My appointment with Dr Samji went well and I have a surgery date for mid January!
Excellent news!! So glad you had a good appointment.
Yes it did but my surgeon did not take enough off so I still have issues.
Mine was compressing my jugular and carotid artery. Removing some of it
stopped the compression and all of the dizzy spells I was having.
Sorry to hear they couldnât get it all and you are still suffering. I was asking because my doctor said he didnât know if removing the SP would have any impact on my headaches.
Fantastic news, seamom, and not too long to wait for your surgery!
I had about 3 surgeons tell me the same. That they canât guarantee that my
symptoms would change but for me you could see the compression on my scans
so that was a necessity for surgery.
I also had horrible headaches every single day for over a year before
surgery. They were more on the left side of my head. I also had facial
swelling, eye pain, neck pain and facial pain on the left side. I knew it
had to be related to the ES because I had so many CT scans and MRIs on my
head and neck and nothing was found.
I have always suffered with migraines since I was younger but the headaches
I had everyday before being diagnosed with Eagles were different than my
typical migraines.
What are your headaches like and what other symptoms are you having?
@krista3
Both my CTs show mass effect on both my Jugular veins [neutral and chin down positions] and Carotid Artery on my Right side [chin down], but the Doppler Ultrasound test was on my left carotid [chin down] showing a restriction of 58% of blood flow.
I have 2 different types of headaches. The most frequent is on one-side of my head from neck/base of skull [near ear] to behind my eye which can last for up to 24 hrs even with Tylenol & high dosage NSAID and Gabbipenten [900 mg/day].
The other type happens on some days, when I am exercising [Hiking, biking] but not on other days doing the same hike or bike ride. For this type, my head over heats [like heat stroke --bright red face and pressure to the point of wearing a hat hurts even more. On these days I run my head under cold water for 20 minutes to attempt to cool it downâŚbut the headache lasts for a couple of hours.
When you said, âbut for me you could see the compression on my scans
so that was a necessity for surgeryââŚdid you mean that the doctors said it was a necessity or that you felt it was a necessity? My full list of symptoms are listed near the top of this topic, but I have been loosing consciousness when typing and grading papers [more and more frequently] during the day â Iâve even done this mid-sentence while talking to my husband.
THANKSâŚvery happy! Now waiting for clearance from my HMO to pay.
Hello my name is Blessu2 (Melissa). My life wih ES has been rough. As I read your post, it is comforting o know that 1. I am not alone and 2. It ia no a racial situation. (Please do not take my honesty to heart).
Seamom Nov. 25th my heart stopped twice. I was released from the hospital on Dec. 1. Half of my symptoms are gone. Half remain and are more aggressive than before my surgery. In W-S NC, I am treated as if all is well and I have leprosy. (AMAZING RIGHT!)
The doctors here say, they donât have much to go on (very little research) but, when I complain about a symptom they are quick to say THAT DOESN"T SOUND LIKE ES!
Frustrated is an understatement. Unfortunately, I am not tech saavy. The Dr.s that did my Emergency surgery have no desire to do my right ear AND Iâve exhausted ALL my funds on 2nd, 3rd, and 4h opinions.
I post on fb alot! I ask my friends to pray for us. (ES survivors) We are survivors!!
No we donât have cancer, we have a disease that is more debilitating, humbling and unpredictable!
My prayer is that we can raise awareness across the states and perhaps get this syndrome televised; so that silent sufferers will know there is hope.
I reached out to the group as an effort to keep from asking God to take my life. Before ES became FULL BLOWN!!! I was predominately happy. I ran 5kâs and half marathons. I worked 2-3 jobs. I ate WELL. Now I barely eat. When I do, its mostly soup and cereal or potatoes (soft). I barely have any energy and my symptoms change daily or weely.
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My keyboard is acting crazy, excuse the typos.
How did you survive? Did you have symptoms? What about work?
Wow, how scaryâŚsorry to hear that your doctors, like many people on here are also not taking your symptoms seriouslyâfortunatey I have scheduled with Dr Samji for next month. Iâm hoping to get both my bones out before vascular symptoms are permanent. There is a great list of doctors on this website some on eastern side of the country. Maybe you can make a âGoFundMeâ page [ask a young neighbor or family member to create this for you] to raise $ & awareness for both Eagles and your $needs for the final surgery to fix what ails you still. Good Luck
THANK YOU
It sounds like Dr. Samji is the go to Guru. Soooo happy you get to go to him.
And yes believe that you will not have permanant nerve damage.
Its aweful. Today I had sharps pains on the right side of my head. Yesterday I had the nagging pain in and behind my ear. Every so often I would get hot or dizzy. This canât be healthy for my brain.
I wish we were all closer. Perhaps we could partner together to raise awareness for ES.
Mine are sharp shooting pains on the Right and prickly teasing pains on the left. The left side is the one that causes me to get dizzy and or pass out.
Have them code it as syncope. I truly believe that with soo many of us surfacing, it will have its own code soon.
Very sorry to hear of your struggle with the doctors and to get help- so frustrating to go through surgery and still to have problems- do you know how much of the styloid they removed?
The name Dr. Samji uses for his surgical procedure is âmini-craniectomyâ. Insurance companies seem to be willing to pay for the surgery under that title. Eagle Syndrome per se doesnât seem to be recognized. Vertigo (dizziness), fainting, etc. can be a part of ES symptoms. As you may have noticed if youâve read many of the posts on this site, there are symptoms common to ES but there are many individual symptoms common only to the particular patient. Therefore, it is not right for any doctor to say your symptoms are not âtypicalâ ES symptoms. There are far more atypical symptoms than there are typical.
I agree. The fight to get help is GREATER than the disease! But Iâm still fighting. I donât know what I would have done without this blog. I began to think I was crazy. Now I feel like playing crazy to get help!
I am REALLY shocked that my left ear is still giving me issues. My sleep has been AWEful.
But for the grace of a God that some of you survived years of pain.
Love your name.
Am I going to be on disability?
Or will I get o yo back o teaching? Please be honest.
I am vary sad todayâŚI heard from my HMO, they denied my request to be seen outside of their practice. More paperwork now to file a petition for an independent medical review with the State of California