I’m really interested in learning more about Mr. Axon, as he seems to be one of the most experienced ES surgeons in this forum, and one of the few that combines C1 resection with styloidectomy in the same procedure.
I have a bunch of questions, and I thought it would be most efficient to gather them all in one thread:
How long does it usually take to schedule a private appointment with Mr. Axon? (I heard that the waiting period through the public NHS is around 40 weeks.)
Does Mr. Axon personally perform the C1 resection, or does he have another surgeon that performs that part of the surgery?
If necessary, does he perform jugular ballooning during the procedure?
Does he monitor the jugular during the surgery (ie: indocyanine green dye injection)?
Does he perform nerve monitoring in the surgery?
Does he visualize and remove any soft tissues that may be constricting the jugular?
Is Dr. Higgins involved in these surgeries at all?
Can anyone estimate the number of combined styloidectomy + C1 resection procedures Mr. Axon has performed?
Here are some comments from old threads, and questions about them. If anyone knows the answers, please let me know:
@Jules, do you happen to know what the new testing protocol is?
@Jules, do you think it’s possible for me to have my scans done in Australia? I’m not sure how feasible it would be to get them done at Addenbrooks since it would require another international trip.
@IJVCompression, is Dr. Higgins still on pause? Also, could you let me know what specific tests Dr. Higgins performs? Is it just a catheter venogram to show IJV stenosis? Is there something special about the way that Dr Higgins performs the venogram that satisfies the special requirements? Lastly, if I can’t get those tests done with Dr. Higgins, would it be possible to have them done in my country?
@julia, do you have any idea why these tests were necessary? What does a lumbar puncture have to do with VES?
@julia, I’m curious why Mr. Axon was unwilling to assist you?
@PatientD, could you please provide more details? Did he follow up or suggest surgery back then?
@Brige, do you happen to know which specific procedure Mr. Axon performed to address the pulsatile tinnitus?
Hey @Dontgiveup, @Aleabee, @M_UK: I heard you guys recently had surgery with Mr. Axon and thought you might have some answers to the above questions.
Thank you all! I understand that not all of my questions may have answers, but I thought it was worth asking just in case someone might know. I’ve tried to read through all the old threads, and I apologize if I missed any answers. Thanks again!
@M_UK & @PatientD have answered pretty much all your questions I think! I only saw Mr Axon through our NHS, he wanted the CTs done at Addenbrooks so that they were done his way, but whether he’d change that for someone travelling internationally idk…If you were to see him privately then all appts would be at Spire which is the private hospital in Cambridge, Addenbrooks is the NHS hospital, & it seems to be at Addenbrooks that restrictions are being instigated. He mentioned I might need a lumbar puncture because he suspected IH, but after seeing the obvious IJV compression bilaterally he decided it wasn’t needed. He doesn’t balloon or monitor the jugular in surgery, but does monitor nerves.
Yes, he and Mr Axon work on this as a sort of double team, Higgins does the imaging and Axon does the surgery. As I understand it from talking to other doctors and patients (so take with a pinch of salt…) their work is under review as the hospital wants to be sure these surgeries are the right thing to do, and understand when to do them etc. Apparently that review is maybe halfway through, and has been going on for around 2 years. But I’m sure timelines could vary a lot.
Also, could you let me know what specific tests Dr. Higgins performs? Is it just a catheter venogram to show IJV stenosis?
He seems to like to do: CT Venogram from head to heart to get a good look at the blood vessels; catheter venogram with pressure manometry to get a real time look at the blood vessels and assess pressures at various locations (including across any narrowed/squashed veins) - this may also include venoplasty where he uses a small balloon to force the blood vessel open and see if it helps; lumbar puncture to check pressure in the dura - and he drains off some cerebrospinal fluid to see if lowering the pressure gives some symptom relief.
Is there something special about the way that Dr Higgins performs the venogram that satisfies the special requirements?
I don’t think so. Some doctors in the US will have the patient move their head/neck during the catheter venogram to see if that changes any compression.
Lastly, if I can’t get those tests done with Dr. Higgins, would it be possible to have them done in my country?
Possibly, I think it is a procedure that is done for other reasons.
If you want more info I’d highly recommend reading Higgins’ research papers on the topic (available on Research Gate). There is also a facebook group with some helpful resources including a list of specialists and folder of research papers:
Hey everyone! I just wanted to express my gratitude for your incredibly detailed answers and the additional information you provided. It’s been immensely helpful, and I truly appreciate it. You’ve really helped me gain a better understanding of the whole situation.
I also hope that your answers can assist others who are considering Mr Axon as a potential option for their treatment.
@PatientD, if you don’t mind, I have one final question for you. You mentioned that Mr Axon might remove the entire transverse process. I was wondering where you came across this information. Did you find it on this forum or elsewhere? I’m quite interested in reading more about that particular topic.
@Isaiah_40_31@Jules , you made an excellent point about Spire possibly offering a different experience for patients.
@IJVCompression, thank you so much for the comprehensive information on the testing and the additional reading material. I’ll definitely take some time to go through it.
@M_UK, I can’t thank you enough for sharing all that valuable information. I wonder, out of the few hundred surgeries, how many involved C1 resection? I took a look at your fantastic 3D renders of your pre and post-surgery CT scans on the forum, and it was truly enlightening. It’s amazing to see how much your IJV opened up at the 9 months scan.
Once again, guys, your responses are super appreciated! Thank you so much!
I understand that Mr Axon has some new restrictions imposed on his NHS practice (mentioned to me by other medics). I believe this May be partly attributable to patients having entire transverse process removed & not doing well. But I did try to search for any negligence court cases against his NHS Cambridge hospital long ago but was unable to trace anything. This might be due to case being settled before court proceedings. I don’t know. So I have no written proof to share. But my prior warning not to remove entire C1 transverse process is a valid one I believe.
I forgot to mention that Mr Axon charges £12k another member told me. Which I think is higher than some others charge.
That said he is a recommended expert on removing JV compression & Queens Sq did recommend him. He just would not help me (& others). I saw him privately. My NHS GP referral did not get me any diagnostic or therapeutic help to date. D