Have you decided to do the second side with Dr C or are looking at alternative surgeons? I ask because I had some compressions missed on my last surgery (not by Dr. C) and am scheduled for surgery with him Dec 23rd.
Would you also mind telling me about the post op appt at his office after your surgery? Did he remove stitches or anything at that point or was it more ok incision looks good safe travels talk to ya in a few months ha?
Hi @maryscooter. I have not decided to do the second side yet & hope I do not have to. Dr. C said that we could monitor things and see what happens in terms of symptoms. He said that I should just keep in touch with him & let him know if Iām seeing any worsening of symptoms. I had a follow up CT in Sept, which he said looks OK from what he can tell; however, the imaging center didnāt do the scan as he wanted them to. He wants a repeat scan in 3-6 months just to check things out again. My 1st follow up appointment was about 4 days after surgery while I was still in NY & was to check out the incision, swelling, & see how things were going in general. The sutures were the dissolvable kind so nothing needed to be done about that. I had another follow up about 2 weeks later via telehealth where he & Dr. Tobias looked at the incision and discussed progress/symptoms with me. I also had a neuro-ophthalmological exam done prior to surgery & about 6 weeks after surgery to assess for papilledema which can indicate intracranial hypertension (which I had before surgery). I feel that Dr. C & Dr. Tobias are very competent and know what they are doing. They go into surgery with a plan but are also able to assess things in real time and make adjustments as needed during the surgery as in my case. If I have to have surgery again, I would be comfortable having them do the second side. Unfortunately my insurance company just sent us a letter that stated that Stamford Hospital would be considered out of network for me; however, I would try to get all of that approved again somehow. It also may be that I would be able to have the surgery in the other hospital that they use. I hope this answers your questions. Please feel free to contact me if you have any others. I hope that everything goes well with your surgery on 12/23 & will keep you in my prayers. It would be a great gift to have a successful surgery!
Thank you SO much for responding and going above and beyond in the information you provided. I really hope you do not have to have the 2nd side either but if you do definitely reach out to me. Not sure what insurance you have but mine (Anthem Blue Cross) considered Stamford Hospital out of network and after hell dealing with his office I got them to switch it to Northern Westchester Hospital, which is all in network. I can let you know how that hospital is after the 23rd 
and fill ya in on insurance stuff that might help you if you do need to go back - which wonāt happen - sending positive vibes out into the ether that you will not need the other side done!
The information about the post op is very helpful! With the holidays I donāt know if it will work out to see him in person for the post op and it sounds like that is definitely not the end of the world. I was really second guessing my surgery with him based off of my experience with his staff but your comment made me feel really good in moving forward; especially being that this will be the 3rd surgery on my right.
Thank you again!
@maryscooter - Iām sorry youāre facing yet another surgery but am glad youāre seeing a surgeon who will take care of what was missed the first time around. Iām glad @vapās experience with Dr. C is another confirmation that youāve made the right choice in whom to see this go around. 
@Jules So this wasnāt exactly the update I was expecting to give!
Dr. Lo was fervently against using mitomycin-c & insinuated it was borderline negligence to use it intra-operatively. Considering him & Dr. C were supposed to be my surgery team, Iām not exactly sure who to believe now. I did inquire with Dr. Hui to see if he had any opinions, & am waiting to hear back. I definitely do not want to deal with re-compression, however Dr. Loās very strong reaction is having me re-think my stance on Dr. Cās plan.
Thatās very interesting, @dreamliner, but frustrating for you. It seems Dr. C used to do more surgeries together w/ Dr. Lo but now heās doing more w/ Dr. Tobias. I wonder if Dr. C & Dr. Lo have had a bit of a āparting of the waysā over things like using mitomycin-c? Dr. Hepworth has been known to wrap sheep intestine around the IJV once itās decompressed as itās slippery & helps keep other soft tissues from being able to adhere to it & cause re-compression. I guess it sort of reinforces the IJVās walls, too.
Did Dr. Lo say why he felt using mitomycin-c was a bad idea?
Wow thatās not something I wanted to see 2 weeks from flying to NY for surgery with Dr C. That was actually something I thought was a positive thing. Would love to know what Dr Hui tells you as well. So confusing when weāre told one thing and turn around and are being told the exact opposite by another Dr!
Oh no, thatās frustrating! I hope that you hear back from Dr Hui with his opinion, is there time & are you able to discuss this with Dr C? Is it for itās antibiotic properties itās being used for? I just had a quick google as Iāve not heard of it, but seems itās chemotherapy drug too, maybe itās the side effects heās concerned about ?
@Isaiah_40_31 Interestingly enough, this seemed to be the first time Dr. Lo has even heard of Dr. Costantino using mitomycin-c. Seemed a bit weird to me considering how often they work together. Dr. Lo also seemed to be annoyed that I was inquiring so much about its usage, & stated that I wasnāt grasping the severity of it. His main gripe was the neurotoxicity factor, & how it could impact nearby structures such as the IJV vein wall integrity & functionality of nearby nerves. He also told me I was over-analyzing by asking about atlas placement/straightening of the neck, even though that was the first time Iāve questioned it.
Iām not sure how confident Iād be with Dr. Lo if Dr. Hui didnāt advise me to go do the surgery with him opposed to other options. Dr. Lo thinks a combination of steroids/cromolyn (for MCAS response) would be sufficient, while Dr. C thinks Iāll be back in his office with re-compression from scar tissue in three months if donāt use a more aggressive plan.
@maryscooter Totally can understand that, although to be fair, Dr. Lo didnāt even want to do this surgery in the first placeā¦he had to be convinced by Dr. Hui & Dr. Patsalides. He is very conservative, which I can appreciate, but seems to not want to do anything that isnāt extremley well-vetted. Given Dr. Cās military background, I would be inclined to say that he thinks more outside the box. Dr. Lo also incorrectly claimed that mitomycin-c is only used topically & post-operatively, leading me to question how much he actually knows about its use in this case. Dr. C also has said that he has used it without problem, albeit who knows the long-term impact of it given these surgeries are relatively new.
Will update you both if I hear from Dr. Hui!
@Jules Exactly yes, I think itās the side effects, as it can have neurotoxic effects. I had a long back & forth with chatgpt about it & it seems both doctors are correctā¦in a way. Although it did agree that mitomycin-c usage in that particular area of the body is increasingly risky, it said it could be done reasonably safely with an extremely experienced surgeon.
I believe Dr. C wants to use it as an anti-fibroblast agent, which it has documented use for. Dr. Lo argued that while I have had extremely extensive scarring before, this approach is anterior neck & therefore should generate much less scar tissue. Dr. C took one look at the hypertrophic/keloid scar on the back of my head from multiple Chiari surgeries & said he was extremely worried about scar tissue formation & was glad he was informed as he believes steroids would barely make a dent.
Well, Dr Cās explanation does sound genuine, albeit that nobody knows the long term impact of thisā¦and if you think that Dr Lo does err on the side of caution 
I guess you might get an opinion from Dr Hui, otherwise itās best to weigh up the pros & cons yourself, itās so hard with any surgery, without adding slightly āexperimentalā techniques, but then some regard the C1 shaving as probably experimental 
And itās a one-off ,not like treatment longer term?
It really is, and you put it perfectly at the end. Dr. Loās stated āthis is already experimental, we canāt be doing something even more experimental & off-label.ā We also stated he didnāt even think he could get the drug to use at Northwellā¦so not the easiest choice. It also isnāt easy to find info on him directing procedures opposed to Dr. C directing them. Dr. Lo tends to talk about how risky this all is while Dr. C seems more confident in surgical outcomes which further clouds things. Almost nice to only have one option on things cause this is mentally taxing!
@dreamliner - Do you know if thereās a reason Dr. Hui specifically suggested the Dr. Lo/ Dr. Costantino combo vs. Dr. C/ Dr. Tobias team? Maybe worth asking him. It would be interesting to get Dr. Tobiasā take on the mitomycin-c, too, since he frequently operates w/ Dr. C, but then that might add a 3rd opinion which would really muddy the mix!
@Isaiah_40_31 Thatās a very good question, he only told me āGo with Dr. Lo,ā I believe just as general advice. He jokingly told me that was his inside opinion regarding all of the surgeons who perform this & not to spread it around so oops 
I also asked my doctor from Johns Hopkins who initially referred me up to Dr. Lo for another opinion. Iām also a bit worried about the Dr. Lo/Costantino crew with how fervently Dr. Lo criticized Dr. Cās plan. Donāt think it would be the biggest issue in the world but not ideal obviously.
I meant to comment on this statement. There are doctors who donāt like it when patients seem to grasp more about their own situations or bodies than the doctors do so they get defensive like that. You may have been speaking into an area where Dr. Lo is either uncomfortable w/ what he doesnāt know or that he perceives is too complex for you to understand even though youāve demonstrated good comprehension of topics regarding your body because of what youāve already been through. He may not be familiar with the issues a cervical spine w/o a lordotic curve can cause which would bring an abrupt end to your discussion for sure. There are quite a few doctors who donāt consider the potential relationship between ES symptoms & lack of cervical lordosis, & in my experience, radiologists rarely if ever note it when diagnosing ES.
@Isaiah_40_31 Thatās a very insightful point. I find it a bit hard not to view things emotionally in discussions, especially when Iām also frustrated with how things are doing. Itās definitely important to review how things went because as you said, it could have stemmed from something different than just pure āannoyance.ā
I also think Telehealth appointments can be a bit hard depending on the physician you are seeing. Some of them are the same person on camera vs in person, & some people are very different. Just another aspect to consider in all of this of course
I totally agree!! Well stated.
@maryscooter Had you been able to talk to Dr. C about the mitomycin-c or were you planning on bringing it up closer to the surgery date? I was doing some reading & it seems the main risks stem from improper application or time of use, both of which I donāt believe Dr. C would do. I know Dr. Lo was concerned about neurotoxicity but I canāt find that as a common complication if used correctly.
First off your posts have been SO helpful! Responding to both of your comments here From everything Iāve understood and experienced myself with Dr. Patsalides the fact that he says you need surgery is a good sign - Dr. Patsalides seems to be very conservative maybe more than Dr. Lo from what it sounds like. Dr. C didnāt even bring up mitomycin-c to me during any of my appts with him but expressed a lot of concerns with scar tissue build up especially because this will be my 3rd surgery on the right side. After your first comment about Dr. Lo being concerned with mitomycin-c I did way too much googling and I couldnāt find anything that had me super concerned. Iām just glad that Dr. C does something to help ensure scar tissue canāt cause issues post surgery but I donāt think heās done much follow up with patients on if this actually causes more issues.
I can let you know what he says if all works out and I am sitting in front of him and Dr. Tobias for my pre-op on December 19th. I would be really interested in hearing Dr. Huiās take on it.
100% agree with Dr. Patsalides, he seems to only want to suggest the people heās almost certain it will help! Grateful to have someone else in my same arena (although wish it was for something different than scar tissue! hah), so I do appreciate you looking into it as well.
Dr. Loās message seemed to be: āwell others havenāt scarred much so you should be fine.ā Unfortunately we are all so different & coming from various prior surgeries, so I think the notion of āitās worked so it should work for youā is being applied a little haphazardly.
An interesting note about Dr. C:
āDr. Costantino has been selected by Castle-Connolly as one of the nationās top doctors within his specialty (Otolaryngology and Oncology), and in the field of Oncology every year for nearly 20 years. Dr. Costantino holds multiple patents and has been responsible for inventing or developing a number of biomaterials. He has served on the Board of Directors of LifeCell while listed on the NASDAQ (LIFC), and as a consultant to multiple corporations primarily in the field of biomaterials. He founded OsteoGenics which was eventually acquired by Stryker, Biomerix Corporation (recently acquired by Edwards), and Parallax Medical (acquired by Arthrocare).ā
That honestly gives me a good bit of confidence in his use of mitomycin-c, as I think he really understands bioapplication more than the usual head/neck surgeon, especially as he operates as an oncology surgeon, & in my opinion would know the correct usage of a chemo drug like mitomycin-c.
Also that would be great if you wouldnāt mind keeping me posted, Iām going to be in a waiting pattern for a bit anyways. I can let you know what Dr. Hui says as well if I hear back (it seems to be tricky to get him to answer things but Iām going to keep calling if needed).