Get an angiogram if you think your jugular veins are 'compressed'

[coldbear]

Here’s mine - read as normal. Some days I believe it, and others I don’t

[KoolDude]

@coldbear I can definitely see partial empty sella on the Saggital image and CSF along the optic nerve sheath on the T1 Axial image since it is T1 the CSF would be black and I can see that along the optic nerve sheath.

BTW, mine was only noted in my 4th MRI report when I brought IIH symptoms to their attention and asked them to look for signs. If they are not having a high degree of suspicion they won’t even bother.

I think your guess is right. Have it a second look by another radiologist.

[KoolDude]

These are the same as the ones in above link but bit more clear images of the IIH signs on my MRI. Secondly, it is important to note I leak CSF through my nose from time to time and I see the clear fluid and sometimes it has metallic like taste. This might have reduced the Intercranial Pressure (ICP) enough not to cause papilledema although I have visual symptoms so do not give up if they do not find papilledema in your eye testing. I think @DogLover posted CSF leak & IIH study by a prominent vascular surgeon Dr. Higgins.

@DogLover

Hi again. I’ve been diagnosed with probable spontaneous CSF leak due to raised intracranial pressure. It started 10+ years ago; before that I used to get terrible postural headaches. I have constant fluid down the back of my throat, and sometimes my eyes seep constantly. Occasionally I get clear fluid draining from nostrils. @Kooldude is right I think that this is often missed because it alleviates pressure enough, albeit temporarily, so that an MRI shows normal, as mine was with just slight flattening of eye. Dr Higgins, who I am see, wrote a paper on it -
A paradigm for chronic fatigue syndrome: caught between idiopathic intracranial hypertension and spo (tandfonline.com)

CSF Fluid in the Optic Nerve Sheath (ONS) in this T2 weighted MRI slide (see the thickness of the ONS at the top of the ON)

Tortuous Optic Nerve (Red Arraows) and Flattening of the right globe (Blue Arrow) this is T1 contrast enhanced MRI

Partial Empty Sella

[coldbear]

I don’t see the images, but could be a problem on my end

[KoolDude]

Definitely not on your end. I did not properly pasted them. See if you can see it now. I reposted.

[coldbear]

I see them now - good looking scans! It does appear like you are solidly in the no-mans-land of moderately elevated pressure typical of IJVS and described by Higgins & Axon. Lots of minor changes to be seen, but not that one finding that really jumps out. Same for me. Pituitary looks compressed, but sella not totally engorged with CSF. ONS swollen and a bit bent, but not protruding into or flattening the globes. No papilledema. Hopefully one of us will get a repeat scan after decompression and see what if anything changes.

[KoolDude]

@coldbear Could not have said better than you did here. Wishing you all the luck! Too bad we have to play Pseudo-Radiologists. I guess desperate situations calls for desperate measures.

[KoolDude]

@coldbear Since you said we are similar in terms of head rotation, mine was found in the CT Angio but I really do not feel many symptoms when I rotate my head. I feel mild neck pain or subtle increase in the tinnitus. Since you are good with reading images. I linked the post below where I posted the three images from CT Angio that shows the collateral flow when I turn my head left and when neutral but no collateral is evident when I turn my head to the right which was interpreted as Styloid compression easing on the left jugular vien. You might be interested in them.

@coldbear

I think your situation actually sounds quite similar to my own - rightward head rotation relieves my symptoms, while neck flexion and leftward rotation provoke them.
Have you posted your imaging of the empty sella and optic nerve issues here before, and were they noted by radiology or self-diagnosed? I would love to compare to my own. What’s your hypothesis of how they developed despite the normal pressures during measurement?

@KoolDude

I do not mind getting a good physio but since my jugular vein is compressed and I do not know if there is a good physio-therapist that won’t make things worse by messing with my neck muscles & bones.

For example, when I was doing the dynamic catheter angiogram/venogram, they found when I turn my head to right, they do not see a collateral filling via condylar vein which was translated as a temporary relief of styloid & C1 compression but on head turned to the left and on a neutral position, the compression does not get relieved hence the prominent appearance of collateral venous filling. So provocative movements, while they could potentially relieve my symptoms, they also have the potential to make things worse. so I am undecided on this at this point. May be after surgery to make my neck bit more flexible.

BTW, I put some of the images of head movement during the Catheter Angiogram along with the report below.

[Isaiah_40_31]

@coldbear & @KoolDude, Thank you for the interesting discussion. I’m very sorry for both of you having to wait so long for surgery. I hope for both of you that the surgeons you see do surgeries that are healing & revitalizing so you’re able to ease your way back into “the game of life” & play it fully.

[KoolDude]

Thanks @Isaiah_40_31

[Bc2]

I just had an angiogram venogram and balloon occlusion. The pressure in every position I put my head was 18. When I touched my chin to my chest it immediately shot up to 34. My styloid process are the largest Dr. P has ever seen no and in every way. I’m new here an in fact this is my first post. How do you attach a photo and I will post image of my styloid process being just about the same size as my jawbone

[Isaiah_40_31]

Hi @Bc2,

You attach a photo by clicking on the underlined upward point arrow in the bar at the top of the text box. That will allow you to post images from your computer to our site. If you have trouble please let me know, & I’ll try to help you further.

[Bc2]

Thank you I will give it a try.

[Bc2]

I’m getting an error message cannot embed media

[Isaiah_40_31]

Try dragging & dropping the images into the text box from your computer desk top. If that doesn’t work, you can respond to the welcome private message I sent you & upload pics there. I’ll move them to the public forum. Our site is set up so that new members don’t have full privileges of older members until the new members have posted several times. I think adding images is one of the privileges that is included in that. We recently had another new member who had the same problem.

[Bowser]

@nolan If you can answer, I had some questions for you:

1. How long were your styloids?
2. Have you considered a diagnosis of Hyoid Bone syndrome since that seems to be the only other thing that could explain your swallowing issues?

[nolan]

Hi,

1. I dont remember but not super long
2. The surgeon didnt see any abnormalities with the hyoid bone

The main thing that explains my swallowing issues is cervical instability which I’ve been dealing with since before the styloidectomy

Overall, I have improved somewhat since my posts and surgeries although I have done many other treatments afterwards so its difficult to say if the styloidectomies alone were the cause of the improvement.

[Jules]

I’m glad that you’ve found some improvement @nolan , whatever treatment it was which helped!

[PatientD]

Hi

Agree very interesting topic.

1. Elijah your report was very impressive in its detail. We are lucky if we get more than one or 2 lines of text in UK reports. They only record “exceptions” and work off very wide ranges of what is “normal”. They only stent if gradient is more than 8. My last gradient difference of 1 was written up as “no gradient difference” but pressure of 20 just behind right ear was truly unbearable in reality. I do think using any sedation will affect results and in UK I did not have any sedation. Bit odd to feel wires moving around inside brain, can feel tightness but no pain as brain itself has no pain receptors.

2. Puzzled why Kool Dude report contained almost no measurements on right side of brain, but the pressures on left side were clearly higher than few on right side. I think comprehensive measurements & comparison is important. For example on first Venogram I was not told that reason so few pressures on right were reported was due to narrow JV preventing access to right side of my brain. After decompression at C1/C2 they could access right side. It showed pressure on right was higher than left side and that supported my case for revision surgery (but I had to demand report of gradients as not provided at outset). I don’t know why medics cannot see importance of proper detail and respect a patients right to access their health data, but most of them don’t.

3. Absence of upright diagnostic imaging tools continues to baffle me when humans spend majority of time upright and my symptoms were always worse when upright.

Take care. D