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Eagle Syndrome - Online Support Group

My Post Op Update


#1

Monday will mark three weeks post op. Leading up to surgery we were hungry for post op info so we’d know what was coming. It seems there’s much more lead-up discussion than after-the-fact, and now I understand why. There are too many unknowns at this stage of the healing.
Immediately after surgery all my signs and symptoms were gone, and none of my triggers brought them on. About day three some of them started coming back. This was very upsetting and discouraging since there have been so many false starts and wrong diagnoses over the past 8 years. Factor in that the only real way to diagnose Eagle’s is to remove the styloid and wait for improvement. Also I don’t do well with oral prednisone so I couldn’t do a whole lot to keep all the swelling down.
I’m hoping the time immediately after surgery is a good predictor of eventual outcome. I’m also hoping that since my signs and symptoms have changed, mostly for the better, that it’s proof we had the correct approach and removing the styloid was necessary.
The good—no more pressure behind my right eye or ‘ram’s horn’ pain around my ear. MUCH improvement with the tinnitus. Nausea is gone. The constant ‘pushing’ right side of my stomach is rare now. My hand doesn’t turn blue anymore. Mornings are much better with a decrease in pain. No more ‘tugging’ behind my ear when I turn my head. Less rhinorrhea.
The bad-- 6 days post op (first day home) was the worst for me. Vision got really blurry, surgery site was painful. Swallowing hurt. Lying upright at night I could feel the pressure form a searing pressure in my right ear. (I stopped percocet soon as I got home).
Steri-strips lasted two weeks, good because that’s when I could start with the Mederma–quickly learned not to immediately put an ice pack on after freshly applied Mederma (it just sort of curled up, like when you put Elmer’s glue on your skin) Scar now hardly hurts unless I touch it, and it looks GREAT. Dr. Samji did nice work. I had a little TMJ pain but fortunately no ‘first bite’ syndrome. Some slight weakness to the corner of my mouth, not really noticeable unless you’re looking for it.
My uvula has been deviated to the left (it deviates away from an impinged vagus or glossopharyngeal nerve) and right now it’s straight. More evidence we had an accurate diagnosis and treatment.
I can’t tell you what a deep comfort it has been to have the kind of support found here—you know who you are! To hear I’m expecting too much too soon, and that this is the common healing pattern, has been exactly what I needed to hear. My family really wants me to sit still and do less but I need to move. Trying to balance healing time and the realities of living, and being a wife and mother.
Finances—we paid cash for this. Our provider wanted my to go to a local surgeon (“He’s really good!”) "OK, how many styloidectomies has he done? "“Well…not sure but he’s a good surgeon” "Does he do EMG throughout? “We don’t know that either”…No thanks. I’ll go directly to the guy who does the revisions after other surgeons try. Mine was a difficult case. I’ll have plenty to say to the review board when I appeal and try to recover some of the cost, but it really was affordable and glad I did it even if we can’t.
We are halfway to the six week post-op with Dr. Samji. Hope to have more improvement to report by then


#2

Thanks for the update and good luck with your continued healing. I’m scheduled to have a phone consult with Dr Samji on the 24th and am looking forward to a possible solution to my long time suffering. I’m also hoping my insurance will pay for it. I’ll say prayers for you and all the others on this site with ES.


#3

Thank you for posting details of your recovery, I’m sure it’ll be helpful to others to have realistic expectations…
I am so glad that you are seeing improvements, even if there’s a few steps backwards after the first few days. I’m glad that you made the decisions to see Dr Samji instead of a local surgeon, & really hope that you do get money back from your insurance company.
There are some post-op updates from people, but the more stories on here the better. It is difficult for members to know what to post too when things aren’t as good as expected, as it could put others off surgery, but a balanced view is important. Unfortunately some post negative experiences, but never come back months later when they have significant improvements!
But I’m really glad that yours is an honest post, & am praying that you will continue to heal & see more improvements. God Bless! :bouquet: :hugs:


#4

When you say yours was a difficult case Julianeagle…what do you mean?


#5

When Dr. Samji saw the imaging, he said that of the three presentations for ES mine was in the most difficult group. My styloid took a sharp turn forward and the glossopharyngeal nerve was tangled up in it and the external carotid was stuck behind it. He was able to get it all, along with the attached structures, but he had to break it into little pieces and fish them all out


#6

Glad to hear you are doing so good!! That is great! I’m still wondering if they got mine done right and this tissue issue might be part of after surgery of 3 years bone poking it – or they didn’t get it right!
All I know is it takes time from what everyone said. Let me know if you are out of pain in another 2 months. Then I’ll know. Thanks!


#8

OK so week 4 update. Still some pain where the surgery was but not too bad. I spend maybe half my day with an ice pack and I take about 0-2 200mg Motrin a day. It definitely hurts more if I push too hard.
While I wish my vision would clear up permanently so I could safely drive again, I have to say it wasn’t my worst pre-operation symptom. On ‘bad’ days, which were becoming more and more frequent, I would have these episodes where I felt…‘flat’. I couldn’t find words. Looking back, I really think I was having transient ischemic attacks. I couldn’t come up with the right words, words were a real struggle for me. Even lying on the floor, It felt like I was going under, like the floor was swallowing me up. I was never able to prove lack of bloodflow to my brain but I know that was what was happening. That was by far my worst symptom and it hasn’t happened since the surgery, so I’m at the point now I can positively say it was worth it–and that’s what I was searching for on this site before, and asking my Doctors’ opinions—Will this make me better? Could it make me worse? (One doctor was very insistent it would. Thank God we were able to filter his opinion out)
So I still have blurry vision, but it’s different now, more both sides. I still get a ‘pushing’ sensation in my right lower abdomen. A little bit of the runny nose but not as much as before. I can’t open my mouth all the way and there’s some stiffness in my TMJ but NO ‘first bite syndrome’. Hoping once the swelling all goes down those things resolve too.


#9

julianeagle - So glad to read your update, julianeagle (I still look back at your eagle pic often because it makes me smile!). You’re doing all the right things. Expect full healing always remembering that nerves are very slow to get back “on line”. My tongue took 9 months to recover from right-sided paralysis after my first surgery, but it did eventually get back to working properly.
I continue to pray for you!

:two_hearts:


#10

didixon - Just a comment to your comment about julianeagle (or anyone being completely out of pain 4-5 months after surgery) - some people have immediate, profound relief from symptoms, for others it is more gradual & “sneaky” i.e. pain lessens very gradually till one day it’s gone. This can take a year or more though. When you’re in the thick of recovery, the thought of it taking a year can be excruciating but on the positive side at least recovery occurs regardless of the time frame.

I’m hoping that you’re body is just taking the slow road & that what you’re feeling will disappear in the months ahead.


#11

Good news that you feel it was worth it, & hope that your vision improves soon also. Keep healing! :hugs:


#12

Week 5 update. Vision is still too blurry to drive, but it’s very positional. Last night was date night and I ate a big meal, which used to always trigger everything, but last night my vision stayed clear-- I didn’t have to pay the price for eating! Right TMJ is a little sore as is the surgery site. I take one 200 mg motrin every other day or so and ice still feels great. It’s wonderful to be freed from the cognitive issues.
For years my right hand, the same one that would turn blue, was very scaly. I tried everything, and even slept with a vaseline lined glove to no avail. I never thought it had anything to do with my other problems but was just from cleaning house and wiping counters. Compared to my other complaints a scaly hand was pretty minor, but–look at my hand now! It looks brand new!


#13

That’s amazing! Scaly hand is a new symptom, not heard of that one before! Presumably now the circulation to it is improving the skin’s better too! Hope that your blurred vision improves soon… :bouquet:


#14

That is amazing - who would have thought that was from ES??? So glad you got rid of that wacky symptom! That reminds me about something odd though…not sure if it is one of my symptoms or something else but my hands get warm and really RED every so often out of the blue! It usually only lasts for a couple of minutes and then it’s gone as suddenly as it came!


#15

I’m not certain what the connection is between the poor hand circulation and Eagle’s, but I know they treat Raynaud’s with a stellate ganglion block, and the way you confirm correct location for the SG block is the hand on that side gets warm and flushed. Also, repeated stellate ganglion blocks are an option for treating Eagle’s Syndrome when surgery isn’t an option. The blocks gave me complete but brief relief and things were worse afterward, but there must be some part of the sympathetic trunk getting compressed that causes this, and blocking the stellate ganglion temporarily interrupts the ratty signals


#16

THAT IS TOTALLY AWESOME!!! I’m so glad you’re seeing these dramatic changes. Also good to hear you were able to fully (pun intended) enjoy your date night!!

:raised_hands:


#17

Week 6. I pride myself in NEVER getting sick–everyone else around me can get colds and the flu but I’m usually lucky. Not this time—I picked up my daughter’s summer cold so it’s kind of hard to judge progress. I’m sure post op immunity is somewhat compromised. All the typical cold symptoms and it really feels like everything they operated on is a little more swollen BUT—even with this, no trouble thinking. I don’t feel like I’m having trouble keeping blood to my brain anymore so in perspective a cold is a very minor inconvenience.
Earlier this week I saw the functional neurologist from Scripps. He, more than anyone else, helped guide me to a diagnosis, got the imaging we needed, ordered all the non surgical options to exhaust before going for surgery. It was our first post op meeting—he was thrilled. He could tell everything was opened up, my neck was lax; whenever he would touch my neck there were constant spasms before , he said they were no longer there. My cranial nerves no longer had deficits ( he ran me through all the cranial nerve function tests). He mirrored what Dr. Samji said about some slight hypoglossal weakness, and said I’m still in the very early stages of recovery—but the transformation is dramatic. Others have commented how bright I look, which is how I feel.
He also said he’s going to send a report to the entire care team, all the physicians in the network I’ve seen. Unprompted he said he would write a very diplomatic note to the pain specialist–the doctor who admonished my husband in person and in writing about his ‘obsession with an exotic disease’. I couldn’t think of a good way to address this so am very appreciative the functional neurologist will bring it up with him instead.
Still some blurred vision, and my hand has discolored again a little but not nearly as bad as before. The scar is healing nicely. No first bite syndrome though my TMJ hurts when I start eating, or if I yawn. I brought up the blurred vision with the functional neurologist and he says just wait, give things more time, there’s still a lot of swelling and healing going on.


#18

Your incision looks GREAT! I’m sorry some of your old symptoms are still coming & going, but I second what your functional neurologist said - you’re still in early healing. You’ll have a more complete picture of your recovery in 6 months to a year. So glad he’s “going to bat” for you with the skeptical doctor as well. What a guy!!


#19

I’m so pleased for you that things are going well (apart from the summer cold; I think any virus you get seems to affect ‘weak’ areas in your body, I notice that myself, so could easily upset healing & cause a little inflammation again.), & glad that your neurologist will share his findings with other more ignorant doctors!
Keep healing… :grinning:


#20

OMG julianeagle!!! Your scar looks great, wait - what scar? I can barely see it - awesome job by the doc. Too bad about the cold, but I bet you still feel better than before and will continue to do so. I am so encouraged by every success story I read here. Every time I get nervous and start thinking about just upping the pain meds, I get on here and read, read, read! Thanks so much for the update…I needed that! Can’t wait to be bright again!


#21

Week 7. I beat the cold but lost my voice just in time for the 6 week follow up with Dr. Samji, but my voice mostly returned just in time. We made a vacation out of it and went to Napa first.
If you are like me, you read EVERYTHING on this site, so these seemingly random thoughts are responses to some other posts.
—My TSH is, or was, high too, but my thyroid function is within normal limits. Someday I will get it re-checked. Maybe if a number of ‘Living WITHOUT Eagles’ people can show a drop in TSH levels post-op it will be evidence of a connection.
—Placebo effect— One of the most confounding things in medicine. It is real. Every clinician in the world has encountered malingering patients that love to be sick, too, and this makes caring for the truly sick difficult. A good clinician will listen about subjective symptoms, but look for correlating objective signs to decide which is which (NOTHING more frustrating than going to a doctor with a blue arm, ONE nostril gushing, and half my stomach pushing out, and hearing it’s all in my head) There are also made up disease processes and unscrupulous doctors that will gladly take your money and offer ‘cures’. So, read everything. When you come across a diagnosis that fits work really hard to prove you DON’T have that—a wrong diagnosis is worse than no diagnosis so be willing to get off the wrong path. When you can’t disprove a diagnosis go to someone who specializes in it–specialists won’t just be good at saying ‘yeah’ or ‘nay’, they are in a good position to offer a differential diagnosis.
Ten hour drive for a ten minute meeting. Kimberly was very upbeat and thrilled with my recovery. Dr. Samji said I will continue to recover, nerves are slow to heal. He also said that after 12 months that will be about as good as the results get, though some people continue to improve. He asked me what I want to do about the left side (also elongated). I told him it isn’t bothering me and he said most of his Eagle’s patients only need one side done and have to be careful–after terrific results from the first one, you can’t blame every complaint you have on Eagle’s Syndrome. Good advice. He asked me to keep in touch, too. In a way since everything is great I wondered if the trip was a waste of time, but there are things only a surgeon would notice that could be a problem, so the fact that everything was fine doesn’t mean this was unnecessary.
As far as my recovery goes, I’m starting to get some ‘electric shocks’ in the areas that were numb after the surgery which is probably a good sign the nerves are re-connecting. I still get blurry vision if I flex my head down too long but it seems to resolve quickly. The swelling is all but gone and I still have some lumps under my scar (Dr. Samji removed a stitch that was sticking out).
I have gone from living in fear of having to fake it in public when I can’t balance or think straight, to hearing how bright and sharp I look again! I can’t describe the feeling of going to bed at night knowing I don’t have to be afraid of how I probably won’t be able to function the next morning. I’m probably going for a drive this week. My recovery happens to coincide with my last of three kids reaching adulthood so my elation of living without Eagle’s has softened the emotions of an empty nest, and this trip was a first for us in that we just went where we wanted, had no schedule, and didn’t have to rush home. I am truly blessed.