Surgery with Dr Hepworth tomorrow - 11/11/24

General
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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.

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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.

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Got back home yesterday but the flight home wasn’t the most pleasant. Luckily it was only a two hour flight, but it was rough not being able to lie down with a presumed spinal CSF leak.

I saw Sarah on Tuesday and got the stitches removed. And I have a follow-up telehealth appointment with Dr Hepworth on December 17th so I’m sure we’ll reassess what has improved and what still needs to be done.

Things that have improved so far: I can breathe much better. I sleep better. I feel more calm, like my autonomic nervous system is functioning better. My POTS-type symptoms have subsided quite a bit. I have greater mental clarity often.

The low pressure symptoms have gotten worse as I mentioned. And, interestingly, my left side is bothering me more now that my right side is fixed. We’ll see if that resolves over the next month or two or if I’ll need the left side decompressed as well.

My accessory nerve was compressed and it feels a little sore, but I don’t have any other nerve issues or side effects from the surgery as far as I can tell.

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I’m so glad that you’ve got some solid positive results from your surgery, @jrodefeld. :partying_face:

More often than not, it takes a few months for the results of decompression surgery to be fully revealed. Also, it’s not uncommon for symptoms from the remaining side to flare up after one side has been decompressed or one styloid has been removed. I hope those settle down as your healing progresses.

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Glad you’re home, it must be good to be able to rest properly now, and awful to have had to endure a long journey with low pressure…praying that this all improves soon, and great that you do have some positive news too :pray: :hugs:

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I wanted to share some updates as it’s been just about one month since my surgery.

I’ve been noticing a lot of changes to my symptoms. I still feel like I am in low pressure but I feel immediately much better when I lie down. I am sleeping much better and breathing better as well.

Other things that have improved:

  • Much increased sense of calm.
  • More clear thinking
  • Reduced swelling in the right side of my neck
  • Pain in the occipital region of my head on the right side is much improved

I’m sure there’s a lot more subtle improvements.

My post op appointment with Dr Hepworth is on Tuesday and I’ll ask him if it’s time to try to look for leaks in my spine and plan on pursuing a blood patch or other treatment for that.

I’m already established as a patient at Stanford with Dr Carroll but the tricky thing there is I’m not sure how aware they are about jugular compression issues and how they relate to CSF leaks. It would feel weird to go to Dr Carroll and say “I know you say X, but Dr Hepworth says Y and I’m going with what he says.”

For those who have gone through this surgery before, what stage would you say I’m at right now at one month out? Is this usually a difficult time for recovery?

The existence of the spinal CSF leak(s) makes it hard to judge the recovery. But the fact that I can feel how different the low symptoms are compared to the way I felt pre-surgery is a good sign that my brain is draining much better than before.

There is a strong likelihood that there is some abdominal compressions going on and so I may need to be worked up for nutcracker syndrome and may thurner syndrome as well.

But I feel very hopeful. I know there are a few more steps to go but I’m on the right track.

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I’m glad that you can see some improvements after surgery with clearer thinking…it would be good to get the low pressure sorted now so you can properly tell how well the surgery has helped…I don’t know the answer to how you should feel a month out after surgery with the complications you have had; mine was more straight forward even with IJV compression, I did see improvements really quickly, I now realise how lucky I was! Hopefully others who’ve had more complicated surgeries can comment, and hopefully Dr Hepworth will have some answers next week- let us know how you get on!

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Thank you for the update, @jrodefeld. I’m glad you’ve noted some good improvements since your surgery, but I’m sorry you may have further compressions that need to be dealt with. Are those something Dr. Hepworth suggested based on your symptoms or what caused you to look into NCS & MTS? Will you need your other IJV decompressed or is it fine (I’m sorry I don’t remember)?

I’m glad your follow-up w/ Dr. Hepworth is soon so you can get the big questions you have asked & answered. I also hope he’s able to help you sort out what to do about the CSF leak in your spine so you know what your next step toward healing is.

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Dr Hepworth thought I had a spinal CSF leak based on my brain MRI, the only question was whether it would heal on it’s own after surgery. It hasn’t after one month and low pressure symptoms got worse immediately after surgery and have stayed like that since the surgery.

I may need the other side done. In fact, I’d bet I will though it is not nearly as bad.

I think it’s likely I also have compressions in my abdomen because I have a lot of swelling in my abdomen and legs. I also feel a heartbeat throbbing sensation and it just feels like there is a lot of pelvic congestion and the sensation of pooling blood in my legs.

Also, I have a lot bladder symptoms (urinary retention?,) and A LOT of discomfort with eating.

There’s definitely something else going on in the abdominal area. Some of it could be from the lumbar spine if there are nerves being irritated, or possibly be related to a CSF leak or CSF-venous fistula. Not sure.

Dr Hepworth did take a look at and abdominal CTA I had done somewhere else and he saw something suspicious. Originally, if he had a vascular surgeon with him during the surgery he had planned to have him do a venography to assess whether I have other compressions.

I guess he doesn’t have vascular surgeons available during surgery as much, or usually doesn’t need them so the decision was made to see how much I improve from this surgery then maybe get the venogram done later.

So it was already on his radar to consider.

My situation is more complex which is why I was willing to wait for Dr Hepworth.

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I am suspectednto have nutcracker and I am having severe back neck and facial pain as well.

Since the surgery, I can varely be upright.

I was at MAYO two weeks ago and they wanted to do the CT Meylogram on me but I have already had that and got worse.

I don’t know what to do.

I have no medications or options to try and get through this.

So sorry for your issues.