Hi everyone, I had my catheter venogram/angiogram with Dr. Mehta on Dec. 17th. I really like Dr. Mehta and his whole staff was great during the procedure. Dr. Mehta told me afterwards that my left jugular is occluded 90% between my styloid and C1. This is creating a pressure gradient of 4 mmHg. I also have an arachnoid granulation also on my left side in my transverse sinus that is creating a 3 mmHg pressure gradient. He called my collateral veins “engorged”, which are helping to compensate for the compression. Also, he said the torcula (which I hadn’t heard of before) in my head doesn’t communicate well(?), so my left side blood and fluid isn’t able to drain out of my right side jugular. He is referring me on to Dr. Nakaji for a consult with him.
Here’s the exact wording from Dr. Mehta’s surgery report:
IMPRESSION: Findings compatible with styloid compression syndrome with pressure gradient of 4mm Hg of the LIJ due to extrinsic compression. Additional pressure gradient of 3mmHg at L TS junction due to arachnoid granulation. There is poor communication through the torcula, with right side showing no pressure gradient but unable to decompress left side. Will refer patient to Dr. Nakaji for evaluation of left sided styloidectomy.
Here are 2 images from my test showing the compression and the collateral veins on my left side.
Dr. Nakaji’s office did reach out to me between Christmas and the new year to say that he was reviewing my case to see if he would meet with me. They also informed me that they don’t take insurance, but work with your insurance company to cover the surgery (if you’re a candidate) because of a gap in care for this particular issue since it’s newer. I’m curious if anyone else has heard this from his office before???
At this point, I’m really worried to Dr. Nakaji won’t take me as a patient since my pressure gradient is high, but not through the roof. I think this is because I’ve had this issue for so many years and my collateral veins are compensating some. It’s also from having an arachnoid granulation that is blocking some of my drainage before it ever gets to my jugular compression. I’m fortunate to live the in the Phoenix area and really don’t want to travel for this surgery if I don’t have to. Any input from other members on how Dr. Nakaji might look at my situation??? I’m anxious every day hoping to hear back from his office.
I’m also getting a second opinion from Dr. Constantino, who I also like a lot from my first meeting with him. I was supposed to have a follow up in mid-December, but his office cancelled because he was sick. I’ve had a hard time getting his office to reschedule, even though I’ve called them numerous times. They just keep telling me they have it on their to do list. Ugh, it seems not fair to get bumped and have to go to the back of the line again. I guess I’ll keep pestering them.
Thanks for reading my rambles. Any advice/input is appreciated!!!
HI! Same boat here, I had the venogram with Dr. Mehta in early Dec. My pressures were a bit lower than yours but I’m set to meet with Dr. Nakaji tomorrow. It seems he does a farily comprehensive evaluation, doesn’t make the decision just based on pressures. It’s more about whether he thinks he can help or not (from what I can tell.)
Hi RickAZ, thanks for the feedback on this. That’s reassuring to hear you got an appointment with Dr. Nakaji. I agree that pressure numbers are probably just piece of the puzzle. I also have an ear/skull base condition called Semicircular Canal Dehiscence, probably caused from having high pressure in my head all these years from jugular compression. Like all of us, itching to get some answers at this point. Please keep me updated with your appointment tomorrow. I hope it goes well for you and whatever goals you have!!!
@tguerin18 - Based on the information you received from Dr. Mehta & the results of your venogram, I’d be surprised if Dr. Nakaji doesn’t offer you surgery. Also, once the IJV decompression is done, there are surgeons who repair SSCDS - Superior Semicircular Canal Dehiscence Syndrome so you can also anticipate recovery from the symptoms that causes down the road.
Thanks for your input on this. I think I have been gaslit so many times by other docs on this journey for the last 3 years that I forgot I need patience through this process. Just ready to get some answers and feel better. I always appreciate your feedback.
I sat in on one of our forum member’s appointment w/ Dr. Hepworth this morning. She has hEDS & has been gaslit, dismissed, & told everything is normal for nearly 50 years. She was quite apprehensive about her appointment today expecting the same response, but bless his heart, Dr. Hepworth told her that her symptoms are significant & offered an explanation & solution for helping them to reduce/resolve (which of course includes surgery down the road). The relief she felt post office visit was visible in her countenance. It’s exhilarating for me to see/hear of our members getting answers & treatment, one by one, & hearing positive recovery stories after so many years of medical dismissals. It’s part of what has kept me on this forum for so many years.
I am waiting to hear your success story, too, @tguerin18. It is coming!
Couldn’t agree more!!! The support on this forum is truly amazing! I’m a member of another support group for my ear condition, and it doesn’t have this feel. I feel very fortunate to have found this group and really appreciate the comments I get from all the members!!
I had and have many of the same issues. The pressure gradient of 4 is not high. That does not mean much though especially if you have EDS. As others have said, its a piece of the puzzle.
Hi there. I got into see Dr. Gordon end of December in NY. Very nice. It’s up to me now when to schedule the venogram. I cannot see me doing it anytime before April. I have to be in Texas for 2 weeks next month for hyperbaric oxygen treatment for mold. In the midst of all this, I was diagnosed with a bacterial infection by a local ent. I had asked Hepworth to do a biopsy on my nose when he did my nasal surgery. It did not happen. I asked him in person in July to do a culture. He refused. Now, I am on antibiotics and it appears I have had his infection for a long time. I just did a sinus cat scan this week. I do not have the results. I may need more surgery for eustachian tube dysfunction. I am not a happy camper to say the least.
I too love Dr. Mehta his team is great and he is precise in his diagnosis and you leave with a clear understanding of what is happening.
Your report could have been mine. Similar pressure gradients…The only difference was my torcula is communicating well between the 2 sides.
Even though there was more compression on my left IJV. It was not my dominant IJV. Based on that Dr. Nakaji chose to decompress my dominant right IJV. He and Dr. Mehta felt it also provided a better opportunity that opening the right IJV would provide a better chance that that could help to open up the left transverse sinus stenosis. Others here with different surgeons have been told something similar. To be honest I am not convinced.
I had surgery with Dr. Nakaji October 15.
The Mehta/ Nakaji/Honor Health system is seamless.
So I have to agree with Isaiah ….very good chance Nakaji will accept you. Unless maybe you have other health issues. I also had a consult with Constantino. He was going to decompress the left but that was prior to my venogram.
@Brandy - I’m sorry for the lack that occurred in the doctor/patient relationship you had w/ Dr. Hepworth. I’m surprised because he’s usually on the overkill end of diagnosing vs neglecting potential problems. It’s hard to know why things happen the way they do. Again, I’m sorry for what has happened in your case w/ Dr. Hepworth.
Does it appear your bacterial infx is related to the eustachian tube dysfunction or will the sinus scan help to clarify that?
What is Dr. Gordon’s specialty? Is the venogram to look for further compressions in your neck/body?
Did you end up seeing Dr. Costantino? I can’t remember if you’d scheduled w/ him or were just contemplating doing so.
It’s rough that you’re also dealing w/ problems from mold exposure. I hope the hyperbaric treatment is tremendously helpful in eradicating symptoms & helping you heal. Will you need to do that more than once?
Please let us know what your sinus scan & venogram turn up. I know you’ve educated yourself substantially regarding your medical conditions for which I applaud you. Just know we continue to be here to support you.
How are you feeling after your surgery? It’s interesting to me the different thinking they use for surgery based on dominance, compression, location, etc.
I do have another condition related to my ear that I think is directly related to my compression and high head pressure over the years. I hope Dr. Nakaji will see the connection and not consider it another health condition or possible complication.
I am not draining properly in the sinuses. That could be the reason for the bacterial infection. Dr. Hepworth was trying to tell me I had a leak in my sinuses. I have holes from his surgery and another surgery I had 25 years ago. I may need a balloon dilation. Dr. Hepworth never ordered a sinus cat scan. I probably should have insisted prior to surgery. That was my fault. Dr. Gordon is a brain neurosurgeon who Dr. Costantino referred me to get the venogram. Dr. Costantino wants more info to find out why I still have such a substantial compression from Hepworths surgery. I saw Constantino prior to setting the appointment with Dr.Gordon. I have to do 20 dives in the hyperbaric chamber. I will probably get a script to do more at home. You typically need about 40-50 dives to help get the oxygen into your cells. I probably will not do the venogram until sometime in April. Im in no rush to have that done with my health being poor. I am still working with Dr. Ruhoy to help with all my other issues. I will keep you updated when the results of the sinus ct scan come back, which should be any day. Thx for thinking of me!
@Brandy -
Interesting about the hyperbaric chamber. Is a dive when they take you to high pressure then slowly return to normal pressure? Are the 20 dives done in one treatment or over several days? I’m totally ignorant of how hyperbaric therapy works even though I know other people who’ve had it for different types of health issues.
Progress has been slow and steady. I was high speed rear end MVA with airbag hit to left side of my head. So dealing with sinus and TMJ issues now….see the ENT Wednesday and end of Month looking at TMJ splint.
Trigeminal neuropathy affecting facial and palette nerves on the left. My scar has healed well. Doing lots of self massage and scar release therapy. I do believe I have less neck pain .Still dealing with head and eye pressure. Some of that ties into the sinuses. Mid January I do a CTV in Toronto and eye testing so may know more.
I was diagnosed with mold toxicity in 2019. Its been a nightmare. There is not one mold test but multiple. One test alone can not give you a diagnosis. Many think they can do a mycotoxin urine test and thats it. Its not. You have to do genetic testing to look for the dreaded HLA genes as well as bunch of labs, which are called CIRS labs. I also did a nasal culture finding the same toxic mold that I was living in. I was breathing in the poison. I also have a traumatic brain injury with 20 abnormalities due to mold. A special brain imaging test called Neuroquant can show the difference between mold, lyme and PTSD abnormalities. I will be in Texas for 2 weeks, doing 2 one hour dives a day. I already did one trial run last month. Mold is deadly and can kill. Fifteen minutes from me there was a class action lawsuit from 5 deaths and 60 cancer diagnosis’ all from the same mold infested court house. The building had to be torn down.
