Eek, that’s pricey! I just had a CT with contrast, so I don’t know anything about the manometry, hopefully others can comment. It sounds like it should rule in or out jugular compression, and maybe will look at other vascular structures in the brain to see if there’s issues anywhere else?
Maybe @PatientD will be able to help?
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Thanks @Jules, I searched the forum but couldn’t see much for this. I was expecting £2-3k but this is way over what I anticipated. Hopefully someone has had this procedure and can give me a little more info.
I’m surprised that as a private pay patient, you weren’t given a discount. In the U.S. private pay patients are given a substantial discount (up to 75% depending on doctor & facility) off the total cost. I’m sorry for the strain on your pocket book.
I agree w/ Jules that the testing should help determine whether or not you have vascular compression. We do have at least one other member whose styloids aren’t long enough to be considered elongated, but due to the angle they’re growing, both IJVs are 90+% compressed so bilateral styloidectomy is in order in that case.
Nanometer tests the strength of your esophageal muscles & has perhaps been ordered as a way to determine if your styloids are affecting your swallowing?
They don’t do discounts for private healthcare here, it’s either NHS (free, but very long waits!), or you pay!
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@Jules i can’t even get an NHS referral. I’m with a GP practice that are still doing emergency only appointments. They closed down econsult 18 months ago because they couldn’t safely deal with enquiries. I went into the practice to request an appointment to discuss a referral to Mr Axon but they don’t deem my need an emergency so I had no choice but to go private and chose Mr Hughes over Mr Axon.
I’m pretty bitter that I’m now spending my savings to try and get help fast, having got nowhere with the NHS for 8 years! I know I’m not the first and won’t be the last to have been failed by our NHS.
Thanks for the replies.
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Different medical systems between the US & UK for sure!!
It’s just mad how some GP surgeries are getting away with this! There isn’t much consistency at all across the country…although I have relatives who aren’t far from you (New Milton) & they seem to have had great & quick care! 
I’m not surprised you’re feeling bitter, thinking of you…
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Hi @NRuflove thank you for sharing, it so helpful to follow your story but I am so sorry that you’ve been suffering for so long. Im so pleased that you’ve found Mr.Hughes helpful so far. I am also in the UK and would be looking at being a private paying patient due to NHS not able to help with these issues, though my GP is very supportive thankfully. It does seem a lot though to be paying £6K for tests, can you ask for a break down of the costs?
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Hi @LivvySheep
The breakdown I’ve been given for the cerebral catheter venogram and manometry is:
Hospital stay - £4,800.00
Consultant Fees - £600.00
Anaesthetist Fees - £450.000
1 Follow-up consultation - £200.00
I would have liked to have the procedure undertaken locally, however, Mr Hughes didn’t think there was anyone local, plus he says the radiologist at CCL has an interest in ES.
I’m trying to remain positive so if Mr Hughes can’t help me, at least its another test crossed off that will lead me one step closer to regaining a life 
.
I didn’t need a referral to see Mr Hughes, however, I did send him a copy of my CT image report that mentioned a diagnosis of ES. Seeing as you have a supportive GP, I guess he/she will be happy to refer you anyway, so you won’t need to go flapping a scan report under Mr Hughes’ nose whilst begging him to see you 
.
Best wishes and I’ll let you know how it goes for future refererence.
Nicky
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Hi
Following my catheter cerebral venogram and manometry a few weeks ago, I was due to speak to my consultant, Mr Hughes, today, but his secretary had to cancel the appointment and reschedule for 12 May. I know that’s only a week away but I’m so disappointed as I was so geared up for today being the day I’d find out what on earth is happening inside my head that has taken away any life that I had. I now have a copy of the radiology report and would very much appreciate any help in understanding some of it.
I currently feel dreadful. I can barely stand for a minute as the pressure in my head goes crazy and I feel as though I am underwater, I am dizzy when I start moving about, my severe headache is constant near the left occiput spreading to my left eye and nose, I am very nasally and feel congested even though my nose is actually clear, I feel as though I have an elastic band tied tight around my left wrist, my eyes feel cold, my throat feels as though someone is throttling me (alongside that usual globus feeling), I have severe pain just below and slightly behind my left ear, I cannot sleep on either my left side or back because the pressure in my head starts to build and I feel will explode and this all seems to be affecting my hands and feet as they are swollen and stiff feeling. Today’s blood pressure is 198/108 with a pulse of 72 and I feel as though I’m in a pressure cooker. The full list of my symptoms are never ending.
The report does recommend repeat cross-sectional imaging of the venous and arterial antatomy to compare it to previous imaging from 2018 (which showed no abnormality whatsoever, even though a consultant has now said it does show elongated, thicker SPs).
It seems that the imaging does not back up a diagnosis of VES but instead has thrown up abnormal venous anatomy. Am I correct in thinking that although I have abnormal venous anatomy, this is perfectly okay because it seems everything is somehow managing to drain? Also, its confirmed that I don’t have any significant pressure gradient. If that’s the case, is there any reason why I feel my head is a pressure cooker?
This actual report says:
IR CEREBRAL CATHETER VENOGRAPHY AND MANOMETRY - …
*Study Result
Narrative & Impression
Clinical information: ? Left vascular eagles syndrome.
Comparison is made with previous study dated: None available.
Findings:
Consent granted.
Left CFV puncture under ultrasound.
5 French involve the catheter placed in upper cervical jugular on the right. Unable to access right sigmoid and transverse sinus but large posterior fossa falcine sinus is present and navigated into the superior sagittal sinus. Venography shows minimal out flow via the transverse dural venous sinuses bilaterally with all of the superior sagittal sinus draining via the bilateral midline posterior fossa (falcine) dural sinuses.
From the torcula the left transverse sinus was accessed and venography showed hypoplastic left transverse sinus with more normal calibre in the lower sigmoid sinus and jugular bulb on the left.
Pressure readings were taken from the superior sagittal sinus through the midline posterior fossa dural sinuses to both jugular veins central veins, RA and IVC. Additionally the left transverse and sigmoid sinuses were catheterised and pressure readings taken.
SS - 23
Confluence 21
Torcular 23
*L Tran/Sig *
L Mid Transverse sinus 24
L Sigmoid sinus 24
L Jugular bulb 20
L Mid Cervical Jugular 24
L Brachiocephalic vein 22
Jugular bulb 20
R Lower cervical Jugular 18
SVC 19
RA 18
IVC 17
No significant narrowing at the level of the styloid process detected on either side.
Conclusion:
No evidence of Eagle’s syndrome affecting the venous outflow detected . There is no significant pressure gradient identified. There is abnormal venous anatomy with hypoplastic bilateral transverse sigmoid dural venous sinuses and dominant drainage via posterior fossa falcine sinuses. There does appear to be a channel available for cortical veins to drain the petrous region on the left and no clear functional obstruction of the left jugular system detected.
Recommend repeat cross-sectional imaging of the arterial and venous anatomy and compare with previous (I believe) in 2018.
Very many thanks to anyone that can relay the report to me in layman’s terms.
Nicky x x x
So hard when you’ve geared yourself up for an appt & it’s cancelled, especially when you’re feeling so rough, thinking of you…
I don’t know enough to comment on the report I’m afraid, I hope some other members can! Just that it mentions that they were unable to access the right sigmoid and transverse sinus, so maybe there could be an abnormality there, & it says minimal outflow from the transverse dural venous sinuses, I don’t know if normally you’d expect more? It does sound as if the styloid isn’t causing compression though, so you’ll have to see what Mr Hughes says about the rest of your venous anatomy. Have you ever been evaluated for TOS? Just you mention your wrists & hands feeling affected too?
Hang in there & hope that you get some answers next week 
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I’m very sorry about the appointment delay but am glad it was only postponed a week. Unfortunately, I’m in the same situation as @Jules not knowing enough about the vascular anatomy to comment. I also noted the same things in the report that she did, especially the minimal outflow from the transverse dural venous sinuses. That doesn’t seem like a good thing, but I’d have expected some comment about it in the conclusion if it was abnormal.
If your testing was done w/ your head in neutral & w/ you lying on your back, and you feel much worse standing up, perhaps you need the testing to be done while standing as that can change things for some people. There’s another member here who’s IJV function is pretty normal when she’s supine but gets pretty bad when she’s standing so she was tested in that position. It’s likely the styloids orientation in the neck is different when standing, & they put pressure on the IJVs as opposed to when one is in a more relaxed supine position.
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@Jules @Isaiah_40_31 Thank you for the replies.
I think I’m confused that things seem a bit of pickle but the conclusion doesn’t seem to indicate any big problem. Unfortunately, my symptoms are also bad when lying down with my best position being propped up in bed just a little whilst lying on my right side.
I had previously thought it was VES causing my issues but I’m now wondering whether its classic ES and a completely separate issue with my venous anatomy. I guess it could even be TOS, which I know nothing about (and has never been mentioned to me), so will have a look.
Fingers crossed Mr Hughes will be able to answer my queries next week although I’ve got a lot of questions to get through in a 15 minute appointment 
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Such a shame that you wait so long for an appt. & are only given 15 min. In the US initial office visits are often 30-45 min. Should be the same anywhere as that allows time for doctor & patient “to get to know each other.”
I also hope Mr. Hughes is helpful in figuring out what’s going on for you! 
Please let us know how your appointment goes next week.
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@NRuflove Here are my pressure readings to make a comparison. These were performed by Dr. Patsalides to me in Feb 2023. My pressure readings were done in only 3 different parts of my anatomy and were taken with varying head positions. Also I had a balloon inflated above the IJV stenosis to see how my collateral veins compensated (not too well).
Upper IJV - C1 Head Straight - 10 (Similar location to your Jugular bulb measurement of 20)
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 (Similar location to your Mid Cervical Jugular measurement 24)
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 (close to your Torcular measurement 23)
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
So the big takeaways are:
-
I assume these measurements were done in the same scale as mine, mm Hg. That being the case yours are all very high if your head was in a neutral position. There is a slight pressure gradient from the jugular bulb to the sigmoid sinus of 4mm Hg, but usually these docs want to see at least a gradient of 5mm Hg and usually more than that. Regardless your pressures are high and suggest you have IIH (Idiopathic Intracranial Hypertension), the cutoff is around 16mm Hg in the SSS and your at around 24mm HG. I found 2 studies confirming this, which I will list at the bottom of this post.
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Dr. Hughes says that both transverse sinuses have little blood outflow and classifies them as hypoplastic (although he seems to at least be able to access the left transverse sinus via catheter). Which could definitely cause high pressures in the venous sinuses. There would need to be large collateral vein formations before the transverse sinuses to compensate for something like this. He only mentions “cortical veins”, so its hard to tell.
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According to Dr. Hughes you do not have a IJV stenosis or styloid compression of your IJVs.
Without seeing your venogram and just based on these 3 findings, you may want to look into transverse sinus stenosis as the cause for the high pressure and symptoms you are feeling. This is very similar to IJV stenosis just a little higher up in the blood flow from the brain, so the symptoms can be similar. It may not be the transverse sinus, but its a good place to start considering you said you have a severe pain behind your left ear.
I hate to say this because you have been through so much already, but I suggest contacting Dr. Patsalides office and sending those scans to him for review. He will do a virtual consult with you and discuss his findings and possible options. The problem is that it could take months and your in a lot of pain now. Dr. Srikanth Boddu or Dr Kyle M Fargen, are 2 other options that specialize in this field as I know Dr. Patsalides is booked out for months.
I know you live in the UK and these US based doctors may not be an option for surgery, but I think its worth paying out of pocket for a virtual consult $250 (that’s what I paid Dr. Patsalides for 30 min consult prior to testing) to get their recommendation with a review of your scans. At least you will know what path you need to pursue moving forward.
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Thank you @GCD. I will certainly look at the studies and also transverse sinus stenosis.
I have a video consult with Mr Hughes tomorrow afternoon so I hope to get more information then but will review your information beforehand to ensure I can ask as many relevant questions as I can in my 15 minute appointment.
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Hope it goes well, let us know what Mr Hughes says…
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Following my cerebral venogram with manometry procedure 3 weeks ago, I had my follow-up appointment yesterday with Mr Hughes (ENT Head/Neck/Thyroid Consultant).
Having previously posted the imaging report of the procedure to the group a few weeks ago, it mentioned that there was no significant narrowing near the SP and no significant pressure gradient. However, having read your replies, and searched online, it did seem that my pressures were pretty high so I had written a list of questions to discuss with Mr Hughes.
Unfortunately, Mr Hughes told me yesterday that my results were normal. He did fleetingly discuss the abnormal venous anatomy that had been detailed in the report but went on to confirm that although the drainage doesn’t go the usual route, it is not cause for concern. I enquired whether the abnormality could be the cause of my issues and he he didn’t think so. In the report, the neuro-radiologist recommended further imaging to compare with old imaging from 2018 (which they had available to them but chose not to review themselves) to see if there is anything new now apparent but Mr Hughes said he didn’t think this was necessary .
The report also states that there is no evidence of ES affecting the venous outflow detected. I asked Mr Hughes whether it’s possible I have classic ES and not the VES we had anticipated but he felt my myriad of symptoms did not match with those of other patients with VES/ES that he has treated. When I asked if my symptoms could be the result of two separate ailments (ES and, perhaps, abnormal venous anatomy) he felt this could be possible. It was very much like pulling teeth as he offered no options as to what the problem could be.
I went on to explain the pain I am in and how my life now consists of sitting in a chair which is my only way to control my symptoms. I cannot lie down or move around because my head pressure goes crazy and, if walking, my balance becomes seriously affected. Mr Hughes then reviewed the imaging report again and noticed that the pressure measurements were different between my left and right. I asked him to confirm that the unit of measurement used was ‘mm HG’ but he didn’t respond. I said that I’d researched the pressure results online and if the readings shown are ‘mm Hg’, then I think they should be much lower than they are. He said that the neuro-radiologist was an expert in this field and he hadn’t mentioned anything in his report regarding raised pressure readings. Bizarrely, he then played dumb and made out he didn’t know what the readings should be. My partner then also chimed in that the venogram was completed only in the neutral position and twisting my head to the left or right increases my symptoms hugely so perhaps this should be tested in the next imaging session. Mr Hughes then changed his mind about the further imaging and agreed he would write to the neuro-radiologist to organise this and would also ask him to confirm the pressures were within normal limits as well . I am unsure whether he changed his mind because he felt it would be prudent to re-scan or whether he decided I was asking too many questions so it was easier to agree to refer me for the further imaging to get me off the call!
I have no idea what further imaging is being requested as Mr Hughes had no idea and that it would be up to the neuro-radiologist.
I know so many people on this forum are regularly fobbed off and that’s exactly how I felt after the consultation. I’ll have the further scans and hopefully they will finally rule ES either in or out.
Can I just thank people for their help so far. It is very much welcomed when you feel nobody else is listening.
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So sorry that you felt the appt wasn’t as helpful as you’d have liked, it’s a good job you were prepared & had a partner with you for support too…I hope that the further imaging requested does help & you can get some better answers. Thinking of you, it’s really frustrating
More hoops to go through but hopefully you’ll get somewhere…
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I say BRAVO to you & your partner for persisting with the questions until you came away with what you need - further testing that will hopefully be dynamic. Great that you did your homework & were able to speak & question from a base of knowledge!
Sad that Mr. H was dismissive of your symptoms & your initial test results. Sounds like he put too much faith in the radiology report & didn’t give it a good personal evaluation. Even an experienced radiologist can miss or skip over things or misinterpret what’s seen. We’ve got evidence of that on our forum for sure. It really doesn’t matter the reason Mr. Hughes relented to & is referring you for the additional testing. In the end, you had the victory!! Now I’ll pray that the new testing will give definitive results for you as to what’s causing your symptoms.
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