@Emma123 - I’m joining the group who is igorant about Brilinta. My question is, if Plavix was helping you & w/o side effects, why would Dr. H switch you to another medication that does the same thing? I agree w/ Jules, check the list of possible side effects first.
@KoolDude made some good points about vasculature, & I agree w/ his premise about the IJVs being impaired in spite of what Dr. H told you. I also wonder about Dr. H’s comment regarding the vascular group you’ve previously used. Since you had a good experience there & trust them to do the testing correctly, do you think it would be worthwhile to override his advice & have the venogram order sent there anyway so they can decide whether they feel it’s to risky to do this next procedure?
I vote styloidectomy first, & if needed, stent as last resort. I think we’re unanimous on that one!
I’m praying for you to be able to move forward w/ the testing ASAP & for the results to give you the info you need to take your next step in treatment.
Thank you so much @KoolDude that’s all very helpful information. I agree with you that I’d prefer to have my other styloid removed before stenting if it’s compressing my jugular. That’s what I’m thinking I’d like to have the simple venogram of my head/neck done, so that there is a definitive answer about whether or not my styloid is causing compression.
As always, such a huge help to hear your thoughts. Once the venogram is done, I may look into another doctor, as I believe Hepworth’s earliest surgery would be in the spring.
I’ll update as I can. Thank you so much for all your help!!
Thank you all so much for the thoughtful answers! I agree with @Jules that Dr. Hepworth I’m sure knows what he’s doing.
In regards to Plavix, I had to be off it for 2 weeks in order to get a CT/Ultrasound that was more representative. I told Hepworth that I felt somewhat better on it, but it’s hard to say how much it helped, which is why I think he is opting to put me on Brilanta before going back to Plavix.
@Isaiah_40_31@Jules@KoolDude it definitely seems like the consensus is to get my right styloid removed before even considering any type of stenting. I think I’m going to go back to the vascular group who first did the venogram and found the compression on my left side- they are also the ones who assisted Dr. Hepworth with the de-compression and ballooning during the surgery, so I do have a great deal of trust in them. If the venogram shows issues with my right side, I will see what can be done about getting that surgery quicker.
Dr. Fargen in NC is apparently quite the genius when it comes to IIH and stenting/ballooning, so if I do have to go to another doc, it will likely be him.
I will keep updating here as things go on. Thank you all for the sage advice, it’s so nice to talk to people about this who actually understand and can give some educated information.
