My surgery date with Dr Hepworth has finally arrived and I am waiting with anticipation at the Airbnb I rented along with a family member who will be helping me on this trip.
I believe it was worth the wait to get in to see Dr Hepworth and I’m happy to have him be my last doctor who will see me through until I’m better.
Surgery is scheduled for 7:30am tomorrow morning at Presbyterian St Lukes with an arrival time of 5:30. I’ll be Dr Hepworth’s first patient of the day.
He’s planning a right jugular vein decompression and right ethmoidectomy to repair a presumed CSF leak.
I’m trying not to have too many expectations since I know recovery is different for everyone and if I don’t notice immediate improvement that doesn’t mean it didn’t work. However, I am hoping I’m one of the fortunate people who notice massive improvements immediately.
Thank you all for providing and participating in this platform to spread knowledge about this horrible disease. I wouldn’t be here on the verge of getting better without everything I’ve learned here and I hope I can share an amazing success story of healing before too long!
@jrodefeld - I’m so glad tomorrow is your BIG day! Lucky you getting the first surgery spot in the morning. I think Dr. Hepworth puts the cases he expects to be more difficult or time consuming earlier in the day & saves the “easier surgeries” like mine was for end of the day.
I will be praying for you & Dr. H tomorrow & hoping you have an easy recovery like I did, though your surgery is a fair bit more involved so it may take a little longer for you to rebound.
Please do let us know how it went for you once you feel up to typing a few lines.
The surgery went really well! Surprisingly Dr Hepworth did not find a leak so I was able to go bqck to the AirBnB to rest. I’m not in too much pain at the moment so the pain medication is working well.
As far as the actual procedure is concerned, Dr Hepworth spoke to my family afterwards but I didn’t see him so I’m getting this information secondhand until I can read the actual surgery notes.
It seems the most significant issue was scar tissue strangling the jugular vein, along with extra lymph nodes compressing it. Interestingly there was compression lower where I had thoracic outlet syndrome surgery. I had cervical ribs that were resected at UCLA several years ago but apparently the residual bone there was compressing the jugular and this was fixed. I assume the styloid was further resected but I got the impression that this was a lesser problem.
I did have a small cyst in my sinuses that was collecting pus and fluid and generally contributing to feelings of congestion and dripping down my throat and mouth. This was removed and a sample of the fluid was sent to the lab to see what infection was causing it and how to treat it. I presume the swollen, extra lymph nodes in my neck were related to this infection and cyst.
I’m getting a lot of this information secondhand so I’ll update once I read the surgical notes and especially after my followup appointment in a week.
At the moment I’m fairly comfortable but I know some people feel good initially but go through rougher patches after a while and recovery can be a rollercoaster as you heal. But just knowing that this was my problem and that Dr Hepworth fixed a bunch of stuff means its just a waiting game to see how much better this makes me.
FANTASTIC report, @jrodefeld! I’m so glad your surgery went well. I woke up early this morning, & you came to mind so I prayed for both you & Dr. Hepworth. I’m glad for your positive outcome so far. If your recovery goes anything like mine, I was a bit uncomfy for only a couple of days then felt so much better than expected on days 3-5 when I thought swelling & pain would be worse. I hope your experience is similar to mine.
Overall this sounds like great news! The doctor found things he wasn’t expecting but was able to diagnose and resolve it all on the spot. With luck it will be an easy dose of abx and you’ll clear the infection. Be sure to keep us all posted as you learn more and go through the next days/weeks.
Congratulations on taking this big step and all the best for a speedy and full recovery.
You had a mess going on inside your body. It is reports like yours that show me why the surgeon you choose is so important.
We have so many cases that just cant be handled with the intraoral approach.
I will remind everyone again of the Doctor who does the intraoral surgery saying that I dont have Eagle syndrome because he has done a lot of surgeries and found it doesnt help in cases like mine. While I might agree it doesnt help it might be because the patient DOES have Eagle Syndrome but needs a more complicated surgery. I cant fathom what he was talking about except perhaps length. Maybe he thinks they need to be 6 cm long.
I am glad to see you are still in the optimistic mode of outlook in life.
I have had swollen lymph nodes in the past caught on Ultrasound. It is what started me on this journey. It was on my right same as worst styloid. Back then an ENT wanted to do a biopsy. I resisted for a variety of reasons. Rheumatology also suggested due to Sjogrens people being more susceptible to cancer. I still resisted. I did another US and it had reduced size.
I will put it on the list of things to watch for in my surgery.
That’s great, I’m glad that you had a skilled surgeon who’s open to checking all possibilities! I hope that this surgery does make a big difference to your health, praying for a good recovery & reduction of symptoms
@Luba - Some of our members have had styloids regrow, however, that most often happens when the styloid wasn’t cut short enough. That’s why we emphasize removal as close to the skull base as possible. If you had styloid regrowth, some of the same symptoms you had before your original styloidectomy would flare up again or new pain in your face, neck, shoulders, ears, etc., which would alert you that something was amiss. It would be at that point that you would consider getting an updated CT scan. It’s not necessary to get them just to periodically check on the styloids, only if there are symptoms that could be caused by the styloids.
Feeling worse today. I suspect I may have swung into severe low pressure due to suspected spinal CSF leak(s). I have more pronounced nasea and difficulty being upright for almost any time at all.
For those who have had surgery with Dr Hepworth, did he give you a specific number to call for followup about any post-surgical issues?
You would expect that they would want to reroute calls about postsurgery issues to a special priority line rather than having patients go through the standard phone lines which are logjammed by so many new patients, duplicate calls, etc.
Poor you, I hope that you can get someone to answer, I agree there should be a different phone line ideally…Take care of yourself, I guess it can take a little while for the brain & CSF system to reset itself & get used to the new normal, so hopefully it’s just that and not a leak… @vdm did post a YouTube clip about CSF production & the balance, I don’t know if there’s anything helpful in there, if you’re able to watch it laying down: Cerebrospinal fluid - function, production and circulation - animation by Dr. Cal Shipley, M.D.
Praying that this resolves for you
@jrodefeld It’s normal feel worse initially as the swelling amplifies the symptoms. For me that started to improve around day 10 for my first surgery and day 14 for my second. I’m a month out from my second surgery and still improving day by day.
Was able to get through to Dr Hepworth’s office. I probably do have a spinal CSF leak but at day 3 swelling and inflammation is usually at it’s worst so my intracranial pressure is probably swinging back and forth until it finds a new equilibrium. It’s all part of the process and I have to be patient.
Dr Hepworth did prescribe a steroid medication that should help reduce inflammation and I started taking that today.
Stay optimistic. The story of the guy who said it was the worst decision to have surgery is an example of it getting worse before better. When someone reached out to him much later he was positive about the surgery.
I’m glad that you were able to get in contact with his office & hope that the steroids help… It is typical of ES surgery to have ups & downs, but it is an extra worry when you add high/ low intracranial pressure into the mix…
