First surgery scheduled Mr Axon

It has been quite some time since I last posted and a few more conditions diagnosed, but I finally have the first styloidectomy surgery date in four weeks time. As a re-cap, I first noticed things were not right in 2015 with a strange tickling and gagging sensation when I pressed an area of my neck. Since that time I have been diagnosed with bilateral elongated styloid, bilateral superior semi-circular canal dehiscence, hearing loss, poor venous outflow ( due to a strange shaped skull) and raised intra-cranial pressure. I experience vertigo, dizziness, Autophony, Tullio’s phenomena, pulsatile tinnitus, tinnitus, temporary loss of peripheral vision, chronic pain and fatigue. I also walk as if I am under the influence of alcohol, have wobbly eyes ( no idea how else to explain it) and I stumble and fall regularly. The symptoms are so bizarre and difficult to explain. I was referred to Mr Axon in August 2018 and since that time I have had MRI, CT’s, VEMPS, lumbar puncture, and catheter venography with balloon dilation. Mr Axon has said that he is conducting research into a cohort of people who have what he thinks are ‘linked’ conditions. Namely Eagles, raised intracranial pressure and SCCD. Although research is in its infancy one hypothesis is that the elongated styloid have contributed to raised intra cranial pressure which in turn has eroded a thin bone in the inner ear and resulted in a Superior semi-circular canal dehiscence. It has been difficult to unpick all the symptoms to reach a diagnosis and decide on a treatment plan as there is some cross over between the conditions and their symptoms. But, it is likely that I will need both styloid removing, resection of the transverse process of the C1 vertebra, and superior semi-circular canal obliteration. I describe my life as currently on hold.
I have not been active on here much as, to be honest, I have felt quite anxious and low in mood about things and I had given up hope of a resolution any time soon, but now with a surgery date I have perked up. I understand that one surgery will not resolve all symptoms, but it will be interesting to see which symptoms are resolved and to what extent. It seems a bit weird to say that I am looking forward to the surgery, but I am.
Anyway- I thought I would post, first with an update which might help anyone else who has coexisting conditions, especially some of the more bizarre symptoms such as Tullio’s. You are not going mad, they are real!
Secondly to make a pledge that I will make notes of the surgical journey which might help any one else. And thirdly, to anyone who is struggling with their symptoms or with associated mental health issues, I want to say, keep on going on.
Take care all x

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Aleabee,
All I can say is WOW!! What a journey you’ve been on! I’m so glad Mr. Axon has helped you unravel the threads of your health challenges, & I’m excited that your first surgery is coming up soon. I agree, it will be interesting to see which symptoms are alleviated after that surgery.

Intracranial hypertension has been noted in most of our members who have jugular compression so getting the pressure off your jugular vein(s) so they can reopen should stop that problem. The fact that the IH may be affecting the inner ear is very interesting & makes sense. I’m glad Mr. Axon is looking into that via research.

I hope you don’t need the C-1 resection, but we have seen C-1 jugular compression being a problem for some of our members after their styloidectomies. In the US, it’s difficult to find surgeons who do that surgery so if you need it, I hope there is someone near you who can take care of you.

If you don’t mind sharing your surgery date, Jules & I will be sure to pray for you then. In the meantime, I hope you’re finding interesting ways to occupy yourself while your life is on hold. That is a hard place to be, but it doesn’t have to be boring. :sunflower:

:blush:

So pleased that you have a surgery date! What a difficult journey you’ve had, and a very long one, so I hope that surgery will begin to make a difference for you. It certainly did for me, even just with once styloid out, but your situation does sound more complicated- a really good step forward anyway!
The worst part I found after surgery was having the drain in overnight; very uncomfortable & impossible to sleep, but definitely worth it! Mr Axon used a pressure bandage around my head & ears- not something most doctors use, so be prepared for that. Lots of info about what to expect after surgery on here if you need it.
I hope it’s not too long to wait for the surgery!

Dear Isaiah,
Thank you for your message. Surgery date is 17/11/2021 and yes please to any thoughts and prayers on the day. I just looked back on my posts from August 2018 and I don’t know if you recall, but I had been scheduled for surgery then at a London hospital. The approach which was planned was intra-oral and more of a ‘fracture and leave in-situ’. Thanks to this forum I raised some questions with the consultant and chose not to go ahead and it was then that the referral was made to Mr Axon. I have had some moments of doubt that I had made the right descion, but 3 years later, a whole lot more information ( and diagnosis) and I feel it was absolutely the right thing to do. I have not yet received the letter with the details ( it was a phone call with the appointment date), but I am making an assumption that the first surgery is on the left side which is the more straight forward side ( no resection of the C1 required) and that the right side ( resection of C1 needed) will be done next. Then after that obliteration ( horrid word) of the SCC. Mr Axon has said he will do all the surgeries and I think the resection will be done with Mr Higgins?. Do you know why it is difficult to get a surgeon to do the resection in the US?
As I live alone with my teenage Son I was thinking that I should stay with a family member for a few days after surgery. Is it usual to need a bit of help for a few days?
Thanks again for your words and I will stay in touch this time
A

Dear Jules,
Thank you for your reply. The pressure bandage sounds really attractive! I was just about to look at the site information about surgery so that I know what to expect. I have read bits before, but its kind of abstract when a date is in the distance. I shall keep posting.
A

A good idea to stay with someone, you may well be a bit wobbly from the surgery for a few days.
So pleased that you didn’t go ahead with the surgery in London, you could’ve been so much worse off, although obvs it’s been a long wait for you!
Not too long now, hopefully you’ll be in & done before Covid stops the elective surgeries…

WOW! What a great decision you made to skip that first surgery in London! As Jules said, you would most likely have been worse off, plus, the other things you now know of would have been overlooked. You’ll be a whole new you once everything is repaired! Just know there is a challenge ahead with healing after each surgery. Prepare yourself to be patient with your body & realize there will be ups & downs during recovery with the end point being up & with you feeling so much better. Nerves can take up to a year to heal though generally it’s quicker than that.

As far as the C-1 surgery goes, I’m not sure why it’s hard to find doctors who do it here except that it’s considered a very difficult & risky surgery & most surgeons don’t want to take those risks. I’m glad you have excellent & skilled surgeons attending you.

I put your surgery date on my calendar & will pray for you for sure!

:blush:

Hi, I had my left styloid removed by Mr Axon 8 weeks ago, everything has been fine.I am on his list to have my right side removed.I was really looked after well at Addenbrookes, I hope all goes well for you.

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So glad to hear you’re doing well, Jan! I hope the second surgery turns out equally well, even though it’s a ways off.

Thank you Isaiah, I’m sure that he will do the other just as well :blush: and I know what to expect now.Hope you are well.

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That’s great news !

Dear @Jules and @Isaiah_40_31
I have been to Addenbrookes today for my pre surgery assessment and I have been told that instead of left styloidectomy on the 17th November, I am scheduled for right styloidectomy and resection of the transverse process of the C1 vertebra. I knew that this type of surgery was ‘on the list’, but I had assumed this would be at some point in the future and that the left styloidectomy would be done first. The nurse who did all the pre op tests did not know much about the surgery just that I would stay in hospital for 4/5 days and that I will need some help when I return home as I may not feel well for a while. I am now full of anxiety.
I will E-mail Mr Axons secretary tomorrow and see if I can have some more information, but I thought I would ask you if you knew any forum members who have had this type of surgery and that would be willing to have a chat. I have no idea if I am making plans for help for a few days ( once home from hospital) or for longer. I need to find someone to look after my child and I probably need to get organised with freezer food. I just want to be adequately prepared and not have to worry about things.
I’m feeling a little bit unprepared for the change in plan and a little in the dark. Any information is gratefully received!
Take care
A

@Aleabee,

I can’t speak for Jules, but in the US getting the C-1 TP resected is very rare. I don’t currently know of any doctors who do that surgery though I’m sure there must be some. We have a number of members who need to have the TPs of C-1 reduced to end vascular compression but I don’t know of anyone here who’s found a doctor willing to do the surgery. Hopefully if any of our members knows more, they will post info for you.

For the ES surgery itself, it’s nice to have someone around to help for 4-5 days. Since the C-1 adds a deeper level of invasion into your neck, so your neck/head range of motion may be more limited & most likely you won’t be able to lift much weight for awhile. Thus, you may need help for a week or more. Doctors project what they think healing times will be but recovery truly is an individual process with each person’s body healing at a different rate. Mr. Axon or his secretary may be able to give you a better idea if you don’t get some advice from here.

I’m so glad your surgery is soon so you can start recovering. I put your surgery date on my calendar so I can be praying for you. :hugs:

Thank you so much Isaiah. Take care A

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Hi there just wanted to say there is a woman in the eagles syndrome Facebook group who had both sides done at once and had her c1 resected as well. I believe her doctors name is Dr. Ji so you can search his name in the group there and hopefully connect with her. Like Isaiah said it is rare for surgeons to do it here in the USA. Not sure why.

I needed help for about 4 days after surgery. I couldn’t really drive for about a week. No lifting really for at least a week, but maybe longer with the c1 involved. I was able to chew fine but it helped to have someone around to make food for me and to drive to get me stuff that came up that I needed. Good luck!! Hope you get more info soon.

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Thank you Blossom

That’s very strange, the change of plans, & good idea to talk to Mr Axon’s secretary to get more of an idea about what’s involved…I had my surgeries with Mr Axon, but it was just the styloidectomy & not C1 resection, so recovery I’m guessing was easier. I was just in one night, with a drain in to reduce swelling as I said earlier, I presume you’ll have that too. I found lifting hard for a few weeks, so depending on how old your child is & how independent they are, that may be uncomfortable for you. I can’t think of any one else whose had the surgery, all I can say is that Mr Axon has developed his surgical technique so he doesn’t need to cut through muscles, which I believe makes recovery easier, although I don’t know if the technique will be the same as the C1’s being resected as well…
I’m sorry I can’t be more helpful, it’s not something many members have had done though.

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@Jules and @Isaiah_40_31 Thank you both for your replies. I have had another spanner in the works. I received a phone call from Addenbrookes today and I was asked if I would be willing to have the surgery for semi circular canal dehiscence at the same time. So, my understanding of the proposed surgical plan is: Styloidectomy right side, resection of the transverse process at the C1 vertebra right side and Semi circular canal dehiscence surgery left side. This has taken me by surprise as I had thought combining surgeries was not ok. I wonder if the medical secretary has the details wrong and there is a miscommunication because the rehab time after the surgery for SSCD is long and unpleasant and that’s without having a Styloidectomy and resection of the transverse at the same time. On the other hand, having only one general anesthetic and the possibility of getting things resolved sooner might be a good way forward. I am incredibly lucky and I feel grateful that there are surgical options and that after such a long journey there is light at the end of the tunnel, but I also feel ill-equipped to say either yay or nay. I have stated, very clearly, that I cannot make a descion until I know exactly what the benefits/risks of having combined surgeries are. I have trust and faith in the surgeons, but I really need a little bit more information. On the up side, I have heard back from a couple of friends and they are willing to come and stay for a few weeks ( in shifts) so that I can have help if I need it. I really appreciate this forum. I think you have to experience Eagles to actually understand the complexities and the bonkers symptoms. None of it really makes sense to others. Anyway- hopefully I will have more information about the surgical plan over the next few days as surgery is literally on the 17th.

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WOW! It’s pretty crazy that they keep adding major work to your surgical plan, Aleabee! BUT, as you said, it would be good to get it all done at once & put it behind you. On the other hand, I totally understand your concerns about recovery & dealing w/ the diverse post op pain & other symptoms all at once.

How great that you have friends who can come help you! Sometimes it “takes a village”, eh?!, to give us the support we need in a hard time. That must add some comfort level as you go into your surgery.

:heart:

Goodness, that sounds alot! Given NHS waiting times, there’s a definite advantage in getting it all done at once, but obvs you need to get more info to make an informed choice…I don’t know much about what’s involved in SSCD surgery, I think it has been mentioned on the forum as an alternative diagnosis to ES/ something that’s been tried instead of ES surgery, so you might be able to get info from past discussions.
Susie who has started a discussion today has had C1 resection as well as ES surgery & is having her 2nd surgery the day after you in the US; you could message her about what to expect from the surgery, here’s a link:
Surgery scheduled soon - General / Eagle Syndrome Stories - Living with Eagle
Good that you’ve had offers of help though!