This is my first post so hopefully I’m doing it correctly haha. Just to give some context, I had a spinal CSF leak for 4 years, then have been in high pressure for 8 years and only started investigating venous congestion this year which led me to seeing Dr. Hepworth & Costantino who both suspect bilateral jugular compression between C1/styloid. They have both mentioned it is severe enough to be concerned, but that it’s a borderline case as there are some with similar imaging but asymptomatic.
Dr. Costantino has offered me surgery, and wants to address the right side. Hepworth’s NP has submitted me for surgery, but wasn’t sure if Hepworth would want to decompress the left or right.
I had the cerebral venogram done which I will attach the pressure readings. My main question is I thought that Dr. C. would want to address the left side first (it seemed he suspected it was more of the culprit since they did 9 sets of imaging on the left and only 2 on the right on the cerebral venogram). There was a pressure gradient of 4 mmHg on the left, but my right side is 17-18 mmHg all throughout. However since my symptoms were worse when doing balloon occlusion on the right, and my overall pressures were higher on the right, Dr. C wants to address that side.
So I was just curious on your thoughts if balloon occlusion is a helpful way to determine which side should be addressed - regardless of the absence of a gradient. It does have a higher flow, if that is any indication. Hepworth’s NP said she can tell the left is more dominant in the CTV.
LEFT SIDE PRESSURE:
Posterior superior sagittal sinus: 12 mm Hg
Torcular Herophili: 18 mm Hg
Left transverse sinus (mid): 16 mm Hg
Left transverse sigmoid junction: 16 mm Hg
Left sigmoid sinus (mid): 13 mm Hg
Left jugular bulb: 13 mm Hg
Left proximal internal jugular vein: 14 mm Hg
Left distal internal jugular vein: 10 mm Hg
RIGHT SIDE PRESSURE:
Right transverse sinus (mid): 18 mm Hg
Right transverse sigmoid junction: 17 mm Hg
Right sigmoid sinus (mid): 17 mm Hg
Right jugular bulb: 18 mm Hg
Right proximal internal jugular vein: 18 mm Hg
Right distal internal jugular vein: 18 mm Hg
Searching through the threads has been so valuable and I feel so incredibly lucky to have joined this group. Thanks for taking the time to read this!!
I’m sorry my answer won’t provide you much help as I a don’t know the significance of the venogram pressure gradients i.e. what demonstrates compression vs what demonstrates more normal blood flow, but regarding which side should be done first, there isn’t always a clear answer. Some doctors will give a personal opinion based on his/her experience whereas others will ask the patient which side is more symptomatic & then will choose to do that side.
If you’re game to get one more opinion, you could see Dr. Nakaji in Scottsdale, AZ, as he is also an excellent vES surgeon. Maybe getting that third opinion will provide the input you need to feel comfortable w/ starting on one side in particular.
You’ve lived in pain w/ IH for long enough. I would guess getting either side opened up would help relieve that to at least some extent. I think Dr. Hepworth is a little more conservative in shaving C1 than Dr. Costantino so there is that to consider, too.
Thank you for such a kind and thoughtful response!! You’re right I’d feel more comfortable proceeding with a third opinion and so I will see if I can get an appointment there, thank you!
That is my big concern too with the C1 and don’t know what to make of it. On the Facebook group I’ve seen several people who went to Hepworth and he didn’t shave off enough of c1 so they ended up going to Dr C… and he told me it’s not so much a ‘shave’ as amputation & that he really sees much better results that way. Is the main concern with this approach possibly contributing to cervical instability? Or is there additional risk/concerns to that?
@leeski do you have access to your CTV? If so we can maybe help you determine why Dr. Hepworth is wanting to target the right first. Sometimes it’s based on the jugular (as your post may suspect) but sometimes it’s based on the angles of the styloids and which one poses a greater risk to your nerves and ICA. So IJV-wise you could be worse on one side, but more of a health risk on the other.
If you do have access to your CTV I can help you look through the axial view to see the visual degree of compression at C1 by the styloids, where your styloid tips are, and why Dr. H might be targeting what he is
I don’t know much about the pressures either so can’t give you an answer about that I’m afraid! Usually members will be guided by their doctor, as it does depend on how much compression there is, but also which side is the dominant IJV if one is. But often we have more nerve pain one side than the other so sometimes there’s a preference because of pain which side is done first. Do you have much pain, or is it the vascular symptoms which are the worst?
We’ve had quite a few discussions about whether removing styloids and also C1 processes contributes to instability & unfortunately there is no clear answer! Even amongst doctors there isn’t agreement. In theory if the ligaments holding the C1 & C2 processes together (intertransverse ligaments) aren’t removed then it shouldn’t be more unstable- whether Dr Costantino removes the transverse processes that far & detaches the ligaments I don’t know, that’s something you would have to ask him I guess? Other risks of removing too much of a transverse process is the risk of bleeding- the vertebral artery I believe they would have to be careful of…
It is a tricky decision which doctor to have surgery with, as we’ve had a few members who have been told different things by the 3 most well known VES doctors! I guess you perhaps have to go with your gut feeling , with whichever doctor you feel most confident with?
This may be all stuff you already know, and it references stenting, not decompressing, but there is a section on gradients that I found interesting. Fargen says the highest gradient he has ever seen in the jugular is 8mmHg, and that 3 is normal in people with symptoms. Dr Hui recently told me as well that because of compliance –the ability of the veins to stretch, I think–anyone with connective tissue disorders may have negligible gradients in the neck where there is room for the veins to expand under pressure. Just thought it might be of interest if you haven’t seen it already
That’s the difficulty in assessing IJV compression, and probably why radiologists have a hard time reporting it. One person could have 1/4 the size jugular on both sides and not experience symptoms, while another person may feel like their head is going to explode. Makes for those experiencing the symptoms having a hard time getting proper diagnosis.
I see IJV compression like cavities. Last summer I had 7 cavities and didn’t go to the dentist for a couple years because I didn’t have any pain. Another person with 1 cavity could be in excruciating pain - do we not treat their cavity because I had no pain with 7 of them? Of course we treat them. I wish IJV compression was viewed this way. If someone with intracranial hypertension symptoms had all labs, blood work, blood pressure, ect lead to dead ends, then I don’t see why we don’t treat the IJV compression when it’s the “cavity”.
@TML I would add one word to your comment - symptomatic i.e. “then I don’t see why we don’t treat the IJV compression when it’s the symptomatic cavity” (vs. the non-symptomatic cavities).
It’s actually Dr. Tobias who removes the whole transverse process/tubercle of C1 during the surgeries w/ Dr. C. Dr. C does the styloidectomy. It is the full removal of the TP of C1 that has come into question as to whether or not it worsens or even can cause CCI/AAI, but as @Jules noted, there are ligaments that joint each vertebra w/ the next one in line on both the left & right sides & provided those ligaments stay intact, there should be no initiation or increase of cervical instability. The bigger problem is the vertebral artery which potentially becomes more vulnerable when a significant section of C1 is removed.
We have also had several members who’ve gone to Dr. C for revision surgeries because Dr. H didn’t shave enough off C1. I believe Dr. H tries to be conservative & remove as little as he feels is necessary in each case. In some situations, what he takes off is sufficient, but in others it’s not. I do know of at least one case where Dr. H did a revision for a patient who went to Dr. C first so in some ways it’s a revolving door w/ one doctor indirectly helping the other.