Hi! I don’t think I did a formal intro but wanted to post my updates after surgery to help others.
Last week, I had a right styloidectomy (jugular compression) and removal of 2 calcified ligaments with Dr. Hepworth and Dr. Annest in Denver. I have pots, Eds, mcas, and 3 autoimmune diseases. Surgery went really well. I was most nervous about my mcas and my autoimmune diseases flaring. They both acted up after surgery but I had plenty of extra meds and steroids on board. I went home the same day and only needed small doses of strong pain meds for 2 days.
Today is 5 days post-op. I am sleeping well and haven’t had pain meds since day 2 post op. I am on increased steroids because of other health conditions but have been slowly reducing those each day and should be back to my normal daily dose by the weekend (fingers crossed).
My neck and jaw are a bit sore and achy but not bad. I had to ditch my giant wedge pillow last night after using it the past 4 nights (hated sleeping so upright) and used some extra soft pillows to prop myself up. I woke up laying on the side of my surgery. It was sore from sleeping on it but not bad at all and after a shower, it was fine.
I am lower energy yesterday and today and feel my body is very much directing most of my energy into healing. I know it’s early but it does seem that my POTS is better. I took a shower this morning and didn’t need to lay down after which is definitely different and it seems my brain is less foggy.
I talked on the phone for almost an hour this morning and my jaw is so tired and my throat is sore after that. And it made me very physically tired too.
I can eat almost normally. I even ate some crunchy tortilla chips today.
My incision is scary looking because of how easily I bruise. My follow up with Dr. Hepworth is in 3 days.
What a great post op report! So glad you’re doing so well! I “slept” on the uncomfy wedge pillow for 6 weeks. I’m glad you were able to get rid of it sooner!
You’re at the end of the period of greatest post op swelling. Moving forward you should begin to notice more positive benefits of surgery. The fatigue will stick with you for awhile. I’m very active & fit yet was fatigued for two months post op. At just about two months to the day after my first surgery, I woke up in the morning feeling back to my old self. It was so amazing!! I’m sure the process was gradual but sometimes the changes are so discreet we just don’t notice them until they reach a pinnacle.
Your incision will become nearly invisible with time so don’t make any judgment regarding it’s final appearance at this point. I was instructed to use Mederma w/ sunscreen on mine once the incision was mostly healed. Other people have found silicone scar patches work well in helping to minimize the scar.
Recovery can have ups & downs so don’t get discouraged if you have some future days where you don’t feel so good. They will be followed by better days. Eventually the good days win & the bad fade into the distance.
Thank you for updating us. We always love good news!
Very good news! Thanks for updating us, so glad that you can see some improvements already! I second what Isaiah says about ups & downs- easy to overdo it if you have a good day. And those steroids must be helping, I hope things don’t flare up when they’re reduced.
There’s lots of you seeing Dr Hepworth at the moment, I’m sure they’ll be pleased to hear your story!
Take care & God bless!
I noticed improvement in the POTS as well…YAY!!! That is huge. So great to not have to sit for a 5 min shower and then lie down for an hour (biggest smile emoji I could fine lol)
I would love to know more about your symptoms of the compressed jugular. I am having a hard time getting anyone medically to look into it for my case. I was told by the head ENT at Froedert Hosp in Mil that there is no connection
I have 5.5 right and 6.5 left styloid calcification. I have had very erratic blood pressure readings, heart flutters or constant hard beat in neck and temples. They keep telling me that this Eagles syndrome would not be related. I have severe involuntary Sternocleidomastoid twitching at night as soon as I lay my head on a pillow. This twitching is constant all night long until I get out of bed. Severe neck discomfort all the time. Wondering if anyone has had similar symptoms that have been proven to be from ES
The Froedert ENT is ovbiously incorrect regarding your potential vascular symptoms. We have another member who’s seeing an ENT at Froedert soon. Who did you see there? You can get a second opinion from either Dr. Samji or Dr. Cognetti. Both do video consults for a fee & normally insurance will help pay as it would be a second opinion.
Here is some info that will be helpful for you:
The symptoms of ES are caused by irritation of up to 6 cranial nerves that “live” in your neck in the same area as the styloid processes & stylohyoid ligaments. Elongation of the styloid(s) &/or calcification of the stylohyoid ligaments can cause irritation to these nerves. Alone each nerve when “upset” can create painful & sometimes scary symptoms. When more than one is irritated the symptoms caused can be downright debilitating. Additionally, vascular compression of the internal carotid artery &/or jugular vein can occur which creates other miserable & concerning symptoms - these are intracranial hypertension, pulsatile tinnitus, migraines, visual changes, etc. Obviously, the solution for recovery is to remove the offending bones/ligaments so the nerves &/or vascular tissues can recover.
There is a series of YouTube videos called Two Minute Neuroscience . Each cranial nerve is featured in a two-minute video w/ explanation as to location, function & dysfunction of the nerve. It would be good for you to watch them. These are the nerves most often affected by ES: vagus, facial, glossopharyngeal, hypoglossal, trigeminal & accessory.
Your erratic bp & heart flutters are likely related to irritation of your vagus nerve by ES though your hard heartbeat in neck & temples sounds more like vascular constriction. The SCM twitching/neck irritation is more likely coming from irritation of your accessory nerve.
Vascular constriction is only visible on a CT scan w/ contrast & w/ your head in the position that provokes those symptoms. Having your head in a neutral position will not necessarily show vascular compression. If you can get your PCP or the diagnosing ENT to order a CT w/ contrast that would be helpful to rule out a vascular issue.
(biggest smile emoji I could fine lol)