It’s been a while since I’ve been on the site. I was recently at Caring Medical in Florida because my symptoms have gotten worse with chest spasms, brain zaps and organ spasms in the digestive system. To make a long story short, they found, other than my elongated styloids(which I already knew about) they found significant vagus nerve degeneration bilaterally. My IJV’s are compressed on both sides. Review of my CTV revealed that the C1 is compressing my jugular veins. There’s also left sided thoracic outlet syndrome and bilateral omohyoid compression. My middle cerebral arteries (MCA) velocities also are elevated. The vertebral artery is working harder to supply blood to the brain because another artery is not delivering enough. Lastly I have a swollen optic nerve on the left eye- When optic nerve sheath diameter is elevated it typically means that brain pressure is >20 mmHg
We don’t believe the styloids are directly causing the problems. They prescribed curve correction and physical therapy since the years spent in front of the computer have not been a good thing for me. With significant years of damage and with my time so far with therapy only yielding a little relief, I believe it’s only going to help just so much. I’m thinking about the surgical approach to releasing the compressed IJV-this is worse on the left side. That could involve stenting or even a C1-shave.
Does anyone know which doctors specialize in this? I’ve been to Dr. Hackman in North Carolina who already could do a syloidectomy, but does he specialize with venous compression? My last angiogram suggested a “MULTIPHASE MRI OF THE NECK WITHOUT AND WITH IV CONTRAST.” Has anyone here had a successful C1 shave?
My symptoms have never been this bad before and would be thankful for the help.
@MisterFrodo - I’m so sorry your symptoms have gotten so much worse. We’ve had a number of members over the years who’ve gone to Caring Medical to try to get a diagnosis & a few who went to try to avoid surgery, & sadly, all of them ended up here to say the treatment they got there didn’t help much.
What you need is a CTA/CTV scan as that will better show what your current vascular, styloid & cervical situation is, & it’s what the doctors you need to see for surgery will want in order to be able to best help you.
Dr. Costantino in NY & Dr. Liu in NJ are the two nearest you who do IJV decompressions with C1 shaving. Dr. Costantino operates together w/ Dr. Tobias who is a neurosurgeon & Dr. Liu is himself a neurosurgeon. He operates w/ Dr. Mir. @harrisonboy posted a link to a webinar where Dr. Liu presented his surgical approach for IJV compression: https://www.youtube.com/live/nGFDx88RvnM Dr. Liu’s section starts at 16:30 in the video
Thanks. I’ll have to take a look at these. Caring Medical is helping with a very conservative route, which might help. But I feel this issue is far too serious regarding the jugular vein. At 55 I just would never have imagined I would be facing this.
I’m sorry too that your symptoms are worse, a worry with the vagus nerve degeneration too, and also about the swollen optic nerve, this would indicate high intracranial pressure, probably from IJV compression… @Isaiah_40_31 has given you good info about the doctors, but just to answer your question about Dr Hackman, he is a very experienced surgeon and has done many successful surgeries, he does remove the styloids close to skull base which is often enough to relieve vascular compression, but doesn’t specifically address vascular compressions, so wouldn’t do a C1 shave, and wouldn’t look into any other soft tissues which could be causing compression. So probably better for your case to see one of the doctors mentioned above. Also Dr Hepworth is knowledgeable about TOS as well as VES if you have been diagnosed with that too, but has a long waiting list.
If you see the doctors mentioned, you’ll be in good hands, if you were to see anyone else, don’t be persuaded to have a stent put in without addressing the bony compressions first, as this could be very dangerous and could collapse the stent.
Yes and I looked at what they do in a stent and using logic it made sense to me that if your trying to squeeze in a stent in an area that is already comprised would that not compromise the structure of the vein to begin with. It would not free it up. I also do not think I could wait another year or more to see someone like Dr. Hepworth. Like many people dealing with this, I simply don’t have years to wait and keep living like this. I do notice that when I lie down on the left to try and open up the jugular that at times I get what feels like a rushing flow sensation towards the heart area and abdomen. At the very least it does open up my head and feel like a slight pressure release.
I just had IJV decompression and C1 shave myself. I know someone who just came back from Caring Medical and I personally have had alot of prolo-therapy in my life. He came away with some decent information and DX but I dont recommend prolo-personally. I guess if you have the funds and you want to be ultra-conservative before surgery, it is worth a try. Generally speaking I have not heard anyone speak about getting a stent in IJV, at least it isn’t the 1st line of defense.
With all that is going on, you just want to make sure you find a surgeon that addresses the vascular compression and has the potential to do a C1 shave.
Here is some interesting links who Dr. Cha in Minnesota is working on. Apparently she will consult with neurologists in other states to assist in following her protocols.
Thank you for the link, @Snapple2020. I’ve added it to our Research Papers section. Dr. Cha has been mentioned on here by a number of members so I’m glad to know she is providing helpful information to neurologists who are interested in her protocols.
So many things can go wrong in our necks alone! It’s really great that doctors are beginning to recognize some of the more obscure or less looked for causes of IJV compression.
There are certainly artery spasms. But more like the Vagus nerve creates spasms of the arteries or the digestive track and even spasms of sphincter muscles near the esophagus or the pancreas. I only know that when I get the accompanying symptoms. When I lay down on the right side in order to open up the left jugular vein I can get a sense of a whoosh or flow of extra blood down into the heart. Which in itself is not a pleasant feeling. The most intense spasms under the ribs is a horrible surging feeling that feels like a hand is punching you from the inside out. But it’s not exactly painful. There’s never any high pain intensity. But more like a shock, a terrible shock feeling.