Hey Everyone,
Just wanted to give an update that I had my left side styloidectomy completed yesterday by Dr. Hepworth at St Lukes/Presbyterian and it all went well. Everyone on my team was professional, good humored and helpful. They started surgery about 40 minutes earlier than scheduled since everyone was ready, and got me out of the hospital a just a few hours later.
Dr. Hepworth told my partner that the jugular compression was worse than he had expected from my CT scans, but he was able to remove all 3cm of my styloid and ballon my vein. They put me back on blood thinners for a few weeks to hopefully help that vein stay open.
I’m doing well at the moment, far more coherent than I expected. Didn’t get much sleep last night, but was able to doze for a few hours. Now that the surgery meds are wearing off, my neck and shoulders are very sore, but I seem to have full range of motion and no nerve damage. I am eating soft foods, as my throat is quite sore and chewing aggravates the pain in my jaw, which seems to be due to swelling on my left side. I had some pretty intense tinnitus yesterday after surgery, but that has subsided somewhat.
So far I’ve only taken a little tylenol to help me get some sleep last night, and the blood thinners that were prescribed. They gave me steroids at the hospital prior to surgery, but none after.
Two hlepful things I was recommended by friends familiar with surgery that I’d like to pass on:
bring a pillow with you in the car so you can support your head on the way home.
So pleased that you’ve had surgery! Dr Hepworth & his team sound really good, amazing to get you in early!
Don’t be afraid to use stronger pain killers if you need it, once you get in too much pain it can take a while to get it under control again…great that you have no nerve damage too. I hope that you soon feel the benefits of surgery & that the ES symptoms goquickly.
Take care & best wishes, will keep praying
@MsBearshark - Thank you for the update so soon. HOORAY! Surgery is behind you & things went well! Glad you got some helpful recommendations from friends for your trip home. The type of ice pack we’ve recommended here is a gel ice pack which also conforms to the neck. I think some specific shapes & sizes have been mentioned on this forum & links given as well. I bought 3 gel ice packs so I could rotate them & not be stuck w/o one when I needed it. Icing should be done 15-20 min on & at least 45 min. off using a thin towel/washcloth between your skin & the ice. Also make sure to sleep w/ your head elevated. It has been recommended by one of the more experienced ES surgeons that head elevation of 30º or more is most helpful in helping reduce inflammation in the neck & throat post op. Most of us have purchased a wedge pillow (I added bed pillows on top of mine to make it steeper & more comfy) & a V or U shaped pillow for neck support. It’s hard to sleep that elevated (almost sitting up) but you will get used to it.
I also second what Jules said about pain meds. You’re in the post op “honeymoon period” right now i.e. the surgical meds & cortisone are helping reduce pain. Post op inflammation peaks at days 3-6 & so does pain, so don’t get too far away from those pain meds. I spaced my out too far too soon & spent two days trying to catch up & get back on top of my pain. No fun!!
Just before my surgery Dr. Hepworth told me that I would have 3 post-op appointments, and that those dates and times would be included in my discharge paperwork. That information was not included, so I’ve been calling Dr. Hepworth’s office to try and get that information. I finally got through this morning and was told only one of the 3 followup appointments has been scheduled, and that one will be next Friday, Dec 16th, with his PA, Alison Love. When I asked about the next 2 appointments, I was told there are currently no openings in their schedule. Do any of you know what the timing is supposed to be for these 3 followup appointments?
I am so excited for you!! Such great news that everything went well. I am so hoping your pain continues to be manageable. As for his office, that is consistent with everything I have heard — they are short staffed (along with every other doc office) as a result of COVID when medical personnel became burnt out and switched careers… it has made our patient experience that much harder, in an already impossible, and deeply emotional, medical situation. Here’s hoping you get on the schedule, and it sounds like you have been appropriately persistent in getting to this point; I have full faith in you, friend! Please keep us posted on how you feel!
I am personally headed to the Rochester, MN Mayo Clinic on Tuesday for an appointment we’ve had since long before my ES diagnosis, but will be back next weekend. When you are up to it (whenever that is!), I’d love to connect and grab some soup, tea, or whatever feels right for your recovery. Sending love and healing vibes in the meantime!!
My followups started with one 6 days after surgery. Then I went back out to Colorado around 6 weeks later but that was mostly to examine the healing and scar tissue in my sinuses from the leak repair. I had a Telehealth appointment about 4 weeks after that to check on my symptoms and recovery.
@smallgirlbigmoutains - I need to give you fair warning before you get to MN to see the doctor at Mayo - “Gird your loins!” emotionally. Mayo Clinics have a reputation for having knowledge in many medical areas, but the experience of members of this forum dictates that ES is not one of them. We have many members who’ve traveled to a Mayo Clinic only to be soundly rejected when the topic of ES came up. If your ES is acknowledged, & you’re treated as an educated & informed individual then you can do a happy dance all the way home.
Hey Everyone,
Just wanted to give a little update. I’ve been doing surprisingly well post surgery (day 4 today). Definitely tired and sore, but still no major pain, and the swelling seems to have subsided quite a bit as of today. Everyone on here says the worst may still be to come, so I’m still being very careful, but I’m also enjoying the respite while I have it! I’m still pretty low on energy and focus, but that’s to be expected. The post surgery tinnitus has gone away, and I haven’t needed any pain killers since one dose of regular Tylenol the first night. I’m not sure if I’m just getting lucky, or if I’m doing something right, but in case it’s the later, here’s what’s been working for me as I recover:
Taking blood thinners as prescribed
Sleeping propped up
Icing regularly
Taking it easy. No bending over, no lifting, gentle, short walks around the house every hour or two. I got a good book on tape and spend a lot of time lying on the bed or couch listening with my eyes closed. That’s a lot more comfortable than trying to watch shows or read.
Keeping head straight and neck relaxed as much as possible (especially when I get on the computer!)
No sugar, dairy or gluten (all inflammatory foods)
Deep, gentle, intentional breathing periodically throughout the day
As far as relief from my pre-surgery symptoms, I haven’t had any vision blackening since surgery (although I’m being very careful about movement). Only minor headaches towards the end of the day, which feel more like fatigue than ES pain. I’m feeling a lot more stable on my feet than I did before surgery. The few times I have bent forward I’m still getting a feeling of fullness and pressure in my head, but that seems to be reducing by the day.
And the most surprising and wonderful thing…I wake up in the morning feeling alert and rested (even though I’m still waking up several times throughout the night). I can’t remember the last time I woke up and felt ready for the day, it’s been at least 5 years. That feeling is really amazing, and I’m certainly hoping it lasts!
Fingers crossed that my recovery continues in a positive trajectory!!
Thank you for sharing such great news! It certainly does sound like you’re giving yourself the best possible care by taking things very slowly & carefully. It’s easy to get impatient during healing & start pressing forward too aggressively, too soon. A few of our members have had the low post op pain that you’re experiencing. What a blessing that is for you, & I hope it continues along that path.
You will most likely find that some symptoms come & go over the next few months as your nerves heal. Your vascular symptoms may do that as well as it can take some time for the blood flow to get back to a more normal level once the IJV is opened up. Fatigue is also common after surgery. I found mine lasted about 2 months then simply was gone one day & never came back. It’s more likely yours will gradually fade away. The fact that you’re already waking up feeling rested & alert, after so many years of the opposite, is a giant step in the healing direction.
Please continue to give us updates as to how you’re doing. They are so helpful for our members who are awaiting surgery!
I’m still recovering well from my surgery last week. I did a little more than I should have yesterday and went to bed exhausted with a headache and extra sore neck, but nothing too crazy. I am still having a hard time regulating my heart rate, but I expect that will subside as things heal.
I went on my health portal today and discovered that the surgical reports had been uploaded. Surprisingly, according to some (not all) of these records, Dr. Hepworth removed a lymph node on my left side in addition to my styloid. There is no mention of the lymph node removal in the operation notes signed by Dr. Hepworth, but there is a Pathology Report saying they received a lymph node, and in my health portal, lymph node removal is listed as one of the procedures done. No mention of this (or the possibility of lymph node removal) was made to me before surgery, nor to my husband post surgery. In addition, the Pathology Report lists the styloid that was removed as being 1.3cm long, whereas Dr. H told my husband he removed nearly 3cm.
The surgical report signed by Dr. Hepworth lists symptoms I didn’t actually have, and describes my reasons for surgery as very classic Eagles Syndrome (not vascular). I’m assuming the report was written that way for insurance coverage, but the rest of the report is fairly generic as well. There’s not much specific info in there, so it makes me wonder how much of these reports are form written, with your name just slapped on afterwards.
Is this kind of discrepancy in surgical reports normal?
Is it typical to have your lymph node removed during a styloidectomy?
Does it strike anyone else as odd that my surgeon would have removed a part of my body that we hadn’t discussed removing, and not make any mention of it?
Are there any potential complications or health issues that could arise from having had a lymph node removed?
I’ve put in a medical records request for the full dictation from my surgery to hopefully get better clarity on this, and I have an appointment on Friday with Dr. H’s PA Alison Love. However, I won’t see Dr. Hepworth for at least another month so I thought I’d post here and get all your well-informed thoughts on this silliness.
If you all have suggestions on specific questions to ask at my Friday appointment, or my followup with Dr. Hepworth, I’d also be grateful to hear those. I had to chuckle when all the different surgery people came in prior to surgery and kept asking me if I had any questions…they do this every day. This was my first major surgery. How should I know what to ask? Apparently I should have asked “will there be any other body parts you’ll be removing today?”, but that certainly didn’t cross my mind as a possibility!
Thanks for all the support, you all are invaluable!
I had a lymph node removed during my styloidectomy too. Dr. Samji said it was just in the way. I do think that is common. Also, if the styloid was removed in pieces, it could be that the longest piece was 1.3 cm. My pathology report said that they received a 2 cm piece and several other fragments. Dr. Samji said 3.5 cm was removed. So I’m guessing the fragments were the other 1.5 cm.
there is no specific diagnosis code for vascular eagle syndrome so it is not listed as such. This is the work in progress for validation of this syndrome. So much of what is dictated is in support of insurance reimbursement and coverage, just our system at the moment.
@MsBearshark - For consolation, I had the same type of questions about my operative reports from Dr. Samji. He verbally gave me info post op that wasn’t in the operative reports at all. I felt affronted at first but then figured there must be a reason it was written up that way. My insurance did pay all but a few hundred dollars of my surgical costs so what he wrote seems to have made them happy to pay my bill.
We have quite a few members who’ve had a lymph node or nodes removed during ES surgery for the reason @Ladybug mentioned. The surgeons often don’t know exactly what they’ll find structurally until they open the patient up thus they don’t mention the possibility of having to remove something unexpected. We have so many lymph nodes in our necks, the loss of one, likely small, lymph node shouldn’t be noticeable at all. Better remove it than cause nerve damage while trying to keep it out of the way during styloid removal.
Yeah they claim to have specialties in many areas. They claim to have an Ehlers Danlos program all over their website and make claims how good it is. I had to submit records and got a thanks but no thanks email…“we don’t think we can contribute to your case.” Would not even give me an appointment. Maybe because they saw I had eagle’s surgery? This just happened in the past 6 months! I only did it because my PCP encouraged me to.
Given my daughter has EDS and POTS, Ive spoken to other POTS mom’s who went to MAYO. They ALL did not think highly of their so-called POTS program and I have heard this over and over. Just because it has MAYO on it, doesn’t make it a great place to go. Their reputation is overblown.
