional issues (besides the poking and throat related symptoms) - cheek, tooth, and ear pain. The cheek and tooth pain are mostly gone - yay! . I think the the ear pain I feel is related to the surgery and that is subsiding.

Most doctors are skeptical. Even Dr. C. said that there was no guarantee. I now have this all in my head.

How were your symptoms after your first surgery? Were any relieved? Can hardening scar tissue cause some symptoms?

I am sorry to be so negative. I am trying to take one day - one step at time. Its just so frustrating to go backwards.
BG

Hi BG ~

I definitely had many steps backward during recovery. There were days I felt just like you do now. I jumped back into exercising 2 weeks post op which definitely caused more inflammation & slowed recovery. It was a solid 2 months post op before I started feeling sort of normal again, & it was at 2 months post op I noticed my normal energy level return.

I had bilateral ES & the second side was definitely the one that caused the bulk of my pain & symptoms. The first side removed was doctor’s choice because of its angle. I begged for the longer more painful side to come out first but in the end, his decision was best. I have no doubt that your current struggles may be largely coming from your remaining styloid. It’s uncanny how symptoms from the remaining side can flare & take over once one styloid is removed. Symptoms can even cross-over to the “fixed” side.

Your pain & other issues are likely worse at night because you’ve been up & active (even if just moderately) during the day. Your body reacts w/ inflammation both to gravity & activity. Your brain is still trying to protect your surgical site so it can heal thus it creates that little protective cushion of swelling in that area. Our bodies suffer inflammation on a regular basis as there is nothing we do in a day that doesn’t require some sort of repair, BUT our bodies are made to take care of themselves that way. Unfortunately, w/ any type of inflammation often comes pain, numbness, tingling, etc. These are the warning signs that we need to back off a bit & rest & take care of ourselves. Don’t face your symptoms fearfully but as signs of your body at work repairing on the surgical side & as an alert that something needs to still be dealt w/ on the side w/ the remaining styloid.

No doctor will guarantee results w/ any surgery, but most will offer hope of a cure or at least reduction in symptoms. Dr. Cognetti, from what I’ve heard, is not the most encouraging post op. Instead of counseling patients to be patient & allow some months for healing, he is dismissive of continuing post op issues & proffers that they either aren’t related to ES or that you’re stuck w/ them. I don’t feel this is good professional advice & comes from a place of his lack of understanding of the magnitude of pain & diversity symptoms ES can cause. There is a HUGE body of experience on this forum that shows we each heal at a different pace; that patience w/ the healing process & time must become our best friends post op; and that over the course of 6-12+ months, you will notice your symptoms gradually disappearing. That said, as long as you still have a symptomatic, elongated styloid in place, your symptoms reduction from operation #1 may be minimal.

Dr. C actually told one patient w/ bilateral ES that since her symptoms didn’t resolve after the first surgery, he was reluctant to do a second one. I told her to insist that she wanted the second surgery anyway. She did so & is now about a year post op from both & doing great. As you’ve read here, we often have to be our own advocates, sometimes even w/ experienced ES surgeons. Remember, they’ve never experienced the pain, etc, of ES. They only know the way to produce a “cure”.

The end of my story is this: I had my first ES surgery in 11/14 & the second in 8/15. My major ES symptoms are gone. I did suffer a little permanent nerve damage to my glossopharyngeal nerve (tongue isn’t perfect) & trigeminal nerve (permanent first bite syndrome); I have a little facial numbness along my jawline on the left side. These are problems I willingly & happily live with because they don’t affect my overall ability to function & enjoy my life. I’m very physically active & am so thankful that I’m able to do what I love w/o the debilitating symptoms ES caused. It took me a little over a year after each surgery to feel like my nerves & pain were as completely healed as they would be but by 6-9 months post op, most everything was pretty settled down & feeling better.

I hope this info encourages you, BG. You will get better. The steps backwards always feel :-1::-1:, but they are usually followed by improvements. Look for the little positive changes each day. There is always something, however small, that is likely to be even a tiny bit better as time progresses.

I am still praying for your healing progress & a good frame of mind.

:hugs::rose:

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Isaiah,
I am so very grateful for your input, encouragement and kindness. Thank you for sharing your story. I will think of your words when progress seems discouraging and when I see small positive steps.
Best,
BG

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Slow and steady wins the race. That’s the only option in this recovery apparently :woozy_face:

Good job, BrooklynGirl! You WILL get through this. It’s a rocky road but gives way to a smooth path eventually.

:blush:

Hi, @BrooklynGirl. I just wanted to share the photo of my lump just above my incision taken about 3 weeks after surgery. My surgeon recommended that I take some aloe or vitamin E oil and massage from my jawline downward to the incision, then push the fluid around the incision and down. He said that the lymph passageways are cut during surgery, causing a “road block” and will grow back by about 6 weeks (they did). I only had to do the “massage” a few times and it was better. Is this what your incision area looks like? Hang in there💜

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I can’t remember exactly what vascular issues you had, which vessels were affected, but although the pressure of the styloid one side has been removed, it can still take time for the vessel to spring back if it’s been compressed for a while. Plus add in the effects of the other side… I did feel the benefits of surgery quite early on & the really scary vascular symptoms went within a week, but I was still left with some. I had a drain put in, so ended up with very little swelling, so bear in mind different surgical techniques can leave you with more than that, so it will take longer for issues to subside.
Hang on on to those symptoms which have gone & try to keep the hope that others have been through this & come out the other end- not perfect, but much improved…:gift_heart::bouquet::rainbow:

WOW, redbird773! You did have some major localized swelling! Funny thing - mine went up & I had a half-sided double chin for a few weeks but little swelling around my incision. It looked very odd. So glad you’ve come so far in your recovery.

Thank you for sharing your picture. This post will be helpful for BG.

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Everyone hang in there. This is a tortoise win, slow. Today I am 4 months out of the surgery on the right side and 10 months on the left side.
I expect that most of you will be great by then.
I am about over my mouth issues and definitely over the eyelid paralysis and then some. My eye pressures are down. I no longer have a floppy eyelid diagnosed 2 years ago Yes, Eagles caused that.
My left side may have some ongoing issues of trigeminal neuralgia, but that is the side with the worst jaw problems. I will address that later.
My face gets tired in the evening. My shoulders are weak from years of neck muscle tightness. I can use them without so much pain . I was able to sew at a machine for the first time in 8 years.
Those lymph node drainage techniques are the same areas that I massage. I may be too aggressive, but I feel better after and I believe I am getting better over time. Now I am not counting the days or weeks. I am human again.
I am not always thrilled with the tightness and ups and downs, but the eyes and shoulders and neck are working. I wish that I did not need a bite guard, but I can sleep lying down, sleep longer and

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