I had a styloidectomy on one side for Eagle syndrome just over a year ago. I’m still struggling with headaches, but the pain is not as severe as it was so it definitely helped. It used to affect my vision and cause days of debilitating pain, about level 7-9. Now it’s just a day or two each week with about level 5 pain. I really don’t want surgery on the other side without some idea of the root cause. Surgery is described as pretty minor, but it took me at least 6 months to recover fully and a year for the nerve damage. It was way more than I anticipated. Anyway, on my hunt for a root cause I’m wondering if anyone else has the following or has looked into these:
Proper resting tongue posture / possible tongue tie
TMJ
Hyper-mobility
My jaw is misaligned and I have some symptoms of being hyper mobile. I think it makes sense they could relate but I haven’t found a doctor willing to entertain that kind of discussion or piece this together. They all just want to stick to their lane.
Has anyone had similar issues or gone down this road to investigate root cause?
Did your first styloidectomy include IJV decompression or was it just a styloidectomy w/ hope that your IJV would decompress once your styloid was removed? I’m asking because the most common scenario we see among our members is the IJV(s) become compressed between the styloid & transverse process of the C1 vertebra. In some cases, when the styloid is cut off above the styloid/C1 junction i.e. very close to the skull base, the IJV will decompress on it’s own, however, in our experience on this forum, C1 often plays a more significant role in the compression. If it’s left alone, a styloidectomy is not enough to allow the IJV to reopen substantially. If your IJV compression is/was bilateral, we’ve also noted that the majority of our members need both IJVs to be decompressed in order to get the best overall results.
Sadly, too many doctors give ES patients unrealistic healing timelines telling them they’ll feel great in a couple of weeks to a couple of months. What you experienced is the timeline we tell our members to expect for recovery from ES surgeries. Nerves are very slow to heal & when vascular compression is also involved there is another layer of recovery as the brain/body adjust to the new level of blood flow they’re experiencing.
Do you mind mentioning who did your surgery? If it’s not someone on our Doctors List, we’re always looking for new names to add. Since it seems your surgeon did a good job, at least w/ the styloidectomy, (s)he would be someone we’d add.
From the symptoms you’ve mentioned you have, it sounds like you may have other vascular compression syndromes. Getting tested for Ehlers Danlos Syndrome makes sense in your case. A number of our members who have hypermobile Ehlers Danlos Syndrome suffer with at least some of those. They are Thoracic Outlet Syndrome (TOS) which could be causing your arms to fall asleep. Swelling in your lower extremities could be from Nutcracker Syndrome (NCS). The other two compression syndromes we somewhat often hear about here are May Thurner (MTS) & Median Arcuate Ligament (MALS). People who have EDS also seem more prone to MCAS (Mast Cell Activation Syndrome), but that can also be the result of Lyme Disease even if it’s dormant.
Besides the bony compressions of the IJV, there are also soft tissue compressions that can occur via muscle, nerve, other veins/arteries, lymph nodes, fascia & scar tissue. A surgeon who is very experienced w/ IJV decompressions surgeries will look for all sources of compression & not just in the styloid C1 area.
Our member @vcp02 has good knowledge about tongue ties & TMJ which she could share with you. You can send her a private message by clicking on her screen name as it occurs in the previous sentence.
Many of us on this forum have TMJ issues which have reduced once our styloids were resected. There are others though who’ve had to pursue more specialized treatment to help w/ jaw alignment dysfunction & as you’ve noted, there can be unexpected contributors to that problem like a tongue tie.
@KMBS Prior to being diagnosed with VES a physical therapist identified that I had a grade 4 tongue tie that he felt was contributing to my low back pain. I had the surgery to release it and myofunctional therapy to train my tongue how to work. A tongue tie puts tension on the deep midline fascia and when mine was released I could feel my ribcage drop and I was able to breathe more deeply. One of my working theories (with no objective evidence) is that the tension created by the tongue tie and its effect on the position of the hyoid bone could explain the growth of the styloids. Releasing the tongue tie, however, did not impact any VES symptoms that continued to increase and worsen. I hope that’s useful.
I’m sorry that it took you a long time to recover from your ES surgery, as @Isaiah_40_31 says, doctors do misjudge the healing process. We have had some members with nerve damage post-surgery, although the risk of this can be alleviated a bit by using nerve monitoring. Which nerves were damaged during surgery?
It might be worth getting a new CT with contrast done, timed to show the venous and arterial phases as headaches can sometimes be caused by vascular compression, and this could possibly have an impact on a second surgery, whether you consider seeing one of the VES surgeons.
We do have lots of members with hypermobility, Ehlers Danlos Syndrome, there does seem to be a link. @Snapple2020 is knowledgeable about EDS and has posted links to info about this if you’re interested: FREE EDS RESEARCH Symposium April 9th & 10th - General / Research Papers - Living with Eagle Podcast — Hypermobility MD
Unfortunately many doctors don’t look at the body as a whole, just their little specialism!
Interesting! Thank you for sharing your experience. I’ve started to see a myofunctional therapist to work on my tongue posture recently so I’m hoping that might help with my TMJ. She hasn’t advised on whether I could have a tongue tie yet but I’ll definitely ask about that.
I’m sorry the tongue tie release didn’t help with your VES symptoms. I appreciate hearing your experience though - I will try not to get my hopes up in that regard.
If you don’t mind sharing, do you feel like addressing the tongue tie was a piece of the puzzle? I keep telling myself even if I have to chip away at a bunch of seemingly disparate things maybe it will all add up in the end.
I saw Dr. Donald Annino at Brigham and Women’s in Boston for surgery. I thought he was great in terms of the surgery, and knew I was in good hands! I appreciated his bedside manner, how quickly I got in (referral to surgery was 5 month), and the surgery day was smooth. I do wish he was a little more invested in the recovery and realistic expectations. But I’d recommend him for sure.
I did have IJV compression, but Dr. Annino expected it to decompress on its own. I haven’t had any imaging since the surgery so that is a suggestion I think I could take to my PCP. Some of the other things you list are things I experience but haven’t ever been seriously considered.. my hands and arms go numb, and my feet, ankles and calves swell. I may follow up on the compression syndrome route too if I can keep momentum going. It gets exhausting and daunting thinking about all the follow ups. But one thing at a time!
@Jules thank you for your reply! I have no idea what was damaged exactly.. my smile drooped for about 2 months, I had pretty severe first bite syndrome for about 6 months and only occasionally get that now, and the numbness in my chin & neck went away closer to the one year mark. I think my nerves are all healed now, but I never had any follow-ups or confirmation on what nerves were damaged. Is that something my surgeon would have known? He mentioned the nerve damage was minor and would clear up faster than it did. But I had suspicions my TMJ issues could have been aggravating the healing.
@KMBS Good morning. If you have a tongue tie you won’t be able to have proper tongue posture up against your upper palate because it won’t reach. I think the whole process of releasing the tongue tie, doing the myofunctional therapy along with the palate expansion (if you have a tongue tie the palate doesn’t expand properly because it requires the force of the tongue up against it to do so) helped release some tension in my body and it eliminated upper airway resistance while sleeping. It was for sure a piece of my overall health puzzle.
Fist bite syndrome is pretty common after this surgery, and can’t be prevented, I don’t think many doctors warn about it though… If your smile was droopy that’s probably the facial nerve, which again is quite common after the surgery, and can happen with even the most experienced doctors- apparently it’s incredibly fragile, as thin as tissue paper so very hard to avoid…it’s often monitored but can still be affected. I still have a little numbness in my jaw and in front of my ear even after surgery 10 years ago, better than pain though!
I do agree though it would be better if doctors did prepare patients better!
@KMBS - I hope your PCP is onboard w/ ordering whatever testing you feel makes sense going forward. I also hope whatever imaging you get is very helpful in showing what’s causing your current symptoms so you can choose how to move forward with treatment.
I have #2 & 3. I had a little first bite on one side but quickly went away. My left jaw though stayed flared for quite awhile. (1st surgery in 2020) I have pretty severe TMJ and osteoarthritis in jaw. I have struggled for 50 years with neck issues from whiplash and hEDS. I can get some pretty narly headaches. I get regular massage, cranial sacral therapy and botox in jaws, temples and occiput. Ive tried the game of treatments including prolo injections.
I don’t know if you had IJV decompression w C1 shave. I didn’t my first go round in 2020. I just had surgery 12 weeks ago and that same left side has kicked up with nerve issues. I am taking amytripline which is knocking it down a little. I tried accupuncture the first 6 weeks which was mildly helpful. Im getting more accessory nerve issues in the shoulder now.
Your other symptoms point toward TOS and May-Thurner. If you have hEDS, you have an increased chance of these. My daughter has bad blood pooling (POTS/MCAS) and I am having the swelling in ankles and calves now for several years. We are still in process of evaluation for these other compressions and were coming up with red flags. My daughter just had imaging that shows severe IJV compression so she will go there next. I can share as an hEDS, I have a long history of nerve compressions from adhesions and scar tissue. My IJV was “shrink-wrapped” and squeezed on one side all the way down to the clavicle. There are not many surgeons who will look at this. Even after surgery, it looks like I have muscle still compressing the IJV on one side down below. I deal with that next. Also more evals for TOS. I know this is exhausting as Ive been in overwhelm myself since January when the door was opened for these vascular compressions.
