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Eagle Syndrome - Online Support Group

Upcoming surgery, 3 1/2 years since this began

@Gwendolyn - I AM SO SORRY about what happened to your dad. So glad his situation wasn’t worse!

I’ve had a couple of bad cycling accidents so know how painful the consequences can be. How fantastic that you’re able to be with him & help him. I imagine he’ll be in the hospital for a bit before going home. I hope they take the best possible care of him. :heart:

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Sorry to hear about your Dad, sounds nasty, hope that he recovers well. Take care of yourself as well as your dad, hugs to you…

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Qwen,
So sorry to hear about your father. When it rains it pours. I hope he recovers ok an you can take care of yourself. He is lucky to have such a good daughter!!
UW surgery was a horrible experience and they didn’t realize I was a former patient advocate and executive director of a health-based non-profit and a background as paralegal when they tried to blow me off. Given they have a banner across the front of the hospital rated #1 in Washington State by US Health & News, I wont stop hammering on them for what they did to me or what they have most likely done to others. No doubt other patients have experienced the same. Ive come to realize I broke my own rule of not having someone physically present at all times when at a hospital and after surgery. You must always have someone present to advocate for you or you are at risk of poor care. If you need an advocate, Id be happy to be there and watch them in action and make sure you get the proper care.
In teaching hospitals such as UW, there is high turnover and that does not help. Ive surveyed others who have had surgery in the Seattle area at other centers such as Swedish and Virginia Mason with mixed reviews. I, as well as my children have had excellent care at Evergreen Hospital in Kirkland. I am seeing a trend of poorer care overall in past 5 years. I think there has been so much focus on opioid epidemic that the pendulum has swung too far and patients in post-op care not getting proper pain management out of fear of DEA. This is especially true with women and gynecological issues. The PACU and ICU is not the place to start withholding pain medications.Just my opinion. Don’t get me going…

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Snapple - you are more than awesome! I am going to PM you about the investigation. I have not been able to sleep because of my dad. I just found out he did not go to the ER, some random Urgent Care Clinic. Hip fractures are so dangerous, he needs proper help even if he stops talking to me.

Back to me - I am going to talk to Dr. Futran’s head nurse tomorrow to determine exactly what my surgery will entail.

I had a wonderful meeting with my pain doctor. (She was unavailable last month because her 2 year old son had to have emergency surgery, which was quite complex. ) She will be assisting with peri operative care and instructions for medications with at least a 24 hour stay. Again I will PM you about that, probably in 2 days, after I speak to the nurse?

Hi Qwen, I understand about hip fractures. My mother died a few years ago from one. She went into surgery and never really came out of it at age 83. I don’t believe she got good medical care and was in Florida at the time. There is a big pre-story to that.
I was at UW Oral medicine yesterday for an appt I set up awhile ago. I showed them the CT scan report I had that confirms eagles. I got the impression the Cone Bean Tomo (they did in 2016) which I asked them to re-review 2 months ago which produced “segmented” calcifications on my styloid ligaments were considered not remarkable because they only measured the segment. They do admit to having knowledge about Eagles syndrome but the criteria to meet what they consider problematic misses the diagnosis? Either it was missed or dismissed 4 years ago and only brought to light when I requested a review. When I told him that Dr. Samji reviewed them and indicated I needed surgery, he didn’t have a whole lot to say. Its beyond my understanding that when a patient complains it feels like they have a bone in their throat and the pain originates from there, why it did not raise a flag when they have knowledge of Eagles?
I still haven’t figured out the whole PM thing on this blog but will. Look forward to hearing from you. I want to hear about your pain doc. Good luck with your dad.

To PM members, click on their icon, & a new tab will come up. you just click message, write the title & message, & then make sure you click on ‘reply privately’ at the end.

Thanks Jules!

An update for everyone:

I made another appointment to see Dr. Futran on Feb 12th. I have learned so much from here and have realized I have a million questions and concerns that only he can answer. I know he is an excellent surgeon :man_health_worker:, but I need to look out for myself.

To recap: (For your enjoyment, I have had fun with emojis)

I was scheduled to have a intraoral bilateral tonsillectomy and bilateral styloidectomy. :frowning::scream:

When I first met with him I was just so excited he believed me I just scheduled it. Since then, I brought in another CT scan that had a much better view of extensive calcification on my stylohyoid ligament.

I thought it might be helpful to post what my questions and concerns are so others can keep them in mind: :interrobang: :memo:

  1. Will he remove the stylohyoid ligament completely? :face_with_head_bandage:

Question if this ligament is attached at the tip of the styloid bone how could he NOT remove it? Would he reattach it if it wasn’t calcified somewhere else?

  1. I have severe misgivings about having both styloids removed at the same time, along with the tonsillectomy. Reading about the removal of just one styloid and the accompanying swelling in the throat- I want to be on the safe side and be able to breathe :face_with_raised_eyebrow: :frowning:

The tongue clamp also causes swelling. :tongue:

  1. I am pretty certain I did not give him a list of my main symptoms. Specifically, hyoid and resulting pain patterns from that.

  2. It appears from everyone’s knowledge here that nerves can not be monitored intraorally. Is there new technology? Dr. Futran mentioned there has been significant improvement for intraoral surgeries just in the past year, but I want more specifics. :brain:

  3. What is the post op plan? My pain doctor wants me to remain in the hospital for at least 24 hours - she would do that even if I only had my tonsils removed. She really doesn’t have a grasp of what a styloidectomy entails. I want zero confusion, a bed open there for me. :hospital:

  4. I am going to have thorough bloodwork done next Tuesday. I have been mostly bed bound for almost a year and have gained 20 pounds. I need to rule out things like pre diabetes and anything else. If I have any issues, he needs to know. :drop_of_blood:

  5. Not applicable to anyone but me:
    [I also have a bad TMJ injury from a fall. :tooth: Doh! It resulted in a big change in my bite (brought the mandible (lower jaw) forward. This past Monday I asked my jaw specialist to look at it again.

Results: My TMJ joint - the ball was moved forward mostly out of the socket and has not healed I can still open and close my mouth because it moved forward, not sideways. It will heal eventually by not chewing hard food, which I haven’t had in years. :joy:

So, keeping my jaw open during surgery: could it damage the joint further?]

Edit: Thank you for everyone asking about my dad after his bicycle accident. He has a pelvis fracture and 3 hip fractures :bone:. He had a checkup- he will not need surgery, he is at home resting. He should be able to start walking :walking_woman: on his own in 8 weeks. Hopefully he will be back to cycling in 3-4 months. :bike:

@Isaiah_40_31 @Snapple2020 @premedmom @Jules @Ladygw @onelessstyloid @Sukinsmudge

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A couple of points- if stylohyoid ligaments don’t need to be removed because there’s no calcification they are usually detached from the SP & left in, they don’t get re-attached anywhere. Obvs yours will need removing if they’re calcified though.
From my understanding nerves can be monitored outside, ie through clips on the face, so I wouldn’t think whether surgery is intraoral or external would make a difference to that (I had bruising on my face post surgery where the clips had been attached to monitor nerves). If anyone knows different feel free to chip in!
I think several members have had jaw problems post surgery so a good idea to raise those concerns.
Glad that your dad didn’t need surgery, & hope things go well for him.
Let us know how you get on!

Jules,

Thank you so much for answering my questions. I’ve been searching everywhere! What you said makes a lot of sense.

Another question: I am not certain, but when I looked at my stylohyoid ligament on the CT with my jaw specialist, he indicated that there was lots of calcification on the top half. I didn’t think to ask if the bottom half was calcified.

The surgeon wouldn’t just cut it in half and leave it there? I hope not, given all the nerves bundled around there.

Of course I will ask him :wink:.

Can you help me find the link to your surgery experience? I’ve seen bits and pieces, but if you have a particular thread, I would love to read it. (I am having trouble finding it with the search.)

Again, thank you!

Gwendolyn

Jules

    February 1

A couple of points- if stylohyoid ligaments don’t need to be removed because there’s no calcification they are usually detached from the SP & left in, they don’t get re-attached anywhere. Obvs yours will need removing if they’re calcified though.
I think several members have had jaw problems post surgery so a good idea to raise those concerns.
Glad that your dad didn’t need surgery, & hope things go well for him.
Let us know how you get on!

Hi Gwendolyn,
I have no experience to add to your question about whether surgery would increase your jaw pain but wanted to send my encouragement. You are asking good questions that are certainly appropriate to ask the surgeon. I did not have any breathing problems after my intraoral surgery, although it was only on one side. Hang in there!

Hi Gwendolyn!

Good & thoughtful questions. You are being thorough. That’s important, too. I’m glad Jules knew about external nerve monitoring as I did not. Makes sense though. I

I’m glad you’ll be asking how intraoral surgery has improved over the last few years. I think I mentioned we have one member who said both her styloids & ligaments were fully removed via intraoral surgery. I’ve done some searching but haven’t found that post. I think she posted in an ongoing thread (rather than starting her own) which makes locating it more challenging.

I’ve found my initial post-op post, that was weird re-reading it, I haven’t read it since I posted it! Here’s the link:


I mentioned in that discussion about the bruising, & someone suggested clamps to keep you still in surgery, but I asked about it before my 2nd surgery & was told it would have been the nerve monitors- one was above my eyebrow & the doctor said it was close to the ‘vein of sod’ as they called it, named because it was very easy to catch & bleeds a lot :joy:
As far as I’m aware the remaining ligament is just left, that’s the impression I got from my doctor. Doesn’t seem to have done me any harm! But obviously check that with your doctor, as they do all have different techniques.

Thank you! Going to read it now. I am going to try to post my days - I hope I can schedule the surgery soon after I see Dr Futran on the 12th. :heart:

Jules

    February 2

I’ve found my initial post-op post, that was weird re-reading it, I haven’t read it since I posted it! Here’s the link:

[Surgery Update!](https://www.livingwitheagle.org/t/surgery-update/805/27) [General](https://www.livingwitheagle.org/c/general)

On day four, I had to make a quick run out of town, and that was 110 miles rt. That’s as much driving as I wanted to do that day.

I mentioned in that discussion about the bruising, & someone suggested clamps to keep you still in surgery, but I asked about it before my 2nd surgery & was told it would have been the nerve monitors- one was above my eyebrow & the doctor said it was close to the ‘vein of sod’ as they called it, named because it was very easy to catch & bleeds a lot :joy:

As far as I’m aware the remaining ligament is just left, that’s the impression I got from my doctor. Doesn’t seem to have done me any harm! But obviously check that with your doctor, as they do all have different techniques.

Update:

I have been very ill for months now, so I have not been online very often.

I had slipped last week and got checked out at the ER. No fractures but several bad sprains.

I Saw Dr. Futran again about my surgery, however visit went off topic when he saw my eardrum was ruptured.

I had a trillion blood tests. Came back with “off the charts” high WBC count, Thyroid TSH is +6.30, very high platelet count, something called C Reactive that is 3x the highest normal level.

Basically fatigue has kept me from being online. I was put on a new antibiotic (my third), if I don’t see improvement by Sunday I am being referred to “infectious disease” :open_mouth:. I don’t even know what that means.

Anyhow, just wanted to let you all know I am still here, just sick. :heart:

That’s such a shame if your surgery has been put back again, but reassuring that they’re thorough & have perhaps picked up on an underlying condition…hope that things improve, thinking of you & sending you a hug…

WOW! I’m so sorry to read all this! An Infectious Disease Doctor specializes in rare or difficult to diagnose illnesses that could be contagious. Dr. Futran must suspect you picked up your illness from someplace i.e. it’s not autoimmune & thus considers it “infectious” at some level.

I hope this next round of antibiotics “kicks that bug to the curb” & you start feeling much better & can proceed w/ taking care of the other health challenges you have.

I’ll keep praying for your full recovery from EVERYTHING!

:hugs:

Gwendolyn, This sounds horrible! I am sending my best wishes for reduced inflammation and a quick recovery.

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Whoa. Gwen. with those kind of blood results, no doubt something going on in there. Major inflammatory process going on. Talk about a trifecta of issues to complicate your health. Hopefully an infectious disease specialist will be able to rule out what is and not happening. Sometimes infectious diseases can trigger autoimmune issues. A friend recently had “hand,foot, & mouth” which triggered hives and other skin problems that are still ongoing and have become chronic even though the infection resolved. Our bodies work in mysterious ways. Its not always the infection, its what our bodies does with it and how it fights the invader. Even after the original invader is gone.

Wish you my very best on getting this resolved. My heart goes out to you.

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I’m am so happy you are getting the surgery to help with your pain, I have had about the same process as you and just found out I have ES about two weeks ago :disappointed:, so I hope your surgery goes very good and your pain stops :slightly_smiling_face: