I have known that I had ES for 8 years, but the pain was not very bad. The pain became worse last year after having ACDF surgery. I had 3 disc replaced C4-C7, plate, and screws installed. That time I had no use of my left arm. The surgery helped that problem but since the surgery I have felt like I could not breathe when I bend down. A lot of other symptoms also started at that time.
I had my right styloid (8.1 cm) removed to the skull, in May and that helped a lot of the symptoms. The pain on the right side has gone away , not getting dizzy when I bend down, I can sleep on my left side now, neck poking on right side is gone, shoulder and shoulder pain is gone, and coughing is so much better.
I am having surgery to have my left styloid removed Aug. 3. I am still having problems when I bend down. I feel like my throat is being squeezed and it is hard to get a breath. I am now having pain on the left side of my neck. I have also been having blurred vision and then a headache behind my eyes after I bend down several times. My question is: Do you think this is because something is compressed? I am hoping removal will help my problems, but not for sure. I am hoping someone has some experience with this problem. I just want it corrected. 3 surgeries in 9 months are too much. You bend down more than you think, and not being able to breathe is difficult. Thanks for your help and advice.
Having symptoms flare up from the remaining styloid after having the first one removed is very common w/ ES. My symptoms were really awful, actually even worse from my second styloid than from the first. Because of the length of the first styloid you had removed, I expect your second one is also pretty long so am not surprised it’s causing a problem.
We have speculated on here that when one styloid is removed, things shift around in the neck a bit & that may be one reason the remaining styloid becomes more symptomatic after the first is removed. Sometimes the symptoms even cross over to the first side making it feel like surgery really didn’t help much when in reality it really did.
Your breathing symptom could be related to your vagus nerve being irritated. I had a breathing issue as one of my symptoms, but it was different than yours, & it went away about 8-12 weeks after my first surgery. I also had bad eye pain plus the feeling that my eyeball was being pushed out of my eye socket from behind. It was extreme enough I’d find myself checking the mirror to see if my eye was bulging out (which it never was). The facial & trigeminal nerves can cause eye pain when the appropriate branch of each of those nerves is compressed/irritated & both are known to get irritated by ES.
I suspect your headaches & eye symptoms are more nerve related than vascular, but it would be best to mention your headaches & eye symptoms to your surgeon before you have surgery so he can do further testing if he thinks it’s necessary to determine if you have IJV (internal jugular vein) or ICA (internal carotid artery) compression. Making sure he plans to cut the styloid back to your skull base, if possible, is also critical. It looks like that was done w/ your first styloid. There have been a lot of discussions about vascular ES on here, & you can search for them by typing vascular ES into the search box (click on the magnifying glass icon above).
I’m glad you have your next surgery scheduled, & it isn’t too far off. I believe this next surgery will help deliver you from the symptoms you’re currently having. I’m glad the first surgery helped get a start with that.
I’ve put your surgery date on my calendar & will pray for a straightforward surgery & good recovery for you.
Thank you for the encouraging words. I hope that by removing the styloid, my symptoms will be corrected. There is not really a test to show my problem, because it happens when I bend over. I am so ready for this strange condition to be over.
Thanks
Hopefully having one side removed gives you confidence to see that the surgery can make a real difference, & as you’re getting pain in the other side of your neck now, surgery may well help that too. As @Isaiah_40_31 says, it could be vagus nerve compression &/or vascular compression, so hopefully the surgery will help these issues too. Unfortunately no-one can tell for sure what symptoms are caused by the styloids until after surgery, so we can’t say for definite, but they are symptoms which can be down to ES so hopefully surgery will help!
Not long to go, & you know what to expect, so will be thinking of you & praying for you too
Hi Cody,
Isaiah has some good words of advice re: possible vagus nerve. You have some dang long spikes!!! I assume you have some significant cervical instability due to your ACDF surgery. Given taking out one styloid helped symptoms, it would be safe to assume you will get some improvement after the next styloid removal.
I have cervical instability, TMJ and had both styloids out. I knew that eagles surgery would likely not take care of all my symptoms. For me it was a process of elimination and I chose the styloids first. Im now having partial loss of right arm/hand use and moving in the direction of possible vascular and nerve compression due to cervical instability.They also suspect some thoracic outlet impingement re: arm issues.
Its been since Dec 2020 since I had my 2nd styloid out. I have had the expected lingering numbness after surgery that slowly seemed to resolve but not fully. More recently the past few months I have had this feeling of someone choking me in my neck, but did not impair my breathing. I thought maybe its swelling in my neck? Im still not clear on the cause of this choking feeling but also new is about a 2 finger band across the back of my neck going numb (C5-C6). This seems to start up after looking down for periods of time and then I noticed the choking feeling following it.
I have had dizziness bending down for as long as I know. I attributed it to low blood pressure for years. My daughter has the same but we do both has ehlers danlos hypermobility, she has POTS also. Another friend of mine with EDS has this same dizziness bending down. We do know that my daughter has a 20% deficit in her blood volume that contributes to her near syncope episodes. You may want to test your blood pressure in various positions to see where you are at and monitor it regularly. If you generally have low blood pressure, it might be contributing to your dizziness while bending down? Unfortunately my dizziness bending down has gone to vertigo and near syncope along with ear pain even upright. Im being evaluated for compression related to cervical issues. I have massive headaches on and off for years but not behind the eyes.
Your going opposite from me, doing the ACDF surgery first, then eagles. You have had alot of surgeries in a short time and our bodies react all kinds of ways from the assault on our bodies and then the healing process. You are still in recovery from those. Try to go into the next surgery realistically. My motto is hope for best, prepare for the worst and hopefully you end somewhere in the middle and you are not disappointed from having to high of expectations. be patient. I hope your next surgery resolves some of these lingering problems for you. Do make sure to discuss the breathing/choking issues with surgeon.
Yes I am hoping most of the symptoms will be corrected. I have had high blood pressure for many years and the surgeon thinks the carotid artery was pressed by the right styloid. The remaining left side is at least 5.2cm.
I had my ACDF surgery because it was necessary. I woke up one day with no use of my left arm, electrical shocks in arm, more pain than I have ever had, and numb fingers (which I still have). It took 5 months to get the surgery. Ins., doctors, and time took forever. My spinal cord was compressed, 2 pinched nerves, and herniated disc. It has been a rough year, but hopefully things will be improving.
Thank you for the kind words and prayers and I hope you find your answers.
OMG Cody. That is alot. Given they think the carotid might be compressed from styloid, it sure sounds like you have an excellent chance of success with the upcoming surgery. It will be a piece of cake of a surgery…especially after enduring ACDF surgery. That must have been difficult as far as post-op pain and recovery?
