Hi all,
I have very apparent IJ compression between by styloid process and C1 (right > left).
My surgeon was comfortable proceeding without an invasive catheter angiogram/venogram, but I am not sure if I should absolutely proceed with the catheter venogram before surgery. I am scheduled with a consult with Patsalides next week to discuss.
How did you decide on proceeding with the catheter venogram if not required by your surgeon?
Thanks!
@jsisto - There really is no reason to have an angio/venogram if your compression is clear on your diagnostic scan(s). It is a very invasive procedure & does run it’s own risks (stroke/brain bleed) as a catheter is run from the groin up through some of the major arteries/veins in the neck & brain. An angio/venogram can provide some additional information that CT/MRI type scans don’t but probably not information that would be dealt with at the same time as your styloid & IJV decompression.
I had what looked to me like very clear evidence of bilateral IJV compression, but after having an US w/ flow rate measurements (Dr. Hepworth’s protocol), I guess my numbers weren’t totally convincing so Dr. Hepworth ordered an angio/venogram to absolutely confirm. Interestingly, my left IJV did demonstrate blockage by the remains of my styloid (had it resected in 2015) & C1. The right side, though extremely narrowed visually, was shown to have normal blood flow through it.
I’m not sorry I had the test done, but it did take an entire day between hospital admission, waiting my turn for the testing then the 4 hours of lying pretty flat after the procedure before being released to go home. I had 4 episodes of visual migraines (~1/day for 4 days) post op which was something totally new to me & was a bit scary. The first occurred while I was in recovery, & when I asked the nurse why my vision had become shimmery, she just said not to worry about it. The shimmering was followed by a horrific skull base headache. The subsequent migraines had varying visual manifestations, & w/ one, my vision started to go dark which can be the sign of a stroke. I immediately took an aspirin as a blood thinner & the moment passed w/o serious consequence.
Based on my experience, I would encourage anyone who doesn’t absolutely need to have an angio/venogram done to skip it.
Thank you. @Isaiah_40_31 for your thorough reply. I do have serious concerns about the catheter angiogram.
However, what if my case is like yours where my right side is visually compressed but might have normal flow?? I don’t want to undergo a styloidectomy and C1 shave for no reason if it’s not going to help. I also don’t want to have a stroke from the angiogram.
I’m so confused as to what to do and Hepworth’s office is impossible to get through to get an ultrasound.
I agree with @Isaiah_40_31 that the angiogram was horrific. It was probably the worst part of this whole process for me. The apparent value is in the manometry. At least at the time I was doing all of that having significant pressure changes across the stenosis was the best way to determine if the surgery was going to be successful. I don’t know if that continues to be the thinking among the experienced surgeons or not. If pressures can be assessed via Doppler ultrasound that would be a safer and easier way to go.
@jsisto My cardiologist said that the catheter angiogram/venogram presented too much of a risk for stroke with the styloid impingement that he could see on the CT angiogram. The styloid compression of IJV and ICA is often based on head position, which is difficult to replicate during a CT scan or catheter venogram. I experienced IJV and ICA compression when my head was turned to the side (left side IJV, right side ICA for me) or if I looked down at my phone. It would cause migraine with aura when I looked down, or I would start to faint with my head turned to the side. You might try journaling symptoms to see if head and neck position exacerbates your symptoms.
@Catmd thank you for your reply.
I don’t have any positional changes with my compression during the day. I just have a constant severe headache 24/7 and tinnitus. I guess sometimes it’s worse in the morning after lying down all night.
I agree with the others about the potential risk etc with the catheter venogram… The experienced vascular ES surgeons do tend to have a good look at what’s going on during surgery & decide what to do while they have you in theatre, for example some members have had compression more from muscles, nerves or other blood vessels so a C1 shave hasn’t been necessary. I’m sure @Chrickychricky will comment about that from her experience this week. I doubt the doctors would go ahead with the C1 shave if it didn’t look necessary at the time, something to discuss with your doctor (if you can get in touch!)
If you don’t already sleep propped up, it’s worth trying that for IJV compression, it helped me alot.
For me the imagery showed c1 as an issue. During post surgical rounds yesterday he told me that he tried to work between the spinal accessory nerve and glossopharyngeal nerve to get at c1 but with the nerve monitoring he was getting too much chatter to proceed. He was able to cut enough styloid to have it clear of c1 and then get at the other culprits not seen on imaging, the carotid sheath and digastric.
I know for sure I was looking for a surgeon who had the experience to make the right decisions in the field. I didn’t choose Dr. Costantino who I’m sure is a top notch surgeon because his preoperative plan is to remove certain things on everyone he does the surgery on. I wanted something more personalized. Please don’t read this as a knock on him it’s just a personal choice. Long way of saying that some surgeons may shave c1 just as part of the plan they follow
Can I ask who your surgeon was?
I had a great consult with Costantino. He was the one who said I could proceed with surgery or consider angiogram but also stated the angiogram is not without risks.
Did you regret having the angiogram done? Who performed your angiogram?
Thank you!
My surgeries were done by Dr. Nakaji in Phoenix. Angiogram with Dr Amans at UCSF. I don’t regret having it as it provided the evidence that I was a good surgical candidate. Dr. Nakaji would have not done the surgery without it and he was the best choice for me. I met with Dr. Costantino as well and just thought Nakaji was a better match for my needs.
I want the personalized touch as well. There is just too much variance. We can see it in the stories here.
Can anyone talk about the transcranial doppler. It seems to me that it could be a good alternative. It can be done with head movement.
@jsisto - You’d need to have an appointment with Dr. Hepworth in order to be referred for an ultrasound of your IJVs. His consult protocol is you see his NP Sarah Reynolds first. She does an initial assessment (day 1) then will refer you for the jugular US (day 2) then you’ll see Dr. Hepworth (day 3) once your US results are available though in a few cases, patients have been able to get all that done in 2 days. The cost of an initial consult is $650 which is not covered by insurance. This is a new practice we’re seeing among doctors as initial consults used to be covered by insurance but several doctors on our list now have them set up so they are not.
Getting through to his office can be frustrating but I suggest calling late morning (11:30-12) or later in the afternoon (4-4:30). Remember that CO is on Mountain Time. I’ve also found that calling 3-4x in succession will get me to a “real person” rather than vm. Emailing your request is another option - info@denversinuscare.com as emails are sometimes answered pretty quickly.
@Isaiah_40_31 thank you. Hepworth is not my surgeon and I haven’t met the PA yet. I have a surgeon on the east coast I feel comfortable with, but I would like to get the US before surgery or before the catheter venogram. I was just trying to maybe get my PCP to order it the way that Hepworth would.
@jsisto - It’s fine for you to try getting your PCP to order the protocol Dr. Hepworth uses. I know others have tried that approach & it has been successful for some but not others. It depends on the proficiency of the radiology tech doing the US, I think.
Hi friends,
I’d also agree to only get a catheter venogram if it is absolutely necessary. It is a dangerous exam and comes with a very high radiation dose.
Dr Hep. had to order one for me bc the velocities measured durig ultrasound had been fastest at the highest point directly at the jugular foramen. So they had to rule out the problem is higher inside the skull at the cerebral veins.
I also had a venogram done again here in Germany, but it wasn’t done properly, despite i gave them precise instructions of Dr. Hepworth in advance. That was kind of terrible and brought no further insights and gave me a heavy radiation dose and a crampy calf for month. Additionally their wrong report stated that there was no need for another surgery. The surgery we performed anyway was the the best for improving my health though.
I’m glad you went through with your final surgery & it has helped you so much, @TheDude! 
