Welcome home! Wonderful to hear from you, I know energy is limited and recovery is hard so thank you for posting. Please give yourself every second of this time to rest and heal, it is going to take time and especially so in your case being so complex.
Good to hear the whooshing symptoms are subsiding. The work they did is very near to your semicircular canals so as the swelling and irritation decrease this will allow further improved circulation through the vein it should continue to improve. Not turning your head tons would be helpful here.
I look forward to hearing how you are doing when you feel able. In the mean time know you have a whole group of people rooting for you!
Home is where you heal, rest well.
So glad your surgery went well although long and complicated. Youve gone thru the hardest part ------ getting diagnosed and getting the surgery. Its only up from here on your healing journey. Look forward to hearing about your progress and pix of course. Take it slow and be good to yourself.
It’s been a tough stretch I’ve been pretty down. My head noise is worse than ever and the pressure is horrendous. Everytime I turn my head I get a nasty headrush and sometimes a quick horrible burst of vertigo
I’m hoping this is the swelling :(. Day 3 at home was amazing, colors looked more vibrant and the ringing in my ears was absurdly quiet, but it’s all come screaming back. I feel about as bad as I’ve ever felt in my life it’s been nearly 20 years of things slowly progressing and it just took them so long to find out what it was or even just believe me, and now I feel it’s almost too late. Sorry I’m just venting I’m so sad right now :(
Days 3-5 are the worst for swelling & feeling bad, so this could well be causing the head pressure, over sensitive nerves etc. That said, it’s not unusual for this to carry on for a few more days…the nerves often play up as they heal, & if the’ve been irritated by the styloids for a while then it stands to reason healing will take a while. And nerves have to be moved out the way during surgery, so that can cause irritation too, so all this is quite normal. You wouldn’t expect to be straight back to normal after a stomach operation for example, you’d expect discomfort, so surgery in your neck, where there’s major nerves & blood vessels, can be a tricky recovery.
So hang in there, make sure you use ice & keep half upright when you can, & I’m sure this will pass. I’ll be praying for you
@Msdstc
I am so sorry to hear of your rough recovery and echo everything Jules has said, especially in light of the severity of your case. I think you are around 2 weeks out so this still puts you in a massive ANS recovery swing, it can take several months for the ANS to balance back out. I am proof of this having had bilateral styloidectomies and several skull base repairs, it takes time and that is the hardest part of recovery.
Don’t loose heart! You have come this far and you will have improvement. When is your next visit with the surgeon?
I have attached a link to a video on self lymph drainage. Don’t be surprised if your surgeon poopoo’s this, i use it clinically on patients and it does work. The biggest mistake people make is using too much pressure. It is a very light technique if done properly, almost feels like a feather pressure. Start with 20 reps at each spot and do 2x a day, if you tolerate this well then you can increase to 3-4x day.
Another tip to help stimulate your vagus nerve in a healthy calming way: breathe in for the count of 4 through your nose filling your belly (not your upper chest) and out for the count of 8 with pursed lips, like blowing out of a straw. Do this for 5 minutes to start and increase as you can.
Hold strong, you are on your way to a much better life!
Thank you for the video and the information about vagus nerve stimulation, JustBreathe. I have some residual vagus nerve trouble & have looked into various therapies recommended for vagal stimulation. The breathing technique seems easy to implement. Other things I understand help are taking a cold shower or having part of a regular shower be cold, & humming. I need to hop to & start doing the breathing or humming or both. Will skip the cold shower for now.
At day 3 post op, you most likely were still receiving some benefit from the epinephrine they give during surgery to prevent bleeding & inflammation. That would explain how good you felt that particular day. As your first & subsequent weeks have progressed those benefits disappeared & were replaced by post op swelling. As bad as the symptoms can be from the swelling, it does serve a purpose - it’s the body’s way of putting a protective cushion around the injured areas so they can safely heal. Unfortunately, the protective cushion itself causes pain as it puts pressure on surrounding nerves & soft tissues. If your pain & symptoms persist, you could ask your doctor for a course of prednisone to help reduce the post op swelling. My surgeon prescribed that post op & it made a HUGE difference in how I felt.
As Jules & JustBreathe said, healing from this surgery can take awhile i.e. a number of months. In my experience, I felt pretty good by two months after surgery but still had some nerve pain & a half paralyzed tongue. By six months post op, many of my nerve symptoms were gone, & by nine months my tongue began to work more normally. I got First Bite Syndrome after my first surgery. It was very intense for about a year then began bothering me less. Though I still have it, I’m continuing to see improvement 6 years after surgery. Nerves can be very slow to heal. Recovery from ES surgery requires a great amount of patience & taking it easy for the first 2-3 months after surgery. Again, the longer you had symptoms, the longer it’s likely to take for recovery to occur so stay optimistic and believe your body is doing its best to recover so you can thrive.
Thanks for all the kind words. It’s just been a tough stretch trying to figure out what’s wrong with me for nearly 2 decades, 2/3rds of my life I’ve dealt with weird neurological symptoms like screaming tinnitus, brain fog/fatigue, mood swings, neuropathy. For years and years of convince myself that it was in my head because the doctors never found anything. Now that I know what it is it’s hitting me hard how I’ve lived significantly handicapped almost my entire life. If I can just get some of my visual symptoms to go I feel like I’ll be able to cope, it’s just scary and frustrating knowing this all could’ve been prevented.
Msdstc,
Is your ES bilateral? I recall you only had one side removed. If that’s the case, getting your other styloid (& stylohyoid ligament if calcified) removed may be necessary for you to have more complete recovery from your symptoms. Six months post op is time enough to have a good idea of how much your first surgery has helped & is a good amount of spacing between surgeries.
I’ll keep praying for your recovery to progress notably & that the “snapshot” of symptom relief you had at 3 days post op will become reality for the long term.
Michael, I sure hope you are feeling better! I am not quite sure but I feel like I have regular ES and possibly vascular as well. The eye symptoms are horrible. The flashing lights and literally feeling like my eyeball will pop! I hope your eye issues resolve and wish you continued healing.
@Msdstc wow i just read your story. I have similar issues as you. Im in CT. who did u find to do your surgery?? It seems like u had a lot of good drs helping you with this. Im going on eagles surgery #4 and still have jugular vein compression on both sides. This is a nightmare. I dont think i found the right help. Im 4years in witht eagles syndrome.
I had a similar problem w/ my eye except I had pressure behind my left eye that felt like it would push my eyeball out of the socket. That stopped immediately after my left side ES surgery.
That’s awful I’m sorry to hear that? What have your surgeries involved?
I’m worried about what mine is going to show, they said my case was extremely unique in that there really wasn’t much styloid at all, just calcified ligament and muscle. Apparently they couldn’t remove all of the calcified stylohyoid which scares me given what I’ve read on here. Apparently the ligament was pretty fibrosed to the vessel so separating it was extremely dangerous.
I’ll be doing diagnostics in a few weeks to see how the flow is looking and see if there’s extrinsic compression or not. Stenting is useless if the vessel is still compressed. Feeling pretty hopeless right now.
I was fully calcicied from styloid to hyoid both sides. My first surgeries -right then left. He removed a piece but not the whole thing. My 3rd surgery removed both sides of the calcified ligaments at the hyoid. Waiting on my 4th surgery to remove the remaining styloid which is compressing my jugular vein between c1. :(.
I feel like i didnt have the right help from the start. It seems like ur drs are really helping and looking into things.
My doctor’s are at bmc it’s a team of neurosurgery, neurointerventional radiology, and ent. Dr abdalkader is the primary doctor who discovered my condition. I’m sorry to hear about your experience I’m hoping I’m not headed for that but I seem to be trending in that direction :(. Went for an update today, I’ll be getting another CTA in a few months to see how the vessels look and how much space was created.
They went over my mri and pointed out my empty sella syndrome. This whole thing is bumming me out.
@Msdstc
Do not loose heart! You have an excellent team of incredibly brilliant humans working for and with you. As a unicorn in the medical wilderness (i understand 100%) the layers of care and intervention take patience and fortitude…you have this in you. I can say this because I do and we are the same, both humans. As for the empty sella syndrome, this is not permanent and once identified is very treatable!
Don’t loose heart, stay they course. The hardest part is to stay calm, just keep breathing one breath at a time. You are not alone here, we are with you.
it’s been nearly 20 years of things slowly progressing and it just took them so long to find out what it was or even just believe me, and now I feel it’s almost too late. Sorry I’m just venting I’m so sad right now :(
