Dr. Hepworth wants to do styloidectomy even though other specialists say jugulars look normal (including Patsalides and Nagarsheth). Very confusing. Would you trust Hepworth here or side with those who are cautious?
I have not seen Costantino, Cognetti, Lui, or Nakaji. Would you recommend a second opinion from them or anyone else? And would you recommend a catheter cerebrovenogram before surgery, given the risks of both?
If you are speaking from experience and are open to connecting directly, please also let me know. Thanks!
I’ll just add to what I’ve shared on a private message that we do always suggest members get a 2nd opinion to be sure, but sometimes this can muddy the waters even more! I hope others will share their experiences…
@dancer111 are you dealing with just vascular issues or do classic overlap. I found that specialists that typically deal with vascular dismiss completely dismiss classic symptoms which can be just as debilitating.
@dancer111 - I agree w/ @Jules regarding getting a second opinion. Interesting that Patsalides AND Nagarsheth have both said you don’t have IJV compression, however, I don’t know what criteria or testing they used to determine that. If they’re strictly going by a radiology report (which I doubt) then you definitely need another opinion. Dr. Hepworth seems good at finding obscure things other doctors miss.
I had my 3rd ES surgery w/ Dr. Hepworth after my IJV compression was missed by the surgeon who did my first two styloidectomies. Dr. H required that I get a catheter angio/venogram before he’d operate as my imaging showed my right IJV was almost completely closed by soft tissue whereas the left one had some space for blood flow. Interestingly, all my symptoms were left sided. The catheter venogram results indicated zero compression on the right, & on the left, the catheter couldn’t pass between the TP of C1 & the remains of my styloid.
The blood pressure w/in the veins & arteries can be measured during a catheter angio/venogram which can be helpful in detecting different points of compression in the vessels. That type of imaging can also be done dynamically to determine if compression is worse in particular head positions.
I don’t recommend having a catheter angio/venogram unless it’s truly diagnostically necessary as there can be uncomfortable side effects for a few days afterward plus the slight risk of a stroke. I ended up with 4 days of visual migraines, probably a reaction to the contrast used in the imaging, but since my imaging gave Dr. Hepworth the info he needed, it was worthwhile.
Possibly , and of course the nerve pain is awful too, but usually with surgery by a doctor experienced enough to remove at the skull base (which the VES doctors are) it would be enough to help with those symptoms anyway…
Right, what I was getting at is, if there are additional symptoms beyond the vascular piece, and Dr. Hepworth is recommending a styloidectomy, while others don’t think it’s vascular, wouldn’t it still make sense to consider surgery to address those non-vascular symptoms?
I have some high and low CSF pressure issues and CCI. I checked out the classic issues and don’t really have those (my case is closer to pseudo eagles per Dr. H).
I’d probably ask Dr. H to walk through exactly why he feels it’s appropriate in your case, what he’s seeing specifically, and then go with your gut from there.
Well, I had a vascular surgeon question Dr. H opinion that I had vascular compression based on a quick ultrasound because this guy wanted to prove another doc wrong. Eagles was definitely out of his wheelhouse too. Dr. H is going off a CTV. He sees things others do not. I can say that I have taken to pull my imaging into radiant viewer and look at in 3D and although I am not an expert, I can see areas that appear to be compression. I know that something is not right in my neck and I have worsening hearing loss in one side where I get shooting pain up my neck to my ear.
Im having surgery in a few days, so I will tell you what he finds when he goes in there. See you all on the other side..
Thinking of you and praying all goes well with your surgery, if I remember right it is tomorrow?
@dancer111 I do not know if I have good recommendation for you but wanted to share with you some of what we have learned in our search regarding IJV compression. A neurosurgeon who specializes in spinal instabilities told us that our daughter does not have IJV compression and he refused to look at the diagnostic report we had from an ultrasound of the jugular vein that showed OBVIOUS constrictions. We were flattened. Especially when he knew Dr. Hepworth and wanted us to give him his greetings! The reason we went to the nuerosurgeon was trying to figure out what was causing all these head and body symptoms and at that point when we scheduled the appointment thought we were dealing with neck instabilities which we found out our daughter does have but not significant enough to be the sole problem. Even then the neurosurgeon wanted to do a lot more imaging and such but our cardiologist the night before contacted Dr. Hepworth for us and we already had the personal conversation with Dr. H so we had a bit more knowledge when meeting with the neurosurgeon. So what I am trying to say is… a doctor like Nagarsheth who specializes in abdominal vascular compressions and a nuerosurgeon who specializes in spinal instabilities is not going to see the same things as Dr. H who is a skull base/ vascular surgeon. Our daughter had surgery with Dr. H on April 1 and he found a LOT wrong in her neck. Now we wait for healing and symptom change. It will take time but the first improvement was the head pressure when flying home nearly 2 weeks after surgery was MUCH MUCH better than we had hoped it would be!!! She did not need anything to help her cope with pressure changes!! We praise God for that first miracle.
@BuckeyePrincess - Thank you for sharing your perspective re: other specialists opinions vs those of the surgeon you planned to have do your daughter’s surgery. What you said makes a lot of sense.
I’m very excited to know that your daughter’s head pressure was already less only 2 weeks after surgery. Her symptoms have been severe for a while so I’m glad you & she are being patient in allowing her body substantial healing time to see what else changes. I will continue to pray & hope for an optimal outcome from this surgery.
