@Chrickychricky that’s very interesting, both Dr. Hui & Dr. Patsalides told me I had a significant gradient across C1, & I had have the non-sedation procedure with Dr. Patsalides. Seems like he wanted both Dr. Hui’s letter & the op-notes from my catheter angio/veno, so fingers crossed going forward! I looked back on a few of yours posts but might find you again if I decide to go with him down the line
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Sounds like I will have to strike him off my list because I really can’t do procedures while awake. They tried that in the hospital with a catheter to the heart in the past but they ended up having to totally knock me out due to pain. Probably due to my genetic issues.
But Dreamliner sounds like she will be a candidate for Nakaji.
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This is a very good point! I imagine there are a number of factors that can influence whether the blood flow normalizes or not after an IJV is decompressed.
You made me laugh, AGAIN! Love your sense of humor, @Chrickychricky. I have some pretty humongous collateral veins. It would be nice if my blood flow would head back to the route that was designed to drain my brain rather than the “backroads” as you put it.
Hmmmm…As mentioned, there’s debate about whether awake vs asleep is better for an angio/venogram. I asked about this specifically before Dr. Yakes did mine & he said the results were the same either way but he felt asleep is safer. Now I’m wondering if that’s why my very compressed looking right IJV came up w/ no compression in my venogram i.e. because I was asleep. It is interesting though that even though the right looks worse, my symptoms are significantly worse on the left.
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@dreamliner - I’m sorry you tried so many times & only ended up w/ VM. I called around 4 pm mountain time today, & my call was answered by a person. Maybe it was good timing?
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@Isaiah_40_31 perhaps, I will definitely try again in the following days if my message isn’t returned. On one hand I want to do things in a timely matter but on the other I know it may be wise to wait to make sure I’ve heard from who I need to prior to making a decision. I need a vacation from all this surgery talk, can it be 2019 again 
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I bet you’re feeling battle weary, @dreamliner. You’ve been doing this far too long, & at your age, you should be out enjoying your life not trying to determine who will do your next surgery. It’s tough when genetics strike out against us at a young age. Maybe you should consider a medical career. You’ll know more about your situation than some of the medical professionals you see by the time you’re done! 
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@Isaiah_40_31 that’s very kind of you to say, & yes I imagined I’d be on pilot forums by now, not exactly this one 
Funny you should say that too, my main doctor at Johns Hopkins always jokes that we need to get me better so that I can come takeover his job when he retires
I actually also just met with him today & he gave some great advice as he knows Dr. Hui & a handful of the other guys. Was great timing & exactly what I needed to hear! Will let you guys know how the Dr. Lo/Costantino consults go this week if any of y’all are interested
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See! I’ve got an advocate in my camp for your career! 
Since you’re a pilot, you could become one of the doctors with the group Doctors without Borders who go to remote areas where doctors are few & far between and help the poor people there. 
:
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I’m glad that you got some advice from a doctor who you respect. And yes, we’d like to know how you get on with Dr Lo & Dr Costantino 
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I know a few people that do this, as well as fly families who can’t afford to travel for medical treatment! Would be an awesome thing to do if I am able to make it back one day.
@Isaiah_40_31 @Jules Dr. Lo visit actually went great! Dr. Hui personally called him for me & after a few discussions, Dr. Lo agrees that IJV decompression is the right move. The surgical team should be Lo/Costantino, which I feel pretty good about. Dr. Lo is familiar with an MCAS protocol that my Hopkins doctor suggested for the surgery window, so we’ll plan on that. Also am going to get steroids to reduce inflammation, & it seems everyone is well aware of the general plan. Their hospital on Long Island is only 2-2.5 hours from me so I think it should all work out. A quick chaange from the uncertainty of things a few days ago, but sometimes that’s how it goes 
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That’s really good to hear @dreamliner , I’m so pleased for you! It’s great when you fins a doctor you feel comfortable with…Do you know how long you’ll have to wait? 
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Really glad you have a plan now, @dreamliner. I agree we can go from uncertainty to certainty about a decision in a short time when things line up. I’m so glad they have for you. Now you can relax & focus on other things. Hopefully they get you scheduled ASAP!
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@Jules @Isaiah_40_31 Thanks so much guys, it’s great to feel at peace with a decision, especially with all the noise that can surround one. It looks like I can get in as soon as December, although I might wait until after the holidays for a few reasons.
I actually met with Dr. Costantino today & he mentioned something super interesting regarding scarring…he said that he’s found that mitomycin-c (used primarily in chemo) can suppress excessive scar production in patients that are prone to it. He said he will plan on applying it on and around the IJV, as well as up to the incision. It was great meeting him in person, he has an unbelievable wealth of knowledge & is really trying to help discover new things to keep “success” rates climbing. Incidentally I also received a call from Dr. Hepworth’s office today But I feel pretty confident in the team over here.
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Interesting . Hepworth uses sheep intestines and your doctor uses mitomycin-c. Seeing a lot of references to mitomycin-c in eye surgeries. I think some of the toxicity issues I am seeing on it might be more related specifically to eye surgeries.
Will have to look at the differences. Someone who is getting ready to meet with Hepworth might ask for his take on one versus the other.
You should now feel a HUGE sense of relief now that you made your decision on the path you want to follow.
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@JugularEagle that’s good to know, I definitely am going to read up more on that because I had no idea what mitomycin-c was before today. Dr. C told us that he used to be a military surgeon, & has seen a whole bunch of hard scenarios so he’s sort of tapped in to the multitude of more unconventional ways of dealing with things. He’s also a facial plastic surgeon so I guess he uses this from time to time to minimize facial scarring 
I definitely do feel a lot of relief, I think the fact that they’re pretty close to me is also helping with that. They said I could go home a few days after & then can check in/back when appropriate. Dr. C said they’re having about 80%+ “success” right now which is encouraging. I think however were I on the west coast or closer to Denver, I’d go with Dr. Hepworth
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That’s really interesting; we get asked so much about internal scarring, & revision surgeries have occasionally been needed to remove scar tissue/ adhesions.
@Bowser also posted about his surgeon’s technique using fat cells in this discussion:
Scarring from Surgery? - We’re In This Together - Living with Eagle
It’s great that doctors are considering this with their surgeries now!
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Thank you for bringing up the fat cells, as scar retardant, too, @Jules. I’d forgotten about that. It’s good there are increasing techniques for managing scarring. Maybe one day doctors will have an “arsenal” & will be able to determine what’s best for each individual treated.
@dreamliner - I didn’t know Dr. C had been a military doctor, but I do see an advantage to that background. When those docs are operating in the field, they often need to “fly by the seat of their pants”, & as you noted use unconventional methods for securing successful surgeries. When those techniques can be brought to a formal operating room, it gives the surgeon more flexibility & ability to work “outside the box” if necessary. I think this can be very beneficial to patients & positive for outcomes.
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Dr. Hui (based in Hawaii) often coordinates with multiple other physicians to assist/investigate complex cases. So, a “meeting of the minds” in Hawaii would not be surprising. He also often works with Dr. Fargan and Dr. Hepworth, as well.
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Do you have the name right? I can find Callow for neurology in Ohio. I did find an Andrew Callan in Colorado who is on the medical advisory board of this foundation
I stand corrected! Thank you!!! I was thinking of a different neurointerventional radiologist in cincinnati. I’ve corrected my mistake in the post.
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