On Monday I had a CTA with my head in neutral position and also turned left and down (the position that causes the most pain and light headedness). Both the radiologist and ENT (Dr. Prussin) reviewed the images and saw no signs of compression of CA or IJV (initially the report looked only at CA but on my request both looked at IJV and saw no signs of compression).
Dr. Prussin is very thorough, attentive, and knowledgeable of ES. He said my styloids aren’t super long (3.1 cm) but are of concern due to the angle and proximity to C1. He believes it’s “reasonable” to assume my main symptoms (neck, throat, and head pain; light headedness; physical and mental fatigue; dysphagia; globus; ear pain and fullness; tinnitus; left side hearing loss) are caused by ES and could be alleviated by styloidectomy. But he has done only a handful of ES surgeries and suggests I get a second opinion from a surgeon with more extensive experience. He also wants me to get an MRI to exclude the possibility of acoustic neuroma and to see a PM&R doc to see if some of my pain is from hardware in my neck for a cervical fusion I had 10 years ago. (I intend to look into both of those things but I’m confident they are not the core of my current problems and I don’t want to lose time on moving toward styloid surgery.)
A few images are uploaded below (3Ds of my previous CTs and then my recent CTA). I have a few questions that I’d like some input on.
Do I need to do anything more to rule out IJV compression? I was convinced that Dr. Prussin believes in it and investigated it carefully. But do I need to push for more testing?
Dr. Prussin recommended I see Dr. Osborne at UCLA for the second opinion. But when I called his office I found out he intentionally is out of network for all insurance and I got what felt like a sales pitch. I’m sure he is a good surgeon but I didn’t feel comfortable. I had already sent a packet to Dr. Samji and am scheduled to do a telemed consult with him in mid-November. Any thoughts about my reactions to Dr. Osborne’s approach or my plan to consult with Dr. Samji?
I’m glad that you found Dr Prussin helpful: your styloids are longer than average & angled, so could well be causing symptoms. Dr Samji has certainly performed lots of successful surgeries, from what others have said he’s not too concerned about vascular symptoms so if you were seeing him I don’t think he would need any further testing for vascular compression.
There are others here who are much more knowledgeable about reading scans, it looks to me as if the IJV is being pinched between the C1 process & styloid, hopefully others will correct me if I’m wrong? If this is the case then it may well be that your IJV is only compressed at head turning, so might not need venoplasty to re-open it, in which case maybe you’d be fine with a surgeon who doesn’t do all of that (like Dr Hepworth in CO for example), so Dr Samji would be a good bet. Hopefully if the IJV isn’t compressed all the time, removing the styloid would give it enough space even with head turning & hopefully you wouldn’t have to have anything done with your C1 process either.
I’m UK so don’t know much about your health insurance system- does that mean with Dr Osborne everybody would have to pay for surgery themselves?
Thanks @Jules for your response and input. Dr. Prussin seemed confident that the CTA ruled out any compression of IJV. He also asked the radiologist to look and said he confirmed it. The CTA was done in both neutral position and with my head in the position that makes my symptom worse (head down and turned left). He showed me the images but I don’t have a disk yet.
@Jules - Because Dr. Osborne doesn’t take medical insurance it DOES mean people must pay out of pocket to see him. The caveat to that is people who have Medicare coverage (government insurance for those 65 & older), Medicare will pay part of the bill.
I wonder if members of the group who are more knowledgeable agree that it sounds like compression of the cranial nerves that run through the space between C1 and your styloid process, especially because of the proximity of your styloid process to C1.
If you would get styloidectomy surgery based on the symptoms you mentioned, would they see any IJV compression at the level of C1 during surgery? And hopefully relieve it via the styloidectomy?
Are you wanting to detect IJV compression to assess whether you need a second surgeon to do a C1 transverse process resection in addition to the styloidectomy?
Yes I think that’s the question. I am new to all of this but I think I would want to find a different surgeon if the surgery could involve IJV decompression or shaving down the C1.
That’s a good question about whether a good surgeon would see the need for this kind of procedure during the surgery.
@trl1964 - I actually had a similar thought i.e. that maybe you should go ahead with a styloidectomy - having the most problematic side done first to see which symptoms resolve which can take about 6 mos of recovery. However, once one styloid is removed, the symptoms being caused by the remaining styloid often ramp up so deciding whether or not to have the second surgery becomes less difficult. If your symptoms which seem to point to vascular compression continue after your second styloidectomy, then you can pursue further treatment.
I don’t think the situation in your neck looks extreme from a vascular compression standpoint, so it’s possible that just having your styloids removed will make enough space for your IJV(s) & nerves as @PamelaInNYC suggested, which in turn would allow recovery from your symptoms.
Typically, unless you’re seeing a surgeon who is aware of & treats vascular compression, the surgeon doing your styloidectomy will be focused on styloid resection and won’t go the extra mile to take care of IJV compression as it makes surgery longer & more complex. If the compression is on the carotid artery, because it’s further away from the skull base & is easier to deal with, it’s usually decompressed simply by the process of styloid removal/shortening. I hope this makes sense.
Thanks @Isaiah_40_31 I always appreciate your insights and quick responses. I am inclined to move ahead with the styloidectomy. My left side symptoms are worse but both sides are bad and my quality of life is poor. I am barely managing to get through my day right now. I can’t imagine holding out too much longer without some intervention. And the idea that the right side could get worse if I have the left SP removed is a little overwhelming.
Would many doctors agree to do bilateral surgery?
What kind of functionality could I expect to have during the 6 month recovery period?
I’m glad you were able to see Dr. Prussin and have provided this update. I responded to an earlier post that I had seen Dr. Prussin and he was definitely more thorough with you than me but…I don’t present any pain which he felt was necessary to give an ES diagnosis. I’m also curious how you managed to get a CTA in any position other than neutral. I mentioned that when I had mine at the UofU and was told it could only be done in one position. I was disappointed as some of my symptoms are positional. Best of luck with your journey.
I’m really sorry for how bad your symptoms are but totally sympathize since I’ve been there myself.
Most people are able to start back to work, at least part time, by the end of the second post op week. Some go back sooner, but they are few & far between. We recommend taking the first month off if possible or truly working very part time. This gives your body a better chance to get a jump on recovery. I was very low energy for about 2 mos post op but woke up one morning at the two month mark & felt normal & so much better than I had in a long time. It was literally overnight!
The only doctor I know of who routinely does bilateral ES surgery is Dr. Hackman in Chapel Hill, NC. I’m sure others exist (the FaceBook ES group has names of doctors we don’t have on our list because their names haven’t come up on here). If you are on FB, you could see whom they recommend.
When I had my styloids out, most ES surgeons were requiring a mandatory 6 month recovery between surgeries. That’s been reduced to 3 months which is much more favorable in my mind.
@bkerea66 I got the CTA in a dynamic position by raising it with Dr. Prussin in advance and sharing some literature with him about the need for it. He was a little resistant at first but came around pretty quickly.
I have vein blockage on both sides and, like you, I have left side neck/ear pain and left ear hearing loss.
It was found that my gallbladder was diseased and not working. The ENT found this because at least one of the sinus infections I had were of a kind that is usually only seen in the gut. The lymph system (cisterna chyli) brings stuff from the gut area up through the lymph system to the left side of the neck (left side in most people).
I have (lets hope all stars align and I get there : ) ES surgery in 1.5 weeks on the left side first and will ask if they see any infection/lymph issues.
Just wondering how many of us have left side issues and if they might be caused by (or worsened by) the lymph dumping (possibly infection) from the gut on that side?
Maybe a doctor can get you on a blood thinner to help with the blockage (and pain) in the short term?
Being on Brilinta has helped me with the ES pain, something I am appreciating all the more now that I have to come off it for the surgery and the pain is ramping up again.
There have been quite a few members with sinus issues as well as ES, although I’ve not had it myself. Sounds horrible for you…Glad that you have surgery and will pray that all goes well
I started with regular tinnitus back around 2014 or so. Then pulsatile tinnitus shortly thereafter. About this same time I started having this “sensation” on the left side of my face. My mother had had it and her doctors told her it was anxiety. Over the years it has spread to the top of my head to the tip of my chin including ear, eye, etc. It comes and goes…I can go weeks or months with just mild to no tingling. I have anxiety and depression but can’t say if ES is the cause. I have some “fullness” in my left ear…seems clogged up at times. Sometimes my tinnitus will just started screaming and then dissipate again. My pulsatile tinnitus is definitely dependent on the position of my head. My left styloid (I think) sticks into my throat near my tonsils and pushes my tongue aside a little. I also have developed random muscle tingling and twitching at random places, especially my legs and feet but other places as well. This may be related to disc degeneration in my cervical spine and/or the fact that I fractured my T10 vertebrae a couple of years ago.
@bkerea66 - I must counter Dr. P’s thoughts that your symptoms aren’t related to ES. They are all potentially related to elongated styloids/calcified s-h ligaments. The pulsatile tinnitus is concerning as it can point to IJV compression though you seem to lack the other symptoms that go along w/ that. I highly suggest you send your scans to Dr. Cognetti or Dr. Samji & make an appt for a second opinion as both do video consults. You wouldn’t be obligated to either one for surgery after the consult.
