Hi! I was supposed to see Cognetti in February but was able to snag a new patient appointment for THIS Tuesday! YAY
Anyone have any advice for new patient appt?
My CTV showed severe bilateral jugular vein compression btwn slightly elongated styloid + c1. I have a history of CSF leaks from large sacral tarlov cysts as well. Surgery for this was last December.
Brilliant that youâve got an earlier appointment!
We do have a list of questions to ask doctors in the ES Info Surgery Section, but theyâre more for asking doctors to find out how successful their surgical technique is, but we know that Dr Cognetti has done lots of them!
As you have vascular ES, I would ask about whether he feels a C1 shave is needed as well as the styloidectomy, and if you have worse symptoms one side or another which side he will do first. If you have more compression one side, then you might want that one done first, but also worth considering is if you have a dominant IJV, as sometimes that can make more of a difference if that one is decompressed first.
You could also ask him if he finds any other compressions (sometimes people have compression from muscles, other blood vessels or occasionally nerves) if he will make sure that the IJV is decompressed.
I hope that your appointment goes well!
Thank you for your response! Its interesting because I have more vascular symptoms on one side and more classic eagles on the other.
My right side (dominant) is completely blocked off so I have more pressure, ringing, blurry vision, muffled hearing, eye/head pain on that side but recently the left started to have what more feels like nerve pain so weâll see what he says.
@Twistyburrows - Super amazing that you were able to get your appt moved up so much. It does pay to get oneâs name on the cancellation list for any doctor that keeps one!
Please let us know how your appointment goes.
I was able to see him today too. A fantastic doctor- very deliberate and caring. He really took his time to identify my unique case.
Iâm so glad your appointment went well, @Johnny99. Did you get a surgery date set up?
He advised against surgery. Since I donât have elongated styloids (itâs my C1 causing compression, which he described as not that bad), this is the anatomy Iâve had all my adult life according to him. I need to monitor symptoms and if they get worse, I have a follow-up scheduled with him. Since my symptoms improved since the summer, it could be that there were other causes. Iâm reassured as my vascular neurosurgeon (who discovered the compression) also advised me against surgery.
Do you have any next steps? Will you be looking into cervical instability then since its c1?
Im here to report back! It felt like a pretty good appointment overall. Hes having me talk to the neuro radiologist over there. I had pressure gradient test but it wasnât dynamic. I need to see if there is enough information to proceed or not or if I need the testing again with the dynamic approach.
Theres another cause of confusion being that the right side is dominant vascular flow, but I have multiple compressions, only one being styloid. He said he cant even follow the vein on imaging. It just disappears a few times which is wild lol. So if we do proceed, we have to weigh which side would make the most sense. Right may be harder to open up but it may be the side to give me the most relief. But he did mention that he does both sides one at a time so potential for both sides being done. He didnt outright offer surgery because my case is complicated and I have alot of weird symptoms because I have had symptomatic sacr tarlov cysts with csf leaks. I guess Iâm deemed more complicated and theres always the risk of proceeding and it not resolving symptoms tho personally I do really think it will as I am negative for CCI.
@Johnny99 Iâm glad that your symptoms have improved a bit, and good that heâs not dismissing you outright but happy to leave things for a follow up later, you donât want to rush into a surgery if it might not really help⌠Are you going to look into getting any other opinions? There have been some discussions about appealing insurance if youâd have wanted to try & see Dr Costantino, Iâm sorry I canât remember how far you got with seeing him?
@Twistyburrows Iâm glad that you feel the appointment went well, but a shame you didnât get any definite answersâŚitâs good to get as much info as possible before deciding about surgery, especially if you have a complicated venous system! Do you have any of the more âclassicâ ES symptoms, pain in your neck or trouble swallowing? If so then the surgery might be helpful to alleviate those as well?
I no longer consider myself a patient of Dr. Costantino. There were too many red flags to proceed with surgery with him. To name a few: after getting a second Angio that measured the pressure, I never heard from him. I rated positive for a staph infection in my nose a few days before surgery and they wanted to proceed anyway. And of course there was the Insurance- they wanted to proceed without pre-approvals, promising to help me after surgery. Considering the Office staff did not fight hard before hand (I spent 6 hours on the phone and their staff spend 45 minutes) I did not trust that they would fight for me afterwards. So, since the Dr I trust most (my Neurosurgeon who discovered the compression advised against surgery when I was seeing Costantino) said I shouldnât get surgery, now that I have a second opinion from a surgeon that is not advising me to get surgery, I really donât feel comfortable with Costantino. I got the sense that his office wants volume and thus very aggressive on their approach. The insurance balking may have been a blessing in disguise. At least it brought me to see Cognetti, who I feel much more comfortable with and have more confidence in his approach to my condition.
I will be looking into that and I need to see if I have ED Syndrome, which would explain neck instability.
Yes I did say I feel like my right side feels more vascular as my pressure headaches for 2 decades were more right sided alsong with worse vision/hearing on that side etc. My left has more signs of classic but not too many. Some fluctuating nerve pain and throat stabbing sensation on that side.
Itâs actually pretty scary news that you likely have multiple compressions to the extent that your IJV just disappears in several places. Usually those beyond the styloid are caused by soft tissues i.e. muscle, nerve, other veins/arteries, scar tissue, lymph nodes, &/or fascia. Iâm glad youâve been referred to a neuroradiologist. It sounds like an angio/venogram would be a good idea as that could help determine more specifically where the additional compressions are & perhaps what theyâre being caused by though an MRV might be even more helpful since it will show whatâs constricting from the outside where I believe the venogram will only be able to report where along the IJV the compressions are occurring.
I agree that surgery to get at least one IJV opened up (right preferably) would probably be very helpful in resolving or at least reducing the symptoms you have. I hope the neuroradiologist has some good ideas regarding moving forward. Please let us know how your appointment goes once you have it.
@Johnny99 - Good to know your symptoms have decreased a bit over the last few months & that surgery isnât imminent. You made a wise choice in making a follow-up appt. w/ Dr. Cognetti before leaving from your appointment since you know how far out he books.
I have to say that âlooks arenât everythingâ when it comes to IJV compression. Weâve had a significant number of members who had what looked to be ânot that badâ but their symptoms indicated otherwise. Just keep in mind that an IJV doesnât have to look terribly compressed to be causing miserable symptoms.
Yes its quite scary but also validating as my right sides vascular symptoms go back two decades.
I did have the pressure gradiant testing in September but it wasnât dynamic so I think they want to assess if there is enough information on it or not. Iâm hoping I dont need a repeat test but Iâm at the will of whatever the radiologist suggests.
Thatâs fair enough, best to go with a doctor you feel confident with, & if two doctors are wanting to be cautious about whether you need surgery or not, then thatâs sensible to listen to!
Agreed that itâs best to follow your doctorâs recommendations. I wonder if you could have a dynamic ultrasound to check blood flow velocities along your IJV like Dr. Hepworth orders. Thatâs much invasive & still provides solid evidence of compression.