Thank you Jules
Thank you for the prayers as well 
I’m sorry you are still having pain. Nerves can take a long time to heal. When I was a child I had an ear tumor. Back then the ear was removed without thinking of the nerve damage consequences. Slowly over a decade I regained some feeling in the outer ear. I had follow up surgery as an adult and how the nerves were handled differently.mi was amazed how I regained feeling much more quickly. Later I was given gabapentin for Fybromyalgia. I was a huge difference of healing. Hang in there I believe you will get better and I will pray for you too.
I think you're good to go w/ Dr. Samji's ofc with both the salivary gland issue & the appropriate length styloids. Sorry this has been such a long road for you! Very frustrating but hopefully your appointment will now get scheduled and you can move forward toward resolution.
I'll be praying for you, too!
MusicGeek said:
Thank you Jules
Thank you for the prayers as well :-)
I'm sorry you are still having pain. Nerves can take a long time to heal. When I was a child I had an ear tumor. Back then the ear was removed without thinking of the nerve damage consequences. Slowly over a decade I regained some feeling in the outer ear. I had follow up surgery as an adult and how the nerves were handled differently.mi was amazed how I regained feeling much more quickly. Later I was given gabapentin for Fybromyalgia. I was a huge difference of healing. Hang in there I believe you will get better :-) and I will pray for you too.
Thanks MusicGeek! My nerve pain is not too bad, easily controlled with low dose medication.
OK - I'm a crazy lady - I'm crying over the fact that I GET to have surgery. LOL.
I do not need to have more tests!!!! The assistant at Dr. Samji's wrote me a very nice note that ended with "yah!!!"
EVERYONE should take note that they will be insisting on the non contrast CT styloid "Protocol". I had an MRI with contrast and a CT with contrast. Anyone reading this post later needs to know that it was a close call to have to get yet another test. I wrote a letter requesting to please consider my situation since it would cost me about $1,500 to do another test. I now have a new patient appointment early May. I can now tell anyone who wants to know what's going on to simple look up Eagle Syndrome. I can probably stop this #%@^$#&#()@!! "Elimination Diet" for "inflammation" (Whoops I just cartooned swore again). I will be trying to lose a few pounds hoping it might reduce pressure and pain, but now I can eat a low cal diet without all of the craziness added.
So get this: My craniologist came up with looking into ES. Not anyone else. She actually went OC stayed up nights trying to figure me out (LOL). I owe her So Much! Plus she wants to escort me when I make the trip for surgery and request to watch, but also to be there for me (on her dime!). Can you believe it?
I believe I needed the other tests because they showed some soft tissue problems around the process. The MRI with contrast showed a cyst under the tounge. The CT with contrast showed and angry enlarged salivary gland. I believe it was God's timing and I now am more on a fast track - but I am so extrememly thankful for your prayers and good thoughts. I am extremely thankful for your understanding.
So bottom line for anyone who is currently "new" to this, like I was; as of March / April 2016 Dr. Samji's office requires a CT neck NON-contrast styloid protocol
Your radiologist may need to figure out what that means.
I know I said this in a email to you - but yay! Congratulations on getting the appointment. And it's such a positive that you were able to get your other problems identified too. I think you're on your way to getting fixed soon! And I'm blown away by the kindness of your craniologist.
And it's so good to get a definitive statement of what Dr. Samji's office wants. This is very good for us to know.
That's really good news! Thanks for the info for others seeing Dr Samji.
Hello Bella,
I am new to this discussion group. I wish you the best with your surgery. I may be needing to have the resection too. I will be following your recovery and you insight into Dr. Samji. I am from SF, but live in Pennsylvania. I am also looking into seeing Dr. Cognetti in Philly. I had a dissection of my carotid artery 5 years ago which turned into a pseudoaneurysm which is enlarging. My neurovascular specialist at UCSF thinks it is due to repeated trauma from the styloid process. Now just looking for an expect in Eagle's Syndrome. Thanks for sharing your story.
Jo
bella said:
Thank you both! It is very scary... I moved my surgery date to 4/18 (I wish I could do it now!). I felt much back to normal after acupuncturist did work on me to encourage and relief neck blockage (his term). But last night I had another episode of near-fainting, shaking, and nausea... and haven't recovered fully :'( My sister and bro-in-law are driving me up to San Jose tomorrow... we want to get me to closer to Dr. Samji, should any emergency happen at least I'm already near him. I am fearful of the .
I will keep everyone updated about my surgery. Thank you!
I am new to the living with eagle discussion group. I am glad I came across this discussion because I am looking for an expert who can give a definitive diagnosis and who can also do the resection. I had a tear in my left carotid artery 5 years ago which resulted in an aneurysm. I was told by several specialists that I should be fine, but only one a neurovascular specialist at UCSF mentioned Eagle Syndrome. Because I recently found out that the aneurysm has enlarged which is rare in this case, I reached out again to the specialist at UCSF. His theory is that the styloid is causing ongoing trauma to the artery, My symptoms seem to be getting worse. More frequent ear pain, numbness in my cheek, and a feeling that something is in my throat on the left side when I swallow. Not to mention that I am at risk for stroke or rupture of the artery. I am an occupational therapist and work with stroke patients everyday. I am very fearful. Thankfully, someone has directed me in the right direction, so I have some hope. Thanks to all for the info.
That does sound scary, Joanna. There are a few research papers/ case studies about elongated styloid processes causing aneurysm. I hope that you can get some treatment quickly.
I will be praying for you to not only be on the path to health, but to have peace. Hang in there
Hi Joanna,
I can related to your fear.... hang in there. So many members on this site have been so kind and generous in sharing their experience and support. I met up with Isaiah last week also (she offered up her wedge pillow for me for my recovery... so kind!), and it was a very liberating and heart-warming feeling to be able to meet and talk with someone who has the same syndrome (although we all have different symptoms) and who went through the same procedure, etc. I'm very thankful that we found each other on this site!
I have been more stable (no more episodes of near-fainting) these past few days, I think maybe because I am no on the road anymore but just taking it easy. Bad thing is I've developed a cold which turned into a cough :( Dr. Samji's office says it wouldn't affect the surgery but I am apprehensive about coughing during post-op. I will go see him at my pre-op later today. I will keep you updated on the status of my operation. Sending well wishes your way. Hang in there.
WOW! Joanna, your situation sounds like the worst case scenario w/ ES. I can highly recommend Dr. Samji as he did both of my ES surgeries. He is an awesome doctor and nice person to boot. I hope you are able to have surgery soon!
Will be praying for you!
Joanna said:
I am new to the living with eagle discussion group. I am glad I came across this discussion because I am looking for an expert who can give a definitive diagnosis and who can also do the resection. I had a tear in my left carotid artery 5 years ago which resulted in an aneurysm. I was told by several specialists that I should be fine, but only one a neurovascular specialist at UCSF mentioned Eagle Syndrome. Because I recently found out that the aneurysm has enlarged which is rare in this case, I reached out again to the specialist at UCSF. His theory is that the styloid is causing ongoing trauma to the artery, My symptoms seem to be getting worse. More frequent ear pain, numbness in my cheek, and a feeling that something is in my throat on the left side when I swallow. Not to mention that I am at risk for stroke or rupture of the artery. I am an occupational therapist and work with stroke patients everyday. I am very fearful. Thankfully, someone has directed me in the right direction, so I have some hope. Thanks to all for the info.
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LoL cartoon swearing
How long does it take once you call to get the Surgery done, is it months or weeks? Hope you get full relief soon it is one horrendous illness but I am blown entirely away
how it could be misdiagnosed, under-diagnosed & completely overlooked & also not believed…There must be some changes to the Laws this cannot go on like this
someone should form class action lawsuits in numerous areas & it must have in place a certain criteria on elimination full process. All the best wishes bella xx
Hi Aiden,
Bella hasn’t posted on this forum for several years. She had a successful surgery done by Dr. Samji in 2016. I know she felt better afterward, but I don’t know if all her symptoms resolved. Hopefully she’ll reply to your post.
In answer to your question about how long it takes to get an appointment once you contact a surgeon’s office, that depends on how busy the surgeon is, how many ES surgeries (s)he does in a week or month & whether you’ve provided clear evidence that you have ES (via a CT scan & a radiologists written interpretation of said scan). Some surgeons only do ES surgery once a week or once a month others schedule them in between their other surgeries & do them more often. Dr. Samji’s surgery days are Mon & Wed ea. week so he’s got a shorter wait time than some of the other more experienced doctors who don’t do ES surgeries as often.
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ok thanks Isaiah for the response I am still waiting now on if my Doctor will pursue the CT images or I will try privately to get it done. The x-ray images a lot of people get beside the CT scan or Panoramic is there a name for the x-ray used looking back of
the head & neck area or is it just a normal x-ray done? I wanted to ask this question because I am thinking maybe it will show something that way they push for a CT scan measurement done. I do not want contrast, I either reacted badly to it on an MRI or it
could of been the flat lying down from Eagle Syndrome that tripped me off I could not stop shaking they were going to stop the MRI procedure. They then did spine after I shook again. Hope Bella is ok now
The panoramic xray/ panorex people have done can show the styloids quite well- it’s often done by dentists or at a max-fac clinic. CT is the best for diagnosis though- the contrast is helpful for seeing if any blood vessels are compressed, but not all doctors want it or are bothered if you don’t have one. Does that help?
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Yes, thanks Jules but I think there was some other x-ray performed in Hospital settings like neck & back of the head views I recall seeing it posted somewhere, one Woman had said hers was not found on the CT images but on a normal type x-ray
Oh, okay not one we’ve come across much.
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ok thanks Jules, I will try to look for the Name I have seen before