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Eagle Syndrome - Online Support Group

Possible regrowth

Hi everyone!

I’ve been following but not commenting over the last couple of years. I had external surgery on my right styloid in Feb 2016 in Denver. I have since moved to Phoenix. I had the vascular version involving compression of my jugular vein. I’m blessed with unique anatomy and only have one jugular vein so it created a pretty horrific situation of intercranial hypertension until my diagnosis. I had several complications with the surgery resulting in nerve damage to the accessory nerve which has left me with extreme shoulder and arm pain. I had physical therapy for many months to try to regain the use of my damaged arm. (That was after I could get them to believe the surgery did indeed cause damage to the nerves) My right shoulder still rolls forward and I have a lot of difficulty using my right arm. I’m now experiencing many of the same symptoms I had prior to surgery. Unexplained high blood pressure, severe ear pain, migraines, neck pain and many more. I regret not doing more research pertaining to my doctor’s familiarity with Eagle Syndrome. I went to a very well renowned Neurovascular Surgeon, however I was his very first ES patient. I learned upon waking from surgery that he only removed about 1/2 of the styloid process and we never even discussed whether the ligaments were calcified prior to surgery. The muscles primarily on the right side of my neck are about 2-3 x’s what they used to be.I always appear to be swollen. I still battle First Bite Syndrome and have some remaining nerve damage in my face which makes me look a little bit like Elvis :). I never did go back to have the left side done.

I have an appointment scheduled for March 10th with Dr Milligan. I hope he is able to shed some light on the return/remaining symptoms. The thought of additional surgery terrifies me but this is no way to live either.

I am so happy when I read all of the success stories on here. I am hoping to one day be among ya’ll! The lesson I want to share is to please ask questions and do your homework. The time to discover you are your surgeon’s first ES patient is not when he is telling you that he was “reading up about this interesting topic” the evening before. I took the recommendation from my neurosurgeon that this doctor was the best qualified without asking enough questions. (I have had a neck and lumbar fusion as well).

I continue to learn so much from this group and this site. I am grateful for every one of you and the insight you provide.

So sorry to read that you’ve had problems following surgery; it is so frustrating how some surgeries are not done well. I would’ve thought a neurovascular surgeon would still have been aware of the nerves in that area & been careful of them, even if they didn’t understand how important it is to remove more of the SP. But thank you very much for sharing your story to help others.
It may be that you’ve not had regrowth but that not enough was removed before.
I hope that your appt. with Dr Milligan goes well, you should be in safer hands this time! Please let us know how you get on & when you get a date for surgery.

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Thank you so much Jules. You always take the time to offer such kind, compassionate words.

I still absolutely, wholeheartedly believe in this surgery. It did help in many ways. I used to wake up with visual and auditory hallucinations and the worst headache you can imagine. And my blood pressure was 180/120! If I come across as ungrateful or negative, that’s not my intent. It really is to try to help anyone that is trying to choose a doctor. I think I just got so excited that I had finally found one that believed me and was willing to help. As many of us know, the exhaustive process of diagnosis can really take a toll on you.

I’m not letting this take me down! This process has taught me how to advocate for myself and expect professional and compassionate care. Thank you once again for all that you and many others do for this group. You are amazing!

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I’m glad that you’re positive about surgery & that it did help for a while with the IH, it’s easy to accept surgery when offered it, the symptoms get you desperate! What doesn’t kill you makes you stronger, as they say :wink:

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Hi Susan1

You’ll be in wonderful, caring hands w/ Dr. Milligan. I’m so glad you were able to get an appointment w/ him so soon (although you may have made it awhile ago) as I understand he can be booked out for months. I hope your appt w/ him goes well & that he feels he can help you.

:blush:

Thank you for the reply and the feedback regarding Dr Milligan. I’m excited to be seeing a doctor that understands this condition. I did make the appointment months ago. I’ll keep you posted!

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Susan1
With all that is going on were you able to see Dr. Milligan. I am so sorry you are having these problems. I identify with you. I hope you at least had your appointment. I also pray that this pandemic has a shorter life than we are hearing. All of us are here for you.

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Hi Emma,

Thank you so much for reaching out! It’s crazy times right now for sure. I hope you and your family are well. Yes, I was able to get in to see him! He is absolutely wonderful and so compassionate and committed to helping his patients. He let me tell him my little story about my previous surgery and was very patient and understanding. I left him with my gazillion scans so he could review them. He called me a couple days later and wants me to have another specialized high tech scan which he and his team will review. Then they will determine if another surgery is an option. As of now, I’m still waiting to hear from the imaging company. I’m sure it will have to wait until this crisis is over.

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Glad that Dr Milligan listened to you…so sorry though that it looks like you might have to wait a while. Stay safe & keep well…