Just to let you know I managed to get one of Dr Hughes secretaries to upload my imaging so he could see my CTV.
Apparently after viewing them he was “happy to see me”…
As someone who’s been burnt by my fair share of specialists I felt that that was a pretty vague and unhelpful response, so I asked for clarity on whether he could provide some concrete info on something he saw in my imaging which made him go, hmm I need to see this patient. Apparently his response was my styloid SEEMS to be impinging on my jugular vein. I know I probably sound overly cautious, but even that response was slightly underwhelming to me, as I feel if I consult with him and he has a proper look, he might say oh well actually it doesn’t look as bad as I thought, or this that and the other and gives me the dreaded all clear.
I think, in an ideal world, if the consult was say 80-£100 I wouldn’t hesitate for a second in booking a consult, but its £300 for only 30 mins…and then £250 for 20 mins if I want any further consults.
This whole moan aside , does he take into account any nerves, muscles, etc that could be affecting the flow of the jugular vein in surgery? Did he say how many of these surgeries he’s performed?
Hi, I know it’s frustrating not to get definitive advice but tbh I have found most medics, even the good ones, are like that. Some are honest enough to say they don’t know for sure but “we think it’s this”. I was told by Queens Sq my situation is beyond current knowledge of Neuro and most patients like me will just get pain meds. Getting a view before seeing them/paying fees never worked for me in past.
I don’t think there are any UK based surgeons apart from Hughes or Axon who can/do remove styloid to skull base, so choice is very limited.
I agree it’s expensive but I think Hughes is less costly than Axon to operate.
I found Hughes by looking for his published research papers on Eagles. I recall one, not sure if are others now. I think he mostly helps cancer patients but not 100% sure.
In operating he does tackle styloid & ligament & cuts/divides digitastic muscle to gain access. For me it’s been a difficult op to recover from at week 6. But my VES was so bad it’s the lesser of two evils.
I had my first appointment with Mr Hughes last week. I’ve been meaning to do a full write up for the forum but I haven’t had the energy yet. I will try to do it this week!
But I wanted to chip in here and say that I went in “cold” to the consultation (as in, he hadn’t looked at my imaging even though I sent it in advance to his secretary). Luckily I brought it on my laptop so we were able to look at it during the consult.
Based on the level of compression he was willing to tentatively approve surgery, pending a review of my imaging by one of his colleagues, mainly to look at styloid length I believe. However, I think a key factor in persuading him to approve the surgery was the fact that I had a letter from a previous appointment with Dr Higgins saying that he thought my jugular compression was contributing to my symptoms.
I’m currently in the process of cold calling loads of ENT and skull base surgeons to get a second opinion, and trying to find someone who takes it down all the way to the skull base.
So for jimjammer123 I’d say
I didn’t ask how many styloid surgeries he’s performed, sorry, would have been a good question! But I got the impression it was a decent number. Mainly for “regular” Eagles.
The nerve / jugular side of things seemed relatively novel to him. The vibe was pretty much “I can take it out and it might help, the main risk of the surgery is that it doesn’t help”. Which is perfectly acceptable risk to me!
Given his secretary’s communication with you it sounds like there’s a decent chance he’d be willing to do surgery.
a) He was interested in styloid length. If yours are long that will help!
b) I’ll include an image of my level of compression so you can compare yours.
c) If you have a letter from any specialist suggesting a possible link between your compression and symptoms I think that would help. Not sure if @PatientD had this?
If you do have a consultation bring as much as you can on paper / on laptop or tablet. I try not to walk in with a huge stack of papers as I don’t want to give the impression of “medical nutter” that we are often lumped with, but being able to pull out some evidence on your laptop can be really helpful.
Hope this is helpful, feel free to ask if there’s anything I’ve left out. I’ll also let you know if I find any alternatives to Axon / Hughes based on my calling around.
Do you know to what extent the digastric muscle is cut, i.e. fully separated or just cut into? And is it expected to heal back together?
Sorry to hear you’ve been having a rough ride. From what you’re saying it sounds like the VES symptoms have improved somewhat but the surgery has brought out other symptoms/issues?
Thanks. I think ves surgery has helped. But wound healing & fluid trapping above/around wound still an issue. Will take time.
He said he disects that muscle then sews it back together on way out so it heals in time. I have op report in email jungle so will see if can find part that describes op procedure & post it. D
That was a smart move, I’ll need to find one of his papers. I’ve done this too a few times when going on google scholar in the past and for some reason didn’t get very far with finding a surgeon.
Interesting to hear he doesn’t solely go in to take the styloid out and shut up shop, he takes into account any fibrous tissue strangulating the jugular or anything looking particularly tight that could be causing a problem. Axon is 11k, Heim is roughly 12k and Hughes is 5k, i’m sure you can guess which one I have on my radar the most!
As much as it’s been a difficult recovery for you so far, I’m glad to hear you felt it was the right move, as it sure sounds like it. I can’t decide which one of getting the styloid out or having a c1 trim would be the best to start with. As it seems abundantly clear my c1 is the main source of compression, even in dynamic positions. I guess we’ll have to see.
Just to be double sure, having your c1 trimmed cost 5k? Apologies if I’ve asked this already but was it one or both sides he did?
I just find 5k very good value considering Dr T charges roughly 40k for fusion surgery.
If I’m spending 10k to have my styloid out and c1 shave from two different surgeons, I don’t think I can complain too much!
Hey! Thanks for your concisely put recommendations, it’s appreciated.
Unfortunately 1) I do not have an official letter confirming a link between the compression and symptoms i’ve been experiencing and deux, my styloids are on average around 2.7cm long… So it’s concerning that he needed a second opinion from his colleague about styloid length, as I am certainly within normal limits. Doesn’t sound like he goes by the beat of his own drum to me, it’s as if he’s a bit unsure with eagles related pathology diagnostics and lacks flexibility with his thinking. Styloid length seems to be the be all and end all with him. That’s so 2016!
Best of luck with the cold calling, would love to hear how that goes.
I had Rogan Corbridge say that I was borderline based on the imaging I sent him, didn’t pursue this as I ended up seeing another ENT at Cleveland Clinic who said he wasn’t interested in styloid length, looking at my imaging etc, as he strongly felt my response to a nerve block was the greatest indicator of whether surgery was necessary or not. In the consultation, he spent the majority of the time discussing…my imaging…
I am considered a surgical case by Dr Heim, I’ve been in contact with his admin and they’ve produced a quote and fee I would need to pay to get the surgery date going. All I need to do is find 12.5k, this includes 5 days in hospital which I think is roughly 900 euros per day. If I can somehow work out how to get the surgery done and then just nip out the hospital window a couple of hours later I might only pay 8k or around that figure
Horos looks impressive and similar to Radiant on windows. It looks to me that on the right side of the first image your c1 is the main source of compression, no?
Hi, yes I paid c£5k to Mr T to trim C1. Only stay in 1 night. He also cut left styloid on unplanned basis as was compressing JV during C1 trim. But not normal for him to do that. C1 trim alone is easy to recover from so if that is your main issue then I’d trim those first but not in your shoes so hard to tell. Good luck. D
On styloid length, it didn’t seem to be a deal breaker, more just that he likes to know the lengths for due diligence or some reason. I think essentially VES is new to him so while he is willing to help he’s coming at it from a familiarity with standard ES.
Given that his surgery is much cheaper than Dr Heim maybe it would be worth the consultation fee to see? Not sure.
As for C1 Vs styloid… Yes Dr Higgins certainly thought I had C1 involvement and was moving towards recommending Axon do a C1 shave and styloidectomy. Higgins is on pause for the foreseeable it seem now though. So the only other option for C1 shave I know of without going to the USA is Mr Timothy. He told me he had done around 5 when we spoke in 2020, all as part of a spinal fusion procedure. I know he’s done more now, but given
his relative lack of experience with the procedure,
the unknown long term effects of the surgery on stability etc.
the more seriousness of the surgery (I think?)
I’m happy to try styloid first and see if it gives some relief. If it gives partial relief then I’ll feel more optimistic about going for C1 as well
Yes, I think that makes perfect sense. It’s much more uncertain how shaving the C1 will effect things down the line due to a lack of long term studies.
I think you’ll find this paper a particularly interesting read due to your brain fog symptom and to me at least, it gives a pretty compelling case to have the c1 trimmed. Decisions, decisions…
Good to know. Was it one or both sides? Many thanks
I saw a post of yours talking about red light therapy with Thor, have you thought of buying a cheap but reliable red light pad to trial?
Also, have you read up about LIPUS, being Low intensity pulsed ultrasound? That can be helpful for post surgery inflammation and breaking up scar tissue formation.
Based on my experience of C1 trims with Mr T (without & then with fusion), I would not worry about doing that, provided it’s clear C1 is a major factor in your JV compression problems.
I have used photobiomodulation since 2017 and do have devices for home use too. D
@jimjammer123 - I would have a chat w/ @TheDude as I think he had his first round of ES surgeries w/ Dr. Heim & then needed revision surgeries out of country to take care of his vascular compression.
@jimjammer123 I think there might be something else at play here. Based on the 2 slices you posted here, I do not see severe Styloid or C1 compression that would produce all these dilated veins & collaterals (Cyan circles). And if you pay a careful attention to the color of the right IJV (Red arrow) and Collaterals (Cyan circles below C1), you will notice it is brighter than the left IJV which is indicative of in-flow rather than the normal outflow of the IJV. This leads me to believe that there is some kind of Jugular reflux through right IJV and Collaterals possibly caused by central compression or DAVFs (though I can’t prove this with the limited images you shared and need to examine the whole CT to actually determine).
Do you have facial pain, breathlessness sensation, neck/face swelling, tachycardia, temperature changes and blueish lips. Normally the Jugular Veins and Collaterals carry blood from the brain/spinal cord to the heart but in cases where there is central compression/obstruction such as brachiocephalic vein/Vena cava compression, the blood refluxes back to the Jugular vein and back to the head area causing facial pain, breathlessness sensation, neck/face swelling, tachycardia, temperature changes and blueish lips due to deoxygenated blood backing up to the veins of the head and neck. You will also get all the IHH symptoms along with it.
I hadn’t surgery with Dr. Heim but I saw him in 2020. That time he had only done a few ES surgeries and very few revision surgeries. Additionally he didn’t recognize vascular ES that time. So I decided for Dr. Samji instead. Unfortunately there the jugular situation didn’t improve either. Eventually Dr. Samji agreed/recommended to see Dr. Hepworth for the right side surgery, where I had my last surgery in Aug '22. Since then things are slowly improving again.
But I wish I found Dr. Heim before my surgeries with the other doctor clowns here in Germany. I think if it wasn’t revisions i would have done the first surgeries with Dr. Heim. Since then Dr. Heim seems to recognize the vascular variant more. He definitely tries to remove the SP as close as possible to the skull base. Unfortunately he has no team of vascular surgeons involved in surgery. But ive learned that the most important is the liberation of jugulars from scar tissue on the outside.
Dr. Heim also only does one side at a time and you will have to stay there in hospital for approximately 5 days. Total cost for self-payment is about 9k Euros as far as I remember.
First of all, just want to apologise for the slow reply, I’ve been not functioning very well for the past few days and wanted to be able to respond when I felt a bit perkier.
Your observations are very interesting and if possible I’d like to send you my imaging via google drive so you can get a closer look at what you feel you might be seeing. Would that be ok?
I don’t know if these symptoms would match up, but they are cognitive decline in pretty much all aspects of cognition from verbal fluency, memory recall and processing ability, visual snow, occasional eye floaters (like little moving fairy lights), apathy, ear fullness, occipital neuralgia on left side, pressure sensation at base of skull and behind nose, shortness of breath, resting tremor that gets worse with exertion like practically every other symptom, constant sympathetic overactivation & pulsatile tinnitus. So just a couple of symptoms…
Hi @jimjammer123, your symptoms are familiar to me and can be caused by venous congestion. So I suspect couple of things. One is central vein compression (brachiocephalic vein/Vena Cava compression) causing reflux back to the brain via right Jugular Vein & Deep Cervical Veins AKA Collaterals. The other one is DAVF and is usually visible on MR Angiogram (MRA) and DAVFs can arterialize venous system and cause venous hypertension. They also show up as hyperintensities on the veins. Either way these 2 issues can cause a lot of cognitive issues along with with typical IIH symptoms.
I will be glad to look into your Scans (CT, MRI…etc) to see if I can spot the tale tale signs of these 2 issues. for DAVF, it is better if you can get me contrast MRA/MRI. If you have a good upload speed, you can use this site (https://www.dicomlibrary.com/) to upload you images anonymously (it strips all personal info from the images before uploading). It also has a brief (5 min) tutorial on how to quickly share it.
By the way, our friend @DogLover did suffer from central vein compression (left brachiocephalic vein compression) and had similar symptoms. Based her profile, below is her symptoms. You might wanna take a look and compare with yours.
I had a look at the link and it says " Do not upload files with information written on image!" Unfortunately my CTV at the very least has my personal info on the imaging. If it’s ok with you of course, could I possibly get your email via PM and send it via google drive instead?
I’d also like to point out that I know @DogLover personally and for one I can confirm she is in fact a huge dog lover! But yeah, a funny coincidence that you would reference her story to mine.
I have the following:
full body MRI with contrast (9-12 months ago)
MRA with contrast of both upper limbs and neck (done about a month ago or so)
, does he take into account any nerves, muscles, etc that could be affecting the flow of the jugular vein in surgery? Did he say how many of these surgeries he’s performed?
