Following my catheter veno/angio with Dr. Mehta in AZ (where I live), I had my appointment with Dr. Constantino to discuss my results. Dr. Constantino is a second opinion for me, as I’m being referred to Dr. Nakaji, too. My appointment with him will be on January 29th.
I was very impressed with Dr. Constantino. He had clearly reviewed the images I had uploaded and walked me through my regular CT venogram to show me my compression via styloid and C1. He said I was a surgery candidate and thought I would have a good outcome if I decided to me forward. One thing I was not expecting was him describing some the differences between surgery techniques between docs. When I mentioned if he would shave my C1, he said he didn’t like the term “shave” and it it’s more of removing the nub of the bone to create even more space. He also talked about how he opens the entire vein along the length using other techniques - I can’t remember what he said specifically. Since I have an ear condition, too, I really liked that he explained how the jugular can impact the ear and specifically the endolymphatic sac which sits directly next to the jugular above the C1.
This started me thinking about some of the surgical differences between docs, specifically Constantino vs. Nakaji. This wasn’t something I was thinking about heading into the appointment, as I assumed the approaches would be pretty similar. I have my appointment with Dr. Nakaji at the end of this month, so I’ll be able to ask him questions directly. But I’m curious if anyone else that met with multiple docs felt there was a difference in surgical techniques that I should be considering/thinking about???
Since I’m in AZ, it would be great to do the surgery here and not have to fly to NY, but I felt a lot of confidence with Constantino. Thanks everyone!!
@tguerin18 - Most of our members who’ve gotten multiple opinions regarding their surgeries have found that each doctor has his/her own surgical approach. There can be similarities between how doctors approach ES surgeries & even IJV decompression, but there are also stark differences from doctor to doctor.
It’s interesting Dr. Costantino brought up the endolymphatic sac relative to your hearing challenge & its relationship to the IJV. It was hearing loss in my left ear (post styloidectomy) that pushed me to seek whether I might have left side IJV compression, but sadly it was several years after I’d had a shunt placed in my endolymphatic sac. That surgery left me with permanent loud tinnitus though it did stop the progression of my hearing loss for a couple of years. My IJV decompression has permanently stopped hearing loss progression & might have even restored some hearing if I hadn’t opted for the endolymphatic sac shunt. Hindsight is 20/20.
I’m glad your appointment with Dr. Costantino went well & you felt encouraged by his explanation of what he does during surgery. It will be good for you to compare his surgical approach with Dr. Nakaji’s & as you said to be able to ask Dr. Nakaji some more “pointed” questions based on what you learned from Dr. Costantino. In the end, there is often one doctor who just seems more right than another even if surgical outcomes are equal though different approaches are used.
@tguerin18 I met with a half dozen of the heavy operators on the list, everyone had their own take on what is most helpful. Ultimately I chose Dr. Nakaji because his surgical plan (and his experience and demeanor) felt like the best match for me. Best of luck!
Yes, it’s surprising how surgical techniques vary, you’d think , especially a straight forward styloidectomy, would be a fairly standard surgical procedure, but even with that we’ve seen members with incisions in quite a few different places! It’s good to get a couple of opinions if you can & then choose who you feel most confident with, both doctors have done successful surgeries…
I totally forgot that you had a shunt placed in your endolymphatic sac. I know they used to do the shunt surgery more than they do it today. I’m sorry it left you with loud tinnitus, which is also a risk with the sscd surgery that I’m contemplating, depending how I feel after IJV surgery. Dr. Constantino said the jugular gets larger above the C1 from the compression and starts to push on the sac, which is where the perilymph fluid is created for the inner ear. That pushing on the sac often creates the sense of fullness in the ear. I would love it if he’s right, as this is one of my most bothersome symptoms.
I agree that in the end it might be more of a feel thing, as I’m sure both surgeons are very skilled with the procedure.
Thanks for your feedback! I’m looking forward to meeting Dr. Nakaji. One of Dr. Mehta’s assistants to me that Dr. Nakaji has a very good bedside manner. That’s important to me.
@tguerin18 - RE: endolymphatic sac shunt, apparently I had that surgery very near the time ENTs were transitioning to endolymphatic sac decompression. I’m not sure how the surgeries differ but my sense is the decompression is less invasive than the shunt surgery. I don’t think either surgery is being done much anymore. Bottom line is it’s great you didn’t go through either one as you’ll have a better chance of your ear symptoms going away.
Thanks for the info about the endolymphatic sac & ear fullness, I didn’t know that…I’ve added that in to the Newbies Guide Section about symptoms/ causes!
Can I ask what your ear condition is? I have severe hearing loss and wear two hearing aides. I have eustachian tube dysfunction. I also have a tube in the non surgery side that I have had for years. I have to get it replaced a few times a year. The last placement the tube barley lasted a month and was just hanging out in the ear drum. I just recently had a sinus cat scan and there is talk of having a balloon dilation. Thanks…
Hi Brandy, I have superior semicircular canal dehiscence, which is mouthful, so it’s usually called SSCD or SCDS. It basically means the base of my skull base, an area called the tegmen, has eroded a bit and created a small hole in my canal. This is a problem because the ear is supposed to be fully encased in bone because it works primarily through pressure transmission. I have fullness in my ear, tinnitus, ear pain, BPPV for a while, noise sensitivity, my own voice can sound weird to me, etc.
When I was diagnosed 2 years ago, it started me thinking what caused my bone to thin in my skull. I also had neurological symptoms, which aren’t always tied to SSCD. I had an ENT tell me to keep looking for another cause, and that led me to jugular compression diagnosis. My thinking is that the jugular compression creates high pressure in the head and over time that thins the skull bone. I believe doctors are in the process of realizing this (some more than others) and starting to communicate more between ENTS, skull base surgeons, neurosurgery, and vascular doctors. It’s a very complicated area of the body and doctors are often so specialized that I don’t think they see the whole picture. I talked about this recently with Dr. Constantino during my appointment with him and he definitely believes there is some correlation between these 2 conditions.
@tguerin18 , Mr Axon, one of the most experienced ES doctors that we know of in the UK also made that link too I believe, that the high pressure from IJV compression can erode the bone…
