New Member bilateral styloidectomy success story!

I am a new member to this support group, and I first want to thank all of you members who have posted so much helpful information on this site. It was a lifesaver for me as I searched for answers to my health issues and it was where I ultimately came to conclusion that Eagle Syndrome was definitely responsible for my many symptoms.

My journey with health issues began July 2014 when I fell at work and ended up with a huge contusion on my right knee. One week after my fall, I began feeling dizzy & off balance, and shortly after began severe vertigo. The vertigo got so bad I ended up in the ER. At the time it was a nightmare, but looking back it was blessing because in the ER they did a CT Angiography and I was diagnosed with Eagle Syndrome. When I asked about it, the doctor simply told me that my styloid process was longer than most peoples, but he didn’t seem too concerned.

The vertigo was attributed to an inner ear issue called BPPV (Benign paroxysmal positional vertigo) very common after a trauma like the fall I had, so I began treatment for BPPV. I saw my ENT (Dr. Scott Newman) and also Physical Therapy where they performed Epley Maneuvers (repositioning maneuvers) to correct the BPPV. Unfortunately, the Epley Maneuvers involved somewhat drastic neck movements which ultimately aggravated the styloid ligaments in my neck. After my last PT visit early December, I began having episodes of almost passing out and ended up in the ER yet another time. Dr. Newman ordered a carotid doppler where I would turn my head far left and far right to see if carotid artery was being impinged. The doppler did not show evidence of impingement, but my symptoms got worse.

Eagle Syndrome put a halt to my life and limited my daily activities so much. I had the typical neck pain, shoulder pain, ear pain & pressure, swallowing discomfort, choking sensation & headaches every day. But the most debilitating for me was that I could not turn my neck at all, or I would be on the verge of passing out. The slightest neck movement had to be avoided, so I could not take walks or drive or even be a passenger in a car. But I want to give hope to anyone out there who is suffering like I was....this can be fixed. You can have a normal life again.

That is when God made it clear to me what I needed to do. The Lord spoke to me in Nahum 1:12 when He said that He would “break the yoke from my neck and tear my shackles away”. I contacted Dr. Newman right away and was scheduled for surgery in 2 weeks (3-3-15) on Oahu. I had bilateral styloidectomy 5 weeks ago, where 4 cm of ligament were removed from my right and 6 cm from my left. The styloid ligaments were completely ossified (turned to bone). I literally had sticks in my neck! And the right ligament was laying across my internal carotid artery, which no doubt caused my many episodes of almost passing out and constant lightheadedness. Dr. Newman said I had styloid–carotid artery syndrome, or more commonly called the “vascular” type of Eagle Syndrome.

I do have some temporary left sided facial paralysis that is improving every day because he had to stretch my facial nerve out of the way to get to my hyoid bone (I had a face lift cut due to the concern with my carotid artery). At 5 weeks post-op, my smile has returned and my left eye is blinking about 75% (at first it wouldn’t close at all)....but I am told I will be 100% recovered shortly...Praise God!

So if you suffer from Eagle syndrome, do not hesitate to have the surgery. And if you are in Hawaii and have Kaiser insurance....see Dr. Scott Newman! He is awesome! I was the first patient with Kaiser anywhere in Hawaii to have had this type of surgery, and I thank Dr Newman from the bottom of my heart for his willingness to perform the surgery for me! And I thank God for removing the shackles from my neck & setting me free! All above mentioned symptoms are gone with the exception of some minor vertigo when I lie back in bed at night. But this is so minor compared to the major symptoms I had that prevented me from living. Now I can walk & drive & do yoga & enjoy life! Praise Him!

Isaiah 40:31 “those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

God bless all of my fellow Eagles Syndrome friends!

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Hi Maui Miracle!

Welcome to this site! As you can see, the Bible verse you ended with is my screen name. I love that verse! I chose it because of the eagle reference but being free of extra long styloids does renew our strength & enable us to soar on wings like eagles, run & not grow weary & walk & not faint.

I'm awaiting my second surgery (5/11) as my surgeon won't do bilateral ES surgery because of how significant the post op throat swelling can be. He feels doing the surgery twice is safer. I would have preferred to get everything taken care of at once but so it goes. I had expected a droopy smile after surgery. When I woke up post op my surgeon informed me my face would be fine but my tongue wouldn't be working very well as the nerve for the right side of my tongue was wrapped around my styloid & had to be stretched to partially remove it from the styloid so the styloid could be shortened.

We are indeed "fearfully & wonderfully made!"

I'll pray for you to heal quickly and praise God that you have had such amazing results already!

:)

1 Like

Good luck on your continued recovery.

Thanks for sharing your great news! It gives us hope! I'm waiting for my left side to be done, which is pressing on my jugular vein. Vascular ES is supposed to be really rare, but reading posts on here, I wonder if a lot more of us have vascular involvement which goes undiagnosed....

Would you be able to give heidemt or Christian22 the contact details for your surgeon to go on their doctors list? If you look back over previous discussions you'll find the latest spreadsheet posted. Heidemt is in Hawaii too.

Hope that you continue to heal well, and God Bless!

Wonderful!


I love your screen name Isaiah 40:31! Totally awesome!

I pray that your second surgery goes as well as the first, with no facial weakness and no more tongue issues. How's the tongue doing?

I understand your doctors concern about doing both sides at once, my doctor was hesitant as well. But he opted to do my right side first (most bothersome), and if all went well, to proceed to the left (which he did). I believe that we have to trust in God to guide each of our surgeons to what is right for us. Possibly by doing one side at a time God was protecting you from something bigger than you and I can see. Either way, one at a time or both at once, we will be free of our chains and soaring high like eagles! So happy to meet you! Blessings!
Isaiah 40:31 said:

Hi Maui Miracle!

Welcome to this site! As you can see, the Bible verse you ended with is my screen name. I love that verse! I chose it because of the eagle reference but being free of extra long styloids does renew our strength & enable us to soar on wings like eagles, run & not grow weary & walk & not faint.

I'm awaiting my second surgery (5/11) as my surgeon won't do bilateral ES surgery because of how significant the post op throat swelling can be. He feels doing the surgery twice is safer. I would have preferred to get everything taken care of at once but so it goes. I had expected a droopy smile after surgery. When I woke up post op my surgeon informed me my face would be fine but my tongue wouldn't be working very well as the nerve for the right side of my tongue was wrapped around my styloid & had to be stretched to partially remove it from the styloid so the styloid could be shortened.

We are indeed "fearfully & wonderfully made!"

I'll pray for you to heal quickly and praise God that you have had such amazing results already!

:)

Thank you Jules & Hurting for your prayers for my continued healing! So much appreciated!

And yes, I will definitely forward my ENT surgeons info so others can contact him! Mahalo! (That's "thank you" in Hawaiian!)



Jules said:

Thanks for sharing your great news! It gives us hope! I'm waiting for my left side to be done, which is pressing on my jugular vein. Vascular ES is supposed to be really rare, but reading posts on here, I wonder if a lot more of us have vascular involvement which goes undiagnosed....

Would you be able to give heidemt or Christian22 the contact details for your surgeon to go on their doctors list? If you look back over previous discussions you'll find the latest spreadsheet posted. Heidemt is in Hawaii too.

Hope that you continue to heal well, and God Bless!

Hi Maui Miracle,

I'm so happy to hear such a postive success story. That's really fortunate that you were able to find a local doctor who knew about Eagles and could help you. I'm in Honolulu, and I've had to go all over the US to try to find doctors to help me.

Thanks for posting and please keep us posted on your progress!

Tomorrow will be 4 wks post op. Should I still be feeling pressure and shocks along the artery line and deep within my ear? Still can’t sleep on my right side either. Seems to worsen if I don’t keep my head propped the majority of the day. Also off balance and dizzy.

I'm not sure about the pressure & shocks you are still feeling, but I was told to wait until the 6-week mark before worrying about symptoms that seem to be lingering. This surgery we've had is quite invasive, and it will take time for all to return to normal. There may be some swelling that might be aggravating your vascular structures still? But if you are really concerned, you should contact your doctor and ask if this is normal. I will say that I do have minimal, intermittent stabbing pain behind my ears which I've heard is completely normal as my facial nerves that were stretched rejuvenate.

Also, regarding being off balance & dizzy, that too may go away in time. I've had vertigo for 8 months, and at first after surgery I was upset that it hadn't gone away completely. So I am playing the waiting game with high hopes that this too shall pass in time. My vertigo happens when I lie back in bed and also when I turn head left while lying in bed. So I haven't slept on left side for 8 months! So I encourage you to give your healing a little more time. I pray for a quick recovery April E and that you will soon be symptom free!

April E said:

Tomorrow will be 4 wks post op. Should I still be feeling pressure and shocks along the artery line and deep within my ear? Still can't sleep on my right side either. Seems to worsen if I don't keep my head propped the majority of the day. Also off balance and dizzy.

Thank you Ivy for your concern about my facial nerves! Yes, I do have a 6-week follow-up appointment with Dr. Newman tomorrow and I will ask about my nerve issues. I am seeing a Physical Therapist who has given me facial exercises that are helping me, and my condition has vastly improved since surgery as Dr. Newman said it would. I will also mention that my left ear is numb and right ear about 1/2 numb....especially at ear lobes. But with face lift cut, this too is completely normal. I will tomorrow how soon I can expect feeling to return to those areas as well. But no matter how long the recovery period, I know this too shall pass and I am thrilled to be feeling so much better! I pray that when you have your surgery that you will have an even bigger success story than mine! Good luck to you!



Ivy said:

Haven't had my surgery yet, so I can't comment on the healing process. You should be having a follow up appointment soon? I've read where people have stated that nerve involvement can take some time to heal, but you MUST discuss this with your doctor for some peace of mind while you wait (((hugs)))

I have had an off balance feeling for years and years. My doc doesn’t think its the ES but maybe my MS or cervical stenosis. I would soooo like to wake up from surgery and have that gone…sigh


For what it's worth, my ENT/Surgeon said 6 plus months for total nerve healing. Can take up to a year. My face along my lower jaw line was numb for close to 5 months post op. I'm almost to the 6 month mark & still have pain (to the touch) around my ear & behind my jaw. I still get intermittent pain twinges at the back of my skull where the styloid is attached & in my throat & neck like the styloid is still there. The twinges are minor compared to what I had pre-op (first surgery was last Nov), & I chock up all current pain to healing nerves. I also have first bite syndrome as a result of the surgery, but thankfully it has vastly improved (i.e. isn't as painful most of the time) as it was right after my surgery. Nerves are slow to heal & there are probably multitudinous factors that influence how fast they heal. Be patient & trust that with time you will see great improvmement.

:)
April E said:

Tomorrow will be 4 wks post op. Should I still be feeling pressure and shocks along the artery line and deep within my ear? Still can't sleep on my right side either. Seems to worsen if I don't keep my head propped the majority of the day. Also off balance and dizzy.

Welcome!!! Wow what a story, so glad that you got that taken care of so you can live again! Love that verse!

April E,

Forgot to add that I slept on an incline for probably 2.5 months after surgery. I was able to decrease the number of pillows over time, but for a couple of months after surgery (I've attached a pix of my pillow arrangement just for laughs), every time I tried to lie flat or use one pillow, my throat would swell. It was annoying, & I felt like I'd never get back to normal, but I did. Again, be patient w/ your body. I'm a very active person & it felt like an eternity before I could fully resume my usual lifestyle, but my body has healed. It was a slow process though. My best advice is listen to your body & don't push it. If you have a "tired" day, rest. If you have a day where you're feeling "good" proceed w/ caution so you don't over do. Expect it to take 3-6 months for full recovery. I don't think we can completely appreciate how invasive this surgery is, but our bodies know & show it by how slow recovery is.

I'll pray for you to be encouraged today both by signs of improvement in your body & by the wonderful support from this website.

:)

130-IMG_3114.jpg (799 KB)

Me too. Have to sleep on 2-4 pillows. Sometimes I accidentally turn over onto my right side sleeping and pain wakes me up. At least I have my left side! Funny- my husband know exactly how to fix them all for me!

Thank you Selaness80! So happy to join this outstanding group and very happy to be getting my life back, and pray others will as well! God is great!

Selaness80 said:

Welcome!!! Wow what a story, so glad that you got that taken care of so you can live again! Love that verse!

I don't understand all the evangelical sayings on the forum. Is this a religious forum? If someone isn't healed, is God still great? If someone isn't healed, is that God's will? If it is God's will, then why pray at all since everything that happens is God's will?

Dear Hurting,

This is not a religious forum, but there are a number of Christian people on this forum who encourage each other through sharing Bible verses & offering to pray for each other & for others who are struggling with ES. We do believe that God is GREAT whether or not He chooses to heal a person.

The best way I can answer your questions is to quote a few Bible verses: In the Old Testament portion of the Bible, Isaiah 55:8-9 says, "For My thoughts are not your thoughts, neither are your ways My ways, declares the LORD. As the heavens are higher than the earth, so are My ways higher than your ways and My thoughts than your thoughts." In essence, God's logic, thoughts and works are far beyond man's understanding.

I cannot tell you why He chooses to heal one person and not another, but because Christians believe God is sovereign and loves us with a love so deep we can't comprehend it, we continue to trust that whatever befalls us is for our ultimate good (Romans 8:28 - "And we know that in all things God works for the good of those who love Him, who have been called according to His purpose.").

We pray because God hears us and has promised to give us peace in the midst of anxiety (Philippians 4:6-7 "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God which transcends all understanding will guard your hearts and minds in Christ Jesus.").

Just as regular conversation between two people builds their relationship and understanding of each othe, so prayer - conversation with God - builds our relationships with our heavenly Father. When we read/study His word, listen to Him, and talk to Him we get to know Him at a deeper and deeper level and the result is a better understanding of His will and His ways (Romans 12:2 says, "Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is - His good, pleasing and perfect will").

I hope this message gives you some understanding of the Christian mindset and why we believe God is ALWAYS good even when it seems He doesn't do what we think is in our best interest.

God loves and cares about you,

Isaiah 40:31

I read back through a couple years of posts and there's lots of people who still have problems after dealing with eagle disease. Some people have pain for decades. Some people are worse after their surgeries. I had a relative who suffered for years and now we think she probably had eagles and was never diagnosed for it. Not all people get cured and I think it'd be hard for them to hear praise to God because now I'm cured or my bite symptom is better. I think it's good to praise God for getting healed and getting better, but maybe not on a forum where people are suffering bad and need someone to talk to about it and someone to hear how bad theyre suffering. I think it would make some people feel bad. I think it would be better to praise God to each other in emails.