My name is Ryan and I am from sunny Sydney in Australia!
Over the past few months this site has been a great help to me, more from the emotional/psychological point of view.
In November last year I was diagnosed with bilateral internal jugular vein compression due to elongated styloid processes. It has been a very scary few months, especially as I struggle with bad anxiety anyway. The symptoms have been very difficult to deal with and have also tested the patience of work, partner etc as I have struggled to understand what is happening. I am constantly worried I am going to suddenly drop dead.
Anyway, I have had two great specialists working on my case and on Wednesday just gone I had the right styloid process removed. I am yet to have the follow-up scsn and appointment but was assure by the surgeons thaf everything went well. They really analysed and prepared for the surgery well and I am very grateful to them.
However, despite feeling better in some ways I am still quite dizzy. I am on a course of anti-biotics for which dizziness is a common side effect. I guess I just wanted to ask if post-op dizziness (3rd day in recovery) is common? There is no swelling and I can eat OK and no headaches really- just dizziness.
Hi, and glad that your surgery went well! Hopefully things will settle down- if you’ve just had the one side done, then you’ll still be having effects from the other side. I had bilateral jugular vein compression both sides, and had a lot of dizziness too, along with some other scary symptoms- I did feel a lot better after the first surgery but still had some effects from the other side. It may be also that the vein takes a little while to spring back and work properly if it was badly compressed- my doctor said that stenting might be needed although there’s quite a few risks with that, so he didn’t recommend it, and luckily my symptoms have gone now. It was a long time before I could lay on the worst side though without feeling bad. Although you may not see any external swelling, there might still be some internal swelling which could still compress the vein too.
Hopefully things will settle down; 3 days isn’t long really. Hope that things improve for you!
Days 3-5 post op are the period when most people experience peak swelling from ES surgery. It took me a couple of weeks to be able to function somewhat normally & 2 months to feel practically back to normal. This was true for both surgeries as I also had bilateral ES. You have had major surgery (believe it or not!) & need to be patient w/ your body. Listen to it carefully. Rest when it says rest & take it easy even when you think it says “go”. Swelling & pain can be revived by doing too much too soon after surgery.
Glad your surgery went well & that you found surgeons in whom you have confidence.
Welcome…I am 3 weeks post-op today I was bilateral vascular too!
I am not sure if what I am feeling is really what is going on, but I think the post-op swelling in my neck is pushing on my my vascular system similarly to when the bone was there during certain head turn/tilts. If so, I expect it to go away in the next few weeks.
Happy to answer questions - as I am just in front of where you are in the process
Am back from post-surgery appointment with ENT specialist. Due to ongoing dizziness and confusion etc. I need to have a special contrast MRI in 3 weeks. He said he may need to do the other side, which would be good.
Being the anxious person that I am I am worried that I have developed a brain tumour or something.
Did the ENT do another CT like you thought he would? Also did the Dr ever do an Ultrasound Doppler to see if the Internal Carotid Artery is flowing properly? That is a test that was done on me.
I have had an MRI and multiple CT and neck venogram scans prior to surgery, and I have booked in a special MRI in a couple of week (as per his recommendation) that will test the blood flow in veins as well as my brain generally. Apparently this test is more detailed than the ultrasound venogram.
If you have a look in the Doctors Information category, there’s the latest list of doctors who are familiar with ES. There’s a Mr Stassen in Dublin Dental Hospital- the details/ website are listed on the spreadsheet for him. Hope this helps!
Hey @retrorock ! I’m sorry you are experiencing dizziness.
I’m ten weeks post op from second surgery and still get dizzy once in a while. For me it seems to be related to head position and swelling. I hope it gets better, but perhaps a journey of what you were doing and how you head and neck were positioned would help?
Thanks @MusicGeek I am actually starting to suspect some neck/spinal issues, as I am having pins and needles and some involuntary jolts. Since November 2016 I have had the following tests:
An MRI with contrast last November
A CT Neck Venogram
A jugular vein ultrasound
A Head Pressure test (they inserted a tube in my groin and fed it through to my brain, and yes- I was fully awake!!)
A second CT neck venogram with contrast last month
A second jugular vein ultrasound
Four or five blood tests
An ECG
4 Neurological muscular, balance and dizziness tests
The only things the specialists have said along the way is Vascular ES. Despite this I still have some dizziness, and the tinnitus in my right ear is a little worse than before surgery.
My posture over the last 5 years or so has been terrible. In November 2016 I was also diagnosed with Degenerative Lumbar Disc Disease. I think maybe there are issues with my neck, upper back too.
By far and away the worst part of the ongoing symptoms are not the symptoms themselves, but the anxiety surrounding it. That is something I need to work on as a matter of priority.
Do you have your second surgery on your radar, or are you hoping for your symptoms to subside a bit before you go “under the knife” again? I do agree w/ what Jules said early on - your symptoms from the remaining elongated styloid/s-h ligament can get worse after your first surgery. It is a possibility that part of your current symptoms are a result of what hasn’t yet been removed.
This is meant to provide you comfort, not worry. If your current symptoms could be put at bay by the second surgery (which I know no one can promise), I’d get it scheduled sooner rather than later. That said, I truly have no comprehension of how bad your current symptoms are so maybe surgery is not a good idea at this time.
Praying for you to have “peace that transcends understanding” & not anxiety!
“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your heart and your mind in Christ Jesus.” Philippians 4:6-7
I was bilateral vascular too!