Post 1st Surgery

I have recently had surgery by Mr Axon and in my follow up I mentioned my other side. He said that he rarely operates on both sides. He was more interested in compression symptoms than classic Eagles. Anyone been in a similar situation ?

I am under mr Axon currently. Did you have jugular compression/vascular symptoms or more classic eagles symptoms?

He was happy to do my second side, never any mention that it was rare to need both sides doing, that’s strange? He said he didn’t do both sides at once, as it would be too much, but was happy for me to go ahead with the other side, as both were compressing the jugular veins.

I had ear pain for 2 years but the last 6 months I had compression symptoms. I went privately because of covid and being desperate. I live in Wales so complicated to get referral on the nhs to Mr Axon. He did say really I should have had an appointment with Mr Higgins for compression tests but he could see how much pain I was in so agreed to take the styloid. I told him I have started with symptoms on the other side tinnitus fullness in ears. He said lots of people have that I rarely do bilateral !

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Hi Natty04
I only realised about 6 months ago that my other symptoms were caused by IJV compression. I’ve had all sorts of weird symptoms but it was the severe ear pain that made me seek help. I think I’m just typical of many other cases in that I’ve been seen by 9 consultants and in the end paid for a private CT scan. A maxofacial Consultant ordered a CT with contrast which showed the compression. When I think back I’ve woken up with a headache for the past 5 years. Mr Axon is very interested in compression and pulsating tinnitus.

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Sorry to hear about the pain you experience

I can relate to the long road and numerous symptoms

Do you have compression bilaterally? Which side has he taken out? Has the surgery helped at all? Sorry for all the questions.

I have bilateral compression from styloids and c1 but my symptoms are slightly worse on my left although my right side is more compressed

Symptoms have always been worse in left side. Compression symptoms are better. The pulsating down the left side of my body has gone. Unfortunately I still have some nerve pain. The styloid was only 3cm but it was fully calcified and thick so I think it pulled my jaw back and squished the nerves in front of my ear. My jaw is starting to relax but I have a spasm in a nerve so am going to see my pain doctor for some treatments to calm the nerves down. That’s the only trouble it has had 2 years to cause problems so things don’t always bounce back. You will be fine with Mr Axon just hope you don’t have to wait too long

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Sorry just seen this. I hope your pain doctor can help you with the nerve issues

Can I ask in your earlier post you said mr Axon said lots of people have that… Did he mean lots have bilateral ear fullness & tinnitus?

I have my follow up Friday :grimacing: I just want to be out of this hell.
I feel so spaced out and drunk all the time and my neck and shoulder, upper back pain has been off the charts today :cry:

Hugs for you, praying for a good outcome Friday & for things to ease in the meantime…:pray:

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Thank you Jules. Will keep you all posted :sparkling_heart:

It’s the pulsating tinnitus that Mr Axon is interested in. If you have got obvious compression he will help you. The trouble is everything takes so long. Good luck let us know how you get on xx

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Caz1,

I encourage you to self advocate. If you have symptoms from your other styloid, let Mr. Axon know you REALLY need to have it removed. You can also tell him you know of other patients on whom he has done bilateral ES surgery & that it really helped them. He may only do it rarely, but that doesn’t mean you have to “buck up” & just live in pain. I hope he’ll help you if he knows that you’re miserable.

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So sorry for your pain/other symptoms, Natty04. I hope your appt went well yesterday.

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Thank you for your thoughts :smiling_face_with_three_hearts:

Although mr Axon was nice, I still felt like I had to prove that this was my issue still. He said he can clearly see the evidence on the ctv and coupled with the high velocities on the ultrasound seemed a compelling case and likely my cause.

However this is still not enough for him to warrant surgery without proof from the catheter angio. And that in some people this just maybe all a coincidence and then I started second guessing that maybe the styloid and compression is nothing to do with my symptoms. But then I think we’ll that would be a hell of a big coincidence. But who knows

He said if the angio shows a pressure issue in the vein then he will operate on the main jugular to get that opened up.

Also wants me to get a beta transferrin test for my nose drip, which I will do.

He said that some people are jugular vein
Dependant and need them to be open and flowing but in others it doesn’t matter if they are occluded as they use other vein routes to drain the brain etc.

He said Ppl that are dependant will hear the whooshing. Which I do intermittently.

So now on a very looooooonnnnggg waiting list with Mr Higgins for angio

Not sure how to feel about it all but trying to be patient. What’s another year of this eh!

Thanks for all of your support. As I said before I love this group :kissing_heart:

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found your post Natty, hope the wait for Dr Higgins might be quicker than you think :pray:

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So sorry that you have such a long wait again…he’s obviously changed the criteria for doing ES surgery or something, doing this extra testing wasn’t needed for my surgeries 5 years ago :frowning:
Maybe he’s done some surgeries which didn’t give such good results, who knows? Just very frustrating for you. Is there any way you could afford to pay privately to see Mr Higgins first, & then have the testing done on the NHS? It would skip some of your wait?
Thinking of you :hugs:

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Natty04,

Oh my goodness! How disappointing! I agree w/ Jules that doesn’t seem to be the way Mr. Axon used to “operate”. I’ve seen changes in Dr. Samji’s modus operandi since I had my surgeries almost 6 years ago. Only the doctors know why they make the changes they do. Too bad it isn’t always in a direction that is beneficial to the patients.

Do they have cancellation lists in the UK or is that unique to the US i.e. if they do, you can ask if you can get placed on one in case someone cancels. Perhaps you could get an earlier appt that way if private pay isn’t an option.

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Yes I think things have changed now. First Covid has delayed things but also there is a much more rigid procedure to follow to get surgery approved. This was agreed with NHS management to allow Dr Higgins and Mr Axon to continue what they are doing. Also they seem to be in much higher demand now. Unfortunately this means the waiting times are long. I was put on the list for an invasive Venogram in March and still do not have a date. It is possible to do the private route but you can’t switch from private to NHS to save time. You can do this but you join the back of the queue (this is actually what I’ve done). The alternative is to do it all privately but to do all the stages and surgery on both sides costs about £30k. Stents would be extra. So without insurance it’s very expensive. Sorry to be the bearer of bad news. I just want people to know the reality so they can prepare themselves or decide to spend the money. Good luck!

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Thanks for the info! I didn’t know about switching from private to NHS- my husband’s done this when he had a heart problem as the wait was ridiculously long & he could’ve had a heart attack in the meantime, he had a consult privately & then op on NHS, but maybe things have changed…
Sorry that you’ve had to wait so long, Covid hasn’t helped. Hope that you hear soon, best wishes.

Thanks Jules

Yep very frustrating to say the least but looks like his hands are tied

Any patients that have pressure issues as opposed to classic eagles will have to have further investigations with Mr Higgins

The fee to see Higgins is £850 for initial consult and then would have to start all over again on nhs like @M_UK has said

I will just have to hold tight and whether the storm

My main concern is this being untreated for nearly 3 years now and the last damage on cranial nerves

My eyes never had this pulling/sucking feeling behind them in the first year and now it’s all the time

Thanks for your support as always

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