Hello all! Sorry in advance for the long post, but I am so confused on what to do that I am hoping you all may have some advise for me. Prior surgery in 2019 that has regrown to 4cm and right side is 7.3 cm. My new scans also show IJV compression.
Here is where I am at. Dr. Nakaji has reviewed my scans and wants me to have Dr. Mehta do the angio/venograms. Dr. Mehta is in network so I know that his consult and test will be covered. I have my consult with Dr. Mehta scheduled for April 29th and they said they can get the scan done the following week. That requires travelling from Minnesota to Arizona. Dr. Nakaji’s office said they would do their best to get me in to see him the day or day after that scan is done. But I will not know probably until that week (if that) if the insurance will cover him. They denied my first request to have him considered in network for my insurance so I will have to petition - but there are no guarantees.
I have a consult with Dr. Costantino June 3rd and July 15th with Dr. Tobias.
I just had a call today from Dr. Hackmans office in North Carolina. After reviewing my scans he feels that I am a great candidate for a bi-lateral removal and that he feels that removing them back to the skull base will allow enough room to open for the IJV. He can see me for the consult on June 25th and surgery would be within a few days. He is also in network, so I wouldn’t have the insurance unknowns.
I don’t know if I travel down to get testing with Dr. Mehta to see what the pressures are at and continue with the insurance fight or if I trust that Dr. Hackmann recommendation that I will get relief and both sides out at the same time.
Any input and advise is much appreciated. Has anyone had scans that show some IJV compression, but didn’t have any C1 shave done with the styloid removal? Has anyone has surgery with Dr. Hackmann that can give some insight?
You’ve got quite a schedule set up for yourself, @Abby4Paige! I just looked back at the couple of images you posted & recalled that your styloids/calcified stylohyoid ligaments are extremely thick. That is an indicator that getting them removed could provide enough space for the IJVs to expand away from C1 w/o needing to touch C1, but unfortunately, even the doctors you’ve got appointments with may not be able to be absolutely certain until they’re in the midst of surgery.
We have a number of members who’ve had IJV decompression occur just by a styloidectomy i.e. nothing needed to be done w/ C1. Dr. Hackman is very experienced w/ ES surgeries, & there are past members who had IJV compression that decompressed on their own once he shortened their styloids. That’s not to say it happened in every case, but it has been somewhat common.
I’m wondering why you have an appt w/ both Dr. Costantino & Dr. Tobias as usually just an appt w/ Dr. Costantino is enough to establish the need for IJV decompression surgery. It seems like a waste of your time & $ to see both. It’s also annoying that Dr. Nakaji’s office hasn’t set you up with an appt soon after the venogram w/ Dr. Mehta. If that’s something you decide you want to go through with, I’d sure push for a guaranteed appt date w/ Dr. N, close to the venogram date, before traveling to AZ.
In reviewing all you said, I think getting the venogram & Dr. Nakaji’s opinion makes sense then you can compare what he thinks with what Dr. Hackman said which may help you decide whether having Dr. Hackman do your surgery is the best next step.
Oh dear, you do have a dilemma, and the addition of complications with insurance does make it harder!
Others have had the same issue with insurance with doctors; @Chrickychricky had to go ahead with surgery with Dr Nakaji before insurance approved it and was able to get the money back later, here’s one of her discussions: Some welcome news arrived yesterday - General - Living with Eagle
She might be able to give you some advice…but it does add to the extra stress, especially if you might not get the money back! Dr Nakaji can be selective with who he feels would benefit from surgery, so doesn’t always agree depending on what the testing shows…
Dr Hackman has done lots of successful surgeries , and getting both sides done at once has been a positive for the members who’ve seen him, but it would be helpful to find out if your C1 is involved and might need shaving…
It’s not an easy decision, so sending you a hug
