Costantino, osbourne , nakaji, Samji
if you had any experience with any of the following or could choose or recommend any for your surgery who would you choose ? What was it like plus your recovery ?
and do any do Venogram prior to surgery ?
We’ve had discussions about the different doctors & their different techniques etc, you could have a search for them, & hopefully others with experience will chip in with their reasons for who they chose… Dr Samji has done many successful surgeries, but isn’t as experienced with the vascular form of ES, so might not be the best doctor for you to see…
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@Deanm - I had my two initial surgeries w/ Dr. Samji. I had a cycling accident w/ a head injury that resulted in C1 shifting left & compressing my jugular vein which caused hearing loss, brain fog, incredible tinnitus & eventually vertigo. He diagnosed me w/ Meniere’s Disease & I was treated for that by his associate. It wasn’t until 6 yrs later, I became aware that my symptoms were likely from IJV compression not Meniere’s so I proactively got the testing done that showed IJV compression though none of the radiology reports mentioned it. I was finally able to see it was bilateral when I converted the images to 3D. Left IJV, the side where hearing loss exists, was squashed between my left styloid & C1. Dr. Samji didn’t cut my left styloid as short as the right one (left was my second surgery), & I’ve wondered if it was because he saw the compression & “didn’t want to go there”. By the time I was diagnosed w/ IJV compression it was too many years after my surgery to approach him about it, though I knew he doesn’t even believe that ES can affect the IJV negatively. Dr. Hepworth did my IJV decompression & a second left styloid resection last fall.
All that said, I did get good outcomes from both surgeries as far as recovering pretty fully from the plethora of nerve pain symptoms I had & the brain fog I experienced after my cycling accident. Things to know about his surgical approach are that he uses surgical clips (I’ve had no problem w/ mine), he operates w/ the patient’s body in a prone position vs supine & dislocates the jaw to gain better access to skull base. He doesn’t ever mention these things pre-op & Iearned about them from other members of this forum several years after having my surgeries w/ him. In my case, the jaw dislocation actually stopped my TMJ pain, but for others it’s exacerbated it.
My first surgery took close to a year for full nerve recovery. My second surgery was less involved so I recovered more quickly but again, it was a year or a bit more before my nerves were mostly healed. I must say though that I felt pretty good by 2 months post op.
Dr. Costantino routinely cuts the greater auricular nerve (GAN), & removes the posterior belly of the digastric muscle during his surgeries. He works w/ either Dr. Lo or Dr. Tobias (neurosurgeons) who reattach the GAN once the styloid & C1 have been dealt with. In some cases, Dr. Costantino refers a patient for a venogram.
We’ve had a few members who’ve been turned away by Dr. Nakaji because he felt their compression wasn’t severe enough to warrant surgery in spite of the fact they were symptomatic. He does require a venogram prior to having an appt with him & it’s done by Dr. Mehta in AZ.
We’ve had a couple of members who’ve had vES w/ IJV compression & had surgery w/ Dr. Osborne w/ good outcomes. This is most likely because C1 wasn’t the primary compressor, the styloids were. Once the styloids were cut back past C1, the IJVs could open. Dr. Osborne doesn’t do C1 shaving so if it’s the bigger problem, it’s better to see a different surgeon who does.
Hopefully people w/ first hand experience w/ the surgeons I haven’t seen will chip in about their experiences.
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How quickly after surgery did your brain fog go away and was the surgery recovery painful ? and what is nerve damage like?
I pray I can use osbourne because he’s local and I like him
If not will probably go with nakaji
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My brain fog went away quite soon after surgery - within the first couple of weeks if I recall. My surgery was in 2015 so it’s been a few years & those details are a bit hazy at this point. I should have documented my recoveries but didn’t.
Nerve irritation or damage during surgery just exacerbates the symptoms you may have already had or can create new ones. I had what I thought I was told was my GPN wrapped around my right styloid which needed to be unwrapped so the styloid could be shortened & ended up w/ half my tongue paralyzed for 6-9 months. Tongue paralysis like that is more related to the hypoglossal nerve so maybe I am misremembering what Dr. Samji told me in my immediately post op drugged stupor. A nerve situation like mine isn’t typical but demonstrates that doctors can’t predict what they’ll find once they open a patient’s neck & then must figure out, on the fly, how to handle. I had tongue symptoms prior to surgery but they were on the left side only & definitely GPN related as they were at the very back of my tongue & were gone when I woke up from my left styloidectomy.
I think Dr. Osborne is a pretty honest guy so you should ask him directly if he thinks he can do your surgery successfully based on what he sees in your CT scan. If he thinks C1 is your bigger IJV compressor, then Nakaji will be your better bet for getting symptoms resolution.
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Dr osbourne said he doesn’t believe in c1 shave because if you remove whatever is in front of c1 the vein should have enough room to wrap around as he put it
But I’ve heard conflicting ideas
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Unfortunately, just removing what’s in front of the IJV doesn’t always work. Some people have exceptionally large C1 transverse processes or C1 has shifted to one side or the other or rotated forward putting significant pressure on the IJV from the back side which isn’t resolved when the front side pressure is removed.
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I definitely have that in my case.
Which is why I’m waiting to hear from Peter Nakaji as well before making my decision
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I’m a big fan of Kejtl Larson and we have a meeting tomorrow morning
I’ll be better informed on what to do next tomorrow
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I’m worried about pain and recovery time after the surgery
My wife seems to think nothing can be worse than what I’m going through now
Either way, I’m sure we will figure it out one way or another getting closer each week
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@Deanm - Your wife is correct. The worst of recovery is the first week or two. After that things start getting better & better though as you’ve read, healing isn’t linear. It’s got ups & downs, but the downs aren’t normally nearly as bad as the original pain/symptoms.
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That’s really reassuring to hear
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Will be interesting to hear Kjetil Larsen’s take!
He said it’s definitely not the jugular
It Might be the granulation but since I had it for years he doubts it
Even though the granulation is blocking 70% of my dominant transverse sinus
but more than anything he thinks it’s stress
He does see brain pressure on all my scans
He
Recommended a beta blocker and rest
And check back in a month
And after 3 months if I still don’t feel good then I could check the granulation on a catheter venogram checking pressure
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That’s interesting! Are you still going to go ahead with your consultation with Dr Nakaji?
I sent him my scans just waiting to hear back from
His office
I’m willing to try Larsans plan for a few months
Try the beta blocker
De stress
Every day looking
Up information going dr to dr is stressful too and maybe just leaving everything alone for a little while and letting my body try to relax may help
He said sometimes the styloidectomy and c1 shave is needed but often times only helps 10-15% and was not the real cause of the symptoms
Said the same thing about putting the stent in my brain for my transverse sinus
It’s hard to know who’s right or wrong
Just have to try and give it time
And if in the end I can’t take it I’ll do some procedure
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That sounds like a plan, hope that it works 
This is Dr Nakaji response to my scans .. not sure if he wants to test the IJV or just the transverse sinus .. seems like he doesn’t reference any compression of the IJV and just that it is small so not sure .. waiting on Response from his office .. if it’s just the transverse sinus I have a good Dr locally who can handle that .. was more so seeing nakaji for jugular but now im not sure if he even sees a compression or not
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Regardless of whether he sees compression in your IJV or not, he clearly sees a situation he thinks may be causing at least some of your symptoms @Deanm, otherwise he wouldn’t have recommended the dynamic cerebral venogram w/ pressure gradient manometry for further clarification. If he doesn’t think he can help someone, he’s usually up front about that right away.
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@Deanm That type of venogram looks at pressure gradients throughout your brain’s venous circulation so it would look at IJV as well as transverse sinus and several other areas.
The stress component is also very real. It’s amazing what our brains can generate in the body when they feel under threat. Check out Alan Gordon’s book The Way Out which is focused on chronic pain but the techniques work for chronic symptoms as well as anxiety. Also, Les Fehmi’s work, Open-Focused Brain which is like a brain training process, teaching your brain how to rest in a calm state.
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