I had the surgery last Wednesday which in itself was a bit of a rollercoaster but regarding recovery I think I’m doing quite well all things considered.
On the day of surgery it looked like after sitting in a waiting room for 5 hours it would be cancelled. In fact Mr Axon actually told me the surgery had been cancelled at 3:15 then at about 3:25 one of his assistants rushed in to say a bed had just become available and they could go ahead.
The surgery apparently went very well. It took longer than expected as my transverse process was ‘very large’ and took a while to fettle it back to where it needed to be. But they were happy with how things look following a CTV and it seems no obvious damage occurred to any nerves or blood vessels. Of course I’m desperate to 3D render the CTV to do a before and after but haven’t managed to get hold of the files yet so it will have to wait.
The day after the op I felt like my nervous system went a bit haywire – I felt quite wobbly, lots of sensations in my head and got a low fever temporarily. Interestingly though, very little pain although they did give a double dose of Fentanyl. I was discharged later that day and since then my system has slowly started to calm down.
Since then I’ve slept a lot and now by day 5 have a lot more energy and am up and about. The pain in my right shoulder has gone. The previous pain and catching sensation in the right side of my neck is also gone, just some surgery pain now and a slightly numb right ear.
The main symptom I seem to have at this point is dizziness which I believe is quite common due to nerves around the ear being moved around and irritated and also due to changes in cerebral blood flow. Those who have had similar surgery I’d be interested to hear your experience regarding this.
I continue to take it easy, keep taking the Paracetamol and Ibuprofen to stay on top of the pain and hope for the best. Will keep you updated as things progress. Take care
Great that you did get the surgery in the end, must’ve been pretty stressful waiting all that time! I’m pleased that you’ve got more energy, & some of the ES pain has gone…swelling seems to peak for many members about days 3-5, & I know Mr Axon uses a drain to help with that, but there could still be some swelling causing dizziness? It’s still early days too & anaesthetics can take a little while to get out your system…I didn’t have dizziness after surgery but it does vary for everyone. I presume you’re still sleeping semi-upright?
Can you chew & eat okay?
Really pleased you’ve got it done, with all that’s happening with Covid at the moment it’s good timing!
Don’t overdo things, keep taking it easy
Hi Jules, Yes I had a drain and I’m sleeping propped up. The pain really hasn’t been too bad so far and I can chew and eat fine. It’s interesting you didn’t experience the dizziness after surgery, I’ve read a few people who have experienced similar to me. I wonder what the mechanism is that causes it? There seem to be a few theories around nerve irritation, changes in cerebral blood flow, inflammation, anaesthetics/drugs. I’ll ask Mr Axon when I see him in a few weeks. Anyway thanks for praying and I will take your advice and take it easy!
Such great news that you’re doing so well, M_UK! I expect you’ll continue to gain energy, & symptoms will continue to gradually go away. I agree w/ your assessment that your dizziness could be from the new blood flow from your brain & Jules’ suggestion that it could also be from post op swelling. Could also be coming from medication side effects. There’s another member who had surgery last Monday & she had some trouble w/ dizziness about the same number of days after surgery that you have it. Hers is gone now.
I don’t envy the roller coaster ride you had getting into the OR but am so glad it all worked out ,& you’re on the healing end of things now. I look forward to hearing how your healing progresses.
Thanks Isaiah for your encouraging words and for praying for me too. It’s reassuring to hear of others who have also experienced the dizziness and then it’s gone.
Thank you for updating us on your surgery, I hope you continue to recover, and all your post surgical symptoms go quickly. Also, I hope the surgical procedure has eliminated the pain you were experiencing from Eagle Syndrome, it sounds like you are well on the road to recovery. Take care.
Welcome, NurseAng1! I hope you’re finding good & helpful information on our forum. How is progress going for getting an appointment with a knowledgeable ES specialist? I hope you’ve been able to find someone near you.
M_Uk glad to hear you are somewhat improving. The tortoise beats the hare 9 times out of 10. There’s even a book about it!
Dizziness can be caused by all sorts of things. When I get bouts of it I do what’s called Brandt-Daroff Exercises. You basically lay down in different positions until it goes away. This helps if the internal ear crystals are out of each and need to be calibrated.
I think I have the answer for the increase in dizziness, and head pressure since surgery. Basically whilst the styloid and part of the C1 transverse process have been successfully removed, the right internal jugular vein is actually more narrowed compared to before surgery – see before and after CTV renderings below.
This is obviously frustrating but explains why I’ve been feeling like I have. At the moment I don’t know why this is, maybe post op inflammation or some kind of response to trauma in that area? However it shows there was no placebo effect. When discharged from hospital I was told the surgery was successful, that’s why I was puzzled to have worse dizziness and head pressure. It wasn’t until a couple of days ago I got my hands on the scan files and saw things for myself.
It actually turned out Dr Higgins was the doctor who reported my CTV after I was discharged from hospital. He noted the RIJV was more narrowed than before surgery but did not elaborate why in his report. He tried to call me yesterday but I missed his call (so frustrating) and he’s not easy to get hold of calling back. However I hope to speak to him next week to discuss this observation further.
For now I just need to sit tight and let my body recover some more. Hopefully the IJV will open up on its own accord as things settle; maybe another angioplasty or stent will be needed? I have an appointment with Mr Axon in the New Year and will be pushing for another CTV to see how things look then. I wanted to share at this stage as I said I would once I’d rendered the CTV and also I think it could be an important finding in terms of what is going on with so many of us. We are complex!
That’s weird! I hope that you get some answers from Mr Higgins &/ or Mr Axon soon…Mr Axon did mention that stenting could be needed, but I was lucky & mine opened up okay. Let’s hope it’s just swelling & it settles.
I noticed the lower section of IJV is no longer distended as it was before surgery which is a good thing. Members w/ IJV compression have noted it can take several weeks to a month + for their vascular symptoms to noticeably start disappearing. I agree that what you’re seeing, M_UK, could be a result of post op swelling. You had a lot of surgical intervention in a very small area so I expect your body has placed fluid there to protect everything while it heals. Unfortunately, that protective cushion will apply pressure, until it is reabsorbed, which can maintain symptoms rather than allowing them to reduce.
I am glad that you have the surgery and it was success and I am wishing the lingering issues will clear in time. I am not doctor nor do I know what is really causing the new narrowing but having seen many academic papers on neck dissection operations and their impact on the weak walls of the Jugular Veins makes me agree with Isaiah and Jules that it could be post-operation swelling.
My assumption is that since muscles surround the jugular vein they might have been moved or dissected during the C1 shaving/drilling and were stitched back together after the surgery. This can hypothetically cause temporary compression of the weak wall of the Jugular Vein. In the previous CTV, the Jugular Vein segment below the narrowing was not compressed and the pressure outside and inside (intermural pressure) was equal. But if that pressure is somewhat unequal, the Vein can easily collapse and appear narrowed. To put in perspective how weak the walls of the IJV is, on standing up, jugular veins collapse under force of gravity to more than 50% of their supine diameter. So in theory, swelling could exert outside pressure to collapse them significantly.
I hope this new narrowing will diminish as the swelling subsides and the blood flow will improve. Just give it a time. I really doubt that all of sudden something new is compressing it that needs another intervention. Even scar tissue can not compress it that long. Wish you quick recovery!
BTW, I still see the collateral veins are compensating (typical of jugular compression) and not significantly improved after operation due to probably the swelling-induced compression. I also marked light blue lines along where I assume the swelled muscles might be compressing the Vein. Arrows pointing to the Collateral vein.
Thanks for sharing those insights. That study on neck dissection is very interesting. I will be getting another scan in the New Year and it will be interesting to see what has changed after the swelling has had a chance to go down.
Thanks for posting it. It is interesting that almost half (46%) of the patients who went through lateral neck dissection have post-operation narrowing of the IJV but the good news is that after three months that decreases to 10% which if they do not improve could be treated with endovascular procedures such as stenting. I have seen many folks here complain about dizziness & head pressure after the operations. I wonder if that is partly due to swelling of the surrounding muscles compressing IJV and temporarily raising the intracranial pressure. Also as Isaiah pointed out many times, there could also be valgus nerve involvement.
I think the post op swelling is most likely the culprit for post op dizziness & head pressure, & as you noted, those along w/ inflamed muscles in the surgical area could be continuing to compress the IJV once the styloid is gone. Three months sounds like a long time for that inflammation to resolve but it’s really not in the scheme of things. There is much micro healing that has to go on after an ES surgery as well as the macro. The body protects the healing tissues by surrounding/filling them w/ fluid to create a protection “cushion” around them. When it senses tissues are healed, the fluid is reabsorbed over time & pressure & symptoms are gradually relieved.
Hi, I am sorry I haven’t replied to your message, only just seen it. My husband is the person affected by Eagle Syndrome, not myself. However, I am obviously very interested in this condition. I hope to gain as much knowledge and support as I can from this forum, and hopefully, find the best surgeon possible, a to perform the surgical procedure in order to alleviate the pain and discomfort my husband is suffering. We live in England.
If you can travel @NurseAng1, please get an appt. for your husband w/ Mr. Axon. He is the most experienced ES surgeon in the UK. He has helped many of our members who are from there. I hope the information you read on our forum helps you understand the causes of your husband’s symptoms. Jules wrote a couple of long posts with lots of information about symptoms & causes, etc. Here are links so you can easily read them in case you haven’t already:
Mr. Axon’s contact info - •Mr Axon, Addenbrooks Hospital, Cambridge (Otolaryngologist/ Skull base surgeon, very experienced with ES surgery, special interest in Pulsatile Tinnitus. Also does private work at Spire Lea hospital, Cambridge, for Spire Health care. Also works with •Dr Higgins, Neuuroradiologist at Addenbrooks) 01223 256052 – his secretary
