kids become self sufficient?
Actually, I have one adult kid who is getting married & another who hasnāt figured out who she is yetā¦ but sheāll get there.
Loved the chat. Iāll post soonā¦ if I dont need surgery for this other dumb issue.
Night!
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So sorry to hear about your visit with Dr. Garvis. How disappointing. 
I was going to see him, but my headache doctor knew Dr. Omlie & recommended him. Iām so glad that I went to him. He knows what he is talking about & did a great job on my surgery. After having EVERY test in the book for my symptoms four years ago (this month), they couldnāt figure anything else out so they said I had chronic migraines. My neurologist tried different meds to help my daily headaches, but I still was getting so many every month (over 20) that he referred me to the Headache Clinic at the U of MN. Dr. Cha finally figured it all out & diagnosed me with Eagle Syndrome.
After having my first surgery on January 20, 2021, I have only had 2 headaches! I used to have migraines & pressure headaches every day. Iāve also have had some lightheadedness every so often. I used to have that every day also & it prevented me from doing anything active that moved my head. I do still have my cough. Which is a bummer. I think that those symptoms which were relieved, can be attributed to my left sideās severely compressed jugular vein. Now, I just have to complete the process & get my right side done. I have surgery scheduled for May 11. Yay! I highly recommend Dr. Omlie. He normally does his surgeries out of Fairview Southdale. I donāt know how far from the cities you live, @Pam?
Hope you figure out your stomach issues. It sounds incredibly painful. Let us know how things progress & how you are feeling.
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@naturelover
Hey there,
Havenāt been on here until today to reply.
I am working my way towards Dr Omlie. I am seeing a neuro doc next week. I figure if I cross off all the possibilities it COULD be, then Eagles canāt be denied. I got stuck with dizziness and nausea this past Monday nightā¦and mild vertigo, which really sucked. The dizziness wonāt go away and gets worse when I turn to fast. See what the neuro saysā¦
As for where I live, Iām in the NW suburbs of the cities, so driving to Fairview Southdale hospital isnāt a big deal 
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Hi Pam,
Iām a little slow to respond to your post aboveā¦congrats on acquiring a child-in-law soon. Itās an exciting time but will bring itās own challenges (I have a son-in-law & 2 grandkiddos). I also have an adult āchildā whoās still figuring things out, but heās working at it, & weāre thankful!
Iām glad youāre covering your bases as far as seeing the pertinenet specialists goes. Always good to rule out other possibilities.
Hi @Pam -
So glad to hear from you. I am glad that you are making your way to Dr. Omlie.
Not all neurologists are created equal. I had two that told me I was making everything up. But I did get referred to an excellent one, Dr. Hyser, when I went to the emergency room thinking I was having a stroke. He took me seriously & did everything he could to help me. Finally, when I wasnāt getting better on the meds he gave me, then he referred me to the Headache Clinic at the U of MN. Thatās where I saw Dr. Cha. She was very knowledgeable & was able to diagnose me right away & then confirm with the CT scan. She is very familiar with Eagleās Syndrome. Have you had a 3D CT scan yet?
Good luck with your appt. Let us know how it goes.
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Well, the neuro Iām seeing tomorrow is a crapshoot, to be sure, but Iāll give it a go. If heās helpful (listens), he might end up being worth the visit. The dizziness and nausea last week (and mild vertigo that first night) was enough to convince me it was time. I have also been getting migraines more frequently of late. I rarely have had them (couple a year) and then in the past couple months, Iāve blown through my supply of Excedrin Migraine when it had been sitting unused for quite awhile. Iām lucky if I catch one starting that I can take that and it helps, but if one slams me, Iām SOL. My hubby and I are getting to the point of just jumping to Doc Omlie and begging for surgery, but thats not my usual approach to things. Iād prefer to make sure Iām not jumping the gun, considering the seriousness of the surgeries involved. In a couple weeks, I will have all the info Iām hoping to gather, then I can make the decision to move forward or not. My thinking is also that my insurance, while great, would have a hard time denying coverage for a surgery that isnāt common, if Iām doing all the tests (with negative results) and crossing off all the specialists and the specialists all say it isnāt āthis or thatā.
As everyone on here can attest - it does all drag on you, thoughā¦ BIG sigh.
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Itās definitely a process. A painful one, unfortunately. Maybe you can try to get some medicine for your migraines from the neurologist? Those symptoms certainly sound similar to mine. See if you can get a CT scan of your neck & have them look for eagleās syndrome & any compression on your jugulars or carotids. Thatās if he/she is willing to help & listen to what youāve already figured out. Let us know how it goes. Good luck!
If by chance, heās not willing to help, see if heāll give you a referral to the U - Dr. Cha. Sheāll at least listen & help figure out the source of your headaches, etc. Just a thought.
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HI Pam,
Hang in there. It is definately a slog. It took me 5 years to get my Eagles diagnosis. This after all kinds of injections, massage, acupuncture, you name it in my neck, shoulders and jaw. I did get to a point where I was in so much pain, I was desperate for surgery. I also have TMJ and neck instability due to Ehlers Danlos Syndrome (connective tissue disorder) which is what I thought was the cause for many years. Finally a new neurologist mentioned the possibility of Eagles and I had to push my PCP for a CT scan that confirmed it.
I had the trifecta for pain and worsening in my temples. Right before my 2nd surgery I saw a new TMJ specialist and found I had significant osteoarthritis in my jaw causing jaw misalignment. I have been waiting to heal from 2nd surgery in December before I move on to addressing that but I have to say in recent weeks (about 16 weeks out), my jaw is not bothering me so much anymore although I did have a good round of botox and steriod injections a couple months ago.
My daughter has had similar bouts with high fat meals as you. Too much pizza with very fatty cheese put her in the emergency room evaluating gall bladder. She has dizziness and nausea,migraines, etc but also has orthostatic intolerance (POTS/Dysautonomia). When she was young, they called it vasovagel response. That vagus nerve can cause all kinds of stomach and balance problems and throws the nervous system into malfunction. Many with Eagles do complain of those symptoms and additional anxiety and heart palpatations. Good luck on your journey and I hope to get to the right doctor to assist in figuring this all out.
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@Pam - Any updates after your appointment with the neurologist?
Well, my 2nd side surgery is next week on May 11. I am super excited to see improvements to my remaining symptoms. My story & progress is in the beginning of this thread, but now I am 4 months out from my 1st surgery. Just a recap. Prior to surgery on my 1st side in January, I would get migraines & intracranial pressure headaches every day. I have only had five in the four months since my surgery!!! Woo Hoo! I also had lightheadedness & nausea every day. I couldnāt bend over & do things without having issues. Now, I just have it randomly. I still canāt over do it with the bending over in the morning, but it is dramatically improved. I also had a cough for 15 years. My doc felt that it was all tied in to the E.S. It did not go away after my 1st surgery. So I am hoping that it will go away after this one. Also, I still have pain & numbness in my ear & jawline from the surgery. They had stretched the facial nerve during the surgery. Itās gotten better, but not gone.
Iāve attached a pic of my scar that my husband took for me today at 16 weeks. I thought it would be better than this at 4 months, but it is what it is. I know that I had a really easy recovery on the 1st one compared to some stories on here. So, I am not really expecting that again, but hoping itās not too bad.
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Thanks for sharing your story! Iām having my 1st surgery (right side) on the 10th. I hope you see your remaining symptoms disappear!
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I hope that your second surgery recovery is good too, & that the other symptoms go too. Good that youāve seen improvements with the first surgery. The scar could be an opportunity for spreading the word about ES if anyone asks! Will pray for a good result 
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Will be thinking of you too next week, God bless
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Hi naturelover,
Your incision looks really good! It will continue to heal & will gradually become much less visible. Iām glad your second surgery is coming up soon. Please let us know how everything goes for you. After your second surgery, hopefully, your remaining symptoms will begin to resolve. It was my second surgery that made the biggest difference in helping my ES symptoms go mostly away.
Iām putting it on my calendar so I can pray for you especially that day. 
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Thank you all for the well wishes! I appreciate it. I think this time around I am more excited that maybe all these symptoms that Iāve had, will finally go away & I can be like a normal person again. I try not to get my hopes up when I think about all the things I could do before. Itās been so long since I couldnāt move my head without pain & lightheadedness.
I had my pre-op with my doctor who first saw me when I got sick. It was nice to share with her the results of the first surgery. I also thanked her for all she did in those beginning months. She did every test in the book to try to figure out my symptoms & she expedited those tests. That was really helpful when I saw my other doctors & finally Dr. Omlie who is doing my surgery. He said, Wow, you really did the work to prove that the only thing left was Eagle Syndrome. I was able to thank her even though she didnāt do the final diagnosis, she referred me on to others who finally did. Also, I found out the other day that my original neurologist that Iāve had for four years, is retiring. He was the one who actually believed that I was having symptoms even though people he sent me to for testing, thought I was making it up. He also saw me at my worst & did his best to figure out what was wrong & then treat me. When I still was having so many headaches every month even on medicine, he finally sent me to the U of MN Headache Clinic where I was then diagnosed. It feels like everything is coming full-circle. So I guess I have lots of thoughts & emotions.
Iām glad that I know somewhat what to expect at the hospital & after the surgery for recovery. I know that my first one went really well last time, so there is a chance this one is different. One thing I learned, that I tell others in this journey, is to advocate for yourself. Even with good doctors that Iāve had along the way, there are people that donāt believe what is happening to you. When that happens, find a different doctor. Donāt settle. Your life & happiness depend on you speaking up.
I go in for my pre-surgery COVID test today. That is the last step before the surgery at 6am Tuesday morning. Iāve gotten all my soft foods, pillows, & ice packs ready. Thanks to everyone on this site who helped recommend things the first time around. I owe you a debt for sharing your experiences & stories . THANK YOU!
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Yay! Iām so happy for you! Weāll be able to have recovery stories together. Please keep us updated! Good Luck!
WOW! What a wonderful post, @naturelover! So great that you were able to thank the doctor who set the wheels in motion for your ultimate diagnosis & the ability to move forward toward recovery! You have offered excellent advice to our members about self-advocacy. We need to be reminded about that often!
Your surgery date is on my calendar. Iāll be praying & hoping that your second surgery is equal to or better than the first as far as outcome & recovery go. It did take about 6 months after my second surgery for everything to settle & the big recovery picture to become visible but the wait was so worth it! Iāve said before & will say it again, Iām 6.5 yrs out from my first surgery & still noticing little positive changes in the residual nerve issues I had post op. Our bodies are amazing in their ability to mend!!
Thank you, @Isaiah_40_31 ! I so appreciate your encouragement & Iāll remember that I can still have some symptoms leave later on. That is good to know. Thank you all again for everything! Iāll keep you updated.
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Well, I had my 2nd surgery on Tuesday. It seemed to go ok. They found a cyst underneath the styloid when they were removing it so they had to put a drainage tube in. Also, I was able to talk to the anesthesiologist beforehand & tell him about last time not being able to swallow for three days. He said he would spray something in my throat to hopefully help. But, I should know that the way they have to do the surgery & tubes & all, it might not work as expected. It did work! Yay! I only had a sore throat after in the hospital. Also, this time I was really nauseated all day, every time I moved. But they gave me a bunch of stuff in my IV & it finally went away in the evening.
It feels so much different than last time. Especially the part that I can eat somewhat normal things - just in small bites. But the other thing I have sometimes when I eat & when my Tylenol wears off, is a searing, hot-poker-like pain in my lower ear & where my styloid used to be. Holy smokes! It goes from 0-10 on the pain scale in an instant. Iām sure itās the nerves, but it is so painful.
I am attaching a photo my husband took yesterday - Day 3. The little tape on the bottom is where the tube was. I am looking forward to seeing what symptoms go away. I am so grateful that I could have these surgeries & good doctors. It sound like there were a bunch that assisted. The University of Minnesota is a teaching hospital so there are always a lot of students & residents there. I think that is a good thing. If I can use this to help others to be diagnosed & treated sooner than I was, it is a good thing!
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