Hello, Kyle again. So, I have a consult with Dr.Hackman here in North Carolina for previously diagnosed vascular eagle syndrome but tonight I was doing some research and discovered Dr.Costantino and was reading about how he does more vascular investigation and intervention. I’m concerned bilateral styloidectomy (to scull base) won’t be enough and that I may have scar tissue around my IJVs or something else that will render the operation unsuccessful. He may also listen more to my CSF leak, CCI fears.
I’m now faced with a challenge, should I go to New York and get Medicaid there in order to see Dr.C instead, or stay here in NC and go with Hackman first and see if that resolves my issue. I don’t want to have revision surgery as that doubles my chances for complication.
It’s a hard decision because I’m so unwell that I want it (depersonalization, anxiety, fatigue) to end immediately, but at the same time I can wait longer if it guarantees results.
That’s a really tough call. I think you should at least have your consult w/ Dr. Hackman & ask him some pointed questions about what he does regarding IJV compression when he sees that during surgery. His answer may give you guidance as to whether or not to have him do your surgery.
We have had members who recovered well from surgeries Dr. Hackman has done just cutting the styloids back to skull base but it is a gamble that there could be something besides the styloids & C1 contributing to the compression. Though Dr. Costantino is very experienced w/ IJV decompression surgeries, as a rule, he cuts the greater auricular nerve to gain better access to the styloid, IJV & C1. Either Dr. Lo or Dr. Tobias (neurosurgeons) work alongside him & do the C1 shave then repair the GAN before the incision is closed. Dr. C also removes the posterior digastric muscle because he believes it gives a better long term outcome to have it gone. We don’t know of any other doctors who routinely do those 2 things during a styloidectomy/IJV decompression surgery. I think most patients do well after his surgeries though.
You’re correct that Dr. Costantino seems to be more “in the know” about hEDS & CCI, etc.
It is hard, & I feel for you with your situation, but like we said when you were thinking of seeing Dr Fargen, while you’re there in NC & have an appointment with DR Hackman, then it seems sensible to to at least see him & see what he says… When is your appointment with him?
I have to agree with comments here. One concern I have is cutting back transverse process or tubercle. Apparently Cognetti takes a different approach without cutting as much as Tobias/Constantino does in chatting with another member here. My concern being future instability in cervical . I am not well versed yet as I am new.