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Eagle Syndrome - Online Support Group

Surgery scheduled 22 Aug

Hi everyone. I am new to the site and really appreciate the information. I have been recently diagnosed with Eagle syndrome. 4.2 on left into pharyngeal space and 4.6 cm on right. I have a pre OP appointment on Tuesday and the surgery is scheduled for 22 Aug. The doctor was going to start with the right but in the weeks I have been waiting the left gives me more pain in the ear, numbing of the face and scalp and throat.
The doctor will perform it externally. I have stopped almost everything due to pain and dizziness. What a journey through a myriad of doctors…I was curious to know how fast/pace/speed can this styloid grow? Is it a jack and the beanstalk growth or over months, years?
I am nervous about the surgery but my pain level is so high I have lost me. I used to love zumba and hiking and now I feel wipedout if I can do a costco trip.
I pray this surgery heals me as the decline has left me with a poor quality of life. My mind feels like I am King Kong swatting all those irritating planes but they just keep coming. Craxy occipital pain, swollen scm on both sides and longus coli very angry with me. I am trying my best to stay in the sunshine but I will confess I wrote goodbye letters as many days I have felt I could not hang on. My son starts kindergarten on Wednesday and I want to be there for him in life.

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Hi susieq!
Great that you have a surgery date & that it’s not too long away, although I guess that for you it will still seem too long…It sounds like you’re finding things hard & vascular symptoms can be scary, I know (not sure if you’ve been diagnosed with vascular ES or not, but the symptoms sound like it)
No-one knows exactly how fast the styloids grow; certainly with younger people they can grow pretty quick! Or why you can suddenly get worse- that seems to be quite common, that ES can grumble along with annoying but not too bad symptoms, & then out of nowhere it worsens! Mine was sort of like that; the vascular symptoms started a year or more after I was diagnosed. There’s info on the possible causes in the Newbies Guide if you’re interested.
You can certainly talk about what side should be done first with your doctor- if you have vascular symptoms just one side that would be the one I’d get done first. There are nerve pain medications which can help if you have to wait, info in the Newbies Guide section.
Hopefully you’ve read through discussions & info on here about what to get ready & to expect? Recovery can take a while, so don’t panic if you don’t feel instantly better after surgery…will you have help afterwards with your son?
Hang in there, keep strong for your son, sounds like you’ve been doing that, so keep going, not too long now…hope he gets on well at kindergarten! And hope that your surgery goes well…will be praying for you.

Jules,

Thank you for your message. I will definitely speak to my doctor about your suggestions. How long was your recovery? Did you do both sides?
I am really excited about getting on with this as finding this diagnosis took over a year, 12 doctors and lots of red wine…
I’ll let you know how pre OP goes!!
Enjoy your week.
It is 111 here today.
Yikes!
SusieQ

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SusieQ -

So glad you found this site, lots of great information here. I just had my second surgery at Mayo in Scottsdale 3 weeks ago. My first was 1/17/19. Here is the link to my journey as well as my first surgery. Will update will my second soon.

I hope you find some valuable information here.

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@SusieQ

Welcome!

Your journey and symptoms sound similar to mine. My quality of life really suffered. I woke up one day with throat pain which began a year long odyssey to find answers. Not sure how long my elongated styloids were there or if the remaining one continues to grow.

For me the left side was always the worse but shorter, then one month before the surgery the right side reared up. (maybe still growing?) I still went ahead with the removal of the left side - now 2 months post op of external removal. The surgery went well. The incision itself is barely noticeable now but I am still dealing with some nerve pain but it is getting better!! Tylenol and ice packs was all I needed for pain relief. Ice packs were key. I bought two long and narrow gel packs that rotated in and out of the freezer and on my neck. Some of the symptoms were relieved on the left - the poking in my throat mostly, but I will have to have the right out to begin to truly put ES behind me.

Also, sleep propped up. It will help to keep the swelling down. I used pillows but some here used a travel neck pillow as well as bed pillows.

To do external surgery nerves need to be moved out of the way to get to the styloids and they may become a bit aggravated BUT understand that they will calm down and over time. Patience is key. Be gentle to yourself during recovery. I will be thinking of you and praying for a speedy recovery.

Best,
BG

@sjlash
How is your recovery going?
BG

@SusieQ,

So glad you found this site, it is loaded with wonderful support and very helpful information.
You have made it this far, not long now for the healing to begin. Hold on and keep smothering your little one with love as only you can- you are the best thing in his/her life! Sending prayers and all good for you, your family and surgical team on the 22nd and beyondđź’ś

Thank you BG. Have a beautiful week!
I will post after appointment.

I couldn’t drink; not supposed to on the painkillers I was on! So had to manage without :scream: And still don’t, realised that the vascular symptoms made me feel drunk, & hate that feeling if I have anything now! :joy:
I had both sides done, a year apart- partly due to UK waiting times! The recovery wasn’t as bad as I thought; 1st surgery I couldn’t open my mouth wide, or chew much so had smoothies & soft foods for a couple of weeks. I coukdn’t turn my head comfortably for a few weeks, so didn’t drive for 3 weeks. Overdid things & set back healing a couple of times because I didn’t feel too bad! I had a drain put in so didn’t have trouble with sweliing like lots of other members have. Didn’t have the problems eating or driving with the second surgery though!
Recovery does vary hugely though, depending on how the surgery is done, which nerves are affected by the styloids & irritated during surgery etc. A wedge pillow is a real help to keep you propped up, & I used a v shaped orthopaedic pillow as well. Stuff for smoothies is a good idea, ice packs & ice lollies too.
And surgery can sometimes aggravate the side left in, so be prepared for that!
On the plus side, if you’re having external surgery most doctors do the incision in a nack crease so there’s no visible scars.

Jules

Thank you for the information!. Mine will be external as well and I’m not sure how long I wait for the second one. I will ask tomorrow. I am so happy to hear you are feeling better. This site and the people have made me feel less anxious about the surgery.i will try to get a good wedge pillow! Great idea.
Cheers!
Susan

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Hi SusieQ -

Bed Bath & Beyond sells a variety of wedge pillows. Anything they sell will work. I piled bed pillows on top of my wedge pillow to make the angle steeper. I felt like I was sleeeping sitting up. That position took time to get used to as well.

:blush:

Hi SusieQ,

I am so glad you found this site and more importantly that you found an accurate diagnosis and a surgery appointment. I too was having a great deal of difficulty functioning before my surgery, and the procedure was something I will be enormously grateful for the rest of my life. In addition to the excellent advice you have already received from others I wanted to share the wisdom from others on this list that helped me the most after my surgery. I felt almost complete symptom relief immediately after the procedure but then a few weeks down the road I had a lot of waxing and waning symptoms that made me question whether the surgery had been successful. I am so grateful to others who shared that this was their experience also and that over time things evened out. So I will pay it forward and suggest that you too think of the post surgical period as a journey that might include a few bumps in the road before you reach your final destination. Best wishes for a great outcome and a wonderful kindergarten year also.

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I have this same swelling on both sides. Thank you for the explanation on this with my longus colli and scm. Also I have weird numbness in my face eye. I will surrender to God and have faith I am in his hands for healing. I will send you a picture of Garrett on his first day of kindergarten!

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He is my sweetie

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Brooklyn Girl and all.

I met with doctor and we switched sides to the left as it is giving more trouble then the right even though it is shorter.
BG, you are two months post op? Will you do the other side?
I am going to bed bath and beyond to get the wedge pillow tomorrow based in Isaiah’s advice.
My doctor said if I get relief from left side we will see how recovery goes but it could be 8 weeks to do the other side depending on healing. Does that sound about right?
Thanks to all!

I think usually doctors leave it 3 months, so I’d see how it goes…I’m UK, so with our waiting times it was a year :joy:

Hi SusieQ,
I did the shorter side first. On the remaining right side food gets stuck, my tongue and throat hurts and the top of my right eye hurts.

I will most likely need the second surgery, but I had some possible nerve related issues from the surgery. I want to wait to see what nerve issues remain after all of the swelling goes down from the first surgery before I decide when.

Start sleeping on your wedge pillow now so you get used to it.

BG

Hello everyone!

I went to bed bath and beyond today and secured the wedge pillow. I’m having a rough pain day today with scm on both sides of neck swollen, numbness on left side of face , throat pain and occiptal pain… other than this I am just peachy.
Surgery is 13 days away and I get excited, worried and then hoping this is my only issue. I worry they open me up and say oh boy… she is a wreck let’s just close her up…she has more than eagle she has a flock of seagulls in there.
I feel anxiety wanting to start a relationship with me and I am trying to stop this.
Thanks for listening.
SusieQ