1 year update for VES. With MRV results

[elijah]

Hi y’all.

June was my one year anniversary from my bilateral styloidectomy for my vascular eagles syndrome (jugular variant).

The good news is that my most severe symptoms are all gone. My vision is great, no more paps, face pain is way down and in general I just feel like a new person.

The not so good news is that I still have quite a few lingering symptoms that are unresponsive to different treatments I tried.

Before surgery my worst symptom was likely some form of atypical trigeminal neuralgia. I had a severe pain and pressure like feeling in the front of my face, like someone was jamming their fingers into my front cheeks. That’s what drove me to get surgery.

I had the other typical vascular symptoms, like IIH, minor optic nerve swelling, dizziness all the good stuff.

I still have pain in the back of my head, burning and pinching sensations around my face. I feel like I’m wearing a cap all the time and sometimes my hair hurts my face when it touches. I also get very weird aching like feelings on the top of my head. No shooting or stabbing pains and all of these are mostly livable.

I decided I wanted to get an MRV to see how my veins look and to see if I can rule out vascular involvement. Unfortunately, even though I had such a drastic improvement in my symptoms, there is still severe compression of my right dominant IJV, amd my left IJV is still completely clotted.

This is my right

And this is my left showing the clot

My full scan is here

https://www.dicomlibrary.com/?study=1.3.6.1.4.1.44316.6.102.1.2023061111234441.267863375995152526074

I’ve met with my main Dr who’s my quarterback in this. He’s a very strong believer that you must have as much venous outflow as you can so he’s not the type to just say wait and see.

We decided that I am going to get a CTV to get a better picture of the compression at c1 because it’s unclear why I still have compression there. I have a fairly healthy looking cervical spine so there shouldn’t be that much compression. I may be a combination of scar tissue, muscle and lateral mass of c1.

I will also be having a angiogram and balloon venoplasty after we get my CTV results.

He wants to try and fix the clot as well and does not believe I am at risk for PE as the clot is too small to cause a PE. He works in the ER cath lab a few days a week and says he removes IJV and transverse sinus clots all the time and is really not worried.

If we aren’t satisfied with the results of the venoplasty then both him and I are open to right sided c1 resection and external decompression of the IJV. But we’ll cross that step when we’re there.

All in all, still extremely grateful for my surgery and how well I am doing vs prior to it but it looks like there some more work to be done.

Also want to give a shout-out to the members of this group who spend their own valuable time reviewing other peoples scans and offering literally life saving advice. You know who you are and I am extremely grateful for your kindness.

[Jules]

Wow, where has that time gone?! Probably doesn’t seem so quick for you though! So pleased that your surgery was worth doing & that you have had some symptoms resolved…It does seem that we’re getting more & more members with very complicated situations, not just ES, so it is a long journey, so sorry that your case is obvs that and you’re having a longer journey than anticipated! Good that you have a doctor on your side who is not giving up & is helping you get as well as you can be…
I can’t remember if you’ve had nerve pain meds at all? I still have some nerve pain, more aching and pressure as you’ve described, but it has improved since surgery & Amitriptyline helps…
Thank you for coming back & sharing your story, will you let us know how the venoplasty goes?

[elijah]

I actually trialled a few meds including ami and different strains of medical cannabis. Nothing did anything. The one drug that had the greatest affect on my pain was…eliquis. Lol. That’s why we think the lingering pain has a connection to my vascular issues and want to cross that off the list before we move onto pure nerve pain management.

[Leah]

@elijah regarding:
“I still have pain in the back of my head, burning and pinching sensations around my face. I feel like I’m wearing a cap all the time and sometimes my hair hurts my face when it touches. I also get very weird aching like feelings on the top of my head. No shooting or stabbing pains and all of these are mostly livable.”

For your pain at the back of your head… Can you tell if that is the upper cervical spine? I have most of these symptoms. However, I do have rotation at C1 and C2.

I did have an appointment this week with a neurosurgeon to get opinion on that area… They didn’t have much to say other than there was no surgical intervention necessary at this point, but didn’t provide guidance on how to proceed for pain relief. And like most had no experience with or guidance on C1 and styloid.

I am considering pursuing an occipital nerve block to rule that in/out. I am getting relief from gabapentin, and tolerating it reasonably well, FYI.

[elijah]

@Leah It could very well be. The general idea is that unless you have serious CCI symptoms and radiographic evidence for it, other than PT and meds there isn’t much to do. You don’t want a fusion unless it’s your absolute last possibility.

If my vascular issues are resolved and I still have these symptoms I’m gonna go down the nerve route.

Gabapentin is something I haven’t tried yet. I’m open to it. My mom had a horrible experience with it and I’ve heard some horror stories but I know everyone is different. I tolerated amitriptyline really well while others call it the devil. As long as it does not fog my head up I am willing to give it a shot. I am a software developer so I can’t afford to not be able to think.

[Leah]

Thank you and agree. Was relieved to hear that neuro didn’t see cause for concern… and helps me narrow things down.

Best of luck with your continued peeling of onion layers.

[akc]

I am so sorry to hear that it wasnt’ done deal. And I feel you. That face pain you describe. I have that all the time. I have to put a light scraf over my head/face every night because the sensation of air moving in the room from the airco (pointed away from me) makes it hurt so much I can’t sleep. It sounds like you may have developed alodynia when you speak of the hair hurting where it touches you. Mind, I can have that as well and know it’s not alodyinia. And yes, those “nerve pain” medications… I am on a cabinet full of meds and I swear nothing is touching my pain. No nerve pain medication ever did anything - even the more typical TN (sharp shocking a few seconds at a time) pain…

i do so hope that future operations help you. I cannot offer help in reading anything as I am so new and still learning to ID what is the jugular vein But I have seen how powerful and incredible people in this group are as I quietly watch and read…

I just wanted to say I’m sorry for your ongoing, and it sounds like different/not better in terms of head/face pain, struggles…

[akc]

ps. Gabapentin is one of the medications that some Drs ramp people up and down too quickly. Do try it, if yo go slow you will be fine. Ask for the 100s to start and every 1-2 weeks (depending on your tolerance) add another 100. Drs will start you on 300 and then jump to 600 in 1-2 weeks. I bet that’s what they did to your mom. I had terrible impact when started at 300; but no problem at all going up and down 100 at a time. (just remmember to do the same when you come off of it)

[elijah]

I am sorry to hear how much pain you’re in. I’m very fortunate that I don’t have any classic TN pain and physical stimulation did not make my pain worse. I should reiterate that my pain has gone done immensely since my last surgery. I’m no longer disabled and for the most part got my life back. I’m just not done yet and am dealing with a lot of lingering pain.

Also, thanks for the gabapentin advice will definitely mention it if my Dr recommends it. I know it’s one of those drugs that they just give out like candy for all kinds of pains, whether it’s contraindicated or not.

[Isaiah_40_31]

@akc & @elijah - I’m sorry for both of you with your facial pain. I’ve had some of what you’re experiencing but would say it’s “the tip of the iceberg” comparatively. I hope for both of you to find resolution whether through surgery or nerve pain meds.

[elijah]

Venogram and venoplasty are scheduled for September 5th. Dr will see how much he can open my right ijv and try to remove as much of the clot on my left side. Depending on how it goes we will decide if I need c1 shave.

Still waiting on my CTV too and will share when I get those results.

I am also meeting with a new pain Dr who will hopefully have something for me to try and manage the symptoms while I get the vascular issues resolved. My hunch is it’s gonna be gabapentin because what doesn’t that solve these days (sarcasm) but we’ll see.

[Isaiah_40_31]

Are you seeing Dr. Costantino? @elijah

[elijah]

No. I was asking out of curiosity. If I do end up needing c1 shave I will likely be going with Dr Mark Persky. But it’s too early to say anything for now.

[Isaiah_40_31]

I’m glad you have medical resources closer to where you live.

[elijah]

Well Persky and Constantino are both in NYC area and pretty much same distance to me in north Connecticut. But luckily I can drive there and back in a day and don’t have to fly.

[lilwider]

@elijah - I was just suggested by my insurance company to make an appointment with Dr Persky. How do you like him? Has he done many eagles surgeries before? I’ve been trying to stay with the known Drs. But my insurance is not giving me approval for out of network

[elijah]

Hi guys,

I had a CTV with contrast done 2 weeks ago and I’m pleased to say the results are much better than the MRV suggested (it’s my fault, because I opted to not have contrast)

The results for my right dominant side are so drastic that my Dr and I decided we are going to leave it alone for now. It’s not perfect and there’s still compression from c1 but the difference from before and after is night and day.

Here is before and after right IJV sagittal view

And here is axial view showing a massive difference at the c1 level post styloidectomy

I have no signs of intracranial hypertension on my scans i.e. empty sella, optic nerve so we are assuming the opening of the right ijv is compensating for me.

My left side is still completely clotted so I will likely be having it ballooned to see if we can improve the flow even just a bit.

You can see the clot at the very top here as well as the lack of flow until further down

For the pain I’m still experiencing in the surgical sites and as well as the old head and face pain, pinching and burning, we are still looking into treatment options.

I just had Botox in my masseters and it is already reducing the pain in my surgical/TMJ area (I don’t have tmjd) so I’m extremely pleased with that. I’m hoping to get in my temples next time as I think a big component of my pain is the clenching I am doing putting pressure on my facial/trigeminal nerves. Just a theory as the Botox is really helping.

I am also likely going to be starting gabapentin and see how that goes.

[Leah]

Congrats on your good results )). I also have Botox in my masseter and temporalis area. Temporalis was very necessary and helpful. So hopefully that will give you some relief. And I’m also on gabapentin. Tolerating it fairly well. I’m on 300 three times a day.

[Isaiah_40_31]

WOW! Really remarkable difference in the right IJV!! When you said the results were “drastic” my brain went to the negative side before I read the rest of what you wrote & looked at the pictures. I’m really glad to see such great flow in your open IJV. The left one looks a bit of a mess w/ that clot. Has your doctor or surgeon suggested blood thinners to try to get that thing to reduce/disappear? (Sorry if you’ve mentioned treatment previously, I don’t remember).

I don’t blame you for skipping the contrast w/ your MRV. That gadolinium is nasty stuff. The iodine based dye used for CT scans is much less concerning.

Great news that the botox is helping w/ residual pain. I’m very sorry you’re still suffering w/ that, but glad you’ve got untested treatment options to work with. I hope you’re able to get that pain to as close to non-existent as possible.

Thank you so much for sharing this update! Please let us know what ends up helping most w/ the remaining facial pain.

[elijah]

I’ve been on eliquis 2.5 for over a year now. The clot is likely fibrotic at this point and I’ll need venoplasty to try and open the vein up (assuming it can be). My Dr said that as long as he can get the catheter up through the clot he should be able to improve the flow there. How much is to be seen it’s currently scheduled for Oct 5th.