Just reaching out to see how many others have dealt with visual snow symptoms such as light sensitivity, ghosting images, after images, floaters, etc.
Has anybody seen improvement after their surgery? I’ve talked with a few who have. I believe for a lot of people suffering with visual snow and tinnitus this is the cause. Several of my doctors have confirmed slight swelling of the optic nerves and pressure on the hypothalamus and surrounding structures.
Is the swelling of the optic nerve/pressure on the hypothalamus & surrounding structures caused by ES or is the cause unknown, @Msdstc? I am sorry for these ongoing symptoms you’re having. So frustrating.
It’s eagles. The c1 and styloid are fully blocking my ijv on both sides. I’ve had 2 failed surgeries on the right side so far. Setup for Hackman hoping for the best
@Msdstc I do have all the symptoms you mentioned. Palinopsia (after images), floaters, weird movements on the corner of peripheral vision. Shimmering (resembles mild visual snow)…etc. below is a list of my symptoms
- Muscle stiffness - neck, face, legs and arms all - right side more pronounced
- Diffuse muscle twitching
- Pressure headache with pulsation
- Memory loss, poor concentration
- Reading and writing difficulties
- Progressive Bilateral snhl hearing loss
- Loud tinnitus/ringing - pulsatile tinnitus
- Palinopsia - seeing after images
- Seeing distorted object sizes - micropsia & macropsia and warped surfaces.
- Seeing halos around light and vibration
@Msdstc question regarding the second surgery. Did they remove only portion of the Styloid ? Did the doctor used endoscope to operate ? I think you said the incision was small. Wonder why he does not remove the entire Styloid since you had vascular eagle.
I hope that your next surgery is more successful!
I had IH symptoms from bilateral jugular compression, but didn’t have any eye trouble, luckily. Thinkin of you…
I pleaded with him prior to remove the entire styloid but he was pretty confident it wouldn’t be an issue. Unfortunately it didn’t make much of a difference for me. I did notice immediate improvement but then suddenly things went track to where they were. I’m setup for Hackman now in late march. I have every single symptom you listed btw.
@Msdstc i wish that things go smooth this time around. I did follow your your case closely as I am afraid I might go down the revision surgery route as I feel my current surgeon here in Canada is not experienced enough with Styloid removal and my Styloid is small ~ 1.8 cm and compressing my ONLY dominant jugular vein at the base of the Styloid as the other jugular vein is small and hardly draining my brain at all. C1 is also compressing it along with the Styloid.
I know Hackman usually removes it to the skull base so he is sure bet. Did you have second CT scan after the second surgery that showed the Styloid was still compressing? Or he told you that he could not get it all?
Had another ct and it’s still compressing. I probably need some c1 work eventually but for now I want to get the styloids done and see how I bounce back. What I’ve learned from all of this is the surgeon is absolutely key, even if you’re working with somebody who seems confident, so your research find somebody who has worked on this condition specifically
Dr. Hepworth does not do C-1 work, but he has liberated many an IJV for our members. He works w/ a vascular surgeon during vascular ES surgeries & has learned over time that the IJV can be slightly relocated away from the tp of the C-1 in order to reduce or stop compression. This is a less risky surgery than shaving C-1. Might be worth asking Dr. Hackman about that.
@Isaiah_40_31 Do you think Dr Axon knows of relocating the IJV away from the C1 - and could do that rather than shave C1?
I have not heard of him doing that, but I would sure ask him about it. You could mention Dr. Hepworth’s approach & ask if it’s something Dr. A has ever done. Different doctors have different philosophies & different experiences even w/ the same types of surgeries. I expect each doctor gravitates to the surgical strategies that have been tried & true for him/her.
I have some of those symptoms. Kept getting new glasses and it’s not helping.
I have had visual snow, floaters, halos, light sensitivity, and several of the others as well. My left IJV was completely occluded and my right was 50% compressed. The CT Venogram showed that my brain had seemingly re-routed blood flow through an alternate source as a safety mechanism (our bodies are wild). I just had my surgery done with Hackman a little under 2 weeks ago. No changes on these symptoms yet, but as many people on this forum say, the results can take some time, especially since the IJV is subject to some post-op swelling. I also have diagnosed CCI, which may be playing a role in some of my issues as well, so only time will tell.
I hope your experience goes well! I’ll let you know if my visual symptoms subside.
I’ve just joined and I thought I’d share with you that my cognitive symptoms are extremely similar to yours, my general symptoms are very similar too, except I experience visual snow. My styloids are not long either but angled in such a way which makes it appear like they compress my jugulars when my head is in certain positions.
About 3 weeks ago I had a vascular sonographer confirm via ultrasound that both of my jugulars have significantly reduced blood flow, the right one being the worst. I’ll hopefully be getting a report on this from my vascular surgeon this week.
Getting a diagnosis has been very hard so far. Would you perhaps be willing to take a look at my CTV still images to see if you think it looks like my issues are similar to yours and worth pursuing? A very kind FB friend has confirmed so far that I have collaterals around C1, my axial images show significant compression at C1 it seems and my styloids, although only mildly elongated, are at a dodgy angle which makes it look like they are playing a part in contributing to my symptoms. The more opinions I can get the better. I hope this isn’t too much trouble.
Yeah that rerouting is called collaterals. How were your eye exams? Definitely keep me updated. One thing is that sometimes you still need a balloon or stent following styloidectomy. Do you plan on doing follow up imaging?
Yes, I am planning on requesting another CT Venogram to see if they are flowing normally or if they will need work done. To date, my vision has been 20/20, though a little blurry in my left eye (completely occluded side), I have had a retinal scan, another type of test done, and visits to multiple eye doctors. Other than some local inflammation, nothing noteworthy has come out of an eye exam yet at this point (which I’m chalking up as a good thing).
Welcome to our forum, @jimjammer123! I’m sorry to read about your symptoms & lack of diagnosis. I assume Jules mentioned to you about Mr. Axon. He would be the ideal ES/ENT specialist for you to see since he has loads of experience w/ vascular ES. I know you may have to travel a distance to see him, but it would be very worthwhile.
@jimjammer123 glad that you found this place as it helped us all a lot. I would love to help in whichever way I can. You can send/post the pics for us to take look. There are a lot of folks here that can assist as well. Jugular vein Stenosis have myriad symptoms and varies from individual to individual. Also the degree of compression varies among individuals producing different intensity of the symptoms. So it is interesting that yours is similar to mine.
Yes she did thanks. I’ve already seen him via zoom and he said the only thing he could see was mild jugular vein stenosis at C1, which in itself could be considered an incidental finding. He did say I should see a neurosurgeon if I wanted to get a catheter angiogram, but that was it really.
Although symptoms can be similar with all these different disorders, my symptoms are strikingly similar to what people with jugular vein issues have, I don’t get very much pulsatile tinnitus, which I’ve learnt has worked against me when trying to pursue treatment with Axon.
I have a FB friend who’s having surgery with Dr Axon very soon, she showed me side by side imaging of various angles of our CTV’s and our imaging looks almost exactly the same, so she’s just as confused as I am. Also just to add, our symptoms are very similar too.
I had Dr Liu (neurosurgeon from the US) say my MRV showed bilateral jugular vein stenosis and thats what gave me a the confidence to pursue seeing a much more affordable (compared to Higgins) top interventional neuroradiologist in the UK a while back, but Liu was thrown under the bus by this specialist as money seeking to make me get expensive testing done… He did order me a CTV to rule things out but ultimately said there was nothing wrong with the scans.