We have at least one other member whom Dr. Patsalides referred to Dr. Costantino, as well.
I am so glad that you made it to other side. It is normal for the coming weeks to feel up and down and pain might get bit worse but that is normal healing process. Ice, ice to keep the inflammation and swelling down. Wishing you a full recovery.
(Thank you all for thinking of me and my upcoming surgery! —violin)
H GCD, I hope you are recovering just fine. I know the first week is a battle having gone through Styloidectomy myself I know how it feels. I know yours will even be worse since C1 and Styloid were both removed. Hang in there.
I quickly took a look at the MRI, Nothing to report other than C1 compression of your IJV which you already knew. However, I was able to segment the left Transverse Sinus (TS) to confirm that it was continuous and dominant. You can also see in the 3D segmented image how much the C1 atlas was compressing it (Yellow arrow)
One more thing. I see something on your teeth and I suspect it is metal filling artifact of T1 MRI. See the Image below (Cyan arrow). Can you confirm that it is actually metal filling but nothing else. Other fillings do not show up like this on MRI so it must be METAL one.
9 Days post op now. So here’s my update.
The mild headaches stopped at about day 7 after having a really bad headache on day 6. Still have the head pressure and brain fog that I had before the surgery.
I forgot to mention in my previous post that the tinnitus sound (high pitched electrical noise) for me increased post op. I assume it is due to the swelling increasing the symptoms temporarily. So it will be interesting to see if it correlates with my head pressure symptoms as time goes on.
Also, my left ear and area around the incision is numb. My surgeons warned me before surgery that this was unavoidable as they have to cut through a small nerve to reach C1. They assured me that most of the numbest will dissipate with time.
I was cleared by Dr. Lo in my post op appointment to go back home on day 6. Day 7 I flew back home and was able to walk around the airport by myself without any issues. Day 8, I worked at home remotely and today, day 9, I am back at work, but I sit behind a computer the majority of the time.
So I’m pretty much back to normal now, I just can’t lift anything too heavy or exercise. I can feel the tightness of the stitches in my neck when I turn my neck, but it doesn’t hurt. I just limit the neck movements mainly when driving.
3 days post op - I was able to remove the first big bandage. There is still a clear bandage on during this picture.
7 days post op - I removed the clear bandage. You can see the swelling along the incision line. There are dissolvable stitches still keeping it all together.
Glad to see, you are making a rapid recovery in terms of wound healing. As you guessed, it is probably swelling that is collapsing the thin-walled IJVs.
Here is @M_UK who went through both Styloidectomy and C1 trimming in UK by Dr. Axon just like you. He did an excellent comparison Pre and Post surgery IJV flow 9 months afterwards. He quantified it using computational fluid dynamics.
We also discussed it here after 5 days of his surgery. It also includes links to studies of neck operations and IJV narrowing as result of it. Kinda gives you perspective on what to expect. Hang in there. You need at least 3 months to assess it. See the study in the link below.
It’s very kool of you to make the images into a 3D reconstruction. It’s way easier to visualize the IJV stenosis since you isolated just the venous system.
I had a root canal in my left upper molar, so that is the artifact that you are seeing in my teeth. You don’t miss anything…
@kooldude Thanks for resharing @M_UK posts. I had read them before, but mostly forgotten them at this point. The CTV image he shows post op and a comparison 9 months later is a great verification of the swelling that takes place. So I will try to be patient.
Also here is a link to my venogram MedDream viewer (dicomlibrary.com)
These are my pressure readings during the procedure:
Upper IJV - C1 Head Straight - 10
Upper IJV - C1 Head Right - 11
Upper IJV - C1 Head Left - 11
Upper IJV - C1 Head Neck Flexion - 20
Upper IJV - C1 Head Neck Extension - 9
Mid IJV - C4 Head Straight - 9
Mid IJV - C4 Head Right - 8
Mid IJV - C4 Head Left - 9
Mid IJV - C4 Head Neck Flexion - 7
Mid IJV - C4 Head Neck Extension - 8
SSS Head Straight - 14
SSS Head Right - 13
SSS Head Left - 13
SSS Neck Flexion - 22
SSS Neck Extension - 11
SSS Balloon Inflated Head Straight - 24
SSS Balloon Inflated Head Right - 30
SSS Balloon Inflated Head Left - 20
SSS Balloon Inflated Neck Flexion - 40
SSS Balloon Inflated Neck Extension - 16
I was able to find moderately Dilated Optic Nerve Sheath (ONS) with CSF Fluid which is a known marker for raised intercranial pressure. So perhaps, your Optic Nerve could have been under CSF pressure. But then you already know that since you have all the signs of IIH. Let us hope all this disappears in 3 months time after IJVs open up.
MRI T1 shows Dilated ONS with CSF Fluid ( Red Arrows - CSF is Dark on T1). The right Optical Nerve Sheath appears to have more CSF Fluid on one side then the left has equal ONS sides. Do you feel more eye symptoms on the right eye?
MRI T2 shows Dilated ONS with CSF Fluid ( Red Arrows - CSF is bright on T2). It only shows one side due to MRI sequence timing. I am sure it exists both as the MRI T1 above shows.
@GCD Awesome, Will have a look at the Angiogram. Those pressure readings are high. I hope they come down.
The incision is looking really good- once it’s healed completely then you can start to massage it…glad that you’ve been able to go back to working already & that the headaches have eased. Numbness around the ear is very common after surgery, mine’s never gone completely but it’s a small price to pay…I hope that the head pressure & tinnitus improve soon
@KoolDude this is actually really helpful. I tried many times to look for excess fluid in the optic nerve, but could never see it. However there it is! Thanks!
Hi Jules! Thanks for response. I agree the numbness is a small price to pay.
Yeah, you are right it is bit difficulty spotting it on T1. If you had MRI FIESTA sequences, that one depicts ONS better. You can also see most of cranial nerves as well. Even normal MRI Axial T2 with large number of slices (thin slices) can capture it. The problem is your T2 is standard 27 slices so it does not capture the whole Optic Nerve and it sheath. I had to go to T1 for ONSD clues.
@GCD It would be amazing if you could share the imaging with us when you eventually get it done, if possible.
I would love to see the IJV, and how much of the styloid and C1 was removed.
I have looked into the Catheter Angio/Venogram. Nothing new to report except that I see potentially some dynamic involvement of SCM muscle and Internal Carotid Artery (ICA) when you turn your head to the left and to some lesser degree when you flex your head. Really do not know the significance of them since the most of the compression is done by C1 (thank God it is out now). After 3 months or so, you should be able to do another assessment to see if left IJV has opened up fully.
Neck Flexion : Neck flexion images show severe Left (LT) IJV narrowing. You can see the blood is congested around the Jugular Bulb area (Blue Circle) and collateral forming (Blue Arrow). I think it is being squeezed by C1 (Red arrow) and Styloid (Light Green Arrow). I also think Carotid Artery (ICA) is also involved down below as the LT IJV appears to be slightly pushed inward in the area of ICA (Big Yellow Arrow) when you flex your head.
Here is an internet image showing how the 2 IJVs and other veins interconnect so you have an idea when you see the blood following from left side to the right side (Light green arrows) due to compression. Since you are an IT guy, think of full mesh topology as vein interconnect like network.
Head to the left : Turning to the left appears to be second to flexion in severity of left IJV compression. Major collateral veins become prominent (Blue Arrows) and an interesting observation can be seen that the left IJV gets compressed in mid section possibly between Carotid & SCM muscle (Yellow Bars). I speculate that this could be due to the left SCM moving inward as your turn the head left compressing the IJV against the ICA since IJV runs between the ICA & SCM. The first image has pattern of ICA compression of IJV. Also the second image shows the collaterals (connecting veins) going across (Blue arrow) and draining into the right IJV (Light green arrow). This is different when the right IJV is drained into by the right transverse sinus which is coming from the brain. This is potentially caused by left IJV compression getting worse in the left turning position hence draining into right IJV through connecting veins.
Here is an internet image showing ICA compressing IJV. This is not your case as this compresses ion happens in a neutral position (Non-Dynamic compression of IJV by the ICA). This is to show you the compression pattern that appears in the first image when the head is turned to the left. (Source Study: Internal jugular vein stenosis induced by tortuous internal carotid artery compression: two case reports and literature review - PMC)
Here is an internet image from a study of dynamic SCM compression of left IJV (Source Study: Case Report: Moving target: transient rotational stenosis precipitating jugular bow hunter's syndrome - PMC). I am not saying you have this issue but to illustrate the movement of SCM muscle when you turn your head left can mimic this type of compression. It appears it moves inwardly pushing the left IJV inwardly towards the Carotid Space since IJV runs between the ICA & SCM (Perhaps, forming temporary, dynamic compression from ICA & SCM).
Head in neutral/Straight : In neutral position, C1 (Red arrow) appears to be doing most of the compression and collaterals become prominent (Blue arrows) and can be seen draining since IJV is compressed. I guess you already know this.
Head to the right : Turning to the right appears to be relieving the compression on the left IJV and few to no major collaterals can be seen (blue arrow). This is similar to mine where looking at right appears to be relieving compression and like yours, no collaterals are seen. I speculate that IJV might be moving inwardly away from the nutcracker position of the C1 & Styloid area (Red Arrow).
If you have not seen it, Here is where I talked about my dynamic angiogram with images. Like you, in neutral & left turning exasperates the left-sided IJV compression of C1 and Styloid but right turning relives it.
Today is day 22 post op. I have almost normalized to level where I was before surgery, so no relief from any actual symptoms yet. I have noticed the swelling has slightly gone down in the last few days. So I’m not sure how long most people experienced noticeable swelling, but mine is going to be easily 30+ days.
I have been gone on a family vacation for the past week. I wanted to post some updates and replies while I was away, but just found it too cumbersome on my phone.
I probably pushed myself way too hard the last week, lifting kids and heavy suitcases because I don’t feel any real pain from the surgery. I limited my picking up of heavy objects to the right side and not the side of my surgery. However, I am sure this has prolonged the inflammation around the site of the incision. So don’t go by my example.
Here is a picture of the incision, which is healing up nicely.
Hi @Buzz. I am having a CT with contrast done in the next 2 weeks and I will post the scan images and full scan once I get a hold of it.
I have had a MRI with contrast, fluoroscopy with contrast and CBCT. So I guess I can cross this type of scan off the list…
Hi @KoolDude, as usual you really went above and beyond when dissecting my venogram. I’m glad that you laid out so many visuals for other potential suffering VES patients to help look at and compare to their own scans.
I looked at this reply a few days ago on my phone, but didn’t fully absorb some of the details.
Comparing the neutral vs the turned to the right head positions are great visualizations of what to look for with collateral vein drainage. It also shows the need for taking the scans in varying head positions. Before my surgery, Dr. Patsalides told me to try turning my head to the right for extended periods of time and this is obviously why.
The other important thing you picked up and that I could never explain was the interference by the SCM muscle and possibly the ICA. I couldn’t figure out why the in the left head position the stenosis appeared much further down, but I think you nailed it.