I had my initial visit with Dr. Hepworth Thursday, and he is as kind and patient as we’ve all heard. I feel fortunate to be able to see him as well as have input from this group.
My left styloid is about 4cm and almost completely compressing my IJV. I have several collaterals, or varicose veins. My styloidectomy is tentatively scheduled for February 9th.
Prior to that date, I will be having an ulnar nerve transposition and my spinal cord stimulator battery relocated. When I asked Dr. Hepworth if that joint procedure prior to the styloidectomy would be an issue, he suggested I do all three at once. I specifically asked him about the recovery and he does not think the recovery will be too difficult. (gulp)
For those of you who have been there, were you given any restrictions on flying? Home is about 4 hours from Denver. Our usual routine is to drive home immediately after surgery while I’m still on the “good drugs” then fly back to Denver for the day if/when I need post op care.
Please tell me about using an ice machine for your styloidectomy. I may use my ice machine for the elbow and get gel packs for the eagles surgery? Thoughts?
Please share any specific recovery tips you may have. Thank you!
I’m so glad Dr. Hepworth met your expectations. He is a very kind & caring person. I think his suggestion about getting the ulnar nerve transposition & spinal cord stim battery relocated is interesting. It does make sense to do it all at once. You’ll be more uncomfy the first week or two after surgery than if you did two separate surgeries, but you’d only have to recover once from both rather than go through two recoveries. If your other surgeon(s) operate at St. Luke’s Presbyterian, I’d say go for it all in one fell swoop, but you know your body & pain tolerance, so of course, you should do what you feel is safest & best for you.
There are no flying restrictions that I know of post op. Some of our members have flown home the day after surgery (not usually same day as surgery). If flying soon after surgery, upgrading from the cheapest seats to business or first class is a good idea so you can have more leg room & greater ability to recline a bit. Flight attendants are very kind about supplying ice but you’d need to bring Ziplock type bags for the ice & a wash cloth or two to protect your skin from direct ice contact. At home, gel packs are awesome for icing your neck as they conform to the shape of your neck better than something bulkier. You will get a couple of reusable ice packs after surgery which you can use on your drive home &/or your flights back & forth. Gel packs are not allowed on airplanes (I had a couple taken away by security some years ago due to ignorance )
There are many discussions about post op recovery & what to expect on our forum. You can search for them using the magnifying glass icon & typing in recovery. Everyone’s experience is a bit different, but in a nutshell, you can expect to feel pretty sore & uncomfy for a couple of weeks post op then gradually over the next 6 mos to a year, your symptoms should begin disappearing bit by bit. It can be a bit of a roller coaster ride w/ some symptoms coming & going for awhile before they settle down for good. You may feel extra tired for up to a couple of mos. post op but your energy will return as you heal. The most important recovery tip I can give is listen to & obey your body. If it hurts or is tired, stop & rest. Give yourself permission not to hit the ground running as soon as you start to feel good. Take your pain meds as prescribed for the first week post op, at least, & ice, ice, ice - 15 min on & at least 45 min off, every couple of hours. If you’re taking an opioid, take a stool softener & laxative alongside it starting on surgery day.
I hope the time seems go quickly & your surgery date is here before you know it!
I had ES surgery with Hepworth Nov.
notes on recovery…
Changing altitude was not recommended for me for 6 weeks so I am staying at Denver elevation as home is at 10,000’ in the mountains. That might be specific to my case though as I have ear and Eustachian tube issues (painful blockage, thought to be from ES inflammation) and home is at an extreme altitude. That might play into getting back home after surgery (is your home at a different elevation, have you had ear/Eustachian tube issues)?
I always wondered about flying post surgery, people do it. I guess the likelihood of the plane losing pressure in the cabin is very, very low?
I used gel packs for ES area and did hit a step backward (more pain) with recovery at about day 5 (I think that is common). Recovery is not a straight line. It has been weird how the pain moved around between: neck, under chin nerve zaps, sinus/face pressure, ear, head tinnitus.
I slept in bed using pillows to elevate as I didn’t have a recliner.
My worst pain was in the mouth toward the tonsils. It was a deep, sharp constant pain and it was painful to swallow. That lasted about a week. I had pointy popsicles (made myself with low sugar juice or no sugar veggie juice) that I could put way back in the mouth for relief. I try to avoid inflammatory food (like sugar, alcohol, gluten, dairy, fried foods,…) and found it to help with pain. I was on the edge pre surgery w.r.t. inflammation/pain and noticed a difference when I ate inflammatory foods. It made me realize how hard my body fights day to day with such intake. I had fresh pineapple and papaya cut up and ready post surgery (they are supposed to help with inflammation) as well as smoothie ingredients (veggies, frozen strawberries, ginger and tumeric root), soup and mushy foods.
I was able to walk post surgery and move around. The day after surgery I walked 3/4 mile (with someone there just in case), then averaged 4 miles a day after. I even walked to my post op appointment on day 8 (1 mile each way) as that seemed better than twisting my head around to drive.
Pain meds were used at night and only a few times during the day.
I used Heather’s Tummy fiber (organic, Acacia senegal tummy fiber from Amazon) 1 T before bed in warm water for constipation.
I drove 9 days post op (with someone else in the car to check blind spots) and by myself 11 days out (1 short trip, going for pull through parking spots to avoid twisting my neck too much).
I am just starting to think clearer (less brain fog and pain) now that I am 2.8 weeks out. I am glad I wasn’t trying to work during and think during this time and think the >1 month mark seems more feasible to target for thinking and working.
An aside…my daughter has 2 spinal cord stimulators and is looking to get them removed.
Who is doing the spinal cord stimulator battery relocation? Why is it being relocated? If VIR (Vascular Institute of the Rockies - where Dr. Annest works) is doing it (as well as the ES vascular component) make sure their schedule has time for it.
Dr. Hepworth once said surgeons are weird and don’t like to do more than one surgery at a time. I took that to mean he didn’t always agree with that, as his recommendation for you shows. It could be the same dr doing the ES vascular part is the same one doing the other surgeries plus the surgery room at Presbyterian Saint Luke hospital is state of the art for monitoring nerves during these types of delicate surgeries. It makes sense to use that room while you have it. They put electrodes on me and there was a dedicated person in the room to monitor it. Similar, they said, to playing the game Operation. They let the surgeons know if a nerve reacted then the surgeon knows to back away. I had a good bruise on my chin for about a week after and I guess the blood spotting in my mouth (mostly after brushing teeth) was from electrodes as well??
I guess it also makes sense to limit time under anesthesia, which combining the surgeries would allow for. I wish he would do both sides for ES at the same time. He says it is too risky, you might not be able to swallow.
I have had the other side (the right side, the one not operated on) flare up worse after surgery. I am 2.8 weeks post op and the right side (which also has ES and jugular vein blocked) has tinnitus worse (I think it is from increased pressure). I have heard from others here that happens (other side gets worse after surgery). Hep claims the opposite though, fixing flow on one side helps lessen the stress on the other side, lots of times negating the need to do surgery on the other side. Hmm…I think there are so many other things (besides blood flow) that ES messes up that it’s worth doing the other side if it is known ES (even if there is no longer a blood flow issues).
The vascular surgeon checked out blood flow (going up the groin, on the right side) on both sides of the neck after Hepworth was done removing the styloid. They shave you down there while you are knocked out and go up the right side.
The jugular vein was blocked in 2 places. One high (up by the styloid bone) and the other down lower between the thyroid and hyoid. The lower blockage had scar tissue around it (he cut away as much as possible) and it was ballooned by the vascular surgeon as it wasn’t correcting itself.
Does anyone know why it would be blocked lower (by thyroid/hyoid)? Is that an ES thing or something else?
The week post op appointment is when they remove the tape and stiches. Removing the tape was painful, maybe because it had gotten wet when I tried to bath? The wound area was sticking out like a golf ball it was so inflamed. I left the office with no bandaging and instructions to keep it out of the sun.
I would recommend getting bandages for after. The neck is a hard place to get a regular bandage to stay put. The wound was 2.5-3 inches long (probably seemed longer than it was due to swelling) so a large covering is needed. I got some silicon scar sheets (Amazon) that have glue and go right over the scar (I put neosporin on the wound first). I got the sheet off 4 days later via putting oil (I use Tanamu for wound healing) around the loose edges and letting very warm water flow over it in the shower. It wasn’t too awful : )
I am going to try a different scar sheet next ( BoySea Silicone scar sheets) as they don’t have glue and getting them off might be easier. We’ll see.
@juliezuber - Great & thorough update. Thank you so much!
I totally agree with this statement as the proof lies with those who don’t have vascular issues w/ ES but still have terrible symptoms which come from cranial nerves that are irritated on a regular basis by the styloids &/or calcified stylohyoid ligaments.
It’s unclear whether or not a secondary blockage could be related to ES. Since yours was caused by scar tissue, it’s possible your styloids had caused a shift in some soft tissues that became irritated which caused scar tissue to be laid down as a protective agent. The scar tissue in turn was in a place that caused the IJV compression. On the other hand, the cause could have been totally unrelated.
Tape removal was more likely painful because your incision was still tender from the recent surgery. I remember going through the same thing after my surgeries. My incision was also quite swollen for 3-4 weeks post op before it began settling down. The less you irritate it in early healing, the sooner it will settle down. I recall being told not to begin using Mederma Scar Cream until 4 weeks post op. I didn’t know about silicone scar strips back then. You may be interested in the following post which recommends a specific brand of silicone scar strips which several of our members have used & really liked:
It sounds like your healing is off to a good start. I expect the symptoms you still have will gradually disappear over the next 6-12 mos.
That’s an excellent point abut elevation, I didn’t think of that. We live at about 4500, but will over over an 11,000 pass to get there. I’ll see what Dr. Hepworth has to say and report back.
My neurosurgeon who put the SCS in, Dr. Barolat will move the battery. It has worked its way too close to the surface and is (painfully) just under the skin rather than happily tucked under a layer of fat. You are right about PSL and their nerve monitoring. Unfortunately I’ve had waaay too many surgeries there (with Dr. Annest!) and know exactly what you’re talking about.
Was the vascular surgeon in your surgery from Vascular Institute? Did you have pain and/or an incision at the groin insertion site?
Your tip on popsicles is excellent, thanks.
I’m glad you’re beginning to feel better! I’m sure this will be a long recovery journey but worth it in the end.
That’s a really helpful & detailed post, thank you! It sounds like you’re doing well with recovery, but annoying your other side has ramped up, I hope that settles…hope you can get back on Dr Hepworth’s list if you want that side doing too so you don’t have to wait too long
I will ask Hepworth what he thinks caused it next appointment and if there is an ES connection. Here is one thought…Hepworth found an infected gallbladder in me because I had sinus infection(s) that were of a bacteria that is usually only found in the gut. He thought it was coming up the lymph system so he checked the gallbladder. The lymph system (cisterna chyli) transports fatty chyle from the intestines to the left side of the neck. It could be that infection caused scar tissue which caused jugular vein blockage lower by the thyroid/hyoid area. We talked about this pre surgery. I will ask him at my next post surgery appointment and see what he now thinks and update this.
Yes, it was Dr. Annest from VIR. I had zero issues with the groin site, just bruising. I feel very fortunate. Could be the neck/head pain was so bad I just never noticed it
re SCS…for what its worth, this was a strange one too…my daughter had pelvic pain and after multiple interventions, including 2 spinal cord stimulators, she discovered eating gluten triggered the pelvic pain. The explanation we got was that it caused a sac around her organs to spasm causing debilitating pain and endometriosis (leading to more pain).