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Eagle Syndrome - Online Support Group

Day 18 post surgery


#1

Hi all,

Im Daphne. New to the group. This has been a long road for me these past two years. Caught a flesh eating parasite from a vacation trip to Barbados, that took doctors 18 months to diagnose. In the interrim, my body went haywire and started calcifying in response to the infection being untreated. I finally have some resolution of symptoms after having L sided styloidectomy and removal of my stylohyoid ligament and a bit of my styloid (external approach) . Honestly after such a long time of feeling ill, I had the hopes of jumping off the operating table symptom free. Obviously not the case (should know better as I am a physical therapist myself). Luckily I havent had crazy amounts of pain in the incision, just a bit of sore ness and muscle spasming along the front of my neck, traps and deltoid with some spasming and numbness into my fingers. The one thing that has me really concerned is the fact the that my calcification was so much that they may have stretched my nerve under my jaw too much. Jawline is still numb and the muscles of my chin that depress my lower lip feel heavy. I feel like talking is tough and when I laugh my bottom lip gets caught. My smile, jaw opening and resting lip position look much better than day one after surgery. How long did it take for those of you that had some lip affect for these nerves to start feeling/working normally again?

Another issue that I had prior to surgery was that I developed some inflammation of the optic nerve because of incr pressure in my head. Diagnosed with intracranial hypertension. I havent been able to do cardio or strenuous exercise in so long because I would feel the pounding on the L side of my head and face. Lost vision in my left eye (similar to optic neuritis) last february. I am going to see my neuroopthmolgist and a neurologist this week. Since surgery I have been having really bad headaches with burning sensation in the top and back of my head. Feel groggy and brain fogged. Anyone else have these?

Honestly just dont feel like myself, fatigued and generally malaise. Upper Body is achy and acting off. Seeing my surgeon on Wednesday for second followup.

Eagerly praying and waiting for the light at the end of the tunnel.

Would really appreciate anyone’s experience, advice or insight. Hope to hear from you :slight_smile:


#2

Hi Mariposa! Welcome! We’re glad you’re here! There are lots of knowledgeable people on here for sure. I’m a baby at all this but had a right sided styloidectomy (my first) January 10th. I still have a “pouch” around the incision and absolutely no feeling anywhere around that area. My biggest thing is my tongue deviates to the right (less than it did day of surgery though) and I talk with a lisp. Seems my swelling is hanging out a bit. I go tomorrow for follow up so I’ll check in under the “Thankful for you all” thread and let you know what he says about swelling, nerves, etc. Are you eating ok? Sleeping? Mental health ok? I felt pretty out of it for about 15 days then 16, 17 and 18 I felt a little better. I’m at day 25 now and can move around pretty well but my speech and constant effort not to choke on food are definitely with me all day.


#3

Mariposa85,

I am one month out today I and day 18 was actually one of my worst! If you read my journey and surgery, you will see I put a week by week status of recovery. As I am pretty new to this as well, the only thing I feel I can really comment on is the vision issue. I did not go into this on in my story as it is hard to know if it my vision was related to Eagles or something else. Here nor there, check to see if your neuro is in this system: https://noravisionrehab.org/

I can not tell you how much this type of eye care has helped my vision.


#4

Thanks SewMomma for your response. I feel lopsided honestly. I’m able to eat ok with swallowing more difficult with harder things. I feel like my L side of my lower throat is swollen and puffy. Nerves are wonky. Get a sudden stabbing in the lower part of the jaw and heat in my ear. Sleeping is so hard as I am used to sleeping on the L side. Wake up with such a sore neck. Mental health wise: I feel loopy and unfocused. Had some dizziness yesterday but not sure if its my vision getting better and readjusting. I will definitely be checking your thread and see how you are doing! Praying for you! :slight_smile:


#5

Hi sjlash, Thank you for your response. I would love to read your journey, can you please direct me to your thread? What vision issues did you have?


#6

If you go to latest, it is called my eagles journey and surgery. From Saturday, so very recent.

My vision issues were related to balance, depth and feeling completely off. I was given prism glasses as well as colored therapy glasses. Helped with vertigo & dizziness as well. It is all passive therapy, so painless but truly made me feel so much better. Not sure if caused from neurontin making my eyes twitch so bad or concussions as a teen!


#7

I just read through your story. Its incredible how long it takes for diagnosis of this issue. I saw your pictures and the size of the calcification is astounding. I am hoping to have get a picture of my resection. As per the surgeon last time, it was the most calcification he had ever seen. You look like you are doing great. With God’s help we will all heal up together.


#8

Thank you!


#9

Dr Yosef Krespi out of the Head and Neck Institute did my surgery. Checked this page prior to surgery and he is on it.


#10

So it’s been since March 19 th 2018 and July 11 2018!has left and right side done styloidectomy from dr Samji face and hand are numb cut still just healing from post op in July it’s no easy run and who’s to know if any of these horrible symptoms will ever go away at least the styloids can’t poke me or choke me out anymore and no more waking up unconscious on the ground face down and of in the water face down like it was happening almost drowned more than a dozen times because of eagles syndrome so it’s going to take a long time if ever to get better take the good with the bad and mix them together and you’ll get semi ok that’s what I can offer eagles syndrome is no joke and the worst thing I’ve ever gone though and I just got over a double broken neck so yeah life goes on pray and praise the lord Jesus for everything and every day above ground amen god bless you all and al with eagle syndrome there is life after eagle syndrome amen the big island buzzzy brosurfer buzzeagles freedom


#11

My name is lance Rittenhouse and god bless you and your fight don’t give up aloha buzzzy brosurfer


#12

Thank you for your response and your thoughts. Hope you feel better soon and have a speedy recovery


#13

I had surgery on my right side 3 years ago and have my left side next week. I had the exact same facial nerve experience and even had to open the right side of my mouth by hand to eat for awhile. That went away after a month and I could mostly feel my jaw in 3 or 4 months. It was definitely worth it.


#14

Thanks Groot for the reassurance, so weird to feel my lower lip and mouth get caught while I am trying to laugh. Even my puckering is wonky. Good Luck on your upcoming surgery.


#15

I feel ya, I can’t make the “mwah” sound when I blow my daughter a kiss. :crazy_face: Telling myself it’ll all resolve!


#16

Hi mariposa85,

What an “adventure” you’ve had! I’m sure the experience w/ the flesh eating parasite was no fun. I hope you’re fully recovered from that unfortunate event. I’m sorry you had ES symptoms to deal with at the same time.

As bad as ES incisions look after surgery, they are usually minimally painful. The pain & other post op symptoms come from having a surgeon delicately digging around in our necks for 60-120 min. Even with the care they provide during this process, the already irritated nerves & perhaps some new ones often get (more) irritated. Muscles & ligaments are moved out of the way & become irritated, etc. Your lip & other post op pain is evidence of this. A post op lip droop (lower lip) is not uncommon after ES surgery & usually subsides (as you’ve read in other posts above) within a few weeks to as long as a year post op. Facial & neck numbness are also common & usually resolve over the course of the first year after surgery. Nerves are slow to heal. They let us know when they’re trying to heal by causing pain that ranges from “Hmmm…that didn’t hurt yesterday” to really painful “lightning bolt” zaps that radiate from the source. Nerve healing is slow & obviously can be very painful. There are medications that can be Rxed to help you through the worst of the nerve recovery - Gabapentin, Neurontin, & Amitriptyline are three common ones.

You’re the 3rd person in the last year who’s had somewhat serious ocular issues potentially related to ES. Obviously, we hope (& I’ll pray) that your optic nerve recovers completely & your vision gets back to normal. That must be a very challenging problem to deal with. I had extreme pressure behind my left eye (felt like my eyeball was being pushed out from behind) as one of my ES symptoms. It did leave w/ my styloid, thankfully.

I’m glad you’re seeing your surgeon for follow-up soon. I’m not a doctor but here are some thoughts on the post op brain fog, burning scalp & headaches based on my experience & that of others who’ve posted here: If you had severe intracranial hypertension (which you suggested affected your optic nerve) before your surgery, there could have been some nerve/vascular damage from that. Just as w/ the nerves, it takes time for the vascular tissues that have been irritated/compressed to get back to normal. These symptoms could be your body working at opening those neural & vascular pathways again. Being a PT you know that injury causes inflammation which is the body’s way of creating a protective cushion around the injured area so it can heal. Inflammation causes pressure which in turn temporarily increases symptoms. When our bodies/brains are working hard to heal, we do feel more tired mentally & physically because our brains/bodies are putting their energy into repairing us rather than into trying to maintain a busy daily routine. God made our bodies to heal themselves but often the cost for that is having to lay low for awhile.

I also had the tongue issue that SewMomma & gbr experienced. It took 9 months after surgery before I could talk & eat normally & by a year, my tongue was back to about 90% of normal. There it has remained but I can live with that! I had facial numbness on the left side that is only now beginning to fully resolve & I’m 4.5 years out from my surgery. ES surgical recovery, as I often say, is a game of patience. It’s 3 steps forward & 2 steps back some days but the net result is forward progress toward healing. It was at the 2 month post op mark after my first ES surgery that I finally began feeling like my “old self” again. By 6 months there were many more improvements.

Finally, sleeping w/ your head very elevated should help a lot. Some surgeons recommend 30º of elevation which feels nearly like sleeping sitting up. I used a wedge pillow from Bed Bath & Beyond w/ other bed pillows stacked on top of it. I found I couldn’t sleep comfortably lying flat for close to 2 months after my first surgery. If you aren’t sleeping w/ your head elevated, please try it.

I hope you feel encouraged by reading that recovery from symptoms just takes time. It can be a painful & frustrating process. Look for the improvements you’ll begin to see day by day. Keep a journal & note anything positive. A good frame of mind helps with healing.

Please let us know what your surgeon says at your follow-up. We’re always here for you.

:blush:


#17

Sounds a if you’ve been through a pretty terrible ordeal…so because of all the inflammation it could take you longer to heal than others, I guess. Like Isaiah says members have seen improvements even a year after surgery, so it can be a long job!
Have you got problems with your other side? That can affect recovery, especially from dome of the vascular problems. I had bilateral jugular compression & some IH symptoms, but thankfully nothing like as severe as yours. I felt alot better once the swelling went down, but still had some vascular symptoms until the 2nd side was done. If the veins were compressed alot it can take a while for them to spring back too, some members have had stents put in.
I hope that your nerves do heal, & that you start to see improvements soon. Keep strong!


#18

I surely hope so. I can almost pucker straight. Today I woke up and it was a little easier to pucker and protract my jaw without deviation to brush my teeth. Maybe a turn for the better!!! :pray:


#19

Hi Jules, thanks so much for your input. Yeah, as per my first followup with the doctor my other side is calcified too. Will ask him how much tomorrow at my followup. Seems like the IH is getting better. Was able to see one more line on the vision test 20/25 instead of 20/30 from last time. Which is so much better from 20/200 which is what it was at its worst. Visual fields were perfect, pressure went down in both eyes. Only thing remaining is the nerve damage, which I am hoping gets better by the next time I see the neuroopthmologist. What were your IH symptoms? Dis they clear completely after you had both side removed?


#20

I will definitely let you know. My appointment is tomorrow. My other side is starting to feel weird and definitely would want to get that attended to before it gets as bad as this one was. Thank you so much for the kind words of encouragement. They mean so much to me.