I was able to see Dr. Constantino on Thursday in NYC. I talked for about 5 mins and he just listened and I was afraid of being dismissed like so many other doctors have…but I came prepared! I handed him a print out of the pics I uploaded to this site from my 3D cat scan and he lit up like a kid and say " You’ve got big ass styloids…that’s a medical term. Possibly the biggest I’ve ever seen" Then I gave him the report and CD. lol
At that moment I could feel the tension drain from my shoulders and I started to laugh too and the rest of the consult went well. He’s ordering a CTV venogram with 3d reconstruction to look for Jugular outflow syndrome or jugular compression. He also looked at my ear and made some comments about the swimmers ear I’ve been getting, but can’t remember what he said, but that the CTV will show what he needs.
I am so grateful for the people on this formum and the forum itself. You have no idea. I was diagnosed in 2023 and could not find anyone who even knew what it was. (My depression was getting almost too strong to bear over the last 2 years…very hopeless. I did not sleep the night before the consult because I was so stressed with what if scenarios and panic about another dismissal.) But within what like 2 or 3 weeks of joining here I have a consult with a competent expert and acutally have a path…there is no way I would have found him on my own. Thank you all for your work here! You know that cliche about “If it saves 1 person…its worth it…yada yada yada?” Well I am that person! (and I know there are many more you help) Feels really good to know there are people who care enough to share their own personal experiences and stories to help other people…espeically in the age of the internet. All the tech is useless without the people behind it…so Thank You!
I also see that I got the new member of the month award and that made my day! Reminds me of when I was a kid and one of us got sick with a fever, I have 5 siblings, mom would give us red underwear and T shrit to wear until the fever broke…always felt special - sorry if TMI! lol.
Some of the questions I will ask on follow up are about the Hyoid Bone Syndrome, which I forgot to do during the visit because I was so nervous and then excited when I realized the doctor knew what I had and wasn’t just going to give a useless refferal - has happend way to
often in my medical career so to speak. Is there anything else I should ask about like tips or pointers? I plan on reading over some posts on the operation and best practices (like removing to the base of skull and rounding edges of the remaining bone, etc) to ask about on my follow up. Dr. Constantino actually knows Dr. Henderson, told me to say HI for him when I have my consult down in Maryland - so not sure about any surgery dates yet.
I am just glad that I can help myself and of course have been only able to do so thanks to all you guys…Love and Thanks from NJ!
I did get to surface the top of the table I was working on with the CNC machine, and included a picture for Isiah and anyone else interested. I kept 1 side live edge and boxed out the rest in black epoxy.
I’m SO GLAD your consult w/ Dr. Costantino went very well, @Disabled_Inventor! What a relief for you! You had a good plan (bringing your printed out 3D images) & it worked. It’s also nice that he acknowledged how HUGE your styloids are. You now have a claim to fame in his practice!! (Not that you would have chosen that course to fame ) For the future, many doctors will let you record your appt. using the voice recording app on your phone. Being able to play back after the appt. what was said during the appt. can be very helpful. Consider asking Dr. Henderson if you can record your consult with him. You can always claim you have a hard time remembering (that’s my problem anyway) & being able to review what was said will be helpful.
We’re very happy you found us & have gotten the answer, support & resources you need to proceed in recovering from at least some of your symptoms. I hope your CTV makes it clear what, besides your styloids, needs to be dealt with so you can have as complete a recovery as possible.
I loved the red undies & T-shirt story from your childhood. Not TMI. Your mom was a smart woman especially having to keep track of 5 kiddos. She could tell who was under the weather at a glance since kids don’t always act sick when they are.
How many ES surgeries have they done and what was the success rate?
Whether they’re going to operate externally, or intraoral- through the mouth. Whilst some members have had successful surgeries with intraoral, external is better for seeing all the structures, to be able to remove more of the styloids, & also there’s less chance of infection.
You need to ask how much of the styloid he’ll remove- as much as possible is best- & anything left needs to be smoothed off. The piece needs to be removed too- some doctors have snapped it off & left it in! If the styloid is only shortened a bit it can still cause symptoms.
If your stylohyoid ligaments are calcified, then any calcified section needs to be removed too.
There’s usually swelling after surgery; you could ask if a drain’s put in to reduce swelling, or if steroids are prescribed. It’s not essential, but can help with recovery a bit.
Will it be a day case surgery or will you need to stay in?
Obviously ask the risks- we know from experience on here that temporary damage to the facial nerve is quite common, and also the hypoglossal nerve and the accessory nerve. These usually recovery very quickly but in some cases members have needed physiotherapy. There is also the risk of catching a blood vessel or having a stroke, but these are very rare.
Ask if the surgeon monitors the nerves- this should be done to see if there’s stress on the nerves to avoid damage as mentioned above.
What painkillers will be prescribed afterwards.
Ask about recovery- most doctors either down play it or are genuinely unaware of how long the recovery can take!
Since Dr. Costantino is very experienced w/ ES/vES surgeries, you can just pick the ones you specifically want to know but don’t need to ask him all of them.
The table looks great so far! What kind of wood are you using (I don’t know wood types unless they’re still on the tree, ) I look forward to seeing the table progression as you work on it.
So pleased for you that the appointment went well & your huge styloids are acknowledged! I think @Isaiah_40_31’s idea of recording appointments is a good one; since many of us with IJV compression have brain fog, it should be a good reason!
I would never have found out about the doctor I had surgery with if it weren’t for the site, so I am very grateful to BF’s too!
Nice you have a happy memory of being poorly as a child…I was never allowed to be poorly, Mum wouldn’t have it, & there were only 3 of us
Table is looking good so far
Its funny you say that about my mom…you’re probably right she was color coding us to keep track of who was sick…but I always felt like a super hero in red lol.
The wood is black walnut, I don’t know when I’ll be able to work on it again, but plan to sand it and put a nice oil finish on it with some steel legs.
I saw Dr. Henderson as well. I just had surgery with Hepworth. I had consulted with Costantino. Are you planning on getting other opinions other than Costantino?
Dr. Costantino keeps on referring out to Dr. Jenkins for CCI. I do not know why. Henderson is def more experienced.
I am also going to get a consult with Dr. Cognetti in Philly for the eagles. I think its always best to get a second opinion for a complex issue like Eagles.
Same for the CCI… I am still waiting on Henderson’s office to schedule the initial consult. They said for people with my insurance they are scheduling for June/July. If there is another doctor that knows about CCI I will try to get a consult with them…Constantino didn’t mention Dr. Jenkins when I met with him but I’ll ask him about it in my next visit.
It does look like Dr. Henderson is the god father of CCI and his papers have been very informative. I have a phobia of not getting help for the CCI and am guarding my excitement about finally getting to see Dr. Henderson and have a through workup to see how bad it is and if there is anything that can relieve it. I don’t have a formal CCI diagnosis yet and still am waiting on a flexion/extension MRI. Hopefully that will show everything clearly and some treatment options will be available that can resolve the issue…even though I know they can be extreme.
) For the future, many doctors will let you record your appt. using the voice recording app on your phone. Being able to play back after the appt. what was said during the appt. can be very helpful. Consider asking Dr. Henderson if you can record your consult with him. You can always claim you have a hard time remembering (that’s my problem anyway) & being able to review what was said will be helpful.
) I look forward to seeing the table progression as you work on it.
