I had my follow up with Dr. Constantino this week and went over the results of my 3D venogram with him.
It appears that I do have severe Internal Jugular Vein Compression. Dr. Tobias is Dr. Constantinos partner in surgery and they both said that my viens are compressed by 70%. I still need to see a subspecialist for the instability issues and am going for a second opinion in June with Dr. Cognetti. They are recommedning a styloid removal to the base of the skull, a c1 shave (trimming off a small amount of the treverse process of c1 and decompressing the juglar vein.
Dr. Tobias stated that my case was the worst he’s ever seen, and Dr. Constantino said that he’s seen only 1 other case with styloids larger than mine, but never compression this bad. Their plan is to do do 1 side and then after 3 months do the other side. They are aware of the potential for other cervical instability and know I’m going for consults on that, but they said that even if you have it they would have to do the surgery for the styloids and jugular vein before any fusion, because to get to the area they need to get to is harder to reach if you are fused.
I will be seeing a partner in their firm soon to assess for the instability and also seeing Dr. Henderson over the summer - I want their input before making any decisions. As it stands now, it doesn’t look like I’ll be having any operations until the mid to end of summer as I want to at least get a second opinion in June with Dr. Cognetti for my peace of mind and to give myself the best chance at making the right decision.
I can’t believe that I had such bad IJV compression…it explains so much to me now that I struggled with for years. I am praying that the instability is addressed, I can get decompressed, fused if needed and move on in health. Its been a trip to get this far.
I’ll update again after my CCI consults and 2nd opinion. Hope everyone has a good weekend. Thanks for all your advice and help!
Thank you for your update, @Disabled_Inventor. I’m so glad you got confirmation about how serious your situation is from Drs. Costantino & Tobias. Dr. Cognetti is a great doctor to see for your second opinion. I’m also glad you’re getting two opinions about your cervical instability situation. It’s frustrating that it takes so long to get appointments, but at least you have them set & can look forward to them as they come along.
I look forward to reading your updates about CCI & also about what Dr. Cognetti thinks.
I hope the time seems to fly by as you await your next appointments. Happy weekend to you, too!
Well, they’ve seen plenty of cases so if they think yours is bad then they know what they’re talking about- it’s not great to hear, but at least you must feel vindicated with what you’ve been suffering! I don’t know too much about who works with Dr Cognetti, for vascular ES, there don’t seem to be many posts about members who’ve seen him for VES, so it will be interesting to hear how you get on, & about your assessments for CCI…
Great news that you have their attention. While it doesn’t make the symptoms go away with a diagnosis, it must be somewhat of a relief to know you walked out with a firm diagnosis and doctors’ who believe your story. It’s rather validating and may be enough to keep you motivated and energized to make it through the next few months while you investigate CCI.
Even if you have CCI, the kicker is that you still need to have this surgery, and there aren’t many modifications available to keep the musculature if you need a TP/C1 shave. What you can maybe do is start a strengthening regime now to build up your stabilizing neck muscles so it isn’t as traumatizing afterwards. I wish that had been an option for my husband as the lack of neck stability continues to be an issue for him 5 months post-op. Once he made the decision for surgery it was done only 6 weeks later.
