I wouldn’t be surprised if the extensive collateral veins you have were/are irritating your occipital nerves & making them more sensitive to cold wind/water. I think you may also be correct about the nerves desensitizing to some degree after being irritated for so long.
I’m glad you finally were able to meet with Dr. Aghayev & that his opinion pretty much agrees with what we’ve noted in your imaging. I know it won’t be as convenient for you to travel for surgery but I agree with everyone else who’s responded that getting your surgery done the right way the first time will be far more ideal than having to consider a revision surgery(ies). You are important & taking care of yourself the best you can is very important!
I’m glad that you were able to have a consultation with him, and that he seems pretty certain of the treatment you’ll need…it would be good if your neurologist would watch the video but they might still be dismissive!
I guess now it’s saving for the surgery then?
To be clear - I haven’t had the online consulationen with him yet. I only received a oneway monologue with him talking about my picture. Apparently the online consultation with him costs 200dollars, which I might pay even though i don’t see the necessity.
@jules you mentioned in your questions for surgeons to ask for nerve monitoring. Dr. Aghayev only uses special nervemonitoring when doing revision (due to scar tissue making it more difficult). But it sounded on the assistent like this was due to it not being necessary for the “easy” firsttime operation… Thoughts? Do you know if Dr. Axon does it differently?
I’m struggling to figure out how to talk with Dr. Axon, as I’m not elligible to book an appointment through Spire Healtcares website. Does any of you folk from the UK know how foreigners is supposed to get in contact with him? When I wrote his secretary I got a autoresponse telling me to mail “cambridgehear@gmail.com”. I did, but the price for a online consult here was 750GBP which is crazy. Is there any other way? Is it a different hospital I should contact to get a different price? I’m confused
Others have had online appointments with him from abroad, @Hamela has recently, hopefully others will give you information! That sounds a ridiculous price for a consultation…
Mr Axon certainly monitored the facial nerve with my surgery, & I saw a TV documentary where he was assisting with a skull base surgery & was showing the monitoring & technique to avoid the facial nerve as it’s very delicate…Dr Aghayev is a very experienced surgeon so maybe he’s confident enough in his ability to avoid it? I would feel more confident having it monitored, but it’s something hopefully if you had a consultation with him you could ask? Surgeons have different techniques for this surgery- Mr Axon uses an incision behind the ear, I don’t know where Dr Aghayev does the incision, maybe he avoids where the facial nerve is?
Seems like a simple enough thing to do, but I don’t know that it really changes much during surgery. My facial nerves were monitored during surgery, but it didn’t prevent the temporary loss of function on my right side. I could not blink, smile, or essentially move the right side of my face after surgery, but we knew the nerve itself was still intact. It’s called neuropraxia and should be expected to some degree when working around the cranial nerves close to the skull base. Fortunately my loss of function was short-lived and I could blink and smile again within about five hours, though some people have a longer recovery. I would do it again in a heart beat to relieve the horrible symptoms that resolved since surgery.
Sounded on the assistant like Dr. Aghayev also does the incision behind the ear (as this was the easiest way to allow removing the styloid to the skullbase)
Thanks for letting me know!
Dr. Aghayevs assistant also mentioned that most people gets “irritated” nerves after surgery, which is acceptable and fine - I didn’t really understand whether this could be better avoided with nerve monitoring or not though…
I think nerve monitoring mainly helps the surgeon identify the nerves and know in real time that they are still functioning during surgery. I’m not sure it completely prevents irritated nerves or temporary neuropraxia though, especially when operating that close to the skull base where the nerves still need to be manipulated and moved around a bit to access the styloid safely. My understanding is it probably reduces the risk of accidentally damaging a nerve, but temporary irritation from traction/swelling can still happen even with monitoring.
I am not sure I understand or answer your question properly: I am Canadian and I booked an appointment with Dr. Axon over the phone at Nuffield hospital in Cambridge. I found a general phone number on the website and I was able to talk to an appointment centre. Later on Dr. Axon’s personal assistant emailed me to schedule a virtual appointment.
I guess I will try calling some of the different hospitals then and see if the price is less than 750 pounds somewhere
Did you get an online consultation with Dr. Axon going over your scans - and in that case may I ask how much you paid? Also - did you choose him because of your pulsating tinnitus? (I don’t have tinnitus and therefore not sure whether to choose Dr. Axon or Dr. Kamran Aghayev)
Also - did Dr. Axon do both sides for you? I hope you are seeing some progress and I’m sorry to hear it isn’t working out perfectly yet - I hope that time will make the rest of the symptoms go away or improve atleast
Mr Axon only does one side at a time, so if two surgeries are needed that means increased costs & hassle with travelling, so getting them done in one go, although a harder recovery would be easier for you coming from abroad…
That is true. That is another argument to pick Dr. Kamran, especially since I could be “lucky” if I have a quick recovery (I’ll likely get surgery in July) that it will not effect my studying next semester. If I only got one side done this summer, I would basically have to wait until next summer for the second surgery, if I don’t want it to definitely affect my studies - I wouldn’t be able to take 2-3 weeks out midsemester without it being difficult to pass the exams…
Now I have spoken with the relevant local surgeon (not just by email). She is definitely not up on IJV, and is not convinced it is ever really a problem. Anyway, she has cut styloids around 20–30+ times, most of them transorally, but some during other surgeries from the neck (to get them out of the way). A few times (probably 4) she has performed external styloidectomy with the goal of removing them all the way to the skull base. I know that at least one of these “failed” (meaning they left 2 cm of the styloid) — but perhaps that was simply because there was no IJV compression present and they did not consider it important. Anyway, she wants to remove mine all the way to the skull base, she uses nerve monitoring, and she understands that it would be optimal for me if the styloidectomy resolves the compression (which obviously cannot be promised, as they are not going to touch the C1). She said she is open to removing any additional tissue found during surgery if necessary to aid decompression — however, I am not entirely comfortable with this, and since they are definitely not going to touch the C1, I think I would ask her to simply perform a clean styloidectomy. She also understands that I would feel compelled to seek revision surgery if the headache does not go away and the IJV stays compressed, as I would never be able to rule out IJV compression as the cause of my headache. In other words, she was kind, smart, and had fair reasons to be sceptical, as it seems impossible to find any proper evidence — a proper randomised, peer-reviewed meta-analysis with control groups — proving the necessity of full IJV decompression in a case like mine.
I would like to decide next week whether I am going to try a styloidectomy on one side for free with the aforementioned surgeon, or whether I am going to go to Dr. Kamran for the bilateral. Dr. Kamran said he was certain a C1 shave was needed to achieve full decompression. I don’t have a good understanding of how many patients actually achieve decompression from the styloidectomy alone. I also suppose there is a chance that my headache is simply from my aggressive styloid, and not from the compression. It is a really tough decision. It does not help that doctors outside of Scandinavia charge for procedures, which obviously makes me more cautious, as this creates a financial incentive — for example, an incentive to say that a C1 shave is necessary.
@Isaiah_40_31, you mentioned in another post that you had revision surgery to fully remove the styloid, which resolved your compression — is that correct? Did the revision surgeon determine during surgery that you did not need a C1 shave, or was that simply never part of his approach? I am also curious — given what I have just written, and having seen my CT scans — whether you would choose to try the free one-sided styloidectomy first, or go straight to Turkey to have the C1 resected (which Kamran says is necessary, though he does seem to recommend it for every IJV patient). It sounds like he has performed around 50 Eagle syndrome surgeries, which is definitely far more than the local doctors, who may have done around 20 transoral and 4 external, only some of them all the way to the skull base (which they would attempt in my case). Kamran said that he has succeeded 100% of the time in removing the styloid to less than 1 cm from the skull base, and that the styloidectomy itself is a fairly straightforward 15-minute procedure — whereas C1 resection is a whole other league.
There are loads of research papers on here about IJV compression, which are written by knowledgeable doctors, I think many mention that it is possible to be asymptomatic as well though with the compression. Unfortunately no doctor can say for sure which symptoms are definitely caused by ES, and which would be resolved by surgery, it’s unfortunate but the only way to tell is by having the surgery… If you listen to Dr Aghayev and Dr Costantino’s videos, I think they both mention that decompression with styloidectomy alone and not the C1 shave is rarely possible, but it has worked for me. However, everyone’s case is different and I was obviously lucky, that the C1 processes weren’t really involved (I presume).
I don’t know for sure, but I would think that Dr Aghayev has done more than 50 surgeries…
It’s a difficult decision for you, but it would be wrong for us to push you one way or another, we can give you info but it has to be your decision
Thank you for the response. I completely agree that research papers exist on IJV compression — I did not mean to suggest otherwise. My point was more that the available evidence, while valuable, mostly consists of case series, observational studies, and expert opinion rather than randomised controlled trials with proper control groups and placebo adjustment. I myself don’t feel uncertain IJV compression is actually the problem for many people and IJV decompression is the proper fix. In Denmark, the healthcare system is largely evidence-based in a strict sense, meaning surgeons are generally only able to justify offering procedures (as it’s for free) that are supported by high-quality evidence though. They just have too strict measures of what makes good high-quality evidence in my opinion, and that they should accept some uncertainty and accept that the IJV compression is likely a problem for me causing the headache.
So in a way, her scepticism is institutionally rational, even if it may not reflect the best available clinical judgment in actual cases where people like me don’t care about being 100% certain where the pain comes from, as I’m desperate to give it my best shot… which is exactly why I’m considering Dr. Kamran to be certain that no compression is causing my issues
Guess your right, even though I’m desperate to get pushed in some direction
