Now Eagles Syndrome on top of Arnold Chiari Malformation anyone else?

Hello ES family,

I was just diagnosed with ES but I’ve been battling Arnold Chiari Type 1 ,14mm protrusion), Syringohydromyalia, Stenosis, Cervical spondylosis issues sunce 2006. Ive been avoiding surgery at all costs and now and ES diagnosis to top it off.

Does anyone have both Chiari and ES? Or does anyone know if they are sister conditions?

I will see the surgeon for ES on 1.20.16 and with how little the surgeons know about chiari I’m really anxious about this appointment. Do i need to seek out an ES Specialist? Is there a list of questions I should ask the surgeon when I see him? JUST NEED SOME RELIEF, answers and I need to make sure I don’t forget to ask important questions.

Also, for those who have had surgery, what is a realistic recovery time? Whether the surgery is done orally or externally? The doctors always give the “Best case scenario time line”, not the realistic one.

All advise and suggestions very appreciated!

I haven't seen any other members with both that I can recall. You can look in the 'All Discussions' section and search for topics, so have a look in there. Are you a member of the Ben's Friends Chiari group? There are quite a few members with other neck problems however- spondylosis, disc problems, bone spurs etc. though.

It would be best to see a surgeon experienced in ES, or at the very least experienced in working in that area, and it's really important to make sure that the doctor can take off as much of the styloid process as possible, so ask about how they plan to do this. Whether the surgery is done externally, or intra-orally is something doctors usually decide, depending on whether they're more comfortable with one particular method, what sort of doctor they are etc. Intra-oral can be more painful as they have to remove the tonsils, so you have all that extra painful sore throat to deal with too. There's more detail about the two methods in the ES Info section. There's conflicting opinions as to which method gives the best 'visibility', so the best chance to remove more of the styloid, but external surgery does seem to give the better opportunity to remove more.

Recovery times vary, again there's more detailed info in the ES Info section, plus some links to discussions as some members have written their recovery stories so you'll know what to expect. Generally it can be uncomfortable swallowing or chewing for a couple of weeks, and there can be neck stiffness for a couple of weeks too, after that most people are feeling better. Some people feel the benefits of surgery straight away, but if nerves have been compressed/ irritated by the styloid processes then the nerves can take up to 6 months to heal. There have been a few members who've posted feeling improvements up to a year post-surgery!

Hope this helps, and you get on okay with your appt.- let us know!

I have Chiari Malformation and had decompression and fusion surgery. I can tell you what my chiari surgeon said in regards to ES, particularly vascular ES....

"Dr Milhorat and I were the first ones noticing and describing the frequent association of CMI and styloid hypertrophy, back in 2002.
Only a handful of the several hundreds of patients with styloid hypertrophy ended up having corrective surgery in our series.

The issue of "jugular compression" is compounded by the fact that in many cases we do not know:
- if if it a static or dynamic condition
- the amount of false positives deriving from imaging workup
- what is the "normal Chiari" anatomy of the jugular veins vs the "normal" anatomy of anybody else (for example, the jugular foramen, through which the jugular veins pass on the way out of the skull tends to be smaller in many CMI patients, hence the association of CMI and pseudo tumor cerebri in a subgroup of CMI).

Sorry- I didn't realise that you had Chiari too, sunlightandair!

No worries - I wouldn't have expected you to know! ;)

Jules said:

Sorry- I didn't realise that you had Chiari too, sunlightandair!

An interesting vid about chiari if you haven't seen it already...

Recovery for my son was just 2 weeks after the first and second surgeries. His most recent (3rd styloidectomy) is taking longer. We are at 5 weeks now and the nerves are clearly unsettled and pain is still there daily.

Thank you for posting that mt83. I am not familiar with chiari and now I will do more research.

mt83 said:

An interesting vid about chiari if you haven't seen it already...

Hi Michelle
I too have chiari and eds for 22 yrs. and I do believe that ES is related condition, it seems I have the vascular ES, trying desperately to find someone to help me with ES.

Hi all,

I woke up a week ago and ny throat was much more sire than normal. I dexided to puf my finger where it was hurting and I can feel the Styloid pushing on the wall of my throat. It seems as if its about to punctures through the tissue just below my right tonsil. If I push on the styloid the ringing in my right ear almost stops completely. Well 4 trips to see the ES doctor and he finally said “Your here for the 4th time so it’s time to do surgery but I don’t think it will relieve any of the symptoms you are having”. He said that he will remove the styloid and biopsy a couple spots looking for cancer because that will cause a sore throat. He does not believe that the surgery will improve any symptoms. I know my body pretty darn well and I told him that I believe otherwise has anyone else had a doctor who says their symptoms would not go away with surgery? I believe with all my heart that surgery will at least help some symptoms but it’s hard to not have your surgeon give even a glimpse of hope. Any commentsuggestions VERY APPRECIATED. I’m aggravated to say the least.

If you read up on here about success stories, you’ll see that most people have at least some relief of symptoms with surgery. There are risks for the surgery, which I think makes doctors wary of doing the surgery, but if you find an experienced surgeon then that should reduce the risks. In the Newbies section, there’s info about ES surgery; one study found that 80% of the patients had some relief of symptoms, and one of the reasons others didn’t have a successful surgery was because not enough of the styloid process was removed. That’s something you could discuss with your doctor- how much he will remove. Good luck!

I’ve had both sides done- the worse side was left a while, and I think has caused some damage to a nerve so I still get some pain, although it is still slowly improving after a year. The second side was done 2 months ago, and the results from that are great. The vascular symptoms I had both sides have improved massively too!

Michelle, my first two surgeons (for my first two eagles surgeries) didn’t think my symptoms had to do with the styloid, but it turned out they did. I was pretty much an example of what Jules was saying - my symptoms were improved after the surgeries, but the surgeons didn’t know that much about Eagles, so didn’t take enough of the styloid out, so I had to have revision surgeries on both sides to eventually get rid of all the symptoms.

It’s good that your doctor is willing to do the surgery, but it does sound like he’s not familiar with Eagles. As I mentioned above, my first two surgeons didn’t know about Eagles and didn’t take enough of the styloid out. I see that you’re in California - have you thought about going to Dr. Samji? He’s one of the most experienced Eagles doctors in the country. He did my two revision surgeries and I thought highly of him. I sure wish I’d gone to him in the first place.

Hi, thank you for your response.

Dr. Sanji

Sorry. Dr sanji is about a 7 or 8 hour drive and doesn’t take my insurance… I already looked into that option
. The Dr that I’m seeing now is an oncologist and is the only Dr in the Kaiser network who has any experience at all. I’m confident that he will do a good job but he doesn’t understand the symptoms and dismisses rhem by Saying that they won’t be effected by doing the surgery. I know my body and I know what’s bothering me and why. I just wish that he would acknowledge that many people have a successful surgery eliminating some or all of symptoms we/I suffer with. Thank you for your support

Well, this will be a good learning experience for him I would hope. So that will be a good thing. Best of luck to you!

Hi Michelle,

I have a friend who is THE head & neck surgeon for Kaiser in northern CA. I know she has done ES surgeries & is familier w/ ES because she & I just had a discussion about it. Her name is Fidelia Butt. It would be worth it for you to try to contact her through the Kaiser network & make the trip to northern CA to see a surgeon who is familiar w/ ES & the surgery. She uses the intraoral approach because she feels it gives more direct access to the styloid process. Beyond that, I don’t know what her philosophy is as far as shortening both styloids as once if you have bilateral ES. Dr. Samji did my ES surgeries but he will only do one side at a time w/ a 6 month wait in between.

I hope this is helpful info for you.

Forgot to mention that Dr. Samji actually worked for her while doing his residency.

Hi Michelle- I was wondering if you ended up having the surgery with a Kaiser Dr? I’m with NorCal Kaiser and having a total run around. I discovered my Eagle’s exactly like you. Had a weird sore throat [felt like strep on one side] and touched it to discover a hard bony lump in front of my tonsil- my SP.