My sister story with ES

Hi everyone,
My sister 39 old asked me to share her story here in this forum maybe someone can recommend her to do surgery or not, Sorry for bad grammar i translated it with Google translator.

Will update this post with more information about the surgery she made in details.

She wrote :

The first feeling of improvement was immediately after waking up from the operation.

I felt a great change in my heart, and the heartbeat was almost hidden and I did not feel it, an improvement rate of 100%, although I was sleeping on one pillow, and I felt a strange relief in the body, although the bout of eye pain and headache were strong after waking up From the process, thank God.

I had a very turbulent heartbeat, it increased very much as soon as I put my head on the pillow, I felt my heart throbbing strongly, and as soon as I sat it calmed down immediately, and also if I moved my head in certain directions during sleep sometimes it would twitch and sometimes in a certain position it would stop twitching).

After a while, I noticed a clear change while walking. I no longer felt a rapid heartbeat or I was out of breath from walking, thank God.

After about a month and a half, I noticed that the heart disorder returned by about 30%, especially when sleeping, and astonishment while walking or making an effort.

  • About a week after the operation, I noticed a change in the sensation in the ear from the inside (I have a lack of sensation in some areas on the same side, external to the skin and internal.

I tried to move the side to make sure, and I found that I began to feel and move my ear and felt it, and there was a sensation of something that was almost dead in my ear from the inside, as if life had come into it, and I noticed a clear change in it.

But the improvement did not last for long. After a period of time, I do not remember how long it was. I tried to notice the change where it reached, and I found that it reached a certain limit and stopped.

I had a feeling like being stabbed by a knife, under the eye, with tingling and heat during bouts of pain. The doctors did not know the reason for this pain, and they all said that it was not within their specialties. I was directed to more than one specialty to treat it, but I did not find an answer for the cause of the pain. Pain Almost disappeared after the operation.

  • The improvement is present so far, thank God, the feeling of pain has returned, but not with the same intensity.

I had severe bouts of vomiting during bouts of pain. Vomiting lasts for a whole day, severe irritation in the stomach. Currently, this symptom has disappeared since the operation until now. I only get a slight feeling, but I do not vomit, thank God.

After weeks, I noticed that the numbness and tingling that was in the face, throat, and under the tongue had disappeared, and even the tingling in the head (I felt sudden tingling in the head from the inside and the left eye), especially the one on the left side. The front of the head in the brain felt tingling. In it .

I was feeling something stuck in the neck, a swelling in the neck from the inside (which appeared suddenly in recent years) on the left side, the swelling subsided a little, and swallowing became better without a lump.

After about two months, I noticed:

A radical change in my condition, thank God. The headache almost disappeared. I felt stronger and healthier in my body (I used to feel like failure from the slightest effort).

  • I was very tired and affected (I suffer from bouts of pain) from the cold and exposure to cold breezes or air conditioning, even if it was a simple direct exposure. I felt tingles and pain in my face and head.

It has all diminished or almost disappeared, thank God.

  • I lived almost two weeks without taking a sedative. I lived a very normal life, thank God.

But after about two and a half months, the symptoms usually gradually,

*- The disturbance in the heart returned by 30% when prostrating and sleeping on the left side.

*- Numbness returned (the left side) in the throat, lighter in strength than before, but in a wider range after the operation, half of the tongue and the base of the tongue, the roof of the throat and the beginning of the pharynx, the jaw bone, and certain areas of the face, the outer skin, with a lack of sensation.

*- Headache attacks and related symptoms such as eye pain, heart disorder with a flutter, failure and general weakness in the body, dizziness, symptoms increase when moving the head or bending and when eating.

  • The effect returned from the cold and muscular effort.
  • Severe sensitivity with toothache, medically, there is no problem with the left side.

*- Pain and numbness under the jaw and ear, ascending to the jaw joint until it reaches under the eye (like stabbing a knife, but lighter than before). With failure and numbness, and even my left hand fails.

There is a strong sound in my ear, buzzing and humming, as if a river flows through it on the right side.

*- Since the operation until now, sometimes I feel that the voice started to be very sharp and strong, and from the strength of the voice, I feel that the nerves of the whole body are affected, and this sometimes (I had it continuously during severe pain attacks), thank God, and now it comes to me even without a pain attack.

*- I am currently sleeping on 3 pillows or semi-sitting (after the operation I was able to sleep on only one pillow, thank God),

  • And when I try to sleep on one pillow, a headache begins and a strong pressure in the head, as if the blood in the whole body is in my head, and when the level of the head is raised, the symptoms immediately subside, thank God.

*- Chronic and strange pain in the neck from the back, and because of that I have insomnia and I do not sleep continuously. My sleep is intermittent, and there is no comfortable sleeping position."

Thanks for reading and i will add or update more info as i said later on.

PS: she did her first surgery and the doctor internally removed 2cm of styloid out of 4cm he did remove the left tonsil to acomplish this.

I am trying to add images but seems like i can’t


Update :

This is the beginning of her pain story, since it’s a lot i will hide it so that only interested members/staff can read it


The symptoms began in 2006 after a treatment session for the root of a tooth. I noticed an intermittent headache that began in the form of a pulse from behind the head until it reached the face, and the pain began to focus on the left side, especially the left eye and on both sides of the head, with irritation to the stomach (vomiting). With every bout of pain with failure and dizziness.

I went to an ear, nose and throat doctor, and he asked for a picture of the sinuses, and the result was normal, thank God. He directed me to a neurosurgeon, and after the examination, he asked for a resonance image on the head, and it was fine, and he asked for a neck x-ray, and he did not find anything. He requested an analysis for vitamin B12, and its percentage was It is very weak, so he gave me treatment and it increased to the normal level.

He gave me painkillers again, but they never worked for me. The pain continues and does not respond to painkillers. The pain attacks increased, as well as the symptoms: severe coldness in the body with perspiration and failure, dizziness, headache all over the head with tingling inside the head, I feel that my eyes will come out of their place, the veins of my head will explode. From the pressure, severe irritation in the stomach, and the food does not settle in the stomach, even saliva is excreted in cases of severe headaches, and I rest after each vomiting process. I feel calm in the body, thank God.

  • I visited many doctors, including doctors - internal nerves, ear, nose and throat, heart, eyes, bones, neurosurgery, internal medicine, psychiatry, rheumatism, general surgery,
    I took many medications and the diagnosis was as follows:
    Complicated migraine (because the symptoms are atypical), unusual.
    Fifth nerve pain.
    Sinus sensitivity.
    Chronic muscle tension in the neck and face of unknown cause.
  • Temporomandibular joint disorder.

In 2015, I went to a dentist, and he discovered that I had an atrophied wisdom tooth under the gum and pressing on the nerve (left side). Staying up or getting up early, because the headache increases, I felt some change.

I moved between clinics to find the cause of this headache, but to no avail. Even painkillers and hypnotics do not work during pain attacks.

  • I have to sleep semi-sitting, because the headache and dizziness increase when my head goes down.
  • Some things that help relieve pain somewhat.
  • I relax when I put a hot water bag on the face and neck.

  • When drinking hot liquids, when they pass through the throat, I feel relief, so more of them.

  • I relax when I eat salty food.

  • When I vomit, I feel relaxed and the body calms down .

  • Pain attacks increase when
  • Exposure to cold, whether the face or even touching something cold with my hand, especially the left hand. I feel direct signs of pain in the left eye with tingling in the head.

  • When replacing muscle effort, even if it is simple.

Work that requires focus.

  • Bathing .

  • Feeling hungry from the stimuli of pain. I feel strong pain signals coming from the stomach to the head. Severe tingling in the head (from a medical point of view, the cause is unknown).

  • Sometimes, if I eat after being very hungry, I feel a sore throat and find it difficult to swallow the food, because the process of eating and swallowing causes pain and irritates the stomach.

  • (In cases of severe pain, I cannot take anything, even liquids, because the pain increases when it passes through the throat and chewing irritates the pain).
  • During severe bouts of pain, I feel agitation inside the body, as if a turbulent sea is inside me. I do not know the reason for this feeling. I feel that I am going to die.
    But after every vomiting (vomiting) I feel a kind of relief immediately. Vomiting may reach more than 4 times a day in cases of severe pain.

  • In the year 2018 I moved to dental clinics, because I had pain and sensitivity in the teeth with chronic periodontal pockets on the left side, and swelling in the cheek, there was no response to the treatments, the periodontal pockets were returning and the tooth sensitivity was chronic,

  • In 2019, I visited a number of oral and maxillofacial surgeons, and the diagnosis was different:

  • Chronic muscle tightening in the face and neck (of unknown cause).

  • Temporomandibular joint disorder.

  • Eagle syndrome.

  • Jaw mismatch (bad occlusion).

  • Erosion in the jaw joint.

  • Some of them advised me to visit a psychiatrist.

Many treatments have been used to treat the problem of the jaws, including:

  • 7 occlusal splints, including the lower jaw and the upper jaw, and one that includes the jaws.

Botox injections into facial muscles, to treat neuralgia in the face.

  • Physiotherapy sessions .

  • In 2020, I washed the jaw joint under local anesthesia (left side).

Less than a month later, and during the bouts of pain, I took an analgesic, and it was the first time that I felt that there was something touching the pain and calming it down. I felt a response to the analgesic, and the symptoms relieved me well. They did not disappear completely, but there was a clear improvement in the symptoms.

And since 2020 to today, I take painkillers almost daily.

Mobic 7,5mg-

DImra -


co- codamol 8mg

Gabapentin 200mg

Topamax 50 mg

Neurorubine Forte

Vitamins B1, B6 , B12


Pentapragle 20mg

Dexamiltion 4mg

Arityplaline 25mg

Becogye -s-

Neproten 25mg

Tri - B

Mascadol Tab

Amytril 25mg

Baclofen 10mg

Indometacin 50mg

Lamactil 50mg

Divido cop 75mg

Amitiriptaline 25mg


Stugeran 25mg

Librax 5mg

Tegretol 400mg

Tophranil 25mg

Lyrica 75mg

Coltranyl Injection

Doliprane pro 325mg

  • i started taking medication that requires no prescription

-saridon 50mg

-reality extra Tab + GEL

-Naproxen 500mg.

  • At the beginning of the year 2022, I visited a maxillofacial surgeon, and he noticed during a panorama image that extended in the auricle, and confirmed during palpation of the tonsil fossa that I had Eagle syndrome, and that the length of the auricle might be compressing some nerves and vessels.
    He coordinated with an ear, nose and throat surgeon to perform an operation to shorten the styloid,

The operation was on 5-2022
The surgery was oral, the doctor removed the tonsils, then shortened the bone on the side
The bone was about 4 cm long, about 2 cm was removed, and the bone was pressing on the auditory nerve and the ear nipple from the inside.

The operation was only on the left side, because the pain was severe on the left side.

  • There is pain on the right side, but not the same as the left side, hearing impairment with strong buzzing in the ear (there is a hole in the right eardrum), swelling in the cheek, sometimes a pulsating headache behind the head and on the side of the right eye,
    Sudden weakness of vision (both eyes) occurred after using the mouth splints. I noticed blurry vision. It increases when bending down. The blurriness increases a lot, but when sitting, it gradually decreases. Vision improves, but the blurry does not disappear (medically, there is no defect in the eye, thank God).

  • On the day of the operation, I was discharged from the hospital on the first day. Immediately after the operation, I was very tired, because the feeling of hunger and cold intensified the pain, and the operating room was cold.

  • I was asked to drink more fluids, and the more I drank, the pain in my face and eyes increased. The more the pain subsided, as soon as I drank the juice, the pain increased.

  • The first thing I noticed after waking up from the surgery was that the heart rate calmed down a lot, and I no longer felt any tension in the heart. There was great calm in the chest. I was breathing with great relief, thank God.

  • I felt strange relief despite the headache and eye pain,
    The first days of the surgery were tiring. I slept semi-sitting and the pain in my throat was severe. I had more episodes of sleep apnea, but thank God, after a few days, when I took painkillers, I got relief.
    The heartbeat is almost stable, but sometimes I feel a burning sensation in the heart.

A week after the operation, I noticed a change in sensation on the left side (I have a lack of sensation on the left side, in the face and neck from the front and back) I noticed, I felt that the sensation began to return inside the ear,

  • After exactly two months, I was seeing a clear change in my condition, I felt that the headache had subsided and the pain signs in my head had also decreased.
  • I no longer took painkillers, and I was afraid and waiting for headache attacks. I was making an effort and was exposed to cold current. I did many things that I used to get tired of, but I got a drastic improvement. Natural and I was very happy with the development that took place.

  • I used to always cover my head with a hat, it kept me day and night, and I couldn’t do without it because I felt a headache immediately when I took it off, but I managed to live without it for hours.

  • Hunger used to be one of the triggers of pain, but this has changed a lot, and I can bear hunger for hours and not get tired if I eat after severe hunger, thank God.

  • The muscle tension relieved me, I felt a relief in my neck, I had used many treatments, creams, physical therapy sessions and medicines, but the result is very, very different after the surgery, thank God.

  • There was a clear and radical change in my condition.
  • After 3 months, I noticed a change in my condition, I was living normally, and there was nothing strange that I did. I noticed that I had numbness in half of my face and throat, increasing day by day, on the left side.
    Severe dryness in the throat where the operation was performed. I feel something in the throat.
    The pain began to return gradually (eye and neck pain).
  • The heartbeat is also not what it used to be, and I feel that it has returned by 30%, with pain in the heart and heartburn.
    (I noticed that the heart beats as soon as I lie on the bed and when I sit it disappears, and when I wrap the neck in certain positions, it decreases or disappears and returns)
  • Tingling in the throat when talking or turning to the left side, I feel that the bone itself is touching my throat from the inside.

symptoms and bouts of pain began to return,

Even with the return of symptoms, I feel an improvement in my condition and a continuous change compared to my condition before treatments and operations, an improvement of 70%, thank God.
I was almost bedridden and could not exert muscular or even mental effort, but now I have improved a lot, so I want to perform another surgery to remove the bone from the base The skull because I feel that there is still pressure on the nerves and veins.

At present, the numbness in the face has subsided and sometimes increases when I exert effort, and I feel pain under the left eye that resembles a stabbing knife, extending to the jaw joint, and the pain extends to the top of the head, from the side of the eye to the middle of the head, but it is less intense than before.

  • Heartbeat There is a disturbance of 30%, and it increases when sleeping and neck movement in a certain way.

Pain under the ear, jaw and in the neck from the front and back, and weak sensation around the joint of the jaw, ear and neck from behind.

I used to feel a great urge to vomit (vomiting) during pain attacks, now this symptom has disappeared since the operation, a slight feeling sometimes during pain attacks, thank God.

Current symptoms:

  • Tingling, numbness, and burning in the left side of the face, the base of the tongue, and the neck, and sometimes sudden tingling inside the head and in the eye.
  • sometimes headache with dizziness,
  • Spasm under the tongue and jaw muscles.
    Pain in the back of the neck when sleeping, and sometimes I can’t find a comfortable sleeping position. I sleep semi-sitting with a blanket supporting the neck, because I feel relaxed and the headaches lessen, and the heartbeat improves.
    Thickness of saliva.
    Muscle tension in the neck.
  • I do not know if the doctor smoothed the bone after shortening it or not, because I feel a tingling in the throat when speaking and turning.

The operation was on 5-5-2022.
I had the operation for about nine months.
As for the medicines mentioned by the supervisor, I used them in the past, but the side effects were tiring and I could not continue taking them. Gabapentin caused involuntary spasms during sleep. The dose was 800mg.

  • Amitriptyline I tried taking it in different doses 10mg, 25mg, when I was following up with maxillofacial surgery doctors, but it caused me side effects that I could not continue, it caused me to feel sleepy all day, and I could no longer concentrate. His symptoms, even though he took it a lot and it didn’t cause them.
  • Lyrica I also took it, but for a very short time, because of its symptoms, it caused me double vision and imbalance, so I could not continue.

And this is what annoyed the doctors when I told them that I could not take the treatment because of its side effects because I had tried a lot, so that one of the doctors when I showed him my case and attached to him the list of medicines that I took, he said to me, all the medicines known among us as neurologists you have taken, I have no choice for you but Amitriptyline while staying away from anything that causes pain.
As for the headache, it is present, but not on a daily basis, when pain attacks when exerting exertion or exposure to cold, as well as dizziness, tingling, numbness, irregular heartbeat, and shortness of breath.

As for the Plavix treatment, I did not take it before, but as for blood thinners, I took some kind of it in the past, but before all the surgeries.
As for the right side, its length is shorter than the right side. I do not know how long it is. There is pain, but it is not the same as on the left side. The left side is more painful.
There is a hole in the right eardrum, and I always hear a wheezing and whistling sound with hearing impairment, and sometimes a pulsating headache behind the head and the side of the eye with blurry vision.
Thanks for your responses.

Hi Zekri!
I couldn’t see the image you posted, if you use the upload tab above the text box would that work?
You’ve done well telling your sister’s story & translating it, but just to check that I’ve understood right, your sister had surgery & was seeing improvements, but now some symptoms are returning, is that right?
There can be a few reasons for this- it could be the usual ups and downs of healing, as we do see sometimes with people that once they get back to doing more it upsets the healing and sets symptoms off again. Not sure how long ago her surgery was, but the nerves especially can take months to heal, even up to a year. Some of the symptoms- the tingling, stabbing & toothache- sound very likely to be nerve pain, so if they’re still troubling your sister then there are medications she could take for that (Gabapentin, Lyrica, Amitriptyline for example available in the US & UK, not sure what they’d be called in Libya)
It does sound as if your sister could be having vascular symptoms, the dizziness, headache laying down etc I’m not sure if these have gone? If they have, that’s great, but if not it could be that there’s still some swelling taking it’s time to heal, or that unfortunately the blood vessel which was compressed by the styloid process perhaps hasn’t been able to fully re-open. Sometimes members have needed to have a balloon inflated in the blood vessel to re-open it, or a stent put in to keep it open. Some of our members have also been helped by taking an anti-coagulant medication like Plavix which helps thin the blood.
As well as it perhaps still being early days for healing, sometimes with surgery if the styloid the other side is elongated too, it can start to cause more symptoms, does your sister have symptoms from the other side? And very rarely we have had members who have had cross over symptoms- so they feel pain in the opposite side to where the styloid is! So that might be something for her to consider, if both styloids were long.
If surgery hasn’t helped, it can be that the surgeon didn’t remove enough of the styloid to help stop symptoms, but given that your sister has seen improvements that may well not be the case here.
So it might be worth her taking it a bit easier for now & see how things go the next couple of months?
I hope that this helps & best wishes to both of you


OP was updated

Thank you Jules, Yes she had the surgery maybe 9 months ago, I will try adding all the images she sent me and i will update my OP and include the story before the Surgery.
Thank you again and thanks to all the staffs here.

Seems like i am not allowed to upload images here yet, but here’s the image URLs :

Remove spaces between “https :// .net”


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post deleted by author

Wow! What an experience you’re going through and I hope you start to feel some relief. That being said… it sounds like you may be suffering from some sort of Neuropathy or Neuralgia. Neuropathy is when the nerve itself is damaged usually from some sort of trauma. Neuralgia is much more broad and can is described as “Nerve Issue” rather than Nerve damage. This is because in some cases of Neuralgia the nerve is functioning just fine but is catching interference from an unknown source. In some cases that source can be a vascular compression or in people with wings (eagles syndrome) that compression could be from the styloids.

It’s interesting that you are feeling the strong sensations with a slight gust of cold air. This is a tall tell sign of Trigeminal Neuralgia. This condition mostly originates at the base of the skull usually by an arterial loop that is compressing the nerve root. Pain can be magnified if you have this condition AND eagles. For example: you can have slight arterial compression, but when coupled with eagles, the pain may really kick into gear.

There is another form of Neuralgia that seems to fit alongside your respiratory system issues. Glossopharyngeal Neuralgia is less common, but patients describe heart palpitations, disruptive breathing cadence, dizziness. This is because the Glossopharyngeal nerve is very close to the Vagus Never which controls many of these automated systems we have.

Vascular compression is also something to explore. Your vascular system might be compresses somewhere by swelling/styloids/or other common structural items such as tight muscles or even your hyoid bone.

Course of action:

Request an MRI of the brain with CISS sequencing. This will give the radiologist a clear view and see if the nerves are being compressed at the root.

Ultrasound of the jugular.

Best and good luck!


Thank you so much, She did like 5 MRI scans in the last 12 months recent MRI
with contrast not sure about the one you mentioned but will definitly look in to it.
Here are the images

1 Like

That is one long, very pointed styloid! In the bottom picture it looks like your sister’s internal jugular vein might be compressed. If that’s the case, and since her surgeon didn’t remove her styloid to the skull base, she may still have compression of her IJV which would explain at least some of her current symptoms. @Jules also gave additional information in her post about what can be done for a vein that doesn’t stay open after the compression source is removed (i.e. ballooning or stenting).

It’s hard to see the length and angle of your sister’s right styloid to determine whether or not it might be contributing to her symptoms now. Since her symptoms are strong on the right side, I suspect the right styloid is likely causing problems now. It is not uncommon for symptoms caused by the remaining styloid to get worse after the first styloid is removed & so removing it also is necessary for more complete recovery from ES. Are there any images that show the right styloid more clearly?


Thank you @Isaiah_40_31
she replied :

Thank you for your responses. As for the doppler imaging, I made an appointment next week to perform a dynamic doppler procedure to see if there is pressure on the vein.
As for the magnetic resonance image, I did an MRI scan with contrast on the base of the fifth nerve in the brain, and the result was that the nerve at the base was healthy, Thank God.
But I don’t know if an MRI image of the cranial nerves is available in my country, but I will look for it.
Thank you.

1 Like

If it was 9 months ago, then there should be a reasonable amount of nerve healing by now…it’s certainly worth her trying nerve pain medications like I mentioned now if she hasn’t already. As @Loumango says it could well be Trigeminal Neuralgia- it could be caused by a blood vessel rubbing on the nerve, the MRIs which can show that are also called FIESTA MRI. Or it could be that the nerve was damaged by the styloid…
I hope that your sister can get some help soon!