Surgery soon

I am scheduled for bilateral styloidectomy with Dr. Hackman in North Carolina on Mon June 10th. I am traveling from the Midwest. And driving back after surgery. I am very nervous, and need reassurance. I have had issues with anesthesia in the past. Waking up during wisdom teeth removal and panicking during carpal tunnel surgery which is like a twilight anesthesia where they had to put me all the way out. I am also overweight so scared of that extra risk during surgery. I am very nervous about traveling back home after the surgery. If there are any tips from amyone for before and after surgery, I would greatly appreciate it. In the past I havent done well with pain medication. I get nauseous and dizzy easily. Am dizzy daily from ES. I am hoping to be able to bend over again and lay flat on my back again and for tmj symptoms and maybe tos symptoms to settle down after recovering from surgery. I get terrible ear pain, facial pain, eye pain, headaches, dizziness, presyncope. I have bumps under my ear behind my jaw that swell and tmj symptoms. I have already gone thru tmj teatment woth no relief. It is really hard as the symtpoms wax and wane.
My biggest fear is that the surgery will not relieve my symtpoms. Mine all started with vertigo in january of 2022. I was diagnosed with all kinds of things before Eagles syndrome, like bppv, vestibular hypofunction, cervicogenic dizziness. Also suggested it was post covid syndrome or menieres. I was diagnosed with Ehlers Danlos Syndrome years ago and POTS happy to hear Hackman thinks EDS is associated with ES. I also have cyclical vomitting syndrome and afraid of that being truggered after surgery. I know I will still have symptoms of EDS, but I cant live not being able to lie down and bend over.

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I’m originally from Iowa. Majority of my relatives in Boone and Greene Counties (and others as well). I have not had surgery yet - are you splitting that drive back into 3 days of travel?

@Carlak - I’m glad your surgery is coming up soon. I have a concern based on your statement that you’re driving back home after surgery as it sounds like you’re doing this solo. Is someone coming with you to drive you home afterward? I ask this because you will not be able to do a longish road trip on your own for several weeks after surgery as your neck will be stiff & sore & you may be on medications that prevent you from driving. If someone else is doing the driving then it will be ok.

Since this is the case, it’s important for you to let Dr. Hackman & the anesthesiologist know you’ve got EDS & had problems both during & after surgery so (s)he can help prevent those from happening this time. It’s been documented that people with EDS need extra anesthesia to help them stay asleep through procedures as their bodies metabolize anesthesia faster than normal.

There are a number of different types of Rx pain medications. If you know of particular meds that have caused bad side effects, you can request not to have those Rxed. If you can tolerate it, you should request a course of post op prednisone. Dr. Hackman doesn’t typically offer this but many of our members who’ve seen him for surgery have chosen to request it a day or two post op due to pain & swelling. If you get it pre-surgery, you’ll be ahead of the game.

Swollen glands are not uncommon w/ ES. We don’t know exactly why but it seems those can be part of the immune system’s reaction to the nerve & vascular issues that ES can cause. Those may go away after your ES surgery if ES is the cause. Your TMJ symptoms may also decrease. Mine did.

This may be due to your vagus nerve being irritated by your elongated styloids so it may go away as your vagus nerve heals once the styloids are removed.You can request an Rx for an anti-emetic for post op use, too.

We have a number of members with hEDS so we also believe ES can be a “side effect” of that because the ligament laxity caused by hEDS sends a message to the brain that the neck is unstable & needs reinforcement to help stabilize it. The reinforcement comes in the form of stylohyoid ligament calcification &/or styloid elongation which in turn causes its own set of problems.

The good news is that having your styloids out will most likely reduce some of your symptoms & eliminate others. You do need to realize that this is not a quick surgery to recover from, & it may take 2-4 months before you start really noticing the positive changes & up to 12 months for the affected nerves to fully recover. DO NOT be discouraged if you don’t notice symptoms improvement soon after surgery. Also symptoms can come & go during the months of recovery. This is typical of nerve & vascular healing.

Take a wedge pillow with you so you can sleep with your head elevated for a week or more after surgery. Based on doctor recommendation, head elevation of ~30º is best.You’ll also need at least 4 gel ice packs for icing your neck in the first week or two post op. You do this 20 min on & 40 min off w/ a thin towel or cloth between the ice & your skin.

There is good information about what to expect after surgery in this post: ES Information- Treatment: Surgery - Scroll down to Recovery from surgery & read the information there.

I hope all this info is helpful & answers your questions but please feel free to keep asking if other things come up.

I’ve added your surgery date to my calendar & will be praying for you that day in particular. I wish you safe travels as that’s quite a road trip you’re taking.

:hugs: :heart:

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We are hoping to split it into two days. We drove there and back for my initial appointment and two days was fine. If i need to stop sooner, we will break it into 3 daysm

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My boyfriend is coming with me and will drive on the way back. I plan on touching base with Hackmans nurse soon and will mention my anesthesia concerns, and pain med concerns. Interesting info on cyclical vomitting and other tips. Thank you for being so helpful and encouraging. I really appreciate the prayers.

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That’s super good news, @Carlak! Be prepared to recline your seat to some extent on the way home as that may also help reduce your post op swelling. Bring an ice chest with you & pack your ice packs frozen. Bring some gallon Ziplock bags w you & if all else fails, you can stop at fast food restaurants along the way & ask for a cup of ice which you can dump in a Ziplock to use instead of the gel packs.

Also it’s a good idea to start a stool softener & laxative as soon as you start on Rx meds since they tend to be constipating. You do not want to add that trouble to your week 1 post op pain.

:hugs:

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I can understand that you’re anxious about surgery after your previous ones! Definitely mention medications you’re sensitive to at your pre-op appt, as @Isaiah_40_31 says, and mention the nausea, ask for an anti-emetic medication to be given.
Lots of advice & links to discussions etc in the section @Isaiah_40_31 mentions, and if you search for ‘what to expect after surgery’, it should come up with other discussions, there are quite a few current ones as well. There’s also a link to a surgery shopping list one of our members put together!
There’s a few tips about swelling & avoiding constipation in this discussion too:
First appointment with Dr Jonathan Hughes - General - Living with Eagle
Will pray for a successful surgery for you too :hugs: :pray:

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You’re in good hands, @Carlak. Dr. Hackman and his crew are awesome. Don’t be shy! Tell Dr. Hackman your concerns, and repeat them to his surgical assistants, anesthesiologists, and nurses… you’ll meet them all! Let them know your concerns about surgery and also your ride home.

I had quite a bit of nausea after surgery (not eating for about 20 hours combined with all the meds, I think), but that did pass. I do believe they gave me some anti-nausea meds (post-surgery memory is a bit foggy), and breakfast the next morning was wonderful! My husband did stay with me in the hospital, which was very nice, but the nursing staff was attentive. I may have had to ring twice a couple times, but they always came, and were very kind. So it is nice to have someone in the room with you to hand you things (like the call button that fell off the bed a couple times!).

As @Isaiah_40_31 said, Dr. Hackman doesn’t always prescribe Prednisone. I did ask for it, but he said he would if he felt it would help. He found a lot of inflammation during surgery, so he did prescribe it. I did wait to take it after I got home, as it can cause dizziness. We flew home on day 2, and I started it on day 3. I didn’t have a ton of pain and only took 2 oxy after leaving the hospital (took Tylenol and Ibuprofen), so I didn’t have any constipation issues (thank goodness!). I had (and still have) numbness on the front of my neck up to my chin, which is probably helping to numb the pain. I’m ok with that.

As @Isaiah_40_31 also said… relief from our symptoms can take time. Dr. Hackman told me that only 25% of his ES patients see immediate relief from some symptoms. I’m in the majority and practicing patience. I have my 2-week follow-up call with him tomorrow, and plan to post more after that.

Again… don’t be shy. Before I left the hospital, a nurse set me up with all sorts of things, including several of their nice blue “barf” bags… I was very nervous about tossing it on the long airplane ride home. I didn’t need them, but I did take a Meclazine (after getting the ok to take it with the other meds).

I told Dr. Hackman he was a medical rock star on this forum… he laughed. It gave me comfort knowing how many wonderful souls from this forum have been through his doors and successfully treated. Sending you lots of positive vibes and prayers for Monday. Please keep us posted!

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Thank you for your very helpful update, @DeeCeeNorth. It’s great to know you’re doing so well!!

I loved your last paragraph! Dr. Hackman is one of the rockstar doctors on our list & we appreciate him very much! Thank you for affirm that to him!

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I 3rd the claim that Dr. Hackman is a medical rockstar! So I see him tomorrow morning for surgery (June 5th). Glad I READ THIS POST. Again, thank you Isaiah for the list you provided (I forgot to buy ice packs and am going to Target in the AM!!!).
Carlak I’m staying at SECU House a total of 8 days, with 2 queen beds. I highly urge you to call them the day before your trip to see if you can stay here. The rate I think is $54 night. My bill is under $450. Breakfast isn’t provided, nor lunch, but morning bread and coffee are. Dinner is donated by different organizations and is pretty darn good; plus it’s included.
Lastly, hold the line and stay your course!! Tomorrow I’m not eating a thing all morning and have to stop drinking fluids (ONLY water, apple juice, black coffee or gaterade) byu 930AM. No biggie. And I’m doing this alone…though I’ve got a friend flying in from GA on Sat to help me with the departure on the 11th.
Keep the faith! :slight_smile:

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@HappyBear Wishing you the best possible outcome today!

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Wishing you the best today, @HappyBear!! You’re in good hands! :sparkling_heart:

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Thank you all!
:slight_smile:

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Thank you. Good luck today!

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Praying for a successful surgery :pray:

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Hey! I had my right side done with Hackman on January 8 of this year and I am having my left side done on August 2. He truly is the rockstar that everybody else is claiming him to be. He listens intently, he practices medicine with compassion and he is an excellent surgeon. My first styloid was 2.5 inches long when it came out, wrapped up in important vasculature and shredding vital cranial nerves. He managed to remove it without majorly damaging anything except for that pesky styloid. He had to break it in half to get it to come out.

I have vEDS. I also have gastroparesis and several other major comorbid conditions. I am a complex medical case and Hackman still took me on without hesitating and I am so glad he’s my surgeon. I’m very much looking forward to my second surgery in a couple of months.

I am concerned that you are planning to make the road trip back so soon after surgery, even though you are not planning to drive. I only live three hours away and I had to stay in a hotel in Durham for five nights after surgery before I felt like it would be possible to sit as a passenger in the car for three hours home. Those first few days, I wasn’t able to stay up out of bed for more than a few hours at a time because my neck was so swollen, my neck and face were so stiff, I was in so much pain and I was so tired. That was with high-dose pain medication because I am already on pain medication every day and had more added after surgery. However, by the five day mark, it was definitely possible and by the one week mark I was spending my days mostly up and awake and conversational. At the three week mark, I actually flew from North Carolina to California for a work retreat. So, I’m not saying that it would be a long stretch of time, but you should definitely consider staying for a couple of nights if possible.

Talk to Hackman about medication for nausea, inflammation, and pain to take after surgery. Tell him which medication you’ve had issues with and which medications work for you. He is extremely willing to help and to do what the patient says is best for their body. His team is just as fabulous.

Good luck! You truly are in excellent hands.

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So good to hear from you @slekeille & thank you for your very positive update & support of @Carlak.

You’ve been on mind recently, & I was wondering when your next surgery is so thanks for sharing that as well. It’s such good news that you’ve healed well from your first surgery & after your second one, you’ll hopefully feel even better.

We keep hearing praises for Dr. Hackman so your accolades confirm his expertise & compassion for his patients.

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I am definitely still healing from the first surgery, and I have random days where the swelling flares up, and the pain comes back with a roar, but I’m in a really good place all things considered! Enough of a good place that I am looking forward to August 2.

I actually told Dr. Hackman at my initial consult with him last spring about finding his name on this forum and all of the nice things that everyone had to say about him. I will never forget the exceptional bedside manner that he displayed (better than any surgeon and most doctors I’ve ever met) at that first appointment and how it immediately put me at ease about letting him operate on me. I was sure that I would leave the consult needing time to research and decide, but I left the consult with surgery scheduled! Every single conversation I’ve had with him since that day/since my first surgery (we have a phone appointment every six weeks or so) has just reinforced the fact that he is the best!!!

I will make sure to create my own topic the night before surgery and update y’all after surgery similarly to last time.

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@HappyBear - How did your surgery go? How are you feeling? Please update us when you feel up to it!

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Please see my post and pictures here:

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