I wanted to pass along that I have a televisit with Dr. Constantino tomorrow. I am not gor sure what to expect. So far, i have had a terrible experience with Dr. Fargen 's office and pretty much given up on them.
They have lied to us several times, and I just dont have time left for that.
I am praying Dr. Constantino is willing to help.
I sent him my CT scan, unfortunately it wasnt a 3D scan, but I am hoping he can gleem enough from the scan which shows my right syloid is 5 CM and my left is 5.7 CM woth both ligaments calcified.
I truly feel like I am at the end of my journey if he isn’t willing to help.
Can anyone share their experience with Dr. Constantino?
I’m so sorry that you’ve had a bad experience with Dr Fargen’s office, sadly it seems to be happening with quite a few of the doctors! I hope that you have a better experience with Dr Costantino, members who have had surgery with him seem to speak well of him- you can use the search function to look up discussions where he’s been mentioned if nobody replies to you…let us know how you get on tomorrow
I’m really sorry for your frustration w/ Dr. Fargen’s ofc, @harrisonboy. I hope your appt w/ Dr. Costantino tomorrow goes better. I will warn you that we’ve had several members who had initial visits with him via telehealth who said it didn’t seem like he’d looked at their imaging before the appt. If it seems that way for you, please firmly ask him to take a look at your imaging during your appt. Don’t just let it go.
Doctors don’t need to see our CTs in 3D. That is more for the patients so they can see what the CT slices all put together look like. Doctors usually evaluate CTs via the slices because they feel it gives them more accurate information.
Please do let us know how your appt. goes. I’ll be praying Dr. C is very helpful for you.
Good morning. Once it was clear that I needed surgery, I consulted with most of the experienced surgeons around the country to find the best fit for me. I had a Zoom visit with Dr. Costantino. He was kind and experienced but it was clear that he hadn’t reviewed any of my imaging prior to the appointment (that’s not at all uncommon just always a little frustrating). He agreed I was a candidate for surgery but it is his protocol to have the neurosurgeon, in my case Dr. Tobias, meet with me and give a second opinion. I had to wait another 6 weeks to meet with Dr. Tobias who sent me for another test to rule something out (which was a waste of time and money) and did ultimately concur with Dr. Costantino. I paid $350 for Costantino and $200 for Tobias. In the end I decided not to use this team because they utilize a specific surgical plan for everyone and it wasn’t clear to me that I would necessarily need all of that (such as removing the posterior digastric and a fasciotomy). I had my first surgery about 6 weeks ago with Dr. Nakaji in Phoenix and indeed I did not need anything done to the digastric or require a fasciotomy. Good luck to you.
@harrisonboy - I am very sorry to hear that your wife has a major health struggle at the same time as yours. If you don’t have vascular ES i.e. symptoms of internal jugular vein or internal carotid artery compression, you can see Dr. Hackman though he has also been able to help those w/ IJV compression caused by the styloid. He will do bilateral surgery so you get it all done at once. His billing office will set up a payment plan to help you pay whatever your insurance doesn’t pay so you won’t have to slap down tons of money up front.
You won’t get a runaround from him, but he does require your first appt be in person so there are travel expenses to consider. SECU is inexpensive housing provided by & local to the hospital Dr. Hackman uses for patients who need to stay for a few days. You can get info about SECU from his ofc or from our forum.
•Dr. Trevor Hackman, UNC Ear, Nose and Throat Oncology Clinic – in the N.C. Cancer Hospital, 101 Manning Drive, Chapel Hill, NC 27514, (984) 974-6484 (Does external or intraoral robotic surgery - removes styloid to skull base & stylohyoid ligament. He’s also a microvascular surgeon). Trained Dr. Patel, who is now doing ES surgeries.
Hi. I’m sorry you’re having such a difficult time trying to find a doctor. I had surgery with Dr. Costantino and Dr. Tobias back in June. My first visit with them was in person & it worked out well because Dr. C was able to pull Dr. Tobias in to the meeting while I was there. So I was able to get both appointments done at the same time. I did also meet with Dr. Hackman In NC before I met with Drs. C and Tobias. After meeting the docs, I knew that I had IJV compression in a couple of areas, so the logical choice for me was to go with Dr. C. I will say that Drs. C and Tobias reviewed my CT images while I was meeting with them and went over everything that they saw that was concerning. It does seem that they have a pretty specific approach, however, because of my various issues, it seems that it was necessary. In fact, once they got in the area during surgery, they actually realized that there was another issue that they had to deal with regarding the compression. Anyway, when I met with Dr. Hackman he said that I could’ve done a telehealth consultation, so if you are thinking about getting an opinion from him, make sure to check with his office to see if he will do that. Just be aware that UNC will charge you to meet with Dr. Hackman & then give you a separate charge for using the clinic room. I didn’t realize that I would be paying just as much to sit in the room as I would for Dr. Hackman’s consultation. It was pretty surprising to receive a separate bill for just sitting in the room. There was no examination that was done. Anyway, my IJV decompressed immediately during surgery; however, there is a chance that it can collapse, so I have another CT scheduled soon to check things out. Feel free to ask me any specific questions. One thing to remember is that these doctors are looking at images all the time & can usually pick things out quite quickly. I say this because I do not think (although I’m not positive) that any of them looked at my images prior to the initial consultation even though I had to send the images ahead of time. However, I do feel that they gave the images the attention they needed to while we were in the meeting. Also, I had a 3D scan but they just used the regular CT scan, so don’t worry about that. They will let you know if they need any further imaging or testing. I felt comfortable that both Dr. C and Dr. Tobias were very skilled surgeons with a desire to help.
@harrisonboy - Dr. Hepworth’s ofc can be difficult to get through to when calling. I recommend calling late morning 11-11:50 or late afternoon i.e. before 4 pm as their phones seem to be less busy then. You still may need to try several times over the day to get through.
If you’re having vascular symptoms i.e. brain fog, visual snow/visual distortion or changes, tinnitus/pulsatile tinnitus, migraines, dizziness, depth perception issues, then vES w/ IJV compression is possible. If your symptoms are more stroke-like - weakness/tingling, numbness of arm or facial muscles on one side, vertigo, fainting, migraines then you could have ICA compression which is more serious than IJV compression. Try sleeping w/ your head elevated at night & ice your neck for 15 min every couple of hours during the day to see if those things help. Many of our members w/ IJV compression have also gotten some symptoms relief by taking a Rx blood thinner.
If you would like to post your scan images, we can take a look at them. We do best with 3D images. You can convert your CT scan into 3D images using either RadiAnt Viewer - https://www.radiantviewer.com for PC or BeeDicomViewer App for Mac BeeDicomViewer - Google Search
I spoke with Dr. Constantino yesterday. He started the conversation off by saying that he had never seen styloids and big as mine on both sides with calcified ligaments.
Additionally, he said he is very comcerned that I also have a spinal CSF leak. This is based on my history and symptoms. He is very worried about touching me. He said if he fixes the eagle, and he believes I have some compressions, that I would go into very low pressure with no way to fix it. I also have been diagnosed with nutcracker syndrome, which complicates everything even more.
He has asked me to wear a q-collar for a week to see if it helps. I have been taking Plavix with no change.
I have to be honest, this seems hopeless. I am so weak, i can barely function, and with all of these issues, there is no way I can survive multiple trip, surgeries and recoveries.
Well, it’s good that he did look at your scans and history, and presumably gave this careful consideration. I appreciate that you want to get this sorted and are feeling grim, but better to do it with the right doctors so you have the best chance possible to get fixed. If Dr C is concerned about surgery, then it might be wiser for you to try & see Dr Hepworth- he is very experienced with vascular ES, CSF leaks & is knowledgeable about Nutcracker…
We’ve had some discussions about the Q collar as he had asked some members to try this before, you could search for those using the search function.
I really feel for you, such a difficult situation, praying the you can find the strength to pursue these issues
@harrisonboy - I agree with @ Jules. Dr. Hepworth is worth pursuing. He is truly remarkable regarding surgeries he’s undertaken & lives he helped improve. I hope you’re able to get through to his office soon. I’m sorry Plavix has been no help.
I will pray for you to have the strength you need to see this through to a positive outcome.
I hope you made a telehealth appt. w/ him in Oct. or did you decide against it? Did the front ofc gal tell you that a real appt wouldn’t be till next year, or are you assuming? I suspect when if you have a telehealth appt w/ him, he may choose to accelerate your care based on your imaging, & Dr. Costantino’s comments. My recommendation is that you start calling the ofc several times a week asking for a cancellation. I’ve known several people who diligently did that & got in well ahead of their scheduled appts - even for surgery.
If/when you see him in person, he will send you for additional testing to check for vascular compression. Initially it’s an ultrasound of your IJVs while you’re in town to see him using a specific protocol, & depending on those results, he may send you further tests. As bad as your situation is, I suspect the ultrasound would show enough.
I am sending my scan to him as soon as I can. She indicated he would look at it in a couple of weeks.
No, she actually told me that they wont schedule any in-person visits until October and it would be around 3 months after that. She said they are getting more than 60 calls per day from desperate people like me and they cant move me up.
I really dont know ho I am going to wait. I am needing to go to the ER nearly every day. The headaches and facial pain are so bad, I am screaming in pain.
Good that you’ve been able to contact Dr Hepworth’s office, but so sorry that you’re in such terrible pain…if you’re able to, could you share with us what pain treatments you’ve tried? Just in case there’s anything we can suggest- I’m sorry if you’ve already posted this
Hi!
I consulted with him along with Annino and Hepworth. My first visit to Costantino was in person. He brought up MS for some strange reason and ordered a new Brain MRI. I do not have MS. He then had me see his personal cardiologist due to my cough and past history of pulmonary sarcoidosis. I have a cardiologist. I obliged and took the train into Manhattan to see his cardiologist. My heart is fine. He seemed quite pleasant at my first appointment. I then returned to see him after my appointment with Dr. Hepworth. He took a turn. He seemed quite miffed that I had seen Hepworth while I shared Dr. Hepworths opinion and additional testing that Hepworth did. I had informed his office prior of my plans to go to Denver and their response was it always helps to get other opinions and share feedback. I felt like I was being chastised and his demeanor was quite honestly, upsetting. At my second appointment he wanted me to send him results of my hearing test and thryoid results. He made numerous off cutting remarks under his breath, shook his head and walked right out without even a handshake or goodbye. I did however, send the requested reports. I followed up after sending and asked what the next step was. No response. I live in Connecticut and felt he was a good option as I did not have to worry about traveling as I have limited help. Bottom line: I am moving forward with Dr. Hepworth. His testing revealed further issues (he uncovered my MALS by ordering correct imaging) and picked up on things that others did not. This was my personal experience with Costantino and I cannot speak of others. I just felt he was no where near as detailed as Hepworth and my last visit with him was quite upsetting.
