In Denver - surgery with Dr. Hep tomorrow, finally!

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It’s been a long journey but I’m finally here. All the logistical nightmares have been taken care of , all my ducks are in a row and I’m set for a left jugular decompression tomorrow at 1:30.

The past couple of weeks have been a nightmare, not only logistically but also because of going off of the blood thinners. I was vividly reminded of what life was like before. I’ve been completely wigging out, not necessarily nervous but it’s like all of the past 5 years has come crashing in on me at once and it’s emotionally overwhelming.

I wouldn’t be here without you guys in this forum, thank you so much and please pray for me tomorrow :pray:

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Wishing you all the best for tomorrow and for a smooth recovery :pray:

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Thank you for letting us know where you are on your journey, @Rather_b_hiking! Of course I’ll pray for you & for Dr. Hepworth as he operates on you. I anticipate that you’ll have great results! :hugs: :pray:

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Good luck!

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Will be praying for you, best wishes for a successful surgery and a good outcome :hugs: :pray:

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Crossing fingers and toes for a good response!

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You are in good hands! Yep, when I stopped the Brilinta for surgery the pain went up too.

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He seems a great doctor. Hope all goes well with surgery. D

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Good luck! Thinking of you. Hope everything went well. Sending best wishes and positve vibes for recovery. Take care.

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Hoping you are doing well. Praying for and quick recovery and uneventful healing

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I have surgery scheduled coming up for the same left IJV decompression/styloidectomy.

  • How did your surgery go?
  • What do you have planned for recovery?
  • Are you staying in Denver?
  • I also have children - how did you go about making sure you had the appropriate care?
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@Hello_World - I believe most people stay in Denver for the week post op as there will be a stitch removal scheduled abt a week after surgery w/ one of Dr. Hepworth’s NPs.

As far as recovery goes, the first week is the worst w/ days 3-5 being when swelling peaks, & often, so does pain. It’s important to stay on the prescribed pain med schedule through that time. If you don’t have any, get 2-3 gel ice packs to use for the first couple of weeks post op - 15 min. on & 45 min. off. Use a thin towel/washcloth between your skin & the ice pack. You’ll also need to start taking a stool softener & laxative ASAP after you have surgery as the Rx pain meds are VERY constipating, & you don’t want to be dealing w/ that, too, right after surgery.

If you have any family or friends who live near you who would be willing to care for your children while you’re gone, that would be ideal. It’s also wise to bring a relative or friend with you to help you for the first few days post op though you won’t necessarily be bed bound, the pain meds can make you loopy.

You will be more tired than usual for a couple of months after surgery, but you should be pretty functional by the end of the second week post op. Some hospitals offer lower cost housing in the neighborhoods around them. You could check with Dr. Hepworth’s ofc or w/ St. Luke’s Presbyterian Hospital to see if that’s available in the area.

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@Isaiah_40_31 pretty much summed it up! So ditto…

My surgery went very well, and even with the remaining swelling almost all of the symptoms of intracranial hypertension seem to be gone. I really didn’t have the nerve pain variant so I don’t have much to report on that. But it was immediate relief!

The day after my surgery I was able to sit and work with my laptop in my lap for an extended period of time (I have not been able to go more than 15 minutes in several years without almost passing out!) and I can now look down at my phone and type this post. There’s no sensation of pressure at all, my vision is almost normal and there is no brain fog. The one thing that has not changed is the constant tinnitus. So I’m thinking that isn’t caused by the jugular compression.

I’m back for my 1 week stitch removal, I stayed in Denver for the week at a fairly reasonable Airbnb. I am from OKC so we drove up rather than dealing with air travel this time of year. Plus it was considerably cheaper.

(It was an apartment/condo in centennial - which I had planned because it was close to the office. But all of my appointments this time have been in cherry creek so that backfired on me lol). And It depends on your definition of reasonable, luckily I got a new job in August that made this whole thing even possible financially. I would have had to look at alternate housing/logistical arrangements before. Between that and the super duper new insurance, I feel incredibly blessed. I think there was some sort of divine intervention on that, whatever your beliefs are.

As far as recovery, Day 3 was definitely the worst, but as of yesterday (day 5) I am off of pain meds and just on Tylenol. It really wasn’t a super painful surgery compared to some of the orthopedic surgeries I’ve had.

The nurses and surgeons were amazing, and aside from having a terrible time getting an IV started everything went super smooth. (I have tiny veins + Ehlers Danlos AND was super anxious so my veins did not cooperate). I just love Dr Hep, and my family are all big fans now.

My children are grown so that wasn’t really an issue for me. The only thing was the incision was quite a bit lower than I expected. I thought it would be under the jawline, but it’s half way down my neck. I don’t really care but it was a surprise. I will post pictures when the stitches are out and I’m on something other than my phone.

Thanks everyone for all the positive vibes and prayers! I owe so much to this group, I would still be suffering and miserably going from doctor to doctor with no answers. You guys are the only reason I knew about Dr. Hepworth. This has literally given me my life back.

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I am very glad that things went very well for you. Has the hearing improved? I am assuming the visual snow/after images are also gone. Wondering if they ballooned your jugular vein during the procedure as Dr. H usually does. All in all, I am really happy for you.

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I’m so pleased that the surgery has gone well & you’re feeling so good! I hope that your recovery goes smoothly, great news so far :hugs: :pray: :bouquet:

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What a great update, @Rather_b_hiking! Such excellent news! Give the tinnitus a bit more time. It may yet reduce or go away. You’ll notice positive changes over the next many months. Possibly even improvement of things you didn’t know were related to ES.

I really appreciate the information you provided & hope for a smooth & steady recovery.

:hugs:

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Hearing/tinnitus are unchanged - but I still have alot of swelling. I was told at the appt today to give it 6 weeks at least before drawing conclusions.

Hopefully it will get better / I’m tired of the constant cicadas

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Thanks! So the weird thing is that evidently the main offender was the amount of scar tissue I had around my tonsils! Evidently that was causing at least as much compression as the styloid. I didn’t realize that could be a thing.

I had constant tonsillitis as a kid and much of my adult life. When I was growing up the pendulum had swung from “everyone gets their tonsils out” to “no one should get them out unless they are about to go septic or something”

So I still have them - in fact I was joking around beforehand and told the nurse I could use a tonsillectomy while he’s in there, since he’s a ENT. I just never in a million years connected the two together.

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So while I never had severe hearing symptoms such as pulsatile tinnitus or hearing loss, I did and still do have the standard high picked tinnitus.

From reading a bunch of stories and a few case studies, for whatever reason the ringing variant of tinnitus seems to be the one symptom that lingers on.

I know everyone has it differently and it affects everyone in their own unique way, but for me, I’ve accepted that this will likely never go away and I’m just grateful my other IIH symptoms and pain are gone.

I don’t mean to be discouraging, but I just wanted to point out that this seems to be a trend I noticed with people who had their other IIH symptoms go away.

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Yes,I agree from reading on here only it does seem to be one symptom which doesn’t always resolve with surgery…the pulsatile tinnitus has nearly gone for me but do still have the ringing, although it’s not too bad so I’m lucky!

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