I am new here and wondering if anyone has had surgery with Dr Axon (UK) or Dr Sherif (Ireland)? Any advice or experiences would be appreciated greatly.
My CTA non positional shows no compression however my symptoms are all on turning my neck. The radiographer advised they don’t do positional scans.
CBCT a year ago picked up bilateral styloids 4.2 and 4 and as my symptoms have become worse I’m assuming they may have grown?
I am practically housebound now with the list of symptoms and so desperately want to find some relief.
I should mention I have been diagnosed with Hypermobile Ehlers Danlos and I suspect some instability as I have a bobble head feeling worse at times and Jelly legs!
I have spent years saying this to my neurologist and how I feel there isn’t enough space in my head like balloon being blown up too big inside my head. I was diagnosed with vestibular migraines and medicated but nothing helped.
I am wondering if I have IIH or a possible CSF leak as interesting last night I was at the sink and clear fluid just dripped from one side of my nose out of nowhere. I can’t recall that happening in that way before.
I am based in Ireland and there is a possibility I may have a virtual appointment tomorrow with Mr Axon if I can get my scan compressed so he can view it.
Lots of members have had surgery with Mr Axon and he is, in my opinion, the best in the UK for this. Use the magnifying glass (search function) and simply search ‘Axon’, or ‘UK’, or other relevant terms. You will get a lot of results and have to wade through them a bit, but there will be some detailed testimonials. Dr Sherif has a few results, I didn’t read them in detail. Hope you are able to do that appointment; keep us updated and please let us know what else you need.
Thank you so much for your reply Andy and this gives me great confidence. I do now have a confirmed appointment for tomorrow and it can’t come soon enough to finally speak with a consultant who understands ES especially after 10 years.
I will certainly look up for more information and for now I need to think of what I need to ask tomorrow.
I had surgery with Mr Axon a few years ago, he was really helpful & my surgeries were successful. I hope that you can get your scan to him in time! Mention the vascular symptoms you’re getting & definitely mention the pulsatile tinnitus as he’s done lots of research into this so hopefully will be interested. Let us know how you get on!
@Evey - We’ve had one other doctor mentioned today in the UK who has done a successful styloidectomy w/ IJV decompression - Mr. Wilson whom @NxJane saw.
I offer this on the slim chance, Mr. Axon doesn’t offer to help you.
Her posts are in this discussion:
Clear fluid dripping from your nose could be a CSF leak especially because you’ve had IH for so long. CSF has a distinct metallic, salty taste. Did you notice that when your nose was dripping?
Prof Sherif Sultan has co-written a research paper about ES that we have linked among our Research Papers. I don’t know how experienced he is w/ IJV decompression surgeries though.
Hi @Evey - interesting description of what’s happening n your head! Bi describe mine as feeling like it’s filling up with cotton wool. I too, had the (erroneous) diagnosis of vestibular migraines years ago, along with basilar migraines and trigeminal neuralgia - all wrong. I saw Mr Axon who suggested I saw a spinal surgeon - a year later am waiting a SPECT ct under Neurosurgeon - facet arthropathy? Mont spurs and ES with c1/2 being most problematic…. Waits are long, drs don’t agree and surgery seems hard to get justified. If you have insurance or the means, you can go private, the nhs route is hard, long and elusive.
I had planned virtual appointment with Mr Axon yesterday however sadly it had to be cut short as he wanted to see the scans properly and I am posting them to him. The screen sharing wasn’t helpful and he wanted to look at it properly and I’m assuming a 3D version.
I had sent so much information scan results and my symptom list and he asked what my main symptoms were and based on this doesn’t think it’s ES.
I was quite deflated last night to say the least as after 10 years I though I might finally find answers.
I just have to wait and see if he can access the scans I have sent today.
That’s interesting you have had a diagnosis of Vestibular migraine also. Did they treat it with anything?
My appointment with Mr Axon was cut short as he needed to see the scans properly and the screen sharing wasn’t enough. However he didn’t feel that my top symptoms were ES . So I just have to wait for my scan to get to the UK and allow him review it. My styloids a year ago were 4.2/4 and I feel more symptomatic since then so I wonder have they increased in size.
What are your symptoms? So sorry you are waiting and not knowing and feeling dreadful it’s really dreadful.
I’m sorry that the appointment wasn’t helpful, really frustrating…maybe when he looks at the scans he’ll change his mind… If you want you can upload your scan here & we can look & show you things, although you have already got the report confirming that the styloids are elongated…
Sending you a virtual hug
The vestibular migraine was the very first diagnosis by ENT probably over 10 years ago I was sent away with amitriptyline and never followed up. The amitriptyline did not help at all and I think I got better spontaneously. Fast forward to 6 years ago and felt pretty well apart from a painful right shoulder injury hi h was diagnosed as impingement syndrome and I had 2 cortisone injections which helped. That year I had an elective repair of a large paraoesophageal hiatus hernia. Felt pretty good and went off on holiday in the summer. I lost part of a left molar filling but apart from that, all good. I ont go into every detail as too long and boring but when we got back I went to the dentist and was persuaded to have a crown instead of a filling. The problems started then and continue to this day except each month worse, gradually till now, I can’t fly, don’t dance any more, don’t go to Pilates or evenings out and live in constant and never ending pain.
Like you Mr Axon didn’t feel that ES was my main problem and obviously no one wants surgery that is not needed if something else is more pressing. I’m still waiting for a SPECT CT for the neurosurgeon to decide what to do. I also have probable EDS but no one is interested in finding out let alone making the connect between all the issues. My main issues are neck and head pain, occipital neuralgia, dreadful migrainous headaches, odd bouts or nausea, reflux, abdo pain, ear pain, jaw pain, swallowing is like a car riding over a speed bump, tinnitus and infection of the left jaw side every 2 months or so. I’m ready to give up tbh. The vestibular migraine was basically a throw away diagnosis like many others like fibromyalgia and “all in my mind”….. good luck xx
@Mcwelly so sorry that you are going through all this and I can totally relate. It’s draining trying to sift through consultants trying to find the root cause.
10 years ago same thing diagnosed with vestibular migraine by my neurologist and given Amitriptyline and I have tried multiple other serious drugs without success. Occipital nerve blocks, Botox in my head and neck 33 injections and I had a dreadful negative reaction for about 10/12 days.
A spine surgeon saw the disc issues C2/3/4/5.
I want to a dentist about possible TMJ and the CBCT scan picked up the styloids and so did the pain management consultant which Mr Axon said yesterday that pain management was incorrect he couldn’t have felt anything pressing on the outside.
Just to say I have been diagnosed with hEDS nearly one and half years now. It joined all the dots in my life and my daughter has been diagnosed recently also. I had to get a UK geneticist who deals with this to review me as there aren’t consultants here in Ireland.
I am pretty much housebound and unable to drive really with the dizziness on neck turning and the vision issues . I am but a shadow of who I was however I will not give up advocating for myself. I look forward to the day when I can do all the things I enjoyed once more .
@Evey - I’m so sorry your long awaited appt. didn’t help anything, at least not yet. Let’s hope & pray that once Dr. Axon sees your scan in person, he will change his mind.
You can convert your downloaded images into 3D using either radiantviewer.com if you have a PC or Bee Dicom Viewer app. if you have a Mac computer. Perhaps your husband can help you with that. Having images in 3D really makes a big difference in being able to understand what you’re seeing. CT slices are hard to interpret unless you’ve had training to do so.
This is the fighting spirit!! I’m so glad you’re willing to “battle on” to find the doctor who will help you. We will do our best to support you & provide whatever information we can that may assist you in this endeavor.
Hi @ Evyes, I had TMJ as a diagnosis for more than 6 mths with dentist and consults any missing the jaw and tooth infection - trismus and jaw pain were the symptoms rather than tooth.
I also had an occipital nerve block last year which made things worse.
How did you get your hEDS diagnosed? No one interested in even hearing about it here and I fear throwing another spike into the wheel of confusion and misdiagnosis that still hovers over me. Like you I have major damage at C1-6 and worse at c1/2, I guess that’s why PA didn’t see me as an ES surgery candidate plus my age (69). What is your next step? X
@Mcwelly my hEDS was diagnosed by Dr Anar Sagar from the International Gene Clinic in the UK. I had upright scanning done in Manchester at his request and also had a full gene panel done. It was my sister in law mentioned it to me that she thought I might have it . I had never heard of it until then!
It has answered a lot of questions and I am more vigilant now and Dr Sagar has written a letter stating should I need surgery that the anaesthetist is aware and they are mindful when moving me from the operating table due to the chance of dislocation. Other than that you just have to get on with it really and make sure I have a good team around me like cardiologists, physio etc. I was 55 when I was diagnosed.
Next step is to wait for Mr Axon to review the scan that I have posted today to him and see what his thoughts are . I have considered getting a second opinion from Dr Osborne also but
@Evey - a laptop or desk top computer are what you need to for radiant viewer or Bee Dicom Viewer to see the 3D images best. I can’t imagine trying to convert images to 3D on anything small like a cell phone, but I suppose it’s doable.
