I had my appointment with Dr. Nakaji in Phoenix yesterday. It went well. He said that my venous pressure was unusually high among the patients he has treated. He wants to make sure that I don’t also have pulmonary hypertension that may also be creating pressure. He said if he clears the blockage at the jugular, but I also have pulmonary hypertension, we will have only cleared one blockage. He recommends surgery regardless, but doesn’t want to schedule until he has an answer on that. For those interested, my readings were:
Right internal jugular vein:
Neutral: 8-9 above the styloid, 5 below (gradient ~3-4)
Head down right: 15 above, 10 below (gradient 5)
Head down left: 16 above, 5 below (gradient 11)
Left internal jugular vein:
Neutral: 8 above the styloid, 6 below (gradient 2)
Head down left: 24-29 above the styloid (the “below” reading wasn’t recorded for this position)
Head down right: not recorded on either side of the styloid
I did have an echo in May, but it did not measure RVSP (right ventricular systolic pressure). So although the other things measured were normal, it doesn’t really give the information needed to know if I have pulmonary hypertension.
I was referred for an EDS evaluation, but UT Southwestern Medical Center is not accepting new patients due to limited capacity. They said maybe 2027.
In the meantime, my energy level and fatigue continue to decline, not off a cliff, just slowly less and less. I have also had a lot of digestion issues. A low FODMAP diet is helping. I continue to have POTS-like heart rate swings. I made an appointment with a clinic that specializes in POTS. I don’t know if the jugular decompression would alleviate that or if I have something else going on. I wonder whether I might have thoracic outlet syndrome, but don’t really know.
A doctor I contacted before juggular compression was confirmed thinks I have a CSF leak and has ordered a CT myelogram. It’s a little much to keep track of everything!
As I said appointment went well with Dr. Nakaji. He answered all my and my husband’s questions. I’m glad he is thorough. I want to find anything that might be wrong.
I’m glad that your appointment went well, and that he will do surgery for you, but a shame you have the other things going on!
Digestive issues and the heart rate swings can be caused by vagus nerve compression- the vagus nerve is next to the IJVs so if they’re compressed, there’s a good chance your vagus nerve could be too, so surgery might help with this…
Have you got to wait long for the appointment for that? And what testing will you need to assess the pulmonary hypertension, does Dr Nakaji recommend anyone?
So I guess it’s not going to be a short wait for surgery then?
Hi @Jules, Sorry. Just seeing this. I had the right heart catheritization yesterday and everything came back normal, so hopefully will be able to schedule surgery soon. Dr. Nakaji’s office communicated very quickly with my cardiologist (the day following my consultation with him). He asked to speak with my cardiologist directly and gave his cell number. They connected that day and she ordered it that day, so i was able to get in quickly for that test. Kudos to Dr. Nakaji and his office for being so quick and so personal about this!
Lying on my back for a few hours for the procedure and the recovery period along with the sedation really made my sympoms flair, but am a lot better today.
I do have appointments with a couple of other surgeons, but they aren’t until November. I am planning on going with Dr. Nakaji because I am comfortable with his approach and I can get into him before the end of the year for surgury. I am a generally a research-driven person who takes my time to look at all my options, but I want to get in soon for both insurnace reasons and because I want to feel better! Are there any posts about differences in approach between the main surgeons who have experience operating for this? It seems they do communicate with each other. I have other appointments with other surgeons, but they are further out and I’m doubtful I could get the surgury done before the end of the year.
@TeresaJo I had my surgeries with Dr. Nakaji a couple of years ago and he told me that he is in conversation with some of the other main surgeons about what they are finding and the approaches they are taking. It was because of one of these conversations that he looked to my carotid sheath as a possible source of compression, which it was along with the styloid and some other structures.
@TeresaJo - The only other doctor that we have some specific surgical information about is Dr. Costantino who routinely cuts the greater auricular nerve (GAN) to gain better access to the styloid & IJV & also removes the posterior digastric muscle. The GAN is stitched back together before the incision is closed.
I believe all the surgeons doing IJV decompressions are now more aware of the multitude of soft tissues in addition to styloid & C1 that can cause IJV compression so they do their best to thoroughly decompress the IJV vs only at the styloid/C1 narrowing which was more common in the past.
I’m glad that your heart catheritization was normal, and that you feel confident with Dr Nakaji. We usually suggest getting more than one opinion, but there are other considerations and if it works better with the timing and you feel confident with him that’s good… All the VES doctors we suggest have done successful surgeries, but with all there are occasional patients who don’t do as well, often because there are other issues going on… It sounds like Dr Nakaji has done the testing he needed to ensure you’re not one of those
