ES Surgery with Dr Samji on 18th Mar and My ES Story

[Siwen]

Dear All,

Just want to share my ES story with you, so it may benifit anyone who is in a similar situation as mine. I’ve included many details about my symptoms and treatments, so it’s a bit long, just in case anyone has similar symptoms as mine and can refer to. Any suggestions to me are very welcome and I’d also like to answer any questions if you have for me. I completely understand what are the tough situation that ES patients are in, I have very terrible symptoms for around 2 years without diagnosis.

Firstly want to thanks @Isaiah_40_31, she has helped me so much. I was diagnosed with ES aournd last Sep, and joined this forum last Oct with both great desperation of long time symptoms and happy that I finally got diagnosed and know my symptoms are caused by ES, also doubting if surgery could cure me and who should I reach to for my surgery. She provided many critical key information to me which I was in need of, answered many many of my questoins, and pointed me to how to seek treatment and doctor for surgery.

I’ve a lot gratitude for the support I got from @Isaiah_40_31, especially because I’ve some very terrible symptoms, my life almost paused for around two and half years due to ES, I work like only have 40% energy/state of my myself compared to a healthy me, so I was sometimes in anxiety and fear, some words of information and reassurance she provided to me makes me calm down, fell relieved and have confidence that surgery will help my symptoms heal, really appreciated that so much.

I actually read a lot posts on this forum, especially many ES stories, it greatly benefited me, so thank you all very much! This forum is really a wondful place for ES patients like me, if I could not find this place, I could not have my surgery schedueled with an exellect doctor so soon!

For my symptoms, I listed as below:

Brief Summary of My Current symptoms:
Chronic dull pain/pressure in the left back of upper neck (near the C1-2 area), lower occipital area, and roughly the skull base area.
Constant mild dizziness all day, especially if I slept lying on the right side with my neck bending due to a low pillow, then the next day will have more dizziness, made worse if bending my head forward then head left turning during the day.
Tinnitus/ringing in the ears only on the left side.
Very fatigue the whole day.
Foreign object sensation in the throat when I bend my head forward then swallow, I seem can feel the
tip of the styloid process.
Often have sore and inflammation only in the left side somewhere of the throat.
some weakness with a little tingling in my left arm and hand sometimes
My symptoms are mostly left side only, I’ve had these symptoms for around 1-2 years, have other
small/intermittent symptoms also, above are the major ones.

I had headache(the left back side of my head only) sometime, only when I used a hard pillow which poking my left side neck styloid process area. I found that if I keep my neck and head straight all day (not turn it, not tilt it, and not bending forward, even in the night with a vey low pillow) will help me feel a lot better with less neck pain and less dizzy.

One questions for my symptoms, do you know or any rough idea about each one of my symptoms above, most likely due to which specific cranial nerve, artery or vein is irritated? I thought my cranial nerves, artery and vein are all irritated somewhat, since my left styloid process is very long/around 5cm, but don’t know which one is irritated more and causing which symptom. Could you share your understanding about this, thank you! I only did CT without contrast, haven’t done any other scan to find out the details of artery and vein.

Have done following tests and treatments so far:

Tests done:
MRI Stroke Package(Plain): Brain MRI, Intracranial MRA and Extracranial MRA in Jan 2023.
MRI of cervical spine(Plain) in Jan and Aug 2023.
X-rays of cervical spine.
ENT endoscopy/flexible laryngoscopy and hearing test, showing normal in Oct 2023.
CT without contrast of neck (cervical spine) in Aug 2023.
CT without contrast of head and neck in Dec 2023.
Treatments done:
Cervical artificial disk replacement on 6th Jun and 20th Jul 2023.
Epidural steroid injection on C2-3 on 4th Sept.
Steroid injection on styloid process ligament on 31th Oct.

Previously thought my symptoms are caused by left side C6-7, C3-4 nerve root compression as shown on MRI, after ADR done, some symptoms are resolved, but above listed symptoms still persist. I had a steroid injection on my styloid process ligament on 31th Oct, It didn’t improve my symptoms a lot, but I think the injection is good in general, since I for sure have some imflammation around my styloid process, I often feel itchy inside, the steroid should help control the imflammation, so my symptoms didn’t get worse.

My left side styloid process is very long.

My right side stylohyoid is not very long, near 3 centimeters.

I emailed Yerelin, the medical assistant for Dr. Samji, with my images, CT report and symptoms etc. on 6 Dec, I choose Dr. Samji because I could get a earlier appoinment and surgery date with him, since he take ES as a priority and do more ES surgeries. Yerelin gave me an Eagles Consulation Handout as attached below in case you need this info, which requires a CT scan (head and neck without contrast) showing the measurement of the styloid.

I did the scan and mailed the CD of the CT scan with some other filled forms to Camino ENT aound 22th Dec, Veronica confirmed received all the documents and started the review on 4th Jan. Veronica confirmed that my case has been reviewed and approved for move forward with the consultation the next day, then I chose 2/8/24 3PM for the consultation.

Below is the report for CT Head Neck for styloid process and some images:

I’ve done the video consulation with Dr Samji on 3pm 2/8. Since I’ve prepared all my questions in advance, the consulation goes very well and finished in around half an hour time. Dr Samji is very nice, considerate and compassionate, explain things very clear and easy to understand. At the end of the consulation, he told me “don’t worry, we will take care of you”, which makes me feel very relieved.

Dr Samji mentioned that It’s the first time that he was referred to from Hong Kong. He explained to me about the symptoms, surgery, risk and expected recoery etc.

I’ve asked some questions, he answered as following:

Surgery:
Cut to skull base ? cut to only several milimeters remains.
Ligment part will be removed also since styloid process measures in 7.2cm in overall length ? he will remove 2 ligments(stylohyoid ligment and stylomandibular ligment) completely, since he found these 2 ligments will cause some symptoms also if not removed.
How many cases have you done ? more than 300 cases.
Should be low risk ? 1% chance affect 3 nerves, if so, after 6 months, will back to normal.

Symptoms:
My symptoms are quite typical ? yes
So after the surgery most of my symptoms are expected to be reduced ? yes, he seems mention I can start see symptoms change after 6 weeks. he seems to mention that pain of 90% of the patients disapear.
Expected recovery time for symptioms to reduce/go away ? 6 weeks, I asked this question, he also give the answer of 6 weeks. Here I think he probably mean I can start see symptoms significantly change after 6 weeks.

Dr Samji gave me the surgery date as 18th Mar, 14th arrive in the US, 15th pre-op, 22th post-op, and 23th flight back to Hong Kong. I will be paying cash, Dr Samji gave me a very reasonal pay estimate.

These symptoms have been with me for more than 2 years, I’ve seen a few chiropractors, ENT, trauma department, neurological physician, psychiatrist, neurosurgeon, orthopedics specialist, only when the last orthopedics specialist review my CT, and found my styloid process is very long and suspect I have eagle syndrome. ES is greatly affecting my life and work, I’m really happy to be able to do the surgery soon.

If you have ES, one question I’m very curious about and want to ask you is that, roughly in average how long is it that from you noticed some ES symptoms, till you got diagnosed, and till you got the surgury done? For the last one and half year more of mine, I almost did nothing but seeking diagnosis and treatments.

You will most likely notice some symptoms are gone when you wake up from surgery but others will be much slower to reduce/disappear. I found that about every two months after surgery I would notice significant improvement from some of the remaining symptoms i.e. at 2, 4, & 6 mos. then it slowed down so 9 mos was another land mark, then a year & beyond.

@Isaiah_40_31 has shared her recovery experience as above with me, what is your recovery experience of expected recovery time for symptioms to reduce/go away ?

Thanks @Isaiah_40_31, this wondful forum, and all your sharings, so I can have surgery with an excellent doctor soon!

Best Regards,
Siwen

[Jules]

Wow, your left side styloid is particularly long! Definitely good to get that out! Are you having just the left side removed?
Re your questions, there’s info in the Newbies Guide Section about which cranial nerves are commonly affected and the symptoms they cause, here’s a link:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Dizziness can be caused by either compression of the Internal Jugular vein, which increases the pressure inside the head (Intracranial Hypertension), or if the carotid artery is compressed- sleeping propped up a bit can help if it’s the jugular vein compressed. If an artery is compressed usually people find that the dizziness comes on suddenly with a certain head movement, and they may even faint. Dizziness could also possibly be caused by an irritated vestibulocochlear nerve, so without a CT with contrast we can’t say for definite I’m afraid, given your symptoms I’d maybe guess at the jugular vein compression being more likely…
You asked about symptoms & diagnosis- I had chronic neck pain from a whiplash injury already, but then started getting jaw, tooth & ear pain (more than likely the trigeminal nerve being irritated), I think I had that a year before being diagnosed, so I was quite lucky! The vascular symptoms started later, I asked to be referred to a UK doctor I found out about on here, and after about a 3 month wait I had a CT with contrast which showed bilateral IJV compression. The wait for surgery was then about 6 months, and a year later I had the other side removed. The vascular symptoms improved straight away after surgery, the nerve pain improved slowly but hasn’t gone away completely, it’s easily manageable now though.
I had trouble opening my mouth & chewing after my first surgery for just over a week I think, it was difficult to turn my head so I couldn’t drive for a few weeks. With my second surgery I didn’t have that at all, but I did have a weird feeling in my ear, as if concrete had been poured into it! And my hearing went for about 2 weeks. I didn’t feel too tired or anything after the first few days, but alot of people do.
I’m glad that Dr Samji has agreed to do your surgery, I’ll be praying for it to go well! And thank you for the update and info about what his office needs!
Best wishes

[Isaiah_40_31]

It’s been my pleasure to answer your questions & help you along your journey toward a solution for your symptoms, @Siwen. I’m glad you’ve found a surgeon you feel comfortable with but am sorry you’re having to travel so far for your surgery.

There is a series of YouTube videos called Two Minute Neuroscience which you can add the resource @Jules gave you to help you determine which cranial nerves may be causing your symptoms. There is one two minute video for each cranial nerve. The nerves most commonly irritated by elongated styloids/calcified stylohyoid and/or stylomandibular ligaments are the

facial
trigeminal
glossopharyngeal
hypoglossal
spinal accessory
vagus
vestibulocochlear (possibly)

To find the video for each one on YouTube, type Two Minute Neuroscience & the name of the nerve you want to research into the search box - for example: Two Minute Neuroscience Facial Nerve & the video about the facial nerve will appear for you to watch. These are very interesting, short videos. I found them very helpful.

I’m glad your surgery is date is very soon. I will pray for you to have safe travels to the US and for the best possible outcome from your surgery.

[vdm]

@Siwen , first, I’m glad you found a surgeon who is ready to help you with this debilitating condition.

I’m quite sure you will be in very good hands as Dr Samji is very experienced and does care about the patient, HOWEVER, you must know that at least in the past Dr Samji would (at least in some cases, but my intuition says more often than not) remove one of the lymph nodes in your neck in order to reach the styloid process (and yes, lymph nodes are important organs in your body, so you don’t want to simply remove them), also cut off one of the arteries leaving small surgical clips in your neck (some people have no problems with them, others can’t stand the sensation and in some rare cases allergic reaction to them), and finally, there are anecdotes that the surgery was being done while the patient was lying prone, e.g. on their stomach during the surgery as opposed to supine (on their back), which again according to some anecdotes may affect how the soft tissue settles down in the neck after the layers of muscles and skin are sewn back.

I’m telling you this ahead of the procedure so that you’d be aware of the risks. On certain other Eagle syndrome patient groups, there are at least a few patients who ended up with lots of new symptoms caused by the specific surgical technique that used to be used by Dr Samji at least in some cases (if not all).

[Isaiah_40_31]

I had my surgeries w/ Dr. Samji in 2014 & 2015 & do have surgical clips in my neck which he placed there. They haven’t bothered me. The other thing he does or used to do is dislocate the jaw during surgery so he has better access to the styloid. Some people have had an increase in TMJ symptoms post op from this. I did have a sore jaw for a few weeks post op, but as a person with significant TMJ problems, I have to say that since I’ve healed from my ES surgeries, my TMJ pain is totally gone & has been since my ES surgeries. Therefore, I conclude that in my case, the jaw dislocation was helpful not hurtful.

Regardless of surgical position (prone vs supine), surgical clips & jaw dislocation during surgery, I had good outcomes from my surgeries w/ Dr. Samji for the most part. I realize I am one of many who’ve seen him & don’t know what his overall success statistics are. All I can do is speak to my experience with him which was positive.

[Siwen]

Thanks @Jules, yes, my left styloid is very long, aournd 5 cm, think the ligment part below it is also partially ossified and can be seen on CT, and this time only to take the left side out.
Currently most of my symptoms are left side, I can say 90% percent left side, I only have slight upper neck pain on right side and aound 3 days of ear fullness/under water sensation last Jun becuse of a hard pillow. If my left side recover well this year, I plan to take out the right styloid next year, because I do see it is very likely to get symptomatic soon. Ear fullness/under water sensation is quite scary, so I don’t want to wait to get more symptoms then do it. I will ask Dr Samji about this in the pre-op appointment.

For the dizziness, thanks for the explaination, really good to know that. I do feel some pressure constantly the whole day in the left back of upper neck (near the C1-2 area), and lower occipital area. For the dizziness comes on suddenly with a certain head movement, I only experienced about twice, when I slept lying on the right side with my neck bending due to a low pillow, then the next day I have more dizziness, made worse suddenly if bending my head forward then head left turning during the day.

I’ve done Intracranial MRA and Extracranial MRA, the report as below, from the report, don’t see big issue of arteries caused by ES. I’ve not done any CT with contrast or venography yet.

My symptoms are generally worse in the first half of day, because when I sleep during the night, pillow will give pressure on the neck, symptoms will gradually getting better in the second half of day.

Could you give some similar explaination for tinnitus also, thank you! I’m about to ask Dr Samji about tinnitus in the pre-op appointment. A member on this forum has previously mentioned that Dr Samji sounded confident that he could fix her tinnitus issues. A neurosurgeon once told me that tinnitus is caused by abnormal nerve excitation. The Orthopaedics specialist Dr. Raymond Yip who did ADR for me seems show me the posterior auricular nerve when I asked him about my tinnitus, and I took 2 following pictures when he is showing me.

The posterior auricular nerve seems part of CN 07 Facial, I’m not sure if Dr. Raymond Yip is correct or not. I don’t know what is the nerve his finger is pointing in the first picture, maybe great auricular nerve, may vagus nerve.

The vestibulocochlear nerve is the eighth cranial nerve. Its cochlear branch is responsible for the special sensation of hearing, and its vestibular portions are involved in balance, spatial sensation, and posture.
Cranial nerve VIII brings sound and information about one’s position and movement in space into the brain. The auditory and vestibular systems subserve several functions basic to clinical medicine and to psychiatry.

I just checked that CN 08 vestibulocochlear nerve seems related to hearing/sound/auditory. It is above styloid process with some distance, don’t know if it could be affected by a elongated styloid.

Previously i thought C2 nerve also could cause tinnitus, but don’t know if styloid could affect C2 or not.

My tinnitus is a kind of high pitch constant “ing~ing~” sound, it’s not pulsatile sound with the rate of heartbeat. So i think it’s likely because of a nerve is irritated, instead of artery/vein. Dr Samji once gave a letter for applying the B2 Visa for medical treatment in the US, and mention in it that he will perform a nerve decompression for a specific cranial nerve for me. I don’t which cranial nerve he mean, I’ll ask that in the pre-op apointment.

Once a doctor told me nerves are a cord-like structure with multiple nerve fibres (also called axons) wrapped in layers of tissue and fat, covered on the outside by a dense sheath of connective tissue, the epineurium. I hope that sheath could provide a protection to inside, so inside is not easily to be damaged. If cranial nerve is affected by styloid, I hope the cranial nerve could recovey after styloid removed.

I once read about nerve recovery when I have ADR, and have the idea of like 3 - 6 months time to 1 year time for nerve to recovery if not severely damaged. I really hope that could work for me. I don’t know for normal ES patients like me, what is normally the extent of the nerve damage/injury affected by elongated styloid process ?

Thanks for you sharing your symptoms & diagnosis, you got diagnosed by different symptoms than me, I don’t have typical nerve pain symptoms as mentioned in wikipedia for ES: “Sharp, shooting pain in the jaw, back of the throat, base of the tongue, ears, neck, and/or face”. Good to know that vascular symptoms improved straight away after surgery.

Thank you very much !

[Jules]

Good that the MRAs didn’t show any compression…I’ve not seen the scans that you’ve done screen shots of, they look interesting, I certainly wouldn’t be able to comment on which nerves Dr Yip is pointing to. Tinnitus is complicated & can have several causes from what I’ve read; unfortunately it does seem to be common with ES & one which doesn’t always resolve with surgery, but hopefully yours will go. Definitely nerves can still heal up to a year after surgery, so it may take a while to see improvements.
I used a V shaped orthopaedic pillow, I found it helpful as it took the pressure off the sides of my neck, might be worth a try?

[Isaiah_40_31]

Another cranial nerve that is often irritated by elongated styloids & can cause tinnitus is the trigeminal nerve - Cranial nerve V. It does have fibers that extend into the ear though the major part of its innervation occurs in the face:

Neuroanatomy, Cranial Nerve 5 (Trigeminal) - StatPearls - NCBI Bookshelf.

As @Jules mentioned, we have had members who had recovery from tinnitus after ES surgery but others who didn’t. I’ve had tinnitus since I was very young & my ES surgeries did not change that. My ears are still very “musical”.

[Siwen]

Thanks @Isaiah_40_31 for sharing the Two Minute Neuroscience YouTube videos, these videos are really easy to understand, the information regarding what symptoms are caused if the nerve damage it provided at the end are really helpful. I’ve watched for all the nerves most commonly irritated by elongated styloids which you listed.
Thank you very much!

[Siwen]

Thanks @Jules @Isaiah_40_31 for the information regarding tinnitus, really helpful for me to do some analysis about my tinnitus!

The images that I’ve done screen shots of are not scans, these are just a 3D body anatomy application which shows the structure of all the nerves and arteries etc. around the neck and head. Okay I’ll try a V shaped orthopaedic pillow, thanks.

The Vestibulocochlear Nerve, Cranial Nerve VIII, if damaged can cause positional vertigo, hearing loss, and tinnitus.

From ES Information: Common Symptoms And Possible Explanations For Them, I’ve found that the only cranial nerve which causing tinnitus is the Vestibulocochlear Nerve, it’s also causing positional vertigo.

From 2-Minute Neuroscience: Vestibulocochlear Nerve (Cranial Nerve VIII) video, I can see Vestibulocochlear Nerve damage causes tinnitus and dizziness, which is quite conforming to my symptoms.

I also search online “which cranial nerve causing tinnitus”, and found the following page as the first page:

Neurovascular decompression of the eighth cranial nerve for intractable vertigo and tinnitus

Neurovascular compression (NVC) of the eighth cranial nerve (CN VIII) is one of many pathologic conditions that causes vertigo and tinnitus.
The results of factor analysis indicated that continuous low-pitch pulsatile and high-pitch monotonous tinnitus can be caused by NVC of CN VIII. Tinnitus is accompanied by various degrees of sensorineural hearing disturbances, and it can be cured by neurovascular decompression, if hearing is not yet severely impaired.

Above lines are taken from the page, my tinnitus is indeed high-pitch monotonous tinnitus as I previously stated. It also mentioned that “Tinnitus is accompanied by various degrees of sensorineural hearing disturbances, and it can be cured by neurovascular decompression, if hearing is not yet severely impaired”, I really really hope this could happen to me, my hearing testing showing normal in Last Oct. If it’s just Neurovascular compression which can cause tinnitus, the vestibulocochlear nerve shouldn’t be severely impaired. After all a elongated styloid most likely causing some compression to surroudning nerves instead of direct damages. But don’t know if ES can casue Neurovascular compression of Vestibulocochlear Nerve or not, or cause other kind of compression to Vestibulocochlear Nerve. I just did a search on this forum, “vestibulocochlear nerve can be impacted/irrated/compressed/affected by ES/styloid” are mentioned multiple times/places, and that facial nerve and vestibulocochlear nerve are very close to each other, .

What nerve is compressed in tinnitus?
Microvascular compression of the vestibulocochlear nerve is known to cause disabling tinnitus and vertigo. A review of the literature shows that the compression is usually located in the cerebellopontine angle, and that it is usually caused by an artery.
Which cranial nerve is responsible for tinnitus?
The diagnosis of NVC of the eighth cranial nerve was confirmed in all patients. This condition was found in only seven of 114 patients with hemifacial spasm alone, indicating that NVC of the eighth cranial nerve is one of the causes of tinnitus (p < 0.001, chi-square test).

Similar answers like above can be easily found in Google.

Dr Samji once gave me a letter for applying the B2 Visa for medical treatment in the US, and mention in the letter that he will perform a nerve decompression for a specific cranial nerve for me. I don’t know which cranial nerve he mean, he probably means vestibulocochlear nerve, since it’s quite conforming to my symptoms and my symptoms for other cranial nerves seems not obvious. If i can ask only one thing for Dr Samji, I will ask him to fix my tinnitus, I really hope my tinnitus to be cured.

Dr Samji has asked me some questions about my symptoms, I now believe that he was trying to figure out which one of my cranial nerve is affected. He asked if I have intense pain in throat, it’s a symptom if Glossopharyngeal Nerve is damaged.

For members whose tinnitus symptom went away completely after a styloidectomy & others where the symptom became reduced but not absent, did that normally happen suddenly after styloidectomy or gradually improved during some period of time after styloidectomy?

Thank you !

[Kellysehn]

Hello, first thank you for sharing. I am wondering approx cost for surgery please as I will be self paying as well. Thank you

[Isaiah_40_31]

@Kellysehn - Welcome to our forum! Are you considering coming to the US for surgery or are you planning to self pay in CA? We can give you some estimates of US doctors but don’t know about what doctors in CA are charging.

[Kellysehn]

Hello thank you I am Canadian considering coming to the US for surgery or even Mexico. I am having no luck here in Canada.

[Alice]

@Siwen hi!

I am also considering Dr Samji.
Can I ask for an update?
Did you have your surgery with Dr samji?
How did it went?
How are your symptoms now?
Did he cut any artery and put any clips in the body?

Thank you

[Isaiah_40_31]

@Alice,

Siwen did not end up having surgery with Dr. Samji.

Dr. Samji did my ES surgeries in 2014/15, & afterward, I found out he uses surgical clips (1 for each side) which wasn’t a big deal to me because they haven’t bothered me. However, the other information I learned which has been more impactful me & some of his patients is that he does (or at least used to do) surgery w/ his patients face down & head turned to the side he operates on. He dislocates the jaw to gain better access to the skull base then resets the jaw joint after doing the styloidectomy. This causes a stiff & sore jaw for several weeks post op. For people w/ bad TMJD, it has caused their symptoms to get worse. In my case, even though I didn’t know about the jaw dislocation until several years after my two surgeries w/ him, it actually stopped my TMJD joint pain.

I had a good outcome from my surgeries w/ Dr. Samji, but as is the case with all surgeons, there are some patients who didn’t get the good results I did. Dr. Samji does not do vascular decompression, and sadly, doesn’t even acknowledge that vascular ES exists. I’ll be getting my IJV decompressed later this year as it turns out my left IJV is squashed between the remains of my left styloid & the TPs of C1.

My recommendation is, if you’re interested in having him do your surgery, have a video consult with him, & ask him for specific details about how he does his ES surgeries. He is very experienced & has done several hundred of them. It’s possible he’s changed his technique over time. He does not provide the details I’ve given you here to his patients unless specifically asked & he doesn’t give that information in his surgical reports or at least he didn’t used to.