Awwe… I feel the same way!!! Warrior friends are the best!!! Think of you often and your healing.
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@maryscooter Great to hear form you, & no worries at all, thank you for taking the time to fill us in! Good at least that those things were identified, I’m sure both of them weren’t helping you out much in getting more complete flow.
Totally understand yeah, it is just me or do post-op days feel like four days rolled into one? It’s so hard to be thinking that far out but you sound like you have a good perspective on things. Prayers for relief as each day goes on, hopefully the swelling on both areas can subside some as you get further & further out.
Just a question or two (you can answer whenever you feel able, just wanted to type them before I forgot):
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Assuming you guys ended up doing the mitomycin-c with no problems? Was there anything he told you to look out for post-op regarding that drug or did it seem pretty straightforward with him expressing little to no concern?
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And since you’ve had a procedure elsewhere before, how did this one compare experience wise? & lastly do you have any numbness/nerve problems or is it mainly just pain/swelling?
You got this! Thanks again for updating us 
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@maryscooter - Thank you for the update. I’m sorry you’re not further along in recovery & still have a fair bit of pain, but as you said, it’s still soon after surgery & you’ll be looking for improvement a bit further down the road.
Very annoying you haven’t been able to get pics & surgical report from Dr. Costantino. I hope his office gets on the ball & sends those things to you ASAP!
I look forward to hearing your 4-6 week update if/when you feel like sharing how you’re doing at that point.
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Thanks for updating us, I was worried that you were having a really tough recovery…sounds like it has been difficult for you, it’s not easy having revision surgery. I hope that you’ll start to improve soon, and that the C1 shave is successful this time. Take it steady & I’m praying for a good result 
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You are definitely not wrong - post op days definitely feel like four days rolled into one! And it’s a rollercoaster recovery wise. Yesterday I felt the best I had since surgery, this morning I woke up and want to chop my head off.
I feel like comparing the 3 is kinda unfair to do just because the first 2 surgeries didn’t do what they actually needed to do in order to decompress my jugular. If I were to compare them I’d say this has been by far the most intense pain wise but that’s because it was a revision that required a lot of scar tissue to be cleared out, and they did more during surgery. If this had been my 1st surgery and not 3rd it probably wouldn’t have been as bad.
I have numbness and some share nerve pain underneath my jaw but both of those are totally normal in my opinion and I had both with the 2 previous surgeries. The nerve problems at least for me have always gone away and the numbness decreases but sometimes will never fully go away. I asked Costantino to not cut the greater auricular nerve because I hate the feeling of numbness and he said that the only reason this would cause permanent numbness is if the surgeon doesn’t properly reconnect/repair the nerve after cutting it. I wish I knew if that were 100% true or not but I would say to expect a lot of numbness post surgery and very very slowly you can expect a lot of that to go away post surgery.
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@maryscooter really appreciate you writing this up, especially so soon while feeling the way that you are!
That’s a real interesting point about how he changed his mind during the surgery – I do recall in my mitomycin-c digging that one possible complication was endothelial damage (mainly if applied incorrectly), so I wonder if his decision was partially rooted in not exposing you to that possible side effect, given already thin vascular walls. I actually have another follow-up with him a week from Thursday, so this is great for me to form a few questions from regarding how he decides whether to proceed or not with the application.
That definitely makes sense, I can attest to that with my sub-occipital surgeries…the first was miles easier than the third.
Gotcha, that’s great to know, thanks. Did he have any suggestions on things you could do or supplements to encourage any numbness to recede some? I’ve read that things like lion’s mane can help with nerve regeneration, but of course am not sure of any contraindications with supplements when recovering from something like this.
Thanks again for taking the time & energy to fill us in, will be praying that your days can start to level out some & move towards continual improvement.
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I really wish my husband had just done what I asked and recorded Tobias and Costantino so I knew what his reasoning was for not using mitomycin-c. That’s interesting about endothelial damage - I’ll definitely make note that of that and ask if that was potentially why he didn’t use it. It sure sounds like it could be the medical term for why he didn’t vs what my husband is reiterating of “your walls were just too thin” ha.
He didn’t have any suggestions supplement wise or anything else for helping the numbness post surgery but to be fair I didn’t ask. I get the vibe from him that he doesn’t think what he does will cause permanent numbness or permanent nerve issues - even though several patients I’ve talked to still have numbness 6 months to a year out from surgery. I suspect it might be because the level of follow up with patients that far out from surgery isn’t super common.
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@Isaiah_40_31 @Jules Just to update you guys, I met with Dr. C again & he explained how he’s currently using a multitude of approaches to reduce scarring around the IJV. He’s mainly keeping mitomycin for re-do surgeries, or in cases where the patient has a history of extensive scarring from other procedures. He has it ready in the OR for each procedure, but makes the decision based on what he sees during the surgery, & has a few step-down solutions that he has used.
I feel 100% confident that he’s the correct person to direct the surgery, just am having a hard time deciding between Dr. Lo/Tobias. Am supposed to meet with Dr. C & Tobias shortly, hopefully that can clear up some things
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Thank you for the update, @dreamliner. That sure helped clear up some questions I had about mitomycin. I hope it’s abundantly clear to you after your meeting w/ Drs. C & Tobias whether Lo or Tobias is best for your situation. The final decisions can be the hardest to make. Please let us know what you decide & what factors helped you make your decision.
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Thank you for letting us know, it’s good he has a flexible approach with surgery! I hope you do feel confident with whichever doctor you opt for alongside Dr C!
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@Isaiah_40_31 @Jules Hey guys just to update, I met with Dr. Tobias & felt he really understood my situation, maybe more so than anyone else I’ve seen, bar Dr. Hui. Going to go with him & Dr. C unless something major changes. Really liked Dr. Tobias’ explanation for his role in the surgery & how he does his intra-operative evaluations & decisions.
I did see Kjetil Larsen while I’m waiting to schedule & he pointed some stuff out in my scans, saying I had brain swelling all the way back to my first MRI in 2019, which was real interesting. He admittedly said he was perplexed about my situation & asked if I could get fundus pictures, a doppler ultrasound, & upright MRI with flexion/extension. Going to try to knock those out while waiting to schedule with Dr. C’s team.
Although everyone (including Dr. Hui) have been a bit stumped when reviewing my story, they all have seemed to fall on IJV decompression as the only logical step forward. That does help out the confidence in decision making because it’s hard hearing people say they have no real idea if this procedure will help or not. Will keep yall posted!
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Thank you for your update, @dreamliner. Forward progress for you, for sure! I’m so glad that you’ve gotten clarity re: whom to see for surgery & have gotten some consistent answers to reassure you that you’re making the right decision about surgery being your best next step.
I’m glad you’ve pursued an opinion from Kjetil Larsen. It sounds like he’s really interested in your case. I hope you’re able to get the scans he wants ASAP. Please let us know what else he says after he sees them. I also hope you can get on Dr. C’s surgery schedule w/ Dr. Tobias soon.
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I’m glad that you found Dr Tobias helpful & are as confident as you can be with your decision! Interesting what Kjetil Larsen has seen, would be good to hear what he thinks if you get more imaging done. And let us know too when you have a surgery date 
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@Isaiah_40_31 @Jules Just a quick update…had a surgery date with Dr. C but am likely pushing it out in order to have a consult with Dr. Nakaji in less than two weeks. He called me just over 24 hours after submitting an online appointment request which I thought was very impressive, & said I fit the exact profile that he believes he can help.
One of my biggest concerns was scar tissue development & subsequent recompression of the IJV by said scar tissue. It seems that in the people I’ve talked to (Dr. Lo, Dr. C, Dr. Tobias, Dr. Nakaji), only Dr. C seemed overly concerned with scarring given my history of large scar tissue generation (both internally & on the surface). I’ve looked through the forum some relating to recompression from scar tissue, but am not getting the most complete picture on it. Just off the top of your heads, do you guys remember a theme of recompression from scar tissue in this group, or does that seem to be mostly a non-issue? We have discussed Dr. C’s scar management techniques before but I’m wondering if I can handle the procedure with things like steroids & local inflammation management if I could have it done by someone else, especially with the good track record I’ve been seeing from Dr. Nakaji’s patients
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We have a few members who’ve had recompression due to scar tissue but the number is very minimal as far as I know. Dr. Hepworth now uses a wrap of sheep gut (or something like that) around the IJV or creates a barrier of some sort to help prevent re-strangulation by scar tissue during healing for those who are prone to it. It seems to be a successful effort. I don’t know what other doctors do.
I recall @TheDude had a problem w/ scar tissue strangling his IJV after a styloidectomy w/o IJV decompression. Dr. Hepworth did his decompression surgery & used that technique which has helped his IJV stay open since decompression. Your scar concerns are certainly worth addressing in your consult w/ Dr. Nakaji, & having his opinion before going ahead w/ surgery is a very good idea. Have you read the recent post by @aluminum about his surgery w/ Dr. Nakaji? Here’s the link in case you haven’t:
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Can’t add anything to @Isaiah_40_31 's info, she’s covered it…let us know how you get on with Dr Nakaji if you have an appointment with him!
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@Jules @Isaiah_40_31 Was able to meet with Dr. Nakaji on very short notice, and was pretty impressed with his office staff/setup, plus he even called a few days later to see if I had any follow-up questions. However he (as with Dr. Lo & others) didn’t believe much could be done to help limit scar tissue overgrowth, which unfortunately didn’t sit the best with me. Going to stuck with Dr. Costantino & Tobias, & am still scheduled for surgery with them in a week & a half. I think Dr. Nakaji would be a great option for those who are a bit more straightforward, as he reiterated that he does tend to be more selective in his surgery recommendations. So thumbs up from me, just not the best fit for my situation
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Im really glad you got a second opinion @dreamliner. It was obviously helpful in confirming your best choice of surgeons to do your surgery. The next 1.5 weeks will both feel slow & will seem to
ZOOM by. I will be praying for you & Drs. C & T.
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Thanks a lot @Isaiah_40_31 , funny enough I just told my mom the same about the time earlier today 
funny how it feels like time is standing still yet it feels like I have no time at all to prepare! Will keep you guys posted on everything post-op!
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I’m glad that you feel confident with your choice of surgeon now, & will pray for a successful outcome! Lots of info on here about what to get ready for surgery recovery if you’ve not already read up… 
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