Just finished speaking with Dr Alessi in Beverly Hills, feeling discouraged

General
1

Hello,

I had an appointment with Dr Alessi who works in Beverly Hills, CA. He is very nice but I'm feeling like he won't help me with the pain I am experiencing. To recap for those that don't know my story, I had styloids shortened a few years ago with not much improvement in symptoms. I didn't know much about Eagles syndrome at the time and I don't feel like that doctor removed nearly enough of the bone. I still have styloids that are around 2.5 to 3 cm in length and calcified ligaments where they attach to the hyoid.

I feel a bone sticking in my throat, I can put my tongue on it. I feel like it is causing compression to either the artery or jugular vein when I turn my neck, possibly compressing the glossopharyngeal nerve as well.

My situation is complicated by the fact that I have also been diagnosed with Thoracic Outlet Syndrome. I am treating that condition, but I nonetheless feel quit confident that the stylohyoid ligament is causing significant compress in my throat.

Dr Alessi really seemed to dismiss the notion of the styloids and ligament causing any problems. He said that the standard diagnostic tool to determine Eagle syndrome is to inject lidocaine into the stylohyoid ligament. If the pain goes away, you have Eagles and if it doesn't, you don't.


He did inject lidocaine into that ligament with no improvement. But I don't understand why I should expect to feel any improvement if my symptoms are all vascular from significant compression? I don't buy the argument that everyone with Eagle's sees huge improvement with a lidocaine injection to the stylohyoid ligament.

What do you think about this? I have substantial vision problems, dizziness, pain when I turn my neck and feeling like blood flow is obstructed to my head all the time. There are not too many plausible explanations for what could be causing this except the Styloids and stylohyoid ligaments. But I am having the hardest time finding any doctor who feels the same way I do and is willing to remove them. I don't have any test that conclusively proves that the styloids are causing compression and pain. But I don't think that is uncommon? You can feel the bones in my throat and I have many of the symptoms of Eagles. That should be sufficient I would think?


Or maybe the doctors are much more reluctant because doing surgery a second time is much more dangerous?

What do you think? If you have any suggestions for doctors in California, I'd appreciate a reference. Even someone outside of California would be helpful. Maybe I could talk to someone on the phone who could provide some answers?

Thanks so much.

2

Hi- have you looked at recent discussions re vascular ES- it sounds like yours is- and also about styloids growing back; there's others going through similar to you at the moment, you're not alone. I think from what others have said a CT with contrast is good for showing vascular ES. Everyone has different symptoms, depending on the length and angle of the styloids, where they're pressing etc., so I can't imagine that the lidocaine injection is conclusive for everyone! I've never had though, so don't know; it'd be interesting if others have not found that helped?!

Try and keep positive, there are others who're in the same boat as you,

God Bless, Jules

3

Hi Nel,

Since you are in CA, I highly recommend you make an appointment w/ Dr. Hussein Samji 408 - 227 - 6300. He's Stanford trained & is on staff at at least 3 hospitals up here in the Bay Area (his main office is in South San Jose). He did my ES surgery this week. He's the most experienced ES doctor on the west coast at this point. He's done upward of 70 surgeries. He believes in cutting the styloids back to the skull & removing the stylohyoid ligaments as a more permanent cure for this problem. I am very impressed by his approach and his skill as a surgeon. He will only do one side at a time & surgeries are 6 months apart because his experience dictates that when he does bilateral ES surgery, post-surgical throat swelling can be significant enough to cause the throat to completely close thus creating other problems. I have to say I agree w/ his assessment after what I've experienced these 4 days post surgically.

I will be scheduling my second surgery when I see him next week for my follow-up exam.

I hope this helps you.

Isaiah 40:31

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I agree with Isaiah! I just had two external surgeries with Dr. Samji. He is a wonderful surgeon and really knows a lot about Eagles. His entire staff is wonderful.

5

There missing something my styloid was tooken completely off 2 years after I had another ct to see if any growth has happen .Nothing the styloid permantly damaged one area in my throat but no answers to what it is

6

What do you mean "permanently damaged"?

Deleone said:

There missing something my styloid was tooken completely off 2 years after I had another ct to see if any growth has happen .Nothing the styloid permantly damaged one area in my throat but no answers to what it is