Severe Jugular Compression and surgery soon!

HI All - I thought I would write a separate post telling a little about my history. I am scheduled to have surgery on Jan. 20th - a Styloidectomy on my left side. My doctor is Dr. William Omlie, a Vascular Surgeon and his nephew, James Omlie, an Oral and Maxillofacial Surgeon.

My most noticeable symptoms began nearly 4 years ago. I woke up one day unable to stand. I was extremely lightheaded. Soon, I had other symptoms too: slight pressure in my head, fatigue, & motion sickness. By the 2nd day of not being able to work. I went to my primary doctor. She was great & did every test that she could think of. I have had traditional migraines for 37 years, but this did not feel like it & my migraine medicine didn’t help. My symptoms started to progress with some weird episodes of confusion, weakness in my arms, and inability to form words The lightheadedness & slight pressure in my forehead continued. (I now think that my styloid might have been pressing on my carotid artery, at first.) I ended up going to the emergency room one day because I thought I was having a small stroke. They referred me to a wonderful neurologist at the U of Minnesota - Dr. Hyser.

He also did every test that he could think of. After everything was ruled out, I was given a diagnosis of chronic migraines. After several years & several preventative medicines, I was still having 20 migraines a month. This included my “traditional” migraines (as I called them) & my new migraines. I also was unable to do any type of movement that would cause my head to go up & down. So he finally referred me to the Headache Clinic at the U of Minnesota - Dr. Cha.

As Dr. Cha was taking my history, she saw that I also have had a chronic cough for 13 years. It was diagnosed as a neurogenic cough. She put two & two together & thought there might be something causing both my headaches & cough. She took a CTV of the neck. She called me as soon as she got the results! I had what was called Eagle Syndrome & a severe compression of my jugular veins. One side was worse than the other. My styloids were 4.5 cm & 4.4 cm.

My first referral was with Dr. Ondrey, an ENT. That didn’t go so well, so Dr. Cha referred me to Dr. Omlie for a 2nd opinion. He recommended that I have surgery, although he couldn’t guarantee all my symptoms would go away because there are so few cases out there. I immediately agreed to the surgery. I wanted my life back. Since then, my surgery has been cancelled twice because of a lack of hospital beds due to COVID. Now my surgery is scheduled for Jan. 20th. I am hopeful but a little scared, since I have been reading about everyone’s recovery. I am attaching the CTV of my neck. The notations are DR. Omlie’s.

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Ouchie! Not surprising that you’ve had severe symptoms! I had bilateral ES causing jugular compression & had surgeries a few years ago, & feel loads better, the surgery was successful for me, but we’ve had a couple of members recently who have still had symptoms post-surgery. Occasionally stenting may be needed to make sure the veins keep open- just to prepare you, but usually symptoms go once the styloids are removed.
There’s lots of info all about what to expect after surgery in the previous discussions you can look for if you’ve not read up already.
I hope that it doesn’t get cancelled again for you. Will be praying for you!

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Nasty spikes, naturelover! It’s good you’re getting them removed. I’m glad you found Dr. Omlie. I will also pray your surgery on 1/20 is a GO!! The sooner your left styloid is removed the sooner you’ll get to start recovering from those dastardly headaches.

Wishing the best for you! :hugs:

@naturelover
Good luck with your surgery! Dang covid! I’m in the Twin Cities as well. I am new to being diagnosed and not seeing Dr Garvis until Feb 1st. He’s one of the three area doctors on the list. I’m so grateful they have a listing on here of doctors that can potentially help! My GP had to look up what Eagles was when I the radiologist put it in his report (sinus CT), so she wouldn’t have known at all who to recommend.
I read your comment regarding the doctor at the UofM and am glad now I didn’t call his office for an appointment. I’m not sure if I’m headed for surgery, but I know that I have some symptoms of compression and it scares me. After finding out I had ES, then reading information on here from actual patients, so many things, for so many years, made sense. Sounds like you felt that way too.
Again, good luck on your surgery and recovery! And dang! Those styloids are crazy long!
Pam

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Thank you @Jules for your comments. I so appreciate this group & all the information on this site! I have learned so much from it. The thing that I read about yesterday was First Bite Syndrome. It sounds painful & so many people have reported it.

Thank you @Isaiah_40_31 . I appreciate the prayers. So far Minnesota hasn’t spiked in COVID cases this year. I hope the numbers can stay low for everyone’s sake. Yes, Dr. Omlie is really thorough & he talked with my doctor about my case. I feel good about it. Although, he told me that there was no recovery time. It wasn’t until I read the stories on here, that I realized that was not true. When my first surgery was scheduled, I had only requested four days off from work. Yikes!

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Hello @Pam ! Welcome to the site. It is good to learn of someone else in the Twin Cities. I too am grateful for the doctor list on here. That is how I found this site. My doctor didn’t personally know Dr. Garvis, but she was willing to refer me to him, if I needed a different opinion. If you need a 2nd opinion, don’t be afraid to request one. I remember that wait until my first appt. It was so loooong!

I hope you will feel comfortable soon to share your story. I’d love to hear about your journey. There is another Minnesota person on here - @anharris . She just had her 2nd surgery a few days ago with Dr. Omlie. I think you can search her & you’ll find her postings.

Thank you again for the well wishes.

Those are some hefty spikes for sure! On the good side, you at least know what is causing all your problems…or most of them. Most surgeons worth their salt will not promise all symptoms will be fixed. I had some mild first bite with my 1st surgery last April but went away within about 4 weeks. I just had my 2nd about 5 weeks ago and I didn’t have any this time around.
Although some hardcore type A’s go back to work quickly, I personally would not recommend it. My doc suggested 2 weeks and I only work part-time at a desk. I suggest at least 1 month. My 2nd one I got 6 weeks and glad I have that since I’m experiencing some tongue dysfunction and speech slurring. I’m not so sure I want to return in one week due to my job requires alot of talking and it is a strain to talk straight without slurring.

Thank you @Snapple2020 for the heads up on the recovery time. My bosses have been pretty flexible with me so far, especially with two surgery cancelations. I work retail & I talk all day long. I did mention to my boss that I have been reading about the recovery time on here & that it is definitely longer than zero.

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The first time, I didnt have any speech issues or much of even a sore throat. It can usually take 1-3 months to really feel 100%. If you are on your feet all day, you might have increased swelling especially even at 2 weeks out. I’m 5 weeks out and still have significant swelling.
My surgeon gives RX for prednisone for 10 days after surgery. That stuff is like majic and really helps alot. You may want to ask your surgeon about this as some do it and others don’t. My 1st surgery was rescheduled too due to COVID but luckily opened back up 3 weeks later. I was worried in early December, I was at risk of it happening again. It didn’t but it was because I was having surgery at a stand-alone surgery center. If its in a hospital setting, its more likely you will have delays depending on infection rates. Hope you get your soon!

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Yes, I will ask for the prednisone, for sure! Thank you!

FBS is quite common, & can very a bit, mine wasn’t too bad, most people find it’s nothing like as bad as the ES pain though, we’ve been toughened up! Not everyone gets it though!

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My surgery is tomorrow! I am both excited & nervous. I have a question from my husband. If there are a lot of ligaments, tendons, & muscles that are attached to the styloid process, what do they do with them? Do they leave them dangling? :slight_smile: For my surgery, they will be shaving down to the skull base. Thank you!

Glad they’re removed the styloid right back to skull base, that’ll give you the best chance of good results. If there’s any calcification on.the stylohyoid ligament, then that section should be removed too, otherwise the other ligaments are detached from the styloid & left in…strangely it doesn’t seem to make any difference to speaking or swallowing etc. so don’t worry about that. I was worried about that, so pleased when I came round & could still swallow! I can tell any difference!
Will be thinking of you & will pray for good results, let us know when you’re up to it how it goes, God bless :pray:

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There aren’t a lot of ligaments, tendons & muscles attached to the styloid process. The stylohyoid ligament & the stylomandibular ligament are the two ligaments attached to the styloid. There are several muscles but their attachment to the styloid process isn’t key to their functioning properly & yes, they are detached during surgery. The stylohyoid ligament is often removed along w/ the styloid to prevent further calcification & the need for future surgery. On rare occasions the stylomandibular ligament also calcifies & has to be removed, but as far as I know, we only have one member who’s had that happen. These ligaments play a minor role in swallowing & are not missed when they are gone.

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@Jules & @Isaiah_40_31 - Thank you for the information. I read it to my husband & he feels better. :slight_smile:

Leaving in a little bit. See you on the other side!

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My surgery went well. I’m having some trouble swallowing, but ice chips are good.

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Sometimes intubation can hurt the throat, so could be that, you’re doing right with the icing :bouquet: :hugs: :pray:

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So glad to know all went well. Keep that ice & those pain meds coming! Be persistent w/ them through at least day 6 then you can start experimenting w/ cutting back. Don’t forget that Rx pain meds are constipating so please be proactive in taking care of yourself in that arena, too.

Sending a gentle, healing hug :hugs:

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Thanks for all the well wishes! I am doing pretty good. My swallowing is better & I was able to swallow my pills this morning for the first time. Yay! Still only eating soft foods. When I chew, my jaw makes noises. Sort of like air pockets or something.

I am attaching a photo of my styloid process that they removed. The doctor said that while I was under, they could move my head & see that the styloid was squishing my jugular vein.

One problem I am having is that the facial nerve near my ear got stretched. So I can’t feel most of my ear & around it underneath. I’m not sure what to do about that. Let me know if anyone has any suggestions to help get that feeling back. I still have quite a bit of swelling on my neck. Also, a lot of bruising. I still have steri-strips on the incision so I can’t see it yet, either.

Oh, I LOVE my wedge pillow & v-shaped pillow! They are the best. I couldn’t sleep in the hospital, but when I got home they helped me be comfortable & sleep. I highly recommend them!

Glad my first surgery is over!