I cannot believe that I am finally going to have my surgery! It has been a very long road to get here, but I am here and I am beyond excited! I had a pre-op consult with Dr. C. on Thursday, and he is usually very conservative with his estimation of how much relief I will experience from this initial surgery. But, upon review of my venogram, he said he feels confident that my quality of life will improve significantly. I will take it!
We will be starting with the left side and will likely need to do the right at a later date. I am hoping that my IJV is receptive to being freed up and takes some or all of the flow off the collateral veins and that stenting is not necessary at a later time. I am just so excited! I had some hurdles to get over and had to jump through hoops to get my pre-surgical screening. Got a call on Tuesday that it needed to be done by noon Friday. I have some additional health issues that require additional clearance so I was lucky to be able to get last minute appointments with everyone I needed to. I had been asking for weeks for the list of info they needed. Needless to say, his office is a hot mess right now, but he is working on getting that situation resolved. I am not going to bash his support staff here, but for anyone who is frustrated with the situation there, know that it is being addressed. He basically lost his right hand gal and has hired a replacement who will starting in a week or so. Other people have been stepping in lately and the coordination and communication has definitely not been smooth.
But, here we are! Monday cannot come soon enough. I will be having surgery with Dr. C, and Dr. Tobias at Stamford Hospital. I had some reservations about such a small hospital, but my sister is in healthcare and did some digging. She said it is a state of the art facility and all of the patients she dealt with had nothing but great things to say. So, my confidence is high that everything will be just fine there and I will receive top-notch care. I am also glad it is not a teaching hospital so I won’t have a slew of students in the mix. I love being able to contribute to furthering medical education but this is something that I have waited a long time for. I want the doctors full attention. There is so little understanding of this condition and the frustration of feeling dismissed by doctors makes this a very personal journey. I am so thankful that I found people who understand what this journey is like-from symptoms, to frustrating doctor visits, to family and others who just cannot understand what we are going through. I am just so joyful to have found answers and doctors who hear me. I am on the path to getting my life back, and I know it will still take time and my journey back is just beginning, but I AM ON MY WAY! I thank you all for the support and all of the information to help navigate this crazy affliction! May we all find healing!
I’m so glad everything is going as scheduled, @Mjrmunch! We’ll be awaiting a post op post from you when you feel up to sharing an update. I have your surgery date on my calendar & will be praying for you! I’m hoping for all to go perfectly.
So pleased for you, hope all goes well! Will be praying for you and look forward to hearing how it’s gone when you’re up to it
I was under the impression- he was out for another 2 weeks. Did he order the venogram for you?
He is definitely back. I had a virtual visit with him last Thursday and he was in the office. I am having surgery tomorrow.
No, he did not order the venogram for me. I had already had that set up with Dr. Patsalides on my own. It actually took me much longer to get an appointment with Dr. P then with Dr. Costantino. At the time when I was seeking advice from Dr. P I had not yet discovered this site and learned about ES. The timing of my scheduled venogram pretty much worked out perfectly, though with my consultation with Dr. Costantino.
I saw him during the Summer. He did not order really any additional tests that’s why I asked about the venogram. Hepworth ordered mine and I saw Patsalides. I have since learned, the venogram is the best tests to know if surgery will work. I wonder why, he doesn’t order it? Dr. Patsalides doesn’t think a lot of these surgeries and think many don’t work. I’m trying to avoid any unnecessary additional surgeries or complications. I do not have ES, but vascular outflow obstruction. My issue is C1. I will be seeing Dr. Lo shortly. I don’t think Dr. Tobias has enough experience with EDS/C1 patients. How was your venogram???
I believe everyone’s case has its own characteristics. In my case, I have both Classic ES and VES. My venogram showed severe stenosis of both right and left IJV with complete occlusion of the left. I also have severe pressure gradients between C1 and C4 on both sides. Dr.P. was unable to do the balloon test because he could not get into the IJV. He tried to enter the left side by going in through the right and could not gain access. There was not enough room in the right IJV to deploy the balloons either. He said I have to get my super long styloids removed before he could determine if stenting would be necessary or advisable. He believes that the styloids and calcified ligaments have completely pinched off the left IJV and significantly cut off flow in the right. My pulsatile tinnitus is on the left and so we are starting there. If your styloids are not causing your venous outflow obstruction, I can see why he would say that this surgery would not be helpful for you. In my case, my styloids are causing a whole host of problems. Dr. Lo is a very respected surgeon and had I not already met with Dr. Costantino right before my appointment with Dr. P, I probably would have ended up consulting with him. If he determines that you would need a styloidectomy, it is very possible that he would team up with Dr. Costantino as they are a frequent pairing for that procedure. I hope you find your answers, because I am so relieved to have finally found mine. It has been a very long journey, and I am finally seeing a light at the end of my tunnel.
Congrats on making it this far! Hope you have a wonderful response )).
@Mjrmunch Can I ask you (to confirm), did you see Dr Constantino this past Thursday in White Plains?
I had an appointment for Thursday, I arrived on time for my 1pm appointment from 4.5 hours away, only to be told he was out of the office, he’d had orthopedic surgery and wasn’t feeling well, he’ll be back 12/8. I left without further word. They never called or emailed. I spent 9 hours round trip in a car for absolutely nothing. 2 of those hours unconscious again ironically.
I am sooo sorry that happened to you, @Brisbanite! I can only imagine how frustrating & disappointing that must have been.
Dr. Costantino’s office has been terrible w/ communication over the last couple of months due to staffing changes, & I guess also due to his pending surgery. Since that has taken place, we’ve heard there will be new staff in the office which hopefully will repair the communication rift so communications will get better soon. If you choose to go back to his office, I highly recommend calling the day before & maybe the day of your appt. to make sure he’ll be there.
@Mjrmunch’s appt. was via TeleMed or whatever version of video call Dr. Costantino uses.
Thanks @Isaiah_40_31 Is there some sort of orthopedic surgery he’s had or is supposed to? I will not return. I’m not going to proceed at all. I’ve had more than I can take. I’ve had 3 doctors recently cancel my various appointments because (looking at my complaints/history or results) they didn’t feel like they could be of help, so canceled since they are understaffed, but at least they called, even if they didn’t actually have a full history. My husband is out of vacation time to bring me anywhere else on top of it all, this was an unpaid day to see Constantino.
I’m very sorry to hear that @Brisbanite. I’m sure there is a doctor who can help you, it’s just a matter of finding who that is. Have you tried Dr. Patsalides or Dr. Fargen? (I’m sorry I’ve forgotten). Both deal with very extreme cases.
Do you have any other appointments pending or was Dr. C your last? Dr. Hepworth is far away from you but he’s amazing at looking “outside the box” for causes & solutions. He is taking new patients if they’re referred from Dr. Fargen (NC) or Dr. Hui (HI). I understand these locations are an insurmountable distance for you to travel, but if at some point, your husband is able to go with you, Dr. Fargen would be worth seeing.
Wow, I am so sorry to hear that! Yes, my appointment with him was on Thursday but it was a TeleMed appointment. I was under the impression he was in the office but I cannot guarantee that I had an issue on the 16th when I drove over an hour to an appointment that magically disappeared just before I checked in, the appointment was with Dr. C and Dr. Tobias. I was told Dr. C was not in the office but Dr. Tobias was present so he agreed to see me. I have no idea what happened to the appointment that was scheduled because it had been confirmed the day before , I have no clue what is going on in that office but he is getting a new right hand person that starts in approximately a week. He seemed to be genuinely frustrated with how things have been handled through this transitional period. So I guess I should say I believe I am having surgery at 7:30 tomorrow morning. I am hopeful because it’s being handled by the hospital and not by his office staff but this is going to actually occur lol… I am sorry that you drove all that way, because I would have absolutely lost it and probably would’ve been escorted out! I hope that you are able to continue on and find somebody who can help you. Dr. Patsalides office runs wonderfully.
@Brisbanite - I don’t know how much you read on our forum, but @akc has given a ringing endorsement for Dr. Fargen in this post from today:
No, Constantino was my 2nd, but the 1st that was supposed to have experience with the jugular side of things, which, given my history is my most worrisome side of things… I hadn’t heard of Dr. Patsalides, does he look at the Jugular vein and if it’s involved? We could go in the new year. I know my AVN surgeon left Northwell Health in large part because he couldn’t change his office staff, but as bad as they were they certainly never pulled something like what happened with Constantino, since that surgeon recommended Constantino, I’ll certainly let him know what’s happened. That surgeon is my referring doctor.
@Mjrmunch That’s interesting, they had offered to book me in with him, in the office on the 16th! What are we? Twins?? What an interesting coincidence (in a very odd way!), so you also got in there to find out you had no appointment? I literally looked at the scheduler like she was crazy while I was rather stunned & trying to wake up from being passed out. When she said she’d called to cancel Thursday, I straight out called her a liar (no yelling, my head hurt). There was no way in hell that happened. I felt horrible for my poor husband… I’m actually surprised he didn’t say anything… Equally I think he was stunned… Who’s Dr Tobias? We were given no options, no real apology, it was like we had driven around the block… Good luck tomorrow, I really hope your surgery moves forward. Which hospital is it at?
As a complicating factor for me, traveling by plane for any care is out of the question, the Avascular necrosis I have in one leg is a big problem and neither knee bends sufficiently to stay on an aircraft for long. How life has changed. The furthest I go is Baltimore (my husband drives) on rare occasion & only because nobody else sees multi focal AVN patients, so I had a real hope that maybe NY would work out in some way…
So sorry that you had such a wasted trip, I really hope that you can get somewhere with another doctor in the new year
WOOHOO! I am so excited for you, and a little jealous. My surgery was scheduled with Dr C for December 22 and my insurance has blocked me from having surgery. So sad, I’m frustrated. They want me to go to an inexperienced Dr that doesn’t realize the complexity eagles can be. Wishing you all the best. Sending good thoughts -hoping for an easy surgery and a speedy recovery with full symptoms resolution
Dr. Patsalides is in NY - https://www.athospatsalidesmd.com. We have had members who have been diagnosed w/ IJV compression by him. He does venograms & vascular pressure readings that help with diagnosis. Here’s a quote from one member of several who was helped to a diagnosis by him.
In this post: https://forum.livingwitheagle.org/t/venogram-imaging/14789/4 @Brandy argues in favor of a venogram as the best diagnostic tool for determining whether or not IJV decompression surgery will be successful. A venogram is also a good starting point for vascular compression diagnosis. Dr. Patsalides does venograms so would be a good resource for you.
Here’s a link to a YouTube video featuring Dr. Patsalides which @vdm posted awhile ago regarding pulsatile tinnitus which is a common symptom of IJV compression:
Dr. Lo & Dr. Tobias are both neurosurgeons who work with Dr. Costantino but also independent of him. Dr. Lo in particular has diagnosed IJV compression in several of our members:
Dr. Tobias: Michael Tobias, MD
Thank you!
You are welcome! I hope one of these doctors is able to help you!