I wish it for different circumstances too but it’s so nice knowing we aren’t alone in this nasty diagnosis. I swear I saw you mentioned something about Dr. C maybe not having access to mitomycin-c at Northern Westerchester Hospital…did I make that up ha?
That is an interesting note/comforting one about Dr. C. If it helps I also went a bit nuts one night and googled his name and malpractice suits and didn’t find anything alarming.
I will be flying from CA to NY this Sunday with surgery on the 23rd at Northern Westchester Hospital so let’s just hope all goes according to plan and I can fill ya in on the whole process.
@dreamliner - Thank you for the extra information about Dr. C! WOW! He’s very accomplished in surgery & out! I think there’s a lot we don’t know about the doctors we see. It’s easy to imagine they just see patients in their offices & do surgery. THE END. It’s quite eye opening to learn that many of them do far more than meets the eye, yet they never talk about it among their patient communities.
I don’t believe I mentioned that specifically (although my memory is terrible so I may have haha). Interestingly enough though it seemed like Dr. Lo believed it wasn’t easy to get that in the OR at certain hospitals, so it’s very possible that is the case.
Actually did the same thing with Dr. C, I feel like I do it at least once with each surgeon before I go thru with anything
Hoping for safe travels & a low-stress week there for you! No rush at all with anything of course, only if you feel up to it!
@maryscooter finally heard back from Dr. Hui. From his team:
Per Dr. Hui, “Both Dr. Lo & Dr. Costantino are brilliant physicians, but unfortunately, there is not enough data to support the use of Mitomycin-C. If you choose to use it, it’s not wrong, and if you choose not to use it, it’s not wrong either, bottom line is they want to help you, but I cannot advise whether to use one or the other.”
He also alluded to following what you feel most at piece with, & to lean into any spiritual guidance if you are inclined to do so.
Obviously not as great as a distinct answer, but at least he views both options as acceptable. Safe travels to you for your journey that’s coming up!
Sorry for the delayed response - getting prepped for surgery and flying from CA to NY has been no joke. Still doesn’t feel real. I think you might’ve just mentioned somewhere about Dr. Lo saying mitomycin-c was in general not super easy to get. I actually reminded him today at our appt to request it and he was like oh ya great call - and turned to the MA and asked her to contact the hospital to make sure they ordered it ha.
Thank you so much for getting back to all of us about Hui’s take on mitomycin-c. Definitely not a direct answer ha but I’m slowly learning that even the best of the best are still learning so much about our unique (aka damaged) bodies. I wish I was having Dr. Lo for the C1 shave but it’s going to be Dr. Tobias on Monday. I’m going to go ahead and let them use it on me (if the hospital supplies it) and will let you know if there are any adverse effects post surgery.
Definitely let me know if you end up going with Costantino will be happy to share whatever I can to make it easier for you!
Oh man I can only imagine! I had to do a PA to CA trip a little while ago & I felt like I was prepping to move across the country. Hope you can rest up & relax inside this weekend while dodging the freezing weather
You’re correct yeah, Dr. Lo did say depending on the hospital, the mitomycin-c could be very difficult, or nearly impossible to get for a procedure like this. Glad you reminded him & I’ll remember that for later if I follow through with him haha.
You’re absolutely right, even this far up the medical tree it can be hit or miss with all the things that people are trying. I’ve had to learn that it’s mostly helpful for someone to just straight up say that don’t know, even if I find that frustrating initially.
I really appreciate your willingness to keep me posted on it all, I think I’m leaning towards Dr. C right now but hearing another experience will help a lot in making my decision. I’m very interested to hear how it goes & really hope that this a breakthrough in relief for you. Will be praying & thinking of you this Monday, & we definitely would love to hear how you’re doing…only when you feel up to it of course!
That’s exactly what it felt like! And on top of that because of the holidays we refused to check a bag and as true Californians do not do well in snow haha.
I plan on reminding him right before surgery as well because he told his new MA to check with the hospital to make sure they have mitomycin-c on hand and I don’t trust that will happen.
If you can wait a few months I can give you a really solid update I’m really curious if Hepworth missed more than just the amount of C1 involvement I have and will only have that answer once Costantino gets in there. Have a wonderful Christmas!
I will be thinking of you and sending lots of positive vibes your way for this surgery!! I am so glad we could connect in Connecticut while you were here and chat about our shared experiences. You are a true warrior!!! Annie D.
I 100% agree. Definitely doesn’t hurt to confirm especially with something like this, & in light of it being relayed to the MA before.
I absolutely appreciate that, it’s honestly the best thing that I could ask for in the midst of making a decision. I think I’m going to wait at least another month or two before I schedule anything, & want to meet with another of my doctors as well as send some additional questions over to Dr. C. Thank you so much for being willing to help me out like that, it really does mean a lot & it’s especially nice to hear from someone in nearly the same position, especially with how lonely things can feel in our niche corners. Have a merry Christmas as well & best wishes for Monday! Stay warm
@Jules@dreamliner my apologies for being MIA. I haven’t been on my computer or phone much since surgery. I also was hoping to write you both back once I had more to share like the surgery report/pics Costantino took before and after of the jugular. I haven’t been able to get either from his office yet.
I at least do know for sure now that Hepworth missed my Occipital Artery causing compressing my IJV and didn’t shave nearly enough of C1 (this part he at least admitted to months after my surgery with him).
I honestly don’t know how I’m feeling yet. I still have constant headaches, pain at the back of my head is worse than before surgery, and my left side (non surgery “good” side) continues to be swollen. I think the left side might be from a swollen lymph node behind my ear so thanks to advice from @Isaiah_40_31 I’ve been trying to do some drainage massage/warm compresses to get that down.
I feel like at the month mark will be a much better place marker for determining how successful the surgery went. If I try to imagine all of the pain from surgery being gone and my left side not feeling swollen I do think I would be feeling better but it’s just so hard to know for sure. I hate when surgeons tell ya give it 3 months to a year to fully heal because that’s so hard to grasp mentally when you’re the one living through each day but I do think there is SO much truth to that statement.
I’m really curious if Hepworth missed more than just the amount of C1 involvement I have and will only have that answer once Costantino gets in there. Have a wonderful Christmas!