Hi!
First, I would like to thank you for this site where people with this rare disease can find some relief. Please forgive me for my bad English.
My journey began in 20 months where I start to feel a series of strange symptoms and at first without explanation.
The main symptoms are dizziness, vertigo, pressure in the temporal region, headache, fatigue, feeling of something stuck in the throat, pain and stiffness in the neck, pain and numbness in the jaw, vision troubles and occasional tinnitus on left ear.
The intensity of symptoms ranges from 5 to 10 on a scale of 1 to 10 with no explanation or reason for the oscillation. The symptoms were getting stronger and more frequent, so I started to look for answers.
I went through medical specialists from various fields such as orthopedics, neurology, rheumatology, infectiology, sleep medicine, etc… I did more than 200 blood tests more than 20 imaging tests and several others such as urine and saliva. All the results returned normal.
I kept seeking and no one gave me any answers or hope. One of the neurologists even advised me to go to the psychiatrist.
I removed all foods with gluten and lactose, cut alcohol (despite only drinking socially) and cut caffeine. No change in the symptoms after 9 months maintaining the diet.
In one of the medical consultations an otolaryngologist who was evaluating the possibility of a septum deviation surgery requested a CT scan of the paranasal sinuses.
When I received the result of the exam an observation was reported: Elongated styloid processes, associated with calcification of the stylohyoid ligaments with about 5.3 cm extension on the left and 5.2 cm on the right.
I returned to the otolaryngologist who evaluated the exams and said that the elongation is just an anatomical variation and that I should not worry about that. He recommended that I go to a dentist specializing in DTM to make a mouthguard. Following the recommendation, I put the exams aside, went to the dentist and started treatment with the mouthguard.
After 30 days of treatment with the mouthguard the symptoms continued and even worsened and those observations in the CT scan of the paranasal sinuses do not got out of my head. I had to be sure that it was indeed an anatomical variation and that it was not causing my symptoms.
I researched the ES in several international sites because the information in Brazil is non-existent and after understanding how the disease is rare, I realized that I would need to find a doctor who understood the subject or else I would not have the answer I was looking.
After researching a lot, I found an ES studies published by a Brazilian doctor. I searched for the doctor’s name and for my luck he attends in an office in the same city where I live.
I scheduled an appointment expecting to confirm that the exam results are just an anatomical variation, but when the doctor saw the exams, he asked me about the symptoms, and I told him everything. He said that many of the symptoms are probably related to the lengthening of styloid processes and indicated surgery as the only effective treatment.
He did a simple test and put the fingers in the back of my mouth, and I felt pain on both sides when he pressed.
He is a neck and head surgeon and has performed many such surgeries. I was apprehensive and relieved at the same time because I finally had a possible diagnosis.
He was honest and said that the only way to know if it is the ES that is causing the symptoms is doing the surgery.
I entered the request in my health insurance and I waiting for confirmation of the date that should be at the end of June.
I am a little apprehensive and I would like to know from the users about the post operative. How was the pain? How long to start feeling better after procedure? How much the dizziness and vertigo improved?
I read some topics from some users who reported dizziness and vertigo and who improved after surgery, so I am hopeful.
Sorry if I look cold English is not my primary language and my writing probably don’t truly reflect what I’m feeling.
Thanks a lot!
You did an EXCELLENT job of communicating your situation. There are many people w/ English as a first language who don’t write as well as you do.
First let me say that you are very fortunate to have found an experienced ES doctor so close to home. I applaud your diligence in researching until you found the right medical professional to help you. Your styloids are significantly elongated. I’m so glad you found help!
Some things you should know before surgery are
Does the doctor do surgery through your throat (intraorally) or through your neck (externally)?
If he does intraoral surgery does he just cut the tip off of the styloid or does he shorten it as far as possible (cutting it back to the skull base is the best, & this is most easily done by the external surgery). If he does not cut the styloid all the way to the skull, make sure that he is willing to smooth off the end of the bit of styloid that remains before ending the surgery.
Since you mentioned you also have calcified stylo-hyoid ligaments, I will assume that he does external surgery because these are not easily accessible via intraoral surgery. Ask how much of the s-h ligament he removes (all of it from the tip of the styloid to the lesser horn of the hyoid bone is the best).
Will he do both sides at once or require 2 separate surgeries? Many of the more experienced ES doctors in the US require bilateral ES to be treated in 2 surgeries as swelling in the throat post op can be quite significant. Only doing one side at a time is safer.
It’s good for you to know the details of how he will do the surgery so you can mentally prepare. Most surgeons who go through the neck make a nice incision along a neck crease so when it’s all healed it can barely be seen. Nerves & vascular tissues can be monitored during the external surgery & the surgeon has greater access to the styloid process & the stylohyoid ligament than with intraoral surgery, however, many people have had successful intraoral ES surgeries as well.
In regard to your questions about surgical recovery & reduction of symptoms, after your surgery, you may notice immediate reduction or absence of some of your symptoms while others remain. It can take up to a year for nerves and vascular tissues to heal, but you’ll be feeling pretty good at 6 -8 weeks after the surgery (if only one side is done at a time). Recovery takes longer if both sides are done at once. You may notice some symptoms come and go after surgery. This can happen for several months but usually those symptoms fade away with time & are finally gone forever. People w/ vertigo and dizziness have had very good results w/ those problems disappearing after surgery but as I said before, it may take a little time.
Another note is that if your doctor only does one side at a time, the symptoms caused by the other side often flare up after the first side is done. We don’t know why this is, but it’s been fairly consistently noted among the members of this forum who have had bilateral ES. Because of this, some people feel the surgery has been unsuccessful, but that is not the case. The second side will need to be done for all symptoms to go away or be reduced so they are less bothersome.
Because there are a lot of nerves in that area of the neck, one or two can become irritated during surgery causing problems for awhile post op. The most common post op troubles are a drooping lower lip and/or tongue not working just right and/or first bite syndrome. These problems usually go away as you heal but can take several months to do so.
I had the tongue problem and first bite syndrome. I have to say I have no regrets for having surgery even with these problems afterward. Having my styloids removed gave me my life back. I’m so thankful to be able to do the things I enjoyed before ES symptoms slowed me down.
Hopefully other people will join in & give you any information I forgot or add other points of view.
I think it’s pretty much been covered! I had dizziness/ constant off balance feeling, & that improved alot within a few days once swelling went down. The nerve pain has improved, but that took longer. I had some first bite, not too bad. But the second side did worsen, so I didn’t feel the full benefits until I had the second surgery.
The first surgery was a bit harder than the 2nd; it was painful to open my mouth wide & to chew, so I had smoothies & soft foods for a week or 2. It was also difficult to turn my head afterwards, so I couldn’t drive for 3 weeks, lifting was also painful- not sure what you do for a living, but take that into account after surgery.
There’s lots of info about what to expect after surgery you can search for on the site.
Hope you get that date soon, & well done to you for finding out about a doctor yourself.
Hi Swimmer - I had vertigo and balance issues for 12 years before having both styloids removed. I had both styloids removed intraorally at the same time in December 2017. The surgery resolved most of my issues with balance. I could not turn my head to the side without going into a spin. I could not drive at night due to oscillopsia. If I tried to bend down to pick something up I often fell over. I could not walk in the dark at all. I have improved significantly since the surgery. I drive at night and bend over without falling over. The swimmy-head feeling is completely gone. I can stand on one foot. I have not totally regained the degree of balance I had in 2004, but that may be related to age and level of physical fitness. My recovery was quick. 2 weeks with difficulty eating solid food and maybe 6 months before swallowing was back to normal. I still have some difficulty with meat - I have to pay more attention to the size of bites I take. The surgery was completely worth it for me, though - getting rid of the swimmy-head and being able to drive at night gave me my life back.
I found bone broth to be the best post-op food. I had prepared a few weeks worth before the surgery and froze it in single serve containers. Tried everything else - protein shakes, ice cream all made my throat feel clogged. So, prepare before surgery with easy to swallow food and ice packs for pain relief if the surgery is intraorally.
I don’t have any post op wisdom to give you yet as I too am awaiting surgery but this site is loaded with incredibly helpful people and information. Your English is excellent
Know that you are not alone, wishing you the very best!
Shalom Swimmer, I am so glad that you found a doctor who knows about ES. Being diagnosed is the hardest. When doctors cannot find what is wrong, after they have done bazillion tests, they send you to a dentist or a psychiatrist! It took 17 years for me to finally get diagnosed.
I had the surgery through my mouth and they removed my tonsils because they were in the way. My styloids were removed where they started, at the base. I did not have dizziness, heart problems, or some of the problems on this site have had. What I did have was having a sensation that something was under my tongue, and a poking in the back of my throat. It was hell on earth.
I finally got diagnosed and a week later, I had the surgery. You will have allot of saliva, more than usual so, you will have to walk around with a cloth. Your salivary glands go nuts because someone has messed with your throat. It took me about 1 month of that. I slept sitting up for about 2 months. I healed slower than most because I am a diabetic. I ate very little and I mostly ate baby food. It took me about 4 months to finally feel confident to eat a small burger and, I just sat there crying because I could not eat before the surgery. Everything got stuck!!!
This was back in 2004 and I am well. It was the right thing to do my surgery. You will have your good days and bad days but, just realize this IS a hard surgery. Be patient. I wish you Shalom and just know that you are not alone. Most of us have walked your walk and we come out okay. Pain free…
Hi!
Thank you all for the kindly words e for the answers.
It feels good to listen people who don´t think I’m nuts. I had a very hard time until finally diagnosed.
The doctor told me that externally is the way he chooses to do because it´s easier to access the styloids and it´s also a cleaner procedure in his opinion. The only downside is the scar. I will talk to him next week to discuss the details.
He agreed to do the both sides in the same procedure. If everything goes well with left side, he will do the right side too.
I got the results of my CT with 3D reconstruction and even me without any medical knowledge can see that the strange feeling in my throat came from the styloids.
The sensation of something stuck in my throat is annoying and is always there but the pain is not so intense. The temporal pain which irradiates to ears, neck and head are much worse.
It´s good to know that the dizziness and vertigo which are the worse symptoms on me are probably relative to the styloids.
After reading some posts from other users I think the occasional stomach issues I have can also be caused by the styloids. I did an endoscopy and a colonoscopy, and both came back normal.
Still waiting clearance from my health insurance which probably arrives next week.
For now, I will prepare myself mentally and psychologically for the post-op.
Sharing bellow two images of my 3D CT.
Thank you all for the attention and support.
WOW, Swimmer!! Those are some very long & pointed styloids! It looks like you also have a bit of stylohyoid ligament calcification. You should talk to your surgeon & suggest you would like your stylohyoid ligaments removed, too, so there is no opportunity for further calcification & need for more surgery later. He may already plan to remove the ligaments as well, but it’s always good for you to know what his intentions are in advance. The stylohyoid ligament plays a very minor role in helping you swallow. It’s unlikely you will notice it is gone once it’s removed. I had both of mine removed along w/ my styloids as the ligaments were also partially calcified.
I’m very glad to hear your surgeon plans to do external surgery. He can be more thorough that way (as I said before). Having both sides done at the same time will cause a slower recovery as this is a BIG surgery with lots of swelling in the neck & throat. I hope you will be kept in the hospital at least overnight after the surgery so your throat swelling can be monitored (if he does both sides in one surgery).
Here’s hoping your insurance approves your surgery very soon so you can have surgery & start on the road to recovery.
Very impressive! Will be interesting to see how long they are when the surgeon removes them! I do agree that you should ask about post-op swelling, as that can be be quite bad with both sides being done at once- US doctors often give steroids to counteract swelling, I had a drain put in which helped, hopefully your doctor will be prepared.
Lots of info about what to expect post-op in the Newbies Guide section if you’ve not already read it, & there’s lots of discussions too.
Have you got family to help you out afterwards?
And let us know when you get your date!
Hi All!
Thanks a lot for the replies.
Sorry for my delayed contact.
I was busy with my job issues.
Today I got the clearance from my health insurance.
The surgery was scheduled to day 21.
My doctor said that I will stay in the hospital at least the day after surgery.
The dizziness was very strong past week and the numbness in my face, jaw and temporal region worsened.
I wake up dizzy and I came to bed dizzy.
Sometimes it´s hard to believe that these incredible strong symptoms came from this thing.
I´m trying to keep myself calm.
I will post pictures and comments after the surgery.
Wish me luck.
Happy news that your surgery is scheduled & relatively soon! Good that you’ll stay in the hospital overnight if your doctor is taking out both sides at once. You should have less or no dizziness once you have your ES surgery. Sometimes it takes a few weeks for the compressed blood vessels to open back up after surgery therefore dizziness can remain for a short while after surgery. Often it goes away right away though.
Imagining yourself without ES symptoms will go far toward helping you feel calm before surgery. The first & second weeks post op are when you’ll feel the worst. Post op swelling peaks toward the end of the first week so keep to your pain medication schedule through that time & keep ice packs ready to use every couple of hours. Let your friends &/or family help you during this time. Listening to your body & resting when it says you should will go far toward quicker healing. Also sleep with your head very elevated - 30º (almost sitting up) - for at least the first couple of weeks post op as this will help reduce the swelling in your throat & neck. Surgeons generally make their incisions in an existing neck crease so once it’s healed it’s almost invisible. It does take a few months for it to go away so in the meantime, you have a “conversation piece”!
Prescription pain medication can be very constipating. Prepare for this by using a laxative & stool softener starting soon after surgery so you don’t end up with problems at the other end of your body as well.
I’ll do you one better than wishing you luck - I will pray for you. God is faithful to answer the prayers of His children. I’m expecting to hear good news from you after your surgery. Thank you for bringing us up to date.
Wow AWESOME picture! No doubt that is a new super hero power that will let you swim further and faster than ever!! All kidding aside, I am grateful to see you felt well enough to post a photo. I hope you heal incredibly fast and that this is the answer you have been looking for! Hang in there!
Don’t envy you having both surgeries at once, but the drains will definitely help with swelling! Hope that you soon heal, & feel the benefits of surgery.
Thinking of you & God bless
I’ve been praying for you off & on all day. Was going to post a message to check in but you beat me to it. Looks like all went well! Now the healing can begin! I hope your pain level stays low & you recover quickly! Lots & lots of rest in the first month will be your best friend. Let your family/friends help you whenever possible.
I agree that the double surgery is HUGE, but it will be nice for you to put this behind you all at once.
Please do keep us posted about how your healing is going as you’re able.
Well that’s impressive… oh my. You definitely are a super hero! Atleast you can move forward knowing both are taken care of, although maybe with a bit slower stride. Give yourself that time. Praying for a fast recovery, excellent healing and loving people to support you in this time. Hang in there!
(a gentle hug to you from across the miles)
