Surgery with Dr Hepworth tomorrow - 11/11/24

I wanted to share the surgical notes for those that might be interested:

"HCA HealthONE PRESBYTERIAN ST. LUKE’S
1719 EAST 19TH AVENUE
DENVER CO 80218

OPERATIVE NOTE
REPORT#:1111-0309
REPORT STATUS: Signed
DATE OF SURGERY: 11/11/2024
SURGEON: Edward Hepworth, MD

PREOPERATIVE DIAGNOSES: Right chronic maxillary sinus, right chronic ethmoid sinusitis, right jugular venous compression, headaches, tinnitus, dyspraxia, cervicalgia, cognitive decline.

POSTOPERATIVE DIAGNOSES: Right chronic maxillary sinus, right chronic ethmoid sinusitis, right jugular venous compression, headaches, tinnitus, dyspraxia, cervicalgia, cognitive decline.

PROCEDURES:

  1. Right deep neck space exploration.
  2. Right selective neck dissection.
  3. Right jugular venous decompression and repair.
  4. Right infratemporal fossa approach with lower cranial nerve monitoring by outside entity.
  5. Right endoscopic total ethmoidectomy.
  6. Right endoscopic maxillary sinusotomy with tissue removal.

ASSISTANT: Nia Cook, SA.
ANESTHESIA: General endotracheal.
FLUIDS: 1000 mL crystalloid.
ESTIMATED BLOOD LOSS: 25 mL.
COMPLICATIONS: None.
DRAINS: None.
PACKING: None.
IMPLANTS: Myriad Matrix to anterior tubercle of C1 after reduction so that the jugular vein would remain unattached to it.
DISPOSITION: To recovery room in stable condition.

INDICATIONS FOR PROCEDURE: Mr. R has been struggling with jugular venous inadequacy and all of its attendant symptoms some of which improved with anticoagulation but not enough to allow him to continue work and lifestyle function. He has had attempted styloidectomy before but continues to have jugular venous insufficiency, which we are coming to remedy today as well as sinus disease which may be contributing to many of his symptoms.

DESCRIPTION OF PROCEDURE: The patient was brought to the operating room and placed supine on the table. General anesthesia was induced. An oral endotracheal tube with monitoring electrodes was placed. After sufficient anesthesia was achieved, the right neck was then prepared and draped sterilely after electrode arrays were temporarily implanted into the tip of tongue, soft
tissues of palate, chin, and trapezius muscles for monitoring and stimulating the lower cranial nerves.

A skin crease 2 fingerbreadths below the angle of the mandible was identified and infiltrated with anesthetic. This was then incised. Old scar was excised in an elliptical manner. An incision to the subplatysmal plane was performed so that subplatysmal flaps could be elevated to visualize the anterior border of the sternocleidomastoid muscle.

Neck dissection and exploration ensued. The carotid sheath was identified, and obstructive lymphatics were seen to be imposing upon the jugular vein above the
thyroid lamina. These were removed by careful scissor and bipolar dissection off the recurrent laryngeal nerve, the spinal accessory nerve, the carotid artery and the jugular vein. They were sent as specimen, level 2 neck
contents. The jugular vein was then followed inferiorly and seen to be diminutive, seeming to be because of disrupted flow cephalad from the dissection area. As the dissection ensued, more flow and larger caliber of the vein was seen and restored. Above the hyoid bone, further lymphatics were removed and labeled as retrofacial lymph nodes.

These were sent for pathology and culture. Dissection then revealed that the jugular vein was being compressed quite significantly from its posterior geometry by the C1 tubercle which was hypertrophied and osteophytic into the carotid sheath. The overlying fascia was divided with scissors and bipolar and then a Sonopet was used to reduce the bulk of the C1 tubercle until a normal flat contour of it was restored. Over this was then placed a layer of Myriad Matrix to prevent adhesion of the jugular vein to the underlying bone.

The vein was then followed superiorly all the way into the foramen where it was seen to be unadulterated and unfettered by external masses or fibers and expanded entirely into a normal and uniform caliber along its length. The wound was then evaluated under Valsalva maneuvering, and a small ooze was seen from the posterior jugular vein overlying the inferior aspect of the C1 tubercle. This area was repaired with bipolar and suture ligation of a small branch emanating into the occipital region. The wound was closed then with 3-0 Vicryl suture in interrupted fashion, followed by 4-0 Vicryl at the subcuticular planes, followed by 5-0 horizontally mattressed Prolene at the skin after which a Mastisol, Steri-Strip dressing was applied. The electrodes were then removed, and attention was directed to the nasal cavity.

The nares were decongested with Afrin-soaked cottonoids and endoscopy ensued. The middle turbinate on the right side was seen to be widened by a concha bullosa/solar lamella cell formation, which was removed using a vertical
incision with turbinate scissors, leaving the medial portion of the turbinate intact and stable against the skull base. The uncinate was seen to be fenestrated by an accessory ostium and its inferoposterior margin was removed in its entirety up into the frontal recess, and a second ostium in the maxillary sinus medial wall was seen lateral to this, causing a second variety of mucus recirculation. Tissue removal from the maxillary sinus was then performed to allow singular outflow of drainage from the maxillary sinus which was seen to be partly filled with mucopus. This was suctioned and sent for culture and then lavaged until clear. Behind this, the ethmoidal bulla was removed as well as the retrobulbar and suprabullar septations, one of which was filled with mucopus as well, abutting the olfactory groove at its anterior terminus. After removal of the pus from within this, Valsalva maneuvering revealed no CSF emanations through what appeared to be fragile skull base on preoperative imaging.

The ethmoid region was then cleared entirely by
fenestrating the middle turbinate basal lamella and entering of the posteriorethmoid sinus to remove edematous mucosa which was obstructive of the posterior ethmoid outflow and sphenoid at the sphenoethmoid recess. Again, Valsalva maneuvering was performed to assess whether there was any clear fluid
emanations through thin base of skull and this was seen to be intact.

The patient was then suctioned, awakened from anesthesia, extubated, and brought to the recovery room in satisfactory condition."

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I’m not sure what the significance of all the swollen lymph nodes are. The labs came back negative but maybe a chronic infection or inflammatory condition that wasn’t tested for? My first followup appointment is tomorrow morning so I’ll be sure to ask about this.

Overall, I’m feeling many improvements and changes. I can breathe MUCH better and I can tell my right jugular is draining far better. I feel many fluctuations in intracranial pressure with periods where I feel very good. I feel like my vagus nerve has calmed down considerably which makes me feel much more calm and out of fight or flight.

On the negative side, I feel like I’m in low pressure when I am upright for a relatively short period of time. It’s a totally different feeling from how I felt before. It feels like brain sag, my eyes get watery and my ears feel full and my back hurts intensely. It feels like I’m going to pass out unless I lay down, and when I do I feel much better immediately. This starts getting bad really around 10 minutes after being up, like getting groceries from the store.

It’s distressing but not really worrying since I know what it is. I understand that spinal CSF leaks can sometimes spontaneously heal once the jugular is fixed but I suspect I may need something done more urgently depending on how this plays out over the next few days.

I am very impressed with how little complications there were from the actual surgery though. In my mind I was worried that Dr Hepworth would make a large new scar in my neck, but he was able to open up my existing scar from a previous styloidectomy and it won’t look different once healed!

I have no nerve issues, apart from very minor soreness of the accessory nerve that was decompressed.

Dr Hepworth is clearly a very talented surgeon and I’m very glad I waited for him.

Interestingly, it seems he didn’t further resect the styloid process which I guess was found to not be contributing. Instead it was lymphatics, scarring and a hypertrophic and osteophytic C1 that were the primary culprits.

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Thank you for sharing your operative report & your post op progress, @jrodefeld. It can take several months for the high/low pressure situation in the brain to sort itself out, but you’re wise to be concerned about how it’s affecting your ability to be upright. @harrisonboy is going through the same thing you are in that respect. I’m glad you have a follow-up appointment soon so you can ask about the lymph nodes removed & your current inability to be upright for very long. I hope that problem recovers on it’s own, but if not, you know you’ll get a reliable referral for a doctor who can help you from Dr. Hepworth.

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Your name is showing up in that report. You might want to delete it.

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@jrodefeld Thanks for sharing. I hope your symptoms continue to improve.

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That was fascinating, thank you for sharing it! I guess given the infections in your sinuses maybe that’s why the lymph nodes were so swollen? Will be interesting to see what Dr H thinks, but good there’s nothing untoward with them, it does seem to be common with ES too…
I’m glad that you’ve not been in too much pain, & that you’re seeing some improvements. I hope that with time any CSF leaks heal and that your pressure stabilises. Praying for this :pray:

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Praying for you as I have been dealing with a potential leak or fistula for over 5 years. I had surgery with Hepworth on 10/21 and I am no almost bedridden from the pressure problems.

I have so many other issues going on, I have no idea what is causing what, but all I know is that I am just existing at this point. I am leaving for MAYO clinic on Sunday to see if they can offer anything, but doubtful.

I will keep you in my prayers that your pressure problems resolve as I know just how hard this is to live with.

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Have you followed up with Dr Hepworth since your surgery?

How did your symptoms change after surgery? Was it like I describe where you had a mix of high and low pressure but after surgery you fell into consistently severe low pressure?

Hope things improve for you. Maybe you could push for a diagnostic or “blind” blood patch if they are having trouble locating the leak?

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Yes, I had a tele visit last week. He was very concerned at how bad I. He wouldn’t come out and say it, but did acknowledge, that the surgery may have failed and he believes I have at least one leak or fistula in my spine. He believes that for whatever reason, the surgery has elevated all of my other issues. I thought I was at the end of the road before I did the surgery, but it is an absolute fact now.

I have already been through all the testing, blood patches, etc. and they also made me much worse. So, I doubt I do anything if that is the problem.

Not only did all of the low pressure symptoms increase, I now have nonstop dizziness/vertigo, along with the level 12 headaches, gastrointestinal pain, and neurological issues.

Sorry to hear that and hope you and Hepworth can get to the bottom of what’s causing your symptoms and get some effective treatment.

It sure sounds like a leak or fistula in the spine. Have you ever had a digital subtraction myelogram? I think that’s the best way to diagnose CSF-venous fistulas that can’t be seen on other imaging.

Hang in there.

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Yes, it make me much worse. I may have arachnidosis from it. But praying not.

I had 12 bulging discs and 6 spurs in my cord but tgey couldn’t definitely see tge leak.

Dr. Hepworth said he sees it between C6 and C7 in my neck.

But who knows…

Praying for you.

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Thx for pointing that out. I edited it.