I’m confused and need my warriors opinion. I saw Hepworth last week but did not have the report at the time. He said jugulars look good and was back to the veins in my head (Patsalides dismissed any issues) and wants me tested for a cranial leak. Oy vey! This report shows bilateral flattening of my jugular veins. What??!! My left side was done along with a C1 shave. I have no improvement. I have never seen this show up on any report and Hep did not mention it. Could this have been there prior to surgery? Is this concerning?
It also states I have a deviated septum and septal perforation. He performed a nasal septoplasty. I have called & messaged with no answer. Any thoughts? Thx.
@Brandy - I’m very sorry your symptoms haven’t subsided & your recent CTA/V is still showing some mild IJV compression. The tortuous left vertebral artery is a bit concerning as the tortuosity itself can cause problems. I’ve forgotten if you have BP spikes & heart rate irregularity.
I think with your test results, & the fact your symptoms are unchanged, you should get a second opinion from either Dr. Nakaji or Dr. Costantino. I recall you had a consult w/ Dr. Costantino but don’t remember about Dr. Nakaji.
Are you referring to the suggested CSF leak in this statement? If so, I’d also be cautious about pursuing getting that diagnosed. The communication w/ Dr. Hepworth’s office is appalling. We’ve had a couple of members who recently chatted about not getting replies to emails until 7 weeks after theirs were sent to his office. That’s really unacceptable.
Hep said I had an abnormal hole in the sinuses and thinning of the bone along with mastoid effusions. I was given a vile to collect nasal fluid. No instructions. She was supposed to have emailed me last Wednesday. He also wanted a telahealth in 2 weeks. I have received nothing. I did see Costantino & Tobias last month. They knew I was headed to Denver and I was getting imaging. I had to have a back up. I do not see them though until October. Honestly, I think Hepworth is just overwhelmed with patients. He wanted me on a blood thinner and a muscle relaxer. He said my right jugular is spasming at the omhyoid. I have no prescriptions and no return calls.
My thoughts would be reading the report that the IJVs haven’t re-opened fully , it can often happen if they’ve been compressed for a while? Other members have found that it can take a while for them to adjust, or that there’s still some compression somewhere along from muscles maybe? (If the omahyoid is still compressing the jugular further down it could explain why there’s not been an improvement in symptoms? It’s a shame that there wasn’t your prior CT available for comparison…It would be interesting to see what the jugulars looked like before…
I’m sorry that you’re not feeling any better after surgery, it does sound very frustrating dealing with Dr Hepworth’s office
Dr. Hepworth did not seem concerned. He was focusing on the veins in my head and possible leak. I’ve attached the notes from Dr. Annino showing the space of my C1 & styloids along with reports in 2022 prior to surgery.
4mm and 3mm post surgery compared to 3mm and 2.4mm in 2022? So a slight enlargement but not completely back to normal? Frustrating that there’s no improvement with symptoms still, difficult to know where to go from here, have you had any fluid from your nose indicating a CSF leak?
It does seem to happen quite often the the IJVs can be seen to open up in surgery, but then to narrow again, often because of swelling…I do feel for you
I just looked up the pledget study & cisternograms & was sorry to learn that both involve a lumbar puncture. Drats! I hope your nasal fluid provides enough evidence one way or the other that you can avoid either of the other two routes of detection.
As @Jules said, the lack of a fully open IJV on your operated side, might indicate there’s still some swelling which would bode well for a better recovery as more time passes. I heard about one case where the patient didn’t get a good surgical response to IJV decompression until 9 mos. after surgery. That’s a lot of practicing patience but it did pay off.
