My surgery is scheduled with Fargen this Friday. I am so scared. I have so many rational and irrational fears. Like, I’m a solo mom, what if something goes wrong and I die or don’t wake up? What if I get facial palsy? What if I get a post-op infection or sepsis? What if I end up feeling worse than before surgery? How does my new EDS diagnosis affect surgery? What if it doesnt work? Like I said, rational and irrational fears. Maybe they aren’t irrational. I dont know.
My thoughts are racing and I don’t know how to ease these fears. I could really use some encouraging words and success stories. Also, how long was your recovery? Any post-surgery tips?
Hey Kelly,
I’m Merl from the modsupport team here on Ben’s Friends
For anybody looking at major surgeries, we go through those very same questions. Well, that is, I do.
All of those ‘What if’s…?’ as I call them ie What if ‘X’ happens…? what if ‘Y’ happens…?
My advice: Deal with the things within your control.
I set up my will, setup my ‘medical power of attorney’. Made sure I had all of my insurances sorted, all of my paperwork was in order. If it was within my control, I set my mind to dealing with it all but, the medical side of things, I had to accept I had no control over that. Once I was on the gurney, it was all up to the medicos. My acceptance of that fact was not easy.
And yes, my mind took me to the irrational side… …repeatedly. ‘TRY’ to deal with the ‘Now’. Not the ‘What next?’. Now, I say ‘TRY’ because I’ve required a few surgeries and each time my minds runs away with itself to those ‘Worst case scenarios’ and I ‘TRY’ not to go there. I need to keep my mind occupied doing anything to stop my mind. Set up your environment for recovery. What will you need? A quiet zone? A comfy zone? an area just for you. A zone of peace. Stocked with the stuff you need, lots of pillows. If you have your technology available, make sure you have your cables/chargers etc near by.
Foods? what could you eat? Try to make a menu plan BEFOREHAND. Stock up yout fridge and cupboards, so that post surgery all you have to worry about is recovery. Setup a bit of a support system, people who you could call upon if the need arises.
Look, we all hope/wish/pray it’s never needed, but it’s much easier to be setting this stuff up prior than trying to do so whilst you’re in recovery. A bit of a back up plan.
Best of luck with it all
Merl from the Modsupport Team
@mnkellyjo - I’ll start by saying Dr. Fargen is a “super surgeon” i.e. he’s extremely skilled as a surgeon. He knows what he’s doing & will do what he feels will give you the best outcome. Honestly, I’ve been on this forum since 2014 & know of no one who’s died from ES surgery or post op infections. We also have quite a number of single moms who’ve gone through what you are & have come out very well post op.
It’s best to have help for the first week after surgery & maybe the second if your child/ren are young & fully rely on you. You’ll need about 10-14 days of recovery before lifting anything reasonably heavy (but ask Dr. Fargen about the limitations to be sure what they are). Your symptoms may come & go for a number of months after surgery & even up to a year for the most tenacious ones. This is common with nerve healing.
Doctors doing the external (transcervical) approach monitor the nerves to help keep from damaging them but if there are one or two that need to be moved to access the styloid during surgery, they can become irritated & more symptomatic for awhile post op. The most common ones are the facial nerve (most commonly result is a one sided lower lip droop) & the glossopharyngeal nerve (most common result is First Bite Syndrome). The side effects of the FN & GPN almost always go away within 2-3 months, but I’ll tell you that both a lip droop & FBS are more tolerable than ES symptoms.
Take courage that you’re in the hands of a very capable & accomplished surgeon & trust that you’ll come out better after surgery. All of us who’ve had surgery have had the pre-op jitters so can totally relate to your fears & concerns. I’ll also pray for you to feel peaceful about having surgery & expectant of good things from your surgery.
I don’t think they’re at all irrational, I’m glad you’ve reached out on here for support @Mod_support / Merl’s given you really good practical advice, hopefully I can help with some of the specific ES surgery points…Facial palsy can happen after surgery, but this does heal with time- the nerves are monitored during surgery to ensure that they’re not under too much stress. Some members have had facial weakness, sometimes one eye not closing, but have found exercises to help and have regained the feeling. Post-op infections with external surgery are very rare, you’ll be given advice about keeping the wound clean and what to look for. It’s important to use an ice pack covered in a towel regularly which will help with swelling, and if you can sleep semi-upright that will help.
You might not be able to open your mouth wide and chew very well after surgery, so it’s a good idea to get soft foods in and smoothie ingredients ready, but not everyone has this.
It’s very rare to feel worse after surgery, apart from the first week perhaps. So keep up with the pain meds you’re given, don’t leave a gap or it could be harder to get on top of the pain. Also something ready in case the pain meds make you constipated is a good idea! Most of us have had at least a decent reduction in symptoms- if you have time to read past discussions, there are lots of success stories if you search for that. I was really worried that swallowing would be affected, so the first thing I did when I came round was to try swallowing; it was fine & not affected at all. We’ve all had things we’ve been scared about, & as your a single mum that’s totally understandable! You will need to take things easy for a bit; have you got support & help?
With my first surgery, I had trouble turning my head for 2-3 weeks, so wasn’t able to drive, but second surgery I didn’t have that, it might be something to think about in case though. I was able to be up & about & go for walks after the second day, but some people are more tired. Lifting isn’t good until everything’s healed; how old is your child/ children?
I had vascular ES & those symptoms improved really quickly, it does vary though. Be prepared for recovery to be up & down a bit & don’t get disheartened by set backs, it’s quite normal.
Praying all goes well for you on Friday!
You’ve gotten some fantastic advice. I’ll join in sending all best wishes for a sense of centered calm in the days before surgery. Dr. Fargen is extremely experienced - you’re definitely in fantastic hands. You’ve got this!
Good luck and best wishes for your surgery, @mnkellyjo! I’ll be thinking of you and sending positive thoughts to you and your surgeons across the pond. May everything run smooth with the best outcome for you and quickest recovery.
Hi, I am 3 weeks out of Internal Jugular Vein decompression including: styloid ectomy, C1 transverse process, shave, fasciotomy, digastric, muscle clip, and artery removal. I’m documenting my story on YouTube, and you may find it helpful and (hopefully) I can calm some of your fears. https://youtu.be/d-W5_M1fQO4?si=AdtCEIycNcEMX9c1 Here is my three week update, but there are other videos, pre-surgical and post surgical that you may find helpful
Hi! How did it go? How are you feeling? I’m sorry if you’ve posted another update – I haven’t seen it, though I have looked! I hope that you are feeling better already!
Thank you so much for your support. It didn’t go very well. It went from a 3 hour surgery to an almost 5 hour procedure. My anatomy looked much different from the scans & he was unable to remove my SP. Apparently, I had a ton of tissue binding and scar tissue that he had to dissect. And my SP was not fixed or the reason for compression. He said it was like a toothpick and would disappear when he’d try to get at it. After digging around in my neck for almost 5 hrs, he needed to stop for my sake. He also wanted to stent my IJV ASAP so that scar tissue, etc wouldn’t compress the vein again. Pain from surgery wasn’t too bad. A week and a half later, Fargen put a 6mm stent in from C1-C3 and a 14mm stent from C4-C6 to stop the smaller one from moving. Pretty genius. He said my IJV was 100% occluded from c1-c3 when he put the catheter in.
Everything went beautifully until the headache kicked in an hour after. That was on 11/6/23. No amount of meds will touch my headache. It wraps around my head from the base of my skull to my eye (left side-same side as stents). And my ears are ringing like never before. I’m in so much pain and I cant be upright for long because of it. I’m very scared and am praying that it will go away once the inflammation goes down.
Oh no. I am so incredibly sorry to hear this. I will be hoping beyond all levels of normal hope that you get relief soon, somehow. Do they have any plan for what’s next?
Oh no, I’m so sorry that you’re feeling rough after surgery…have you seen Dr Fargen for a post-op follow up? It sounds like surgery was quite an ordeal for your body, and then to have another surgery for the stents is alot, so hopefully the headache you have right now is related to that. Maybe steroids might help with the swelling and inflammation? Are you able to ice your neck or is the headache too painful? It could maybe be pain from the Trigeminal nerve otherwise, if Dr Fargen had to do lots of digging about, so if you’ve not tried nerve pain meds that might be worth a try?
Praying that things settle down for you soon, and sending you a gentle hug
WOW! What an ordeal, @mnkellyjo! I’m glad your styloid was not the problem but am so sorry for the length of your surgery (which is traumatic for you/your body in itself) & the end result of needing such extensive stenting.
I totally agree with @Jules that your pain could be nerve pain & that a course of Prednisone might help you tremendously at this point. A nerve pain med might be best, too, for pain as regular pain meds don’t work well to stop nerve pain. I’ll be praying that as your inflammation goes down & recovery progresses, your horrible headache will fade away sooner than later.
So sorry to hear that you were in pain post op
May I ask as to how you are now?
I’m considering having a stent in my occluded jugular , I’ve had a 3 decompressions including c1 shave but it won’t stay open
Many thanks and I hope you going ok now
Best
Phi
There’s been a few mentions in discussions about stents, & how they’re risky in veins particularly , so best as a last resort…although it sounds as if you’ve exhausted all other options?
