Hi @Deb7 - I had a good experience w/ both of my styloid removals. Though it took a number of months after my surgeries for my nerve pain to gradually go away, having my styloids shortened was very worthwhile. My left styloid didn’t get cut back as far as my right one & may have regrown a bit as my facial pain came back after about 9 years so I had another surgery to further shorten my left styloid last year. It was also found I had internal jugular vein compression on the left so that was taken care of at the same time.
I’m really glad Dr. Chang got back to you. Did he say if he could help you or not? We don’t have his name on our Doctors List so you’ll have to know how experienced he is w/ ES. We will be happy to add him later if he seems to be knowledgeable & helpful.
If you have another appointment with him, here are some questions we recommend you ask:
How many ES surgeries have they done and what was the success rate?
Whether they’re going to operate externally, or intraoral- through the mouth. Whilst some members have had successful surgeries with intraoral, external is better for seeing all the structures, to be able to remove more of the styloids, & also there’s less chance of infection.
You need to ask how much of the styloid he’ll remove- as much as possible is best- & anything left needs to be smoothed off. The piece needs to be removed too- some doctors have snapped it off & left it in! If the styloid is only shortened a bit it can still cause symptoms.
If your stylohyoid ligaments are calcified, then any calcified section needs to be removed too.
There’s usually swelling after surgery; you could ask if a drain’s put in to reduce swelling, or if steroids are prescribed. It’s not essential, but can help with recovery a bit.
Will it be a day case surgery or will you need to stay in?
Obviously ask the risks- we know from experience on here that temporary damage to the facial nerve is quite common, and also the hypoglossal nerve and the accessory nerve. These usually recovery very quickly but in some cases members have needed physiotherapy. There is also the risk of catching a blood vessel or having a stroke, but these are very rare.
Ask if the surgeon monitors the nerves- this should be done to see if there’s stress on the nerves to avoid damage as mentioned above.
What painkillers will be prescribed afterwards.
Ask about recovery- most doctors either down play it or are genuinely unaware of how long the recovery can take!
Thank you so much! I will respond to you later today. It is so nice to have someone who understands it all concerning styloid surgery. It makes my anxiety less. He did answer some of these questions. And he is the only doctor I know of right now in my area that performs this surgery. His surgery team will be calling me. After my last CT with 4.4 cm styloids on the left and 4.2 on the right he said they were exceptionally long. He will start with the left one as that is where I feel most of the symptoms. I contact you later. Thank you.
Hello @Isaiah 40:31 and @Jules, Thank you for responding to my posts. I have been in a slump lately with throat pain and the strangest left sided tongue pain with a terrible taste in the back of my throat.Also the spikes in high blood pressure and heart rate. From my search this may be from Eagle’s Syndrome but not sure about that. I do not get much rest either from not being able to sleep on either side. I have tried everything. (I have an adjustable bed too) I feel wore down and I do not like that feeling as I am usually on top of everything. My relief is taking all things to God and asking for His help and grace to deal with all of this. To answer questions I will start with, I would not say that I trust the doctor in the context of knowing him as I only met him once in my first visit 45 days ago. It was a short visit as the CT Scan I had sent over from the TMJ clinic where I go, was full of movement and he said he could not see the angle he wanted to see. So 2 weeks ago per his request I had another CT scan which was done differently. In his notes he wrote this,
“There is elongated/calcified styloid hyoid ligament. Patient with localizing neck/ear sis depending on neck position. Does have some BP fluctuations at times. Advised patient that these issues may or may not change after resection of this structural issue. Main issue for procedure is localizing and radiating pain, L>R. Discussed risk of procedure which includes significant post op pain, potential inability to fully resolve her discomfort, post op bleeding and possibility of infection.”
I wish I would have asked more questions but when he called we were in the car and my brain was trying to think of things. (My list was at home.) He did state to me that this surgery was performed like a tonsillectomy but was not. The handout they sent to me was for tonsillectomy surgery. They do not have Eagle’s Syndrome info on “My Chart.” He said recovery was two weeks and when all healed up then the second surgery if the first surgery helped me. He said surgery was one hour and go home the same day. He goes inside the mouth and said if he cannot access then he will go outside. (I think that is what he said.) I asked if my age of 74 was a factor in the healing process. He said no as it appears you are healthy with no underlying conditions.
The longer I think about surgery the more torn I am about doing it. Do all doctors state that there are no guarantees? I realize they are not God so they have no way of knowing. Some of my symptoms I do not think that he thinks I are symptoms of ES. Maybe they are not. Post op, I am sure there are meds. I do not do meds well, especially antibiotics. Also I cannot swallow capsules at all. A pill unless super tiny I would have to cut in half. Another question I have is, when you speak of post op “nerve damage” what does that mean exactly…pain, numbness, other issues? I am assuming that he is wrong about 2 weeks recovery? I am sending the questions to his team that you sent over to me @Isaiah_40_31. Thank you for them. @Jules, thank you for the encouragement as well. I am so happy there is a place to talk to others who know what is involved in this surgery. I appreciate any other feed back that I have not thought about but should know.
Throat & tongue pain are pretty common w/ ES, however, the terrible taste in your throat could be caused by tonsil stones if you still have your tonsils. Your blood pressure & heart rate spikes are likely coming from irritation of your vagus nerve by your styloids. I had heart & blood pressure problems that subsided once my styloids were shortened.
I’ve forgotten if you’re taking a nerve pain medicine or muscle relaxant to help reduce your symptoms? Either of those might help you sleep better at night. You can also try icing your neck for 20 min just before going to bed as that might also help. Gel ice packs work great because they conform to the neck’s shape, & make sure to put a thin washcloth or towel between your skin & the ice to protect your skin. You could also try sleeping w/ your head somewhat elevated as that might help reduce inflammation & let you sleep better.
I’m glad Dr. Chang had you get a new & better CT scan. I hope it more clearly shows your styloids. I highly encourage you to talk to him about doing your surgery through your neck & not through your throat as you’ll have lest pain after surgery & less likelihood of infection developing. The transcervical approach (through the neck) doesn’t require taking antibiotics after surgery but through the neck sometimes does.
You are correct that his estimate of 2 weeks for recovery is very short. It will take a number of months for you to heal completely but usually by 2-3 months after surgery people feel much better.
Yes, all doctors will tell you they can’t guarantee a great outcome from surgery for the reason you stated. God made each of us a little differently so we each respond to surgery & healing differently. An experienced ES surgeon usually says there’s a 50%-75% chance of a good recovery & our experience on this forum indicates that when ES surgery is done by an experienced ES surgeon, there is usually reduction or complete recovery from symptoms. In some cases there are other health challenges that need to be dealt with after ES surgery & the symptoms those are causing become more obvious once the styloids are taken care of.
Nerve damage from ES surgery is rare as most doctors have someone in the OR monitoring the nerves during surgery so they can be protected, but if a nerve is tangled around the styloid & has to be moved, it can get angry & cause pain, numbness, tingling, burning, etc., for a while post op as it recovers. It can happen that it never fully recovers. If that’s the case, nerve pain meds can be helpful.
It’s good you have some concerns about Dr. Chang & his surgical approach & possible lack of experience w/ ES surgery. Are you able to travel out of your state to see a doctor who has more experience? When is your follow-up appt. w/ Dr. Chang?
@Isaiah_40_31
Thank you for your response. It is so helpful and gives me more to consider.
I do not have tonsils as they were removed when I was 16 years old. The taste is like a bitter metallic, weird taste. I looked it up one day and Burning Mouth Syndrome came up but I am unsure like all the other symptoms of ES I have experienced.
As far as going out of state, that is not an option for me. Dr. Chang may have more experience with Eagle’s then I know. It will be one of the questions I ask going forward.
I am on no pain medication as I have sensitivity to meds in general. So out of fear of past side effects I tend not to take them. My general practitioner just took me off amlodipine because it caused terrible rash and welt from the sun all over my body. I am just getting over that and it took a while once the amlodipine was stopped.
I do use ice on my neck and even though I have an adjustable bed that I have tried sitting up more in it, but sadly it does not help me much. I bought it for that very reason, and before I knew I had ES.
Thank you again for answering all my questions. This has been hard to navigate over the months and years but here I am. LOL. I have a big decision to make. I definitely want it to be the right one.
It’s a difficult decision, but I agree that it would be good to get clarity about Dr Chang’s surgical technique- we have had members whose doctors said similar, that they’d try one approach & if they couldn’t get to the styloid that way they’d try the other, & have ended up with incisions in their throats and externally!
We’ve had quite a few members with Burning Mouth Syndrome, so it does possibly seem to be linked to ES, you could try rinsing your mouth with bicarbonate of soda solution if you’re sensitive to meds ( some members were trying LDN but I don’t know if that’s helped, or if you could take it with your sensitivity). After surgery it might be possible to get pain meds in a liquid form if taking pills is difficult?
One of our members posted some really helpful info about being sensitive to medications / testing for this but I can’t find the post & can’t remember her name… There are lots of posts about Mast Cell Activation Syndrome, it might be worth looking into if you haven’t already?
@Deb7 - I agree w/ @Rex. A metallic taste in your throat can be a sign of a CSF leak. Was your recent CT scan done w/ contrast or w/o?
Do you have symptoms that could indicate internal jugular vein compression? The most common symptoms would be chronic headaches/migraines, changes in your vision, pulsatile tinnitus (hearing your heartbeat in your ear(s), & brain fog. If so, you need to make sure Dr. Chang knows to look for IJV compression between your styloid(s) & C1 vertebra. I hope this isn’t something you have.
@Rex,
Thank you for responding to my post. I do not have any other symptoms, for CSF. When I looked it up it said an altered taste including metallic taste can occur due to elongated styloid process compressing nearby nerves. But I am not a doctor and you may know more than I do as I am still learning. And I do hope not as I have enough issues I am dealing with. So many components of this medical diagnosis. It gets overwhelming fast.
@Isaiah_40_31,
Well I do not normally have headaches. Maybe one sided on the left sometimes from TMJ. Occasionally I have silent migraines with a light show. It can last about 15-20 minutes or less. No pain just zig-zag black lines in front of eyes. I have dysphasia from a tongue tie. Speaking by the end of the day feels likes my throat is really irritated. This was worse when I was on amlodopine, as it dries out your vocal cords. Better after that was discontinued but I still can get hoarse. I have had dizziness and vertigo but was diagnosed 6 years ago with Meniere’s Disease. I can have ear pain and neck pain. My ears have always felt full for years. I hold my nose and blow them out (called Valsalva Maneuver and they pop open and are good for a little while. Hard to know what symtoms belong to what. I also can have trigeminal neuralgia pain that sometimes can produce soreness in the area.
@Jules, thank you for responding. I appreciate the tip for using baking soda as a rinse.
Also the tip for taking liquid pain meds after surgery. As far as Mast Cell, I have never been tested. My youngest son was diagnosed with Mast Cell 2 years ago. It is in his bone marrow and he has small round rash like dots on his back and chest. I do not think his is hereditary but you can be predisposed by genetics. But I am not sure of all the fine print about mast cell.
I was also diagnosed w/ Meniere’s Disease in 2015 & found out in 2022 that I had internal jugular vein compression. I had my IJV decompressed last Oct, & my symptoms, especially vertigo, are gone now. I have chronic tinnitus in that ear, but that’s due to a surgery I had in 2019 to try to stop my hearing loss. Too much bone was removed from my inner ear which has left it very noisy.
There are a group of doctors who believe Meniere’s is not a disease but a symptom of undiagnosed vascular compression especially of the internal jugular vein(s). There has been some minimal research that validates this. I lost a lot of the hearing in my left ear prior to my IJV compression diagnosis, but it has stabilized now that my IJV is open.
I believe that even though the symptoms of IJV compression which I listed earlier are common, they aren’t always present as I only had some of those (brain fog & tinnitus). The brain fog mostly went away after my styloids were shortened. What didn’t go was my declining hearing, tinnitus & vertigo attacks until my IJV was decompressed. If I had known sooner what the source of my hearing loss, & other symptoms were, I could have had IJV decompression done sooner which might have saved my hearing. As you know, God has a plan for each of our lives & His plan for me included ES, Meniere’s w/ hearing loss & ultimately IJV decompression surgeries. I now joke that I have a God ear (can only hear His voice in that one) & a good ear.
Your visual migraines may be due to inadequate blood flow out of your brain. It’s worth getting that checked out prior to entertaining having ES surgery with anyone. A CT with contrast or a CTA/CTV would be good starting points. Again, if Dr. Chang ordered your CT with contrast, ask him to look at your IJVs in the area between your styloids & C1 to see if he sees any sign of IJV compression.
@Isaiah_40_31
He ordered CT scan with no contrast. I wondered how he would know if anything was compressed with just a CT/no contrast. Last night was a terrible night. High blood pressure spikes and heart rate. Taste in throat then spikes began. It could be my anxiety triggering this too I suppose as far as spikes. I was doing one of my strengthening exercises as I have always done and after that everything
went wonky. I just want answers from the doctors. That is all! So hard to get them though.
You made me laugh about having a “God ear.” I think we all need one of those.
Thank you for all the info you gave me. I am not sure what I would do without this site. No answers elsewhere it appears.
@Deb7, I also had symptoms increase when I did aerobic exercise before I had my ES surgeries. I had the opposite problem though, my blood pressure would drop then my heart would race to try to get enough oxygen to my brain. The whole scenario would make me feel like I was going to pass out. I also found working out w/ my upper body - arms, shoulders & abs - would cause those symptoms so what you’re experiencing is likely due to the increased blood flow demand when you do your strengthening exercises. You may want to cut back on those or stop them for a while until you find out what’s going on for sure.
When you see Dr. Chang, advocate hard for yourself. Tell him you’re aware that the styloids can cause compression of the internal jugular veins & internal/external carotid arteries. Let him know that you’ve educated yourself & know that some of your symptoms are those noted with the “vascular” versions of ES, & you’d like diagnostic scans to look for that. Even though you just had a CT, another one w/ contrast ,OR if he’ll refer you for this, a dynamic (head turned in different directions) CTA & CTV would be optimal for diagnosing whether you have vascular compression of any type being caused by your styloids &/or C1 or soft tissues. The soft tissues won’t show up in a CT scan but the compression they cause on a blood vessel will show up.
It’s also critical to let him know about the metallic taste you get in your throat & that you think this might point to a CSF leak.
Too often, doctors intimidate their patients, but a good doctor will listen to his/her patients & will be open to investigating concerning symptoms further w/o criticism or cutting the patients off just because they aren’t doctors, too. I hope Dr. Chang is a good doctor & not an arrogant know-it-all.
Thank you for all this information. I am not used to fighting to get medical care but boy this ES has taught me a lot. Dr. Chang is so busy that I do not think he gets to anything in his practice quickly but maybe when it is not straight forward like ES he tends to take his time. I called this nurse last week and told him that it had been over two weeks since I had the CT scan. Dr. Chang had not gotten back to me. His nurse told me that he had been bugging the doctor every day to get him to read my CT scan. And then he said to me, he was at Dr. Chang‘s Mercy to try and get it done in a timely manner.
The next day I finally got the call after his nurse must have told him again.
I have dealt so long with this (like everyone else) that I just want it done. It seems to go on and on.
Yes, it was Dr. Chang, he said I had elongated calcified of 4.4 cm on the left and 4.2 on the right. He asked what side presented the most issues? I said the left. It has always been the left or so it seems.
He asked symptoms again. I said ear pain, mid left throat pain, feeling like something stuck in throat and a tightness across throat. Forgot to tell him of the latest symptom of weird taste but I did tell him about the heart rate/pressure issues. I think my symptoms that came on suddenly in the past few months before I knew what I had was from Chiropractic manipulation of cracking my neck. Before that symptoms were very subtle and I thought they were because of Ménière’s disease, etc.
I digress, back to Dr. Chang, he said my styloids were very long. He said some people present long styloids like mine, with no issues at all. He said he would do surgery but said he could not tell me if it would take away all the symtoms I present with. He then told me how he does surgery, and the risks. He said his surgery team would call me. Now I wait, and I did send over all my other questions 2 days ago. Waiting on them seems to be the name of the game lately. Giving up might be easy if it were not for the fact that getting true answers is so important to me in trying to live with ES. So every day I go forward asking God to help me navigate each day. That is the one constant in my life. Thank you again @Isaiah_40_31 for all your feed back that definitely helps me.
Well done for keep pushing & not giving up! I hope that the questions you’ve asked about surgery are answered soon, & that you’ll be given a date if you’re happy with the answers, sending you hugs & praying for surgery soon
HOORAY! Your self advocacy phone calls paid off! “The squeaky wheel gets the grease.”