Hello,
I hope you are doing well. Did you ever have surgery with Dr. Costantino and Dr. Tobias?
I am susceptible to scar tissue too and will need a revision surgery. Did the mitomycin C help with that issue for you in your post op imaging?
I am thinking of asking about that drug and was wondering how it worked out. Did he do anything else for scar tissue?
@IJVHelp Hi sorry for the delay! Am actually just recovering from my other side surgery with Dr. C.
I did mean to amend this actually: Dr. C does not use that substance anymore (to my knowledge) in surgery. I decided to proceed with him anyway and my three month post op scan showed no compression from any kind of structure (bony or soft tissue). I know he is very precise in his techniques and Iām assuming that alone leads to a decrease in scar tissue production as he & Dr. Tobias have become very efficient in how they carry out these surgeries.
I canāt speak directly to revisions but it is certainly something Iād recommend talking to them about if you are able. Iāve been through two procedures with them & I have absolute full confidence in their abilities in and out of the operating room. Would not hesitate to go with them again
How are you doing after your second surgery? Iāve been praying for you, and hope itās successful? 
@dreamliner - So great to know youāre done w/ your second surgery. Now the complete healing can begin in greater earnest. I hope your pain level is low & your symptoms begin fleeing the scene bit by bit so you can start enjoying your life again. Please let us know how youāre doing!
Sure hope youāre able to enjoy Christmas & that 2026 is a year of recovery & fun, healthy activity for you. 
Thank you for the clarification! It sounds like you had a really positive experience with Dr. C and Dr. Tobias, especially with your post-op results. Itās great to hear that their precision and efficiency are making a noticeable difference in recovery, particularly when it comes to minimizing scar tissue.
Youāre also spot-on about the importance of discussing revisions directly with the doctors. Itās always helpful to have those conversations to make sure all options are on the table. I really appreciate you sharing your confidence in their abilities; it definitely reassures anyone considering their care.
Thanks again for the helpful insight!
Thanks a lot @Jules & @Isaiah_40_31 , Iām about three weeks out right now! My nervous system seems to be much more activated this time around (much higher average 24-hour RHR than in previous surgeries), so that is a bit tough. Had more pain this time around but am glad to be over that hill. Hopefully can shift more of my focus towards dysautonomia & MCAS treatment ā Iām hoping to try more root-based treatments instead of just symptom management as I have progressively gotten worse over the last handful of years while just trying to keep symptoms at bay. Those things + CFS are my biggest struggles right now but I am glad to have my IJV surgeries behind me.
Thank you for the prayers and hopefully can start to see some improvement in the next few months. Iām hoping I have a relatively similar timeline to last surgery as I know that one pretty well! Dr. C has been a big help with issues that arose prior to surgery & weāe confident that the blood flow we established will hold long-term. Hoping that has been the driver behind the dysautonomia & MCAS and perhaps now I can chase after remission of them both!
@dreamliner, I will certainly keep praying for your body to fully recover from the problems your IJV compressions caused. Please update us periodically so we can cheer for what heals earlier & encourage you during the slower recovery of symptoms that are sticking w/ you more stubbornly.
Youāve had to deal with a lot at a younger age than many of us. It would be great for you to be able to get your life back so you can enjoy it!
Good the surgery is behind you, and good that Dr C has been helpfulā¦I hope that things keep improving for you and that you can shake off the MCAS, CFS & dysautonomia
@dreamliner I wonder how you are managing now after your surgeries? Can you share how your symptoms are going?
Hi @Harry , sorry for the long response time!
Feel free to ask more questions but Iāll try and outline some stuff here:
My average headache pain (mostly all low-pressure-like) has been significantly reduced. I manage things now via Emgality (once a month) & Eletriptan (rarely use) + Tylenol (use maybe 1-3 times/week). The āconstricting neckā feeling that many here describe (especially during high HR episodes) has almost completely vanished for me post-surgery, which has been great.
My brain fog also has gotten better overall, but it is still present at certain times. However, I seem to be able to focus a good bit longer (on a computer or non-computer tasks) without head pain forcing me to stop.
My fatigue has seemed a bit better (on average) but it definitely fluctuates, and can have me feeling pre-surgery levels of fatigue on certain days.
My dysautonomia has seemed to improve very slightly (respective to standing tolerance), but the heat is still absolutely crushing, and I do my absolute best to avoid it. As far as my āMCASā things, they seem to be up in the air, but I am being worked up for separate immune issues so who knows how much of those symptoms are mast cell related.
I am also being worked up for May-Thurner, but the level of compression that I have doesnāt seem to be too contributory, but weāll see.
I still have residual & varying numbness from my ears down both my jawlines as well as under my jawline, but Iāve mostly gotten used to it and have accepted that I probably wonāt regain full feeling on either side. Outside of that, I have no real issues post-op, and absolutely would advise my pre-op self to go ahead with the surgery.
My right side (dominant) remains 100% decompressed, however my left side still has a level of compression due to the C1 āshavingā being a bit more conservative. However I donāt believe this is impacting things much at all and would absolutely recommend Dr. Costantino & Tobias to any one else.
The only thing I would change in the pre-op setting is to ask more about the Vagus nerve, as I didnāt explore that in a whole lot of detail with my surgery team, where as Dr. Nakaji seemed to make a bigger point about it
@dreamliner - Are you at all considering getting your right side decompressed since itās your dominant IJV & could potentially help alleviate some of your remaining symptoms?
@dreamliner Hello and a GIANT thank you for outling where you are at post op. It is incredible to read your story and see how you are now.
Because this seems so āuncertainā and āunknownā we have to do so much research and almost have to second guess ourselves and our specialists. But here you are! I do understand things arenāt ideal, and you have had to sacrifice things like sensation in your jaw and earsā¦ and there is no silver lining to that. What is amazing is you have some improvements. I wonder if the fatigue will only get better with time, well I hope so.
My surgery is next week and I have been to some dark places, but have made peace with it being the right thing to do. And am feeling brave 
@dreamliner , Iām glad that you feel surgery was the right thing to do, and that it has improved some symptoms for you, I hope the remaining ones improve with time too
@Harry I think you have to go along with the idea that surgery is the best chance for you to get better, be prepared to potentially feel worse to start with because of swelling, and be positive with any improvements you do have, itās a journey and wonāt be quick, weāre here for you though