Surgery is scheduled for January 8th

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Surgery at UNC Chapel Hill (Cancer Hospital) with Doctor Hackman is scheduled for January 8th, 2024. This will be a right sided styloidectomy. Left side will be safer to leave in for now as it isn’t currently symptomatic and the potential for complications re: swelling due to a bilateral approach are too high with vEDS. At this time there is no plan to remove my atrophied parotid gland. Doc Hackman feels my salivary gland issues are due to my underlying metabolic issues. He plans to treat my TMJ and other related issues after surgery and recovery.

Time off work is booked and approved with lots of support from management and colleagues. For now, I have taken two weeks off starting January 7th. I will be able to take more time without issue if the need arises. When I return to work I’ll be initially working from bed and with more of a limited and relaxed scope than usual. I’ll be as productive as my health allows and there will be zero pressure to perform at my normal 100% at first. Nobody needs to worry about this! I do work from home as it is and can be as comfortable and medicated as I need to be (I am always medicated anyway).

Mom bought plane tickets and will travel from Ohio on January 6th, landing in RDU at 12 noon, to be picked up by my brothers that live in Durham. I will drive to Durham on January 7th for pre-op labs and stay with mom and brothers. Mom will accompany me to the hospital the morning of the 8th for surgery (call time TBD).

I will spend at least one night in the hospital. Once discharged, mom and I will stay at a local RDU hotel for 4 nights so I’m comfortable and near the hospital/surgeon in case of complications. Luckily, my husband has a few hundred thousand Hilton Honors points due to work travel, so the hotel won’t cost us a dime!

The following Sunday, the 13th, my mom will fly back to Ohio and my brother will drive me home and spend the second week of recovery with me, mostly to help care for my pets and walk my dog. My husband travels full time for work and while we’re devastated it is not in our best interest for him to take time off for this. He will be on the heels of several unpaid weeks off for the holidays (he is a gov contractor) and we simply cannot afford a month+ of no income on his end. It’s a tough decision, but we both recognize his stress levels when in hospital with me are extremely high and hinder his ability to advocate for me in the effective and empathetic way my mom can anyway. So this plan is the best plan and is set.

I am terrified. I am working through PTSD related to my near death experience (arterial dissection and lifesaving emergency surgery) in 2018 (and the re-traumatizing experiences I’ve had since then) with my therapist. Because I’m constantly exposed to the triggers of my PTSD due to frequent hospitalizations and surgeries it’s been difficult to heal, mentally, but I’m trying hard. I know a positive outlook means a more likely positive surgical outcome. It’s proven!

My J tube surgery (done as an open abdominal procedure) in June was a pretty significant traumatizing event as well; I was left without pain management for nearly 13 hours once admitted from PACU to the floor and the overnight resident ignored pages from the nurse, nurse manager and house supe as they desperately attempted to deal with me, their inpatient palliative care post-op with vEDS having a pain crisis that raised my BP and put me in legit danger. When the surgeon came in the next morning all hell broke loose and I got my pain management. I am terrified of experiencing this again so I’ve had a serious convo wirh Doc Hackman about my pain management and acute on chronic post-op pain in a palliative patient with vEDS who is also a natural redhead. He verbally acknowledged my needs and promised he’d ensure I don’t have that issue with them. He said they would never allow such a thing to happen at this hospital. He noted in my post-visit notes that my fears surrounding pain management post-op are “entirely reasonable” and that he’ll “see to it that an appropriate pain management plan is in place with [my] involvement.”

I have a phone appointment with Doc Hackman on December 6th during which I’ll discuss with him the procedure, post-op inpatient pain management and outpatient pain management as well as recovery expectations with him in more detail. I have my pre-op anesthesia appointment on December 11th via phone call as well and will both discuss pain management (ex: proactively giving me pain meds in pre-op) and anesthesia (I’m difficult to put and keep asleep).

I know this is what’s best for me. Expect many more posts in desperately anxious states of mind between now and January 8th. I hope that day is the day my life vastly improves. Please give me any recovery tips specifically regarding this surgery you might have! I am a seasoned patient recovery wise but have never had neck surgery before.

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Appointment with Dr. Hackman
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So pleased that you have a date for surgery! And that your family are helpful and supportive, good that your mum will advocate for you…It sounds like you’ve got Dr Hackman’s attention re post-op care and pain relief, so that’s good, you’re doing all you can to ensure it doesn’t happen again, so that box is ticked!
As for specific neck surgery recovery, hopefully Dr Hackman’s patients can chip in, as different surgeons have different techniques. We have had quite a few discussions I think from his patients who were given a ‘neck bra’ to minimise swelling in that area, although if I remember right it was double styloidectomy patients. Otherwise steroids can be given to help with swelling, if that’s possible for you, or a drain is sometimes put in overnight, and of course ice packs.
Sleeping semi upright will ease swelling, so get prepared with a wedge pillow and maybe a V shaped pillow to keep yourself propped up. The gel ice packs are good as they can be moulded. Obvs food/ eating won’t be an issue, but some members have sucked popsicles to ease swelling, I don’t know know if you would be able to have that?
Usual advice is to keep up with pain meds regularly so it doesn’t get out of control but you know more about pain relief than I do!
Expect ups & downs with recovery, you will have some better days & then worse days, so don’t panic, and obviously swelling can take a while to go down, and nerves can take up to a year to heal so it may be a while before you notice any improvements after surgery…
One of our members has done a surgery shopping list which might be helpful, here’s a link:
Surgery shopping list - General - Living with Eagle
And there might be other useful info in the Newbies Guide Section about surgery:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
I think there have been a few discussions with tips for travelling you could search for, although being driven will be less problematic than flying.
Hope that your next phone appt is reassuring, and will be praying for all to go well for you :hugs: :pray:

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It’s so great to hear that your family is rallying around you to help as much as possible for your surgery w/ Dr. Hackman! Family support is very important if it’s available.

I’m sorry for the problems you had w/ pain management after your J tube surgery & can’t imagine how scary & painful that was for you. I’m really glad you’ve aggressively discussed this with Dr. Hackman & have his reassurance that type of scenario won’t happen on his watch.

You know we’re here for you no matter what your state of mind is, @slekeille, so please write whenever you need reassurance, courage, or just a “listening ear”.

I am praying for all to go smoothly up to, on & after your surgery day. Also that this surgery will make a tremendous difference in how you feel. :hugs:

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Hi fellow warrior, congratulations on the surgery finally scheduled, we happen to have it on the same day with the same doc :grin:
I appreciate your thorough post as it gave me some useful ideas and things I still have to discuss with Dr. Hackman like preop and post op pain management. It’s wonderful you have such a great support system. In my case it’ll only be my husband as we have no family or friends close by to help. Coincidentally my husband also has a full time traveling job that he will be taking time off of to be with me and our 3 year old son. My surgery is bilateral and I have some concerns about the post op swelling and inflammation and even thought about doing one side at a time but would rather get it over with in one go, we will see :joy:
I’m wishing you all the best with your upcoming surgery and a quick uneventful recovery/healing. :heart:

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Elena! We are having surgery on the very same day? That is wild! What day are you traveling into the area? I’m wondering if perhaps the day before surgery we should meet up and have a small little manifesting session to wish each other luck? It feels so unlikely that we got scheduled for the same exact day and it would be strange to know we are both in the hospital recovering but hadn’t met! Also, my mom and two brothers will all be around (brothers live in Durham together) so please let me know if your family needs anything before surgery. I can also ask my mom if she’d mind me giving you her number for your husband. They’ll likely both be waiting around a lot during some of the same time.

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Thank you so much. I am working on being in a good state of mind. My sister is manifesting for me in big ways that align with her own faith and I appreciate her for that. I am doing a lot of mindfulness and grounding exercises myself. My mom is continually reminding me the surgeon wouldn’t perform the surgery if he didn’t feel he’d get a good outcome. I’m trying! I know I need this! I’m just so scared lmao.

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As always, thank you for the encouragement and the thorough response! :black_heart:

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@slekeille Absolutely, I’d love to meet up and manifest together, I will be rooting for you while you’re in surgery and after whether you have it before me or after. I haven’t decided about exact date of traveling there yet. As I mentioned before my husband has a traveling job and he got transferred to NC at the beginning of October (I took it as a sign from universe for me to see Dr. Hackman :grin:). We’ve been staying at a campground in Semora, it’s about an hour from Chapel Hill. I’d love to exchange numbers and for my husband to have your mom’s number, he’s a nervous wreck with all the stress of past years and especially upcoming surgery and the unknown afterwords. He does have a lot of friends and family back in Michigan where he’s from but of course that’s 15 hours away so not of much help, and our home is in Nebraska which is even further away 20 hour drive :joy:
I was thinking about renting an Airbnb in Chapel Hill for 3-5 days post surgery to stay close to the hospital just in case and then going back to Semora which recovering while living in a camper is probably not much fun especially with our 3 year old son around but we can do it.
I’m sincerely hoping to connect, you’re welcome to send me a PM, I haven’t done it through this website yet so not sure how to do it.
And if you need anything at all while you’re in the area please let me know, I’d be glad to help if I can😁

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@Elena - To send a PM, simply click on @slekeille 's avatar or her screen name. That will take you to a page where you can start a PM.

I’m glad you two are planning to meet. Speaking from experience, it’s really great to be able to talk face to face with others who share ES in common with you,

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@Isaiah_40_31 thank you so much, you’re as always very helpful. It would be great to meet @slekeille and have someone to connect to who understands. Additionally I’m a little worried about my husband’s ability to coordinate administrative things as it’s always been my job :grin:. He’s amazing at being a provider, supporter and fixer of everything but not at coordinating events, making phone calls etc :joy: So it’ll be great for him to be able to call someone who could provide advice or even moral support :heart:

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