So Dr. Nakaji’s office just called and they received my CTV and report and they do not think I have IJV- and he does not recommend surgery for me. What am I missing? I have bi-lateral styloids 4.5 cms. Dysphagia, chronic migraines, pressure behind eyes, gait issues, CSF struggles to flow without manual help, horrible dry eyes, pain in jaw, pain on turning my neck, resting heart rate 95-105, sharp pains in my head, pulse sounds in my head etc… What am I missing? I don’t understand.
1 Like
Oh and also-- I asked her, What about all my symptoms. She said he doesn’t think surgery would alleviate my symptoms.
1 Like
@Minh2025 - Dr. Nakaji has rejected other patients who have symptoms similar to yours w/ all the signs on imaging of IJV compression. We always scratch our heads 
when that happens. It’s usually not clear why he has the opinion he does about surgery not helping. Some of those patients get an opinion of another doctor or two & some just face living w/ the symptoms as they can’t afford to pursue further help 
.
It’s definitely worthwhile getting an opinion from Dr. Hepworth, Dr. Cognetti, & /or Dr. Costantino. Of those 3, you’d probably get an appointment soonest w/ Dr. Costantino. As has been mentioned, Dr. Welch, in your state, has also done a styloidectomy w/ IJV decompression & C1 shave for one of our members, but we don’t know how experienced he is in doing those. We do know the 3 doctors I’ve mentioned are very experienced. A fifth doctor - Dr. Damrose, was trained by Dr. Hepworth, but we don’t know about the outcomes from the surgeries he’s done. He’s in California.
4 Likes
It’s so discouraging… I don’t want surgery but I want relief… I have insurance -if one doctor says I don’t need it and the other doctor says I do is that problematic on getting them to pay?
I have an appointment with Dr. Babu Welch next Monday and I also sent my images to Dr. Osborne in LA… I guess I don’t even really know what to think or feel right now…
2 Likes
Try not to be upset. Doctors often disagree regarding the significance of what is seen in imaging. That’s why we recommend getting multiple opinions.
Several years ago, I made the mistake of going with one doctor’s opinion on a significant ear problem & the surgery he did has left me w/ very chronic tinnitus which I’m now seeking help to resolve through another surgery. I actually got an indirect opinion from another ENT who mentioned she’d stopped doing that particular surgery, but I was so set on it helping me, I didn’t ask her why she’d stopped doing it. Her insight, if I’d pursued it, could have saved me from being where I am today.
2 Likes
I’m sorry that happened to you.
I’m still going to pursue other opinions I just didn’t see this coming… I’m very surprised… not just my symptoms to me it looks like it’s pinching my jugular and I can feel it…
I’m glad you guys are here to run things past… I wish moving forward that Dr. N would just say he doesn’t want to do the surgery on that person instead of a very big statement- I don’t think you’ll get enough symptom relief and I don’t recommend it… Really don’t know how he could know that.
I’ll let y’all know how it goes Monday and I will reach out to some others to get more feedback.
1 Like
I absolutely go beyond agreeing! No doctor can say whether a surgery will help or not & should never tell a patient that. Being ambivalent about doing surgery for a patient would be more acceptable in my book albeit still frustrating.
2 Likes
I’m so sorry that he didn’t agree the surgery would help…as @Isaiah_40_31 says, we’re bewildered at the decisions sometimes, to us your symptoms seem quite clear! Maybe it’s when there’s possibly other things going on & so a styloidectomy won’t be the only surgery you need, Idk, just guessing?
Sending you a hug, & hoping that you get somewhere with another doctor 
3 Likes
@Minh2025 remind me, have I taken a look at your imaging yet? I usually double check by checking the user’s posts, but your profile is private and so I can’t double check. If I didn’t look at your imaging, I can show you the compression.
If you want, you can put your CT files into a folder on google drive and then private message me a link to the folder. Then I can go through the entirety of your imaging and show you what I see.
4 Likes
I only had a couple of snapshots from being at the imaging center… We could not get the disk to open you have to have certain software… I took it up to Kinko’s office and they said it was locked and then I asked the imaging center and they said it wasn’t locked… I gave up.. here’s a couple of pictures I had posted before
Will you text me the name of what I need to buy to be able to have all the images?
1 Like
As the saying goes, “When God shuts a door, He opens a window.” I’m glad you’re trusting His direction for your care, @Minh2025. You’ll never go wrong when you seek His wisdom & follow His guidance.
I also noticed your report didn’t comment on your internal jugular veins up at the C1 level. The radiologist seems to have totally missed commenting on the area where we see you have compression.
4 Likes
I also was turned down - by the Mayo Clinic. Sometimes they pick and choose what they will work on simply by how they feel about the outcome. I’m still waiting on my second surgical consult, but I am incredibly pleased with the response I received from Dr. Osborne and will hopefully proceed with the surgery within the next two months. Best of luck in your search. Remember, this is still a critical operation that is not widely performed.
4 Likes
Thanks for that encouragement @Lin , & hope that you’re able to get surgery yourself, good to hear Dr Osborne was helpful…
2 Likes
Thanks for sharing that it does make me feel better… I also heard back from Dr. Osborne’s office so I will set up my consult with him… Hope yours goes well keep us posted…
5 Likes