Looking for some general advice on my situation and imaging posted below. To date I’ve had 3 surgeries:
Surgery #1 2023: Bilateral styloidectomy to address bilateral Eagle Syndrome. At the time my LEFT side was not experiencing any symptoms/issues but Kaiser in CA does bilateral by default and I was not educated enough at the time to push back on this. All of my symptoms were on my RIGHT which is my dominant IJV.
Surgery #2 June 2024: Kaiser did not fully decompress my RIGHT IJV so I had surgery with Hepworth in CO where he further decompressed the IJV and shaved C1 as well as removed several swollen lymph nodes.
A few months before surgery #2 I started to get pretty bad LEFT side TOS symptoms but didn’t have much face or neck pain on my LEFT side at this time. Then about 3 months after surgery #2 the LEFT side of my face started to swell. The swelling is constant and varies in severity. I also experience on the LEFT side numbness of my lips and cheek (like a line is drawn down the middle of my face), front of neck burning pain, back of neck burning pain/occipital, ear fullness that fluctuates. If I push underneath my ear as shown in the picture it’s very hard and at times hurts so much to touch.
Surgery #3 December 2024: Unfortunately Hepworth didn’t fully decompress my RIGHT IJV so I had another surgery with Costantino in NY. He performed a reception of the posterior belly of the digastric muscle, Occipital artery lysis, Jugular vein fasciotomy and mobilization, C1 transverse process resection and also removed 3 swollen lymph nodes.
The LEFT side symptoms have only continued to worsen, while my RIGHT is finally feeling better. I’ve been told by Hepworth, Costantino and several other doctors that nothing can be done for my LEFT because the IJV is hypoplastic as well as my transverse sinus. In fact, none of these doctors were even able locate the LEFT IJV on my CTV/CTA and all of the radiology reports say “The left jugular vein is not visualized at the left skull base”. A wonderful friend loaded my imaging into Radiant and was able to locate the LEFT IJV and a shoutout to Isaiah for annotating the pics - she’s literally been my guardian angel for this whole journey!
I honestly don’t know where to go from here since it may no longer be a vascular eagles syndrome issue or if there even is an issue. Is there by chance lymph nodes fascia or a muscle contributing to some sort of compression on the left IJV? Is the left IJV even the issue or is the internal carotid more of a concern in its placement? There’s also a weird grouping of lord knows what next to C2/C3 (circled in red).
I’m just hoping someone with more knowledge can see something off in the images below and help point me in the right direction. Thank you in advance for any advice!
Wow, you have been through so much! So sorry for you that you’ve had all these surgeries and are still having symptoms on your left side… It’s frustrating that you’ve seen the most experienced doctors for VES as well…
I can’t really comment on the scans, but other members have had compression from different muscles (digastric, SCM and omahyoid), nerves and also other blood vessels, so it could be that perhaps, or as you say a lymph node, or I wonder if you have scar tissue maybe causing issues on the left? I do agree though that it does look in the imaging as if the ICA is causing you some compression…And it looks as though there are collateral veins at the skull base, other members have had pain in the skull base area from those too.
The pain sounds like you have some nerve pain , have you tried nerve pain medications?
I wish I could offer you answers instead of more questions, sending you a hug
Hi @maryscooter . I’m sorry that you’re continuing to experience difficulties. I just wanted to let you know that I also experience that hard, sore area under the ear where you showed in your pic. I had surgery with Dr. Costantino about a year ago & it is still sore in that area. I went to physical therapy for a few months and they weren’t sure why it was like that. It seems that it is finally starting to soften up a bit at times. Do you know what muscle or structure is in that spot? My surgery was done on the left side though and that is where I have that spot so I was thinking that it could be scar tissue. Also, when I had my surgery it was discovered that the spinal accessory nerve was causing the IJV compression as well as the styloid & C1. I do still experience some ear symptoms as well on that side. Does it help for you to massage that area at all? I hope that some other folks who have a lot more experience can chime in to help guide you. It always amazes me when I read through topics on this forum just how much collective knowledge is here!.
@maryscooter Have you had an IR venogram…the one where they run a catheter up through your femoral vein? That would be a definitive way to examine the flow on your left side. Dr. Amons at UCSF is an excellent interventional radiologist.
You’re so supportive Jules thank you It is really hard to tell for sure what is causing this compression on my left. On my right Costantino compressed it beautifully up at C1 but now my SCM is compressing it! It could definitely be scar tissue for both my right and left side IJV compression. I have tried all the nerve pain medications and although Gabapentin helped it made really screwed with my mind - I’d be looking at a tomato and couldn’t actually tell you what it was called. Thank you as always for the help!
Thank you for responding especially as a fellow Costantino surgery patient! That’s interesting that you have this same spot under your ear. On the right side, which is the side Costantino operated on I don’t have a hard spot in the same location as my left. Costantino did an amazing job on my right side except that now my SCM compresses my right IJV in neutral. My left was done in Sept of 2023 at Kaiser in California but I didn’t start experiencing pain until a year later so maybe it is scar tissue. I do know that Kaiser didn’t check for any compression outside of the styloid so I wouldn’t be surprised if they missed C1 or the vagus nerve, etc. Unfortunately nothing seems to help it and massaging it doesn’t feel good cause it actually hurts to press on it.
From the back view it looks like the left IJV starts to be compressed just above the transverse process of C1 to just below the transverse process of C2.
I’ve had 2 but 1 was done at Kaiser in CA and they have no clue what they’re doing and the other one was done during surgery by Dr. Hepworth and I believe they only looked at my right IJV and not my left IJV - and even then they missed that my occipital artery and C1 were still causing major compression to my right IJV. I’ve heard good things about Dr. Amans as well. I actually have an appt with an interventional radiologist at Stanford in 3 weeks who is going to want to do another catheter venogram but I am wondering if I should cancel that and push for Dr. Amans. It’s so hard knowing what is the right thing to do!
I’m glad that you’re able to have another venogram, and hope that it shows what’s causing the issues… does your SCM feel tight and/ or swollen? If it does whether there are any treatments which might help relax it, PT, dry needling or botox maybe?
That’s what’s odd it doesn’t feel super tight or swollen. I found a local pain management doctor who is willing to do Botox injections into the SCM and anterior scalene but of course the insurance I pay $1k a month for won’t approve it so I am fighting with them now.
I definitely will check it out. I’ve read a lot about the pros and cons in the various Facebook groups but not in this forum. I am not a huge fan of Botox but it’s worth trying to get my one good jugular fully open.
Hi! Yes, I do see what you are talking about regarding the compression at C1. There is a definite difference between the 2 sides on your imaging. I’m sorry that the SCM is now compressing your right IJV. Does Dr. C have any recommendations for taking care of that? I haven’t had any follow up with him since last September so haven’t had any additional imaging done. He was going to put in an order for a CT in April or May but hasn’t done so yet. How did you find out that the SCM is causing compression, what tests identified that? I know that I still have compression on my right side but am hoping to avoid another surgery. I have no symptoms right now on that side but Dr. C said the compression there was actually worse than on the left side. However, he recommended doing the left side surgery because it is my dominant side and would allow for a greater amount of blood flow when decompressed. It sounds like you’ve been through a lot already. I really do hope that you get some good answers from the interventional radiologist or Dr. Amans. I know that it is frustrating trying to find answers and to be having weird symptoms . I hope that you can get some answers and solutions soon. Please keep us informed of how you are doing!
I am so sorry to hear you’ve had such difficulty with your surgical journey!
I had left styloidectomy 7 months ago and have had ongoing pain in and around the incision and deep within by the ear/mastoid. I also developed a rash and redness/swelling in the area about 3 months post op which went after two courses of antibiotics. I however keep getting the feeling of pain and fullness back and when I touch the area by the ear (where you are indicating) or behind the ear it seems to aggravate it more - it is hard and sore but if I very gently rotate my finger on various spots it does feels like fluid might be stuck or something. I then get pain through my upper body (fatigue/achiness) along with increase in symptoms.
I feel like I might have a constant infection in the area possibly - along with unresolved issues.
Have you considered that you might have an infection hence the pain returning after 12 months? Not to say there isn’t more going on also.
When I met with Dr. C last to go over my CTV post surgery with him he didn’t notice the SCM compression so I will need book another appt with him to go over that. I found the SCM compression in my imaging, which was a CTV/CTA of head and neck with contrast. Unfortunately I’ve learned that these specialists don’t take the time to really look especially if the compression is outside of the C1/styloid area. Our bodies are so weird my left side had no symptoms until my 2nd surgery and is now worse after my 3rd. Definitely not worth having surgery on your right side if it’s not hurting. Dr. C’s surgery was a LOT to recover from as you know
Thank you for responding My first thought was that it was an infection of some sort but none of the doctors I’ve met with think it is. It’s very odd though - I might push maybe trying some antibiotics but I just hate taking those if I don’t need to but I also hate hurting ha so it’s definitely a toss up!
Does the pain spread at all at certain times of the day? For me, I can not sleep of my operated side or lie flat at night. I think it stops the flow of fluid (or blood, not sure). After reading your post and other responses I started lightly massaging more consciously yesterday while standing up and it does do something. This morning I woke from my sleep feeling slightly hot with pain again and have found this lymphatic drainage self massage guideline. I just did it and definitely feel a bit better since. For me, I can taste what I would call bacteria coming from the general area but in my mouth, on the left, but ED doctor last week I saw did bloods which came back uneventful and said I wouldn’t be able to taste bacteria - honestly don’t know why the simplest symptoms are so hard to communicate to doctors. Anyway when I did the massage just now, I could very clearly taste something bad when stretching out the area and gently massaging. Hoping to get an ent appointment soon.
This is the link to the massage technique if you are interested:
@BraveKat, I would think it would be good if it’s helping to drain nasty stuff out of your lymphatic system especially if there’s infx, however, the disadvantage would be potentially spreading the bacteria elsewhere. If you can taste it, I expect it’s going to end up in your stomach exposed to hydrochloric acid which it probably can’t survive so maybe it’s ok to massage it after all? Since you are getting some relief (even if there’s backlash later), stimulating the area may be a good thing.
Hi @BraveKat . Thanks for talking about the lymphatic massage & for the link. I forgot to mention that I did get some info about that on this forum a while back & started doing it. It does seem to help especially on the side that was operated on. I figured that it might be good since I also had lymph nodes removed. I do a routine that is a little different but similar to the one you posted. I will go ahead & try that one too. I do feel drainage at times, but have never been able to taste anything. I did see that they don’t recommend doing it if there is an infection. I hope that you can get the issues that you’re having resolved so that you feel better! This is unfortunately a pretty complicated journey that we’re all on.
- she’s literally been my guardian angel for this whole journey!
