Hi! Starting a new thread so I don’t keep clogging up “NYC surgeons.” I had my surgery Monday with Dr. Costantino and Dr. Tobias (neurosurgeon) at Stamford Hospital. I’ll paste below what Dr. Costantino wrote to my physiatrist, who originally diagnosed me.
“We expanded the jugular vein substantially even with left lateral head rotation as a result of the removal of the C1 transverse process, styloidectomy, translocation of the spinal accessory nerve, jugular vein fasciotomy, and lysis to the posterior bellies of the digastric. Interestingly, the styloid process did not seem to create any compression of the jugular vein. It was all the transverse process and spinal accessory nerve that compressed the vein between them.”
He took photos (I can share them, but they’re pretty gory) of how the spinal accessory nerve was completely flattening the jugular vein, and showing the “major decompression” once the nerve was moved and transverse process removed. He especially wanted me to get on this forum and impress upon everyone that the styloids, even elongated ones, are not always the issue, and that technically he wouldn’t call my condition Eagle’s.
I did notice an immediate difference on waking—less pressure around my eye and ear especially. I can’t really tell if the constant discomfort around my head and neck is gone since it’s obviously ramped up significantly right now, but I’m very hopeful.
Recovery is by all counts going smoothly, but I have struggled with pain management and discomfort. I think the surgery was more extensive than anticipated (it took four hours instead of the projected two, and the nurses told me they prepped an ICU bed once they saw Dr. C’s notes, though thankfully I didn’t end up needing it). I was able to go home after a day in the hospital (very fancy rooms with beautiful views in Stamford, and really attentive care), but the drive home was rough and I’m still pretty exhausted. Taking it one day at a time!
So pleased that you’ve had your surgery, and that Dr C was able to free up the IJV- wow, I wouldn’t have thought a nerve could be tough enough to compress the IJV! We have had members who’ve had compression by the digastric muscle, and obvs the C1 process, so we do know it’s not always the styloid who’s the culprit, but at least if it’s out of the way then it frees up more space in the area…
I hope that you can get your pain under control, and get plenty of rest…thank you for sharing your experience, take care of yourself & prayers for a good result
So happy to hear you finally had your surgery! I knew it had to be coming up soon, but didn’t know the exact date.
Thank you for sharing the part about your transverse process and spinal accessory nerve being the point of compression.
Your going to have a lot of swelling in that area for awhile that may mask some the benefits you will see a few months down the road. Even if you feel good don’t push too hard, it just makes the recovery longer (I know from personal experience).
When you get a chance I would love to see the pictures. I never got to see mine, I was too afraid to ask during my last follow up with Dr. Costantino.
I am so very happy for you, and your report gives me even more confidence in Dr. Costantino and Tobias.
He’s diagnosed me with Venous Outflow Obstruction, and we have a tentative date for surgery. My chief complaints are brain fog, dizziness, nausea. I’ve been being treated for MAV (migraine associated vertigo) but Dr. C’s findings could explain many(if not all) of my issues.
Not how squished my IJV is between the transverse process in the styloid process.
@BriCSP You are very kind and caring to post this within days of your surgery. Wishing you speedy and complete healing and that your symptoms lesson more and more with time.
Yes. I took my CTV scan and ran it through free software that converted it to 3D imaging.
There are a number of products available. I use a MacBook, so the product I used was called Bee viewer.
Y’all asked for them! Here’s before and after during the surgery, with his labels. He said he’d never seen the nerve be the cause of the compression before, which is why I think he documented it so thoroughly.
@Barrootz thank you! I’m unclear on whether to ask my MD for a CTV or MRV.
I read that “MRV may be preferable to CTV because of its high accuracy and low radiation” and that “evidence regarding the extrinsic compression in cases of IJVS [Internal jugular vein stenosis; induced by e.g., the styloid process, digastric muscle, arteries, lymph nodes, sternocleidomastoid muscle, and thoracic outlet syndrome, tortuous internal carotid artery compression] would be provided by contrast-enhanced MRV in combination with three-dimensional CT of the neck”
It seems that @BriCSP had an MRV per Dr. Constantino.
(I’ve already had an MRA, showing tortuosity (but no blood flow limitations) in all 4 cerebral arteries–but there was no head-turning during the imaging. I’ve had a 3D CT showing bilateral calcified stylohyoid ligaments)
Arteries supply blood to the brain, the jugular veins are on the outflow side back to the heart. Were there any notes about your jugular veins?
I have had MRI, MRA, CTV, with contrast was the best so far for showing the blood vessels in a way that I could understand them. I use the 3-D viewer, and it was clear as day that I have an issue with IJV compression on one side. This explains the positional component I have, when looking to the left things get much worse for me.
Great to know that the CTV with contrast was the best so far for showing the blood vessels in a way that you could understand them. Though I wonder how an MRV compares (given it’s less radiation it seems).
Keep us posted on your surgery date! Hope it resolves most or all of your symptoms!!!
